Surviving Surviving

Good-bye and Hello

2009-07-30T12:13:00.002-05:00

When I was younger, my dad went fox hunting with his buddies. In Iowa fox hunting took place when the snow was often at its deepest. He often talked about how tiring it was to lift your legs to move through the snow. It left me wondering: what's the point? He explained that the point was the possibility of the hunt. The possibility.

I think the last few years of my life have been much like walking through the snow. It has been tiring and tedious and exhausting. At one point, in what seems like a different lifetime, all the possibility just went away, and it seemed the snow was covering me. Now I can only describe my life as saying the snow has melted some, the walking has become easier, and the possibility, the possibility is hanging there with each step. How amazing!

For the first time in my entire life, I feel a peace that I have never, ever felt. It is not that everything is perfect. Don't get me wrong. It is not that having one leg is wonderful all of the sudden because it's not. But for the first time, I feel defined by my life - all of it - not just having had cancer as a child. For the first time, I don't feel bitter and judgmental in the way I did, without even realizing it, in the past. I am still sarcastic and my humor may be biting at times, but I don't feel the harshness that was part of me before.

My counselor said something to me that really helped me turn the corner on this. She said, "I believe that people are, in general, doing the very best that they can." I have thought of her saying that every single day since then. When you look at others and life in this light, there is a freedom to breath and not worry about this constant need to help and change those around you.

As I look back on the year, I am keenly aware that each thing that happened, happened for a reason. This includes the most difficult times and conversations that I have had in my entire life. If I had to explain to other survivors of childhood cancer what has happened to me, I'm not sure I could even do it...put it into words - I guess this blog has been a testimony of sorts to that end. Mostly, I think that I had to come to this place - as everyone does - in my own time and in my own way. I am blessed to have family and friends who have stood by me as I found my way.

Today is my birthday. I am thirty six years old today. Thirty six! Holy heck! I never thought I would be this old. I really didn't. What an amazing blessing life is. As a birthday gift to myself, I am making today my last blog entry. I have had several people encourage me to keep writing because I have so much to give. I agree. I do have much to give, but don't we all? Really. Each of us has so much to give in terms of experience and empathy and love. Writing this blog, in my mind, keeps me attached in some way to the past year and all of the struggles it contained. I'm ready to move on.

Don't worry - I still will give in my own way and in my own time. You can check out my photography website: angiepembertonphotography.com, and I have a feeling you'll be able to see quite deeply into my heart and soul there! Thanks so much for your support and love. It has meant the world to me!

A Good Cleaning

2009-07-18T21:24:00.003-05:00

Ever since I have been sick this winter, I have not done much of anything around the house to keep up with my space. My office is one of my favorite places, but while I was sick, it became a dumping ground for all that didn't fit elsewhere...open the door, throw it in. Needless-to-say, it was a wreck. I mean a wreck.

I spent the day today, with my parents' and Nick's help, reorganizing my office, as it is going to be an important space as I start my photography business. I got a new computer, and I wanted to feel together, as I always do when my office is clean.

I found that cleaning the office was pretty therapeutic. As I have felt more and more like myself, I have found that little steps make it more so. I have started mowing the lawn again, for example, and that makes me feel like myself. Cleaning the office today was like saying, "That is over; on to new things."

I would have to say that getting my divorce was in some ways like a good cleaning. I don't mean to say that to be harsh or hateful. I spent a couple of years pretty worried about the mistake I knew I made. I don't really want to go into the details, because I don't want to share Bill's personal information, but it was a struggle financially, emotionally, and physically. We were in a constant state of flux as money, job, and situation was never on an even keel. Those who know me, know that this was terribly unsettling for me.

I never, ever saw divorce as part of my "plan." Who does, right? I had thought and thought about it, but I always pushed the idea away. I wanted to be married for Nick's sake. I wanted to be married because this thought always invaded my mind: could I do this on my own? After many discussions with family and my closest friends, I decided I had tried as much as I could try. Staying in the marriage was hurting me and Nick more than it was helping. I was embarrassed and ashamed, but mostly I felt at peace, and that is how I knew I had made the right decision.

Don't get me wrong. It was so hard, and without my parents and family, I don't think I could have done it. The first Christmas I had to drop Nick off at his Dad's just about killed me. I felt a hollow in me that I've never felt before. With time and compromise on both of our parts, it has become easier....never easy, but easier. I have always been a believer that Nick would react to his leaving much in the same way I did, so I always tried to act upbeat and positive. I told Nick I would miss him, but we'd be back together soon. He was only one when the divorce happened, so he's really known no different. That makes me sad, but I know many years later, that this was the right thing.

A long time ago, I mentioned that I would share a poem/prayer I got while at the asylum. The prayer really changed my thoughts on some things. I will write more about that tomorrow, but I wanted to share it with you and let you think about it first.

You are who you are for a reason.

You're part of an intricate plan.

You're a precious and perfect unique design,

Called God's special woman or man.

You look like you look for a reason.

Our God made no mistake.

He knit you together within the womb,

You're just what he wanted to make.

The parents you had were the ones he chose,

And no matter how you may feel,

They were custom-designed with God's plan in mind,

And the bear the Master's seal.

No, that trauma you faced was not easy.

And God wept that it hurt you so;

But it was allowed to shape your heart

So that in his likeness you'd grow.

You are who you are for a reason,

You've been formed by the Master's rod.

You are who you are, beloved,

Because there is a God!

Russell Kelfer

An Ex is Never Really an Ex

2009-07-16T21:51:00.003-05:00

Since we have been in Kansas City, I have had the "opportunity" to spend lots of time with Nick's dad, Bill. He is the score keeper/statistician for Nick's team, and so he is at all of the games. We have a very civil relationship, and our post marriage relationship is actually something I'm pretty proud of. I have never trashed Bill in front of Nick, and I don't think Bill has spoken poorly of me, either. We work out weekends and are flexible for Nick's sake. I'm confident this is part of what makes Nick the great kid that he is. Of course a big, big, big part of this is also Richard. He lets Bill be Nick's dad when it appropriate and always picks up where he needs to - this is not an easy balance to maintain...as those of you who are divorced and remarried may know.

I thought I would spend a few days writing about my relationship with Bill and how and why I ended up on the path I did with him. I remember the days around the beginning of our relationship with a sharp, sharp clarity that I wish would sometimes become more of a blur. It is in many ways painful and embarrassing. On the other hand, I can never doubt my time with Bill as "part of the plan," because it was through my marriage to Bill that I was blessed with Nick. So how can I say that it was a mistake?

I also know now that when I married Bill I did so for one huge reason: everyone else was getting married, this was my opportunity to do the same, and I was not going to pass it by. I just wasn't. In the beginning, Bill was hugely romantic - he sent flowers, notes, and made candlelight dinners. Perhaps this should have been a big red flag! : ) Do men really do these things? I was enamored by the attention. I remember making a late night run to Taco Bell with my friend and roommate, Emily, and she said, "I guess you guys will get married." It was very early on in the relationship, but we were at the end of our college days, getting ready to embark on the real world, and it just seemed time to start looking for a partner.

I really saw no reason not to marry Bill. He was romantic, funny, and doting. He was not particularly good with money, and there were times when I sensed he had a temper, but I was still not going to let this opportunity pass me by. Why? This is the embarrassing part: would there be anyone else out there who would want a person with one leg?

Hind sight is definitely 20/20 - or even better in this case. After I met, dated, and married Richard, I understood what true love, passion, and devotion were about. I knew what it was "supposed" to feel like, and I knew that I had settled with Bill. When people ask me why we got divorced, I usually say that it was because he had a gambling addiction that led to many other serious problems in our relationship and lives. I do not throw in the fact that I married him because I wanted to get married. I did care about Bill, and I did try and feel what I was supposed to feel. But underneath everything was a current of uncertainty, fear, and restlessness. In my mind was always the thought: "This was a big mistake." I pushed the thought out as quickly as it entered, but it always came creeping back in.

While we were at one of the games this weekend, one of Bill's college friends stopped to see Nick play. I had met her 13 or 14 years ago when Bill and I were dating. We had spent quite a bit of time with her and her then boyfriend. Seeing her caused me to get a sort of sick feeling in my stomach. It is the feeling I get when I think about that time in my life. It seems like it was only yesterday in some ways, but in others it seems like an entire different lifetime. I am such a different person now. In so many ways. I was friendly to Bill's friend, and she sat down and we talked for quite a while, although all the time I was wishing she would leave, and all the while I was wanting to look her in the eye and say, "Listen, I'm really not the person I used to be back then. I much more confident and aware and comfortable with me these days. I didn't settle the second time. I waited for someone I felt deep in my soul was the one for me."

Of course, I doubt she wanted to hear all of this, so I just let the thoughts roll around in my head. Richard kept looking over at me and smiling. He knew I was uncomfortable. As we were talking, another thought came into my head that I find there often: "An ex is never really an ex." Bill is my ex husband, but he will - for better or worse - always be a part of me, of my history, of my story, of who I am. As Nick's father, he is involved in our lives directly. I think I've spent a good amount of time and emotional energy trying to figure out a way to rid my life of Bill and of all the self-conscious, self-doubt he represents. The thing is, it never works. It is what it is. I am who I am. There is no denying it.

Here is a picture of Nick and his dad at one of the tournaments this summer. I took the picture for Nick...I think it's important for a kid to have pictures of his dad. For Nick's sake, I've always been civil with Bill. For my own sake, I've stopped fighting the fact that I got married for the wrong reasons. I've just said it and accepted it. I think now, I can continue becoming a better me.

Opportunity

2009-07-15T22:03:00.004-05:00

I know this is going to be a huge shock to some of you -- two posts in one day! Wow!

Actually, we are in Kansas City at the 12U USSSA World Series, and I've got a bit of time on my hands between games, so I thought I would write again. After today's games, we spent the evening at the pool. One of the parents BBQ'd hotdogs and lots of Gatorade was consumed! : ) As I was sitting there watching the boys play in the pool, I was thinking how great it must be for Nick to have the opportunity to be part of a team...doing something he enjoys.

I am a team person. By that, I mean that I love collaboration...of any kind, really. I love collaborating with friends to have a girls' night. I loved working as part of the counseling team at the high school where I worked.

This is one of the things that is hard for me as I start my photography adventure. I am sort of on my own. However, when I stop to think about it, Richard and I have really worked together to make it happen. He has redone the playroom, put in french doors to add natural light, and he has listened as I talked through a zillion issues.

We have been in KC since Sunday, we play tomorrow, and if we lose we go home. If not, we stay again. It has been fun and exhausting and expensive. But mostly fun. Good times together. Here are a couple of pics of Nick - one of him having fun in the pool and one of him making a play at first base.

Understanding

2009-07-14T23:48:00.022-05:00

Hello...I know, I know. It's been a while. I have been learning in my absence, however. I FINALLY learned how to post several pictures without waiting for download! It is pretty complicated, so I'm proud of myself - after hours of trying! : ) It hasn't just been the learning curve that has caused my lack of writing, however... This blog thing is really taking on a weirdness for me. I want to write, but I find myself strangely detached from this blog. Hmmm.....

I heard a song in the car today that struck a chord:

I've dealt with my ghosts and faced all my demons
Finally content with a past I regret
I've found you find strength in your moments of weakness
For once Im at peace with myself
I've been burdened with blame, trapped in the past for too long
I'm movin on...

This is from the song, "I'm Movin' On" by Rascal Flatts. I guess in a way I have found it is finally time to move on from so much of what has burdened me in the past. I have realized that the "blame" I've felt about being sick was really put in my heart by my own negative thoughts and self-loathing. It seems obvious, but I'm finally at a place where I can feel and believe this is true. It is an amazing, liberating feeling that I never thought I would feel, quite honestly. I would love to shout from the rooftops to all survivors - of anything - that getting to this is possible.

I have also felt a special urgency lately to be the best mom and wife I can be - not in a pressure-causing sort of way, but in a way that makes me feel accomplished and ready to conquer whatever comes my way. This may sound very corny to some, and it may sound like I am on some sort of "high," but really it feels more like a deep sense of peace to me. Is everything perfect, aka hunky dory? No, of course not. I still get pissed about putting my leg on and walking in the heat and wishing I could do so much more. But the overall sense of myself and my past has taken on a whole new light.

I was trying to come up with what picture would go with this feeling. I guess it was hard to narrow it down. I kept coming back to our 4th of July weekend in Iowa. It was so great to laugh and have fun....do you do that often enough? I haven't lately...but I'm movin on!!!!

Nick switching from his baseball cap to something much CRAZIER!

Don't you love a good belly laugh?

Tucky singing and dancing..."I like to move it, move it!"

Sisters...Can't live with em, CAN'T LIVE WITHOUT 'EM!

Strike a pose!

Do you teach your kids to let go and LAUGH????

Boys will be boys! :)

Nothin' like some good lovin'!

Go out and have FUN with someone you love!

A Picture Says a Thousand Words...

2009-07-07T23:34:00.004-05:00

I have had an exciting and busy day. I launched my website today!!!! www.angiepembertonphotography.com. Check it out - especially if you live in Jeff City, but I would be willing to travel, of course! : ) I am busy checking off business "to-dos" and wondering if the growing list will ever end. I have felt productive today.

In the middle of the day, I had a therapy session. My counselor commented that I seemed happy and at ease - I agreed! This is not to say there are no issues - Pa-LEASE!!!! There will always be issues, I think. This is just to say I'm feeling better about the issues. We got to talking about photography (for obvious reasons), and we were discussing looking at pictures from when I was sick. I shared that my mom often took pictures of me in the hospital or in the hotel when we were in Rochester for treatment at the Mayo Clinic. Although some might say, WHY? I have always been so thankful for these pictures. This was a part of my life, and I'm thankful mom was not afraid to document it through photography.

So, I received an assignment from my counselor: take a picture from my past each day (or every other day), and look at it, write about it, and think about how it makes me feel. I have found that looking at pictures really opens up my memory to things I thought I had forgot.

Today's picture:

First of all, most people who look at this picture say one thing: "Oh my Gosh, that looks just like Nick!" What can I say, he looks like his mother!

This picture was taken in 1978, I believe. I was around five or six years old. I am sitting with one of my very favorite nurses, Donna....The really, really cool thing, is that I have had an opportunity to work with Donna as an adult, through the Children's Oncology Group, and I've been thrilled to stay in touch with her.

How does this picture make me feel? I feel like there are a thousand feelings rushing through me at one exact moment when I look at this picture. I am proud, happy, sad, nauseous, anxious, and scared looking at the picture. I am proud because I feel the picture really shows my strength and determination, and while I've talked a lot about not crying, not grieving my experience, I am also very proud that I was one tough cookie. I am happy when I look at the picture, mostly because Donna was there with me. As I've written previously, nurses have played a critical role in my life as supporters, mentors, and friends. I am sad when I look at the picture because I wish it wasn't so - having cancer, that is, and I feel nauseous thinking about sitting in one of those rooms, on a patient bed, getting ready to have life-saving poison run through my veins - poison that inevitably made me puke my guts up for hours on end. I am anxious and scared when I look at the picture because it reminds me of all the what ifs and unknowns in life. This happened to me. It could happen to anyone. It could happen to my son or anyone I love.

Donna and I both look vastly different today. I wonder if we are even remotely the same people we were back then. I know Donna remains committed to kids with cancer and to being the best nurse she can be. I know I am still one tough cookie! : ) One thing that I think has changed in me is that back then I often smiled because I thought it might make others around me feel better. I still do that today, but today I am so much less afraid of saying how I really feel, and for me that is AMAZING!

Becoming Me...

2009-07-07T00:03:00.002-05:00

I wonder if anyone even reads this blog anymore - after all, the writer is so very delinquent! : ) I apologize - again. I have had several comments about me not posting, but really, I've just been so busy. I am feeling very satisfied with life in general, and thus maybe I find less urgency to write in the blog.

I spent the weekend in Iowa with my family. We (Richard, Nick, and I) ditched baseball and headed north to eat, drink, and be merry! We had such an amazing time. Richard golfed for the first time in his life, I took pictures of my sister Vicki and her family, and we laughed and laughed and laughed. Richard and I also laid in the hammock and took a luxurious nap together. It was nice to get away and spend quality time together.

One of the things that came up several times this weekend was the subject of marriage. I have several nieces and nephews that are the marrying age. Many of them actually do have significant others. The girls were saying that they were ready to get married, but they didn't want to have to ask their boyfriends to get on with it. One said she dreams of him getting down on one knee....the whole traditional proposal thing.

I am learning more and more that life is so not what we dream it to be. I am also learning, however, that marriage can be even more than we imagined or pictured. It's not easy, but it's possible. Richard has taught me this. He and I have had many discussions about the fact that I have given up some of my old habits in my marriage to him. I drink less, spend less time at my parents' house, spend less time at bars and in socializing in general. It hasn't been as bad as that sounds - he doesn't have me locked in the basement or anything. It has just been different. He is in a very public position in the community, he is older, Nick has gotten busier, and so my (our) lives have changed.

I feel that I have taken on many recreational activities that Richard likes to do. I have become an avid fisherwoman, an antique nut, and even a bit of a homebody - which I would have never thought possible. I went to events when Richard was principal, and I tried hard to be a good principal's wife. Richard has been more set in his ways. He has humored me and gone places I like, but in general, we do his stuff because it's fun and easier when he is having a good time.

One thing I absolutely love to do, as you have seen in my writing, is spend time with my family in Iowa. It is no secret to my family, that this is not one of Richard's favorite activities. In fact, it is something we consistently argue about. It is not that he doesn't like my family, but he doesn't like to be away from home, without jobs to do, and he definitely doesn't like to chit chat. We spend hours just sitting around chatting, playing games, etc...not really his cup of tea. He does not mind at all if I go, he would just rather stay home.

To make a long story short, he did not really want to come to Iowa this past weekend, but he did, for me. The thing is, we had a really great time, and I did not ever feel like he did not want to be there. When he actually went out on a limb and went golfing, I just about died! : )

I guess my point in writing about this is to say that marriage is definitely not easy. I don't think a person should change who they are because they get married, but I think if a marriage is going to work, you definitely have to be willing to change - not because you have to or "else," but because you want to. Having Richard step up and open up this weekend, really showed me how much he loves me and wants to make our marriage the absolute best it can be. In return, I told him how I felt about what he did - I don't think people thank each other enough - and I will do my very best to return the gesture when the time comes for me to step up.

I am becoming me again - I can feel it. I feel a sense of calm that I have not felt in a long while. I have a renewed desire to get out there and achieve...I haven't had that for a long time. Tomorrow, I may feel down again, but even then I will feel comfortable in my skin and oh so grateful for my blessings! Isn't that what life is all about?

Things I Don't Like

2009-06-29T17:11:00.002-05:00

I don't like crooked hats....do you? If Nick wears his baseball hat in a crooked fashion, I immediately tell him to change it. Right now, I am watching a movie and Anne Hathaway has on a very stylish hat, but it's crooked - oh my! What to do? The thing is, I've been realizing lately that it's not just crooked hats I don't like. There are actually several things I don't like. Such as:

-mash potatoes with lumps (I was once forced to eat them, and I gagged)

-early morning

-cooked cabbage

-waitresses who forget if it was me or Richard who had iced tea

-a bad movie I paid to see

-people who bitch about all the crap they don't like

-elderly people who smoke while wearing oxygen

-the fringy things that hang on the car wash spinner thingies.

Before I continue to reveal my obvious freakishness, I will stop there. Unfortunately, there are many other things that bug me. Why do so many things bug me? This has been a topic with my therapist and also a quite vivid argument in my own mind. I have come to a few conclusions (now, these may seem obvious to you, but this has been quite revealing for me):

-I am judgmental - more judgmental than I would like to be and definitely more judgmental than my christian faith would have me be.

-Easy-goingness is part personality trait and part choice. I don't have it going for me in the personality department on this one, so I'll have to focus on choices.

-A good frame of reference: in the big scheme of things, does this really matter? and even more importantly, can I do anything about it? If the answer to these is no - time to move on.

This all looks fine and dandy on paper, but actually adjusting to this frame of reference is another thing entirely. Just like eating an entire bag of doritos, complaining, whining, and judging may feel oh so good at the time, but just as soon as you are finished, regret inevitably follows.

I am not writing this, so that people will write back and say, "It's okay," or "Really, you aren't THAT much of a bitch," but rather to share with you what I am personally working on and towards. If you see me snapping a rubber band on my wrist, it is probably because I have just been snarky to someone or at the very least about someone. But hey, I'm working on it! : )

I'm Back!!!

2009-06-25T22:50:00.003-05:00

I'm sorry for my serious delinquency in writing. I have been having some real ups and downs this past week, and I honestly thought about chucking the idea of the blog altogether. I have started wondering: is all of this blogging, twittering, facebooking "stuff" a vehicle for one to be self-absorbed and obsessive? I'm starting to think maybe. It's good therapy for me, though, so for now, I'm sticking with it.

There are so many things I could write about tonight....I have a gazillion thoughts running around in my already crowded head. Such as:

-self-doubt

-being judgmental

-swinging from one extreme emotion to the next

-photography, photography, photography

-Nick

-family

-trip to Iowa for 4th of July

-family

-the effects of the oppressive heat

-worrying about my health

-not wanting to go to the doctor to stop myself from worrying

-this blog

-family

-the book I'm reading, Handle With Care by Jodi Picoult

-the movie My Sister's Keeper - based on book by Jodi P. - out tomorrow

-family

Do you notice a repetitive theme going on here? Yes, I continue to be focused on thinking about my family - even though it is among a long list of other thoughts, concerns, wonderings. Still, it all seems to go back to family. And that's a good thing. A challenging thing but a good thing, none-the-less.

Have I told the story of my birth? Excuse me, our birth? It's a great story, and I've heard it many, many times. I've heard it so many times that the images I associate with it have been burned on my brain, and I think I actually remember it.

Amy and I, as I have mentioned, are the youngest of seven children. My parents were average, middle class citizens who were struggling through and yet enjoying life as parents of five children/young adults, ages 19-7. Why then, you might ask, would they embark on another pregnancy? Fate? Fate or blind luck or God's plan? Hmmmm....I'll go with God's plan.

Our conception and arrival were definitely a shocker for the family. When my mom announced at the dinner table that she was pregnant, our brother Jamie (nine at the time - I think), laid his head down on the table and cried. This is not my favorite part of the story, as I am sure Jamie must have been thinking: another kid around here? However, Jamie is a bit of a sentimental guy, so I like to think of his tears that night as tears of joy! : ) Yeah, right!

My mom tells the story most vividly of how she came to be pregnant for the sixth time. My oldest sister, Vicki up and moved to Florida with her steady boyfriend, Dean. Dean was a bit of a wild child/hippie/free spirit - you get the idea. Mom and Dad absolutely adore him today - all of these years later when his presence in our family seems an absolute perfect fit - but back then they say they were, well...worried.

My mom was so worried, in fact, that her "cycle was completely out of whack!" She describes herself as practically crazed - out of her mind, in fact - that Vicki had moved to what seemed like a world away. I know you see where this is headed. In her grief and despair, she was given a distraction by God: a baby!

Let me interject her that I cannot imagine being in my parents' situation. I think of how the world has changed since then, and how young and middle aged couples are so deliberate in their actions these days. 2.5 kids are planned out carefully as not to leave out proper time and resources for ballet and karate lessons and of course, the biggie, college tuition. Expectations revolve so heavily on creating the well-rounded, fulfilled child. I envy the "it will all work out" philosophy that couples with large families must have had back then. I am sad that so few people will have the experience of a large family as I have.

Anyway - back to the story. Mom's pregnancy was fairly normal, I guess. She was 35, almost 36 at the time she was pregnant. That is my age now - like I said, I cannot imagine it! She did say she was unusually large, and she could not eat enough to keep up her own body weight. She said she could see her ribs - sticking out behind her largely protruding belly. She said she was so large, in fact, that she could rest a plate on her belly and eat off of it! She wondered if she was having twins, but the doctor assured her that she was only having one, as he heard only one heartbeat....no ultrasounds back then, of course.

We were born on the 3oth of July, so I can only begin to imagine her misery in the heat of the summer. I'm not sure what she was doing that day. I need to ask her that - I really have only heard the delivery and post-delivery stories. After Amy was born, her stomach did not flatten out, and it was then, and only then, did she and the doctor realize there was another baby! ME! I know it will be a shock, but my delivery was complicated! I was a medical hassle from the very beginning! I was breach, and to make matters worse, my mom had completely stopped having contractions.

At this point, Dad says he was standing directly outside the delivery room smoking cigarettes as fast and furiously as he could. In the thirty one minutes between Amy's birth and mine, he claims to have smoked a pack - or at least he felt like he did. In a moment my mom describes as pure desperation on the part of the doctor, he put his hands on my moms stomach and literally pushed me out.

I may be overanalyzing things - as you know I am prone to doing - but I find it so amazing that in many ways Nick and I came into the world in such similar fashion. Nick was pulled out of me, while I was able to do nothing but pray, and my mom must have been feeling equally helpless as the doctor forced me into the world. I thought about my entrance to the world a lot when I was in the asylum, as well. The journey of our lives seems to be sprinkled throughout with consistent themes....is that by choice or chance? From the beginning and throughout my life has been filled with surprise, concern, one-in-a-million (or at least one in a few hundred thousand) moments and events that forever altered my journey and the journey of our family.

The next part of the story is also an interesting detail that seems to have been a beginning to a life-long pattern. Since I was a complete shock, when my siblings came to the hospital to see their new brother or sister, they were blown away to realize they had two new sisters. When my dad showed us to them through the nursery window, he said, "That's Amy and that's the other one." They had not picked out a name for me yet. Amy and I have discussed many times how our whole lives have been the same line over and over, "You know Amy, and this, of course is Angie," said with a tone implying, "the one with cancer."

Recently, Amy attended a New Year's Eve party in our hometown in Iowa. She said it was great to see people she hadn't seen in years. She did say she spent a good amount of the evening, though, answering the question, "and how is your sister?" She claims that even relatives in our family remember me long before they recognize her. When we were younger and up into college, this was a source of contention for both of us. Amy felted slighted by being my shadow. I felt awkward and angry about being in the spotlight. And one night, sitting in the car in a rainy parking lot on the campus of MU, we got it all out. We discussed it until we couldn't cry or discuss it anymore.

Someday I will write more about that night and about that discussion. It's a moment in time I don't want to remember and I don't want to forget. It's a moment in time that reminds me of the miracle of life and family and relationships and communication. Most importantly, it is a moment in time that reminds me of one oh so important and undeniable fact: we are in this together.

Ho Hum

2009-06-19T11:40:00.002-05:00

We are in Kansas City (Blue Springs, really), and we are already two games into the state championship tournament. We have won two games! We have had a sort of up and down season, so we are all really excited to be doing so well in the state tournament. It is Friday morning. We left our friends' house at 6:00 am to get to the ballpark in time to warm up for an 8:00 game. Now I'm tired, but I don't want to sleep and waste good girlfriend time with my friend, Angela. She has three little ones, ages 7, 4, and 2. Even though they are younger than Nick, he is still having a great time. I am sitting by the window, and Ican see them all in the backyard, running, jumping and laughing. How great!

I'm having too good of a time to write anything too serious here today.

I will say to all moms out there - isn't it wonderful to see your child do something he loves and even more, succeed at it! Nick has had two really great games, and I'm so happy for him to have success.

Until tomorrow.

Hot Summer Day

2009-06-17T22:13:00.003-05:00

Well, it was a hot, sticky day in Missouri, and I despise hot, sticky days! : )

I remember coming home from the Hampton swimming pool when we were young and being sun burned and tired - worn out from a day jumping in and out of the refreshing water and making regular trips to the concession stand for lemon heads and jolly rancher suckers. We were usually at the pool with friends or with our nephews, Jess and Ty. We rode our bikes to the pool most times. It was definitely a different time. Good memories, for sure. The one amazing thing about my memories of the Hampton swimming pool - and there are MANY, for sure - is that I don't ever remember feeling self-conscious or strange about being there with my scars, bald head, and eventually one leg. I think that's a very good thing.

We are off tomorrow to a ball tournament in Kansas City. We are staying with my best friend from my years at MU. I'm excited to reconnect...less excited about sitting in 110 degree heat! YIKES!

One thing I learned while doing my photo shoot today, is that good can come even when things seem rather hectic and disheveled! Miss Sophie was a character, and every time I looked her way, she would crinkle her nose up in a frown! So all pictures of her were taken on the sly! : ) I think the pictures and the kids are precious. Here is one of each of them - could have posted so many more! J. if you see this, send me a text to let me know what you think...If you remember how! : )

The Future

2009-06-16T22:42:00.003-05:00

I keep reminding myself of the saying my sister Vicki gave to me: the best thing about the future is that it happens one day at a time.

I think it is hard to develop a business and to embark on reinventing yourself without thinking about the future. I spent all day today thinking about my photography business and all of the tasks I need to complete to make it a successful, enjoyable venture. Inevitably, I find myself swimming as hard as I can against a sea of self-doubt. In the next moment I am feeling like, "yeah, I can do this." There are just so many darn what-ifs in life, and I think when you've been through a lot, like I have, you are always waiting for the other shoe to drop. It's hard not to think this way when the other shoe has dropped so many times. And it is exhausting fighting against the natural thoughts that come into my mind. As soon as I think something negative, I go into battle mode, fighting against that thought because if I don't, it just might consume me.

When I look back on my life, I am well aware that I never had my present situation in mind for myself. When I was just out of high school, I remember sitting with a friend, on her dock, late into the night, discussing where I saw myself heading. I told her then that I never really saw myself being a mom. I told her it just seemed so impossible. There were too many questions: Had the chemo left me sterile? How would I be pregnant and get around with one leg? How would I carry a baby? What would I do if I fell with the baby in my arms? How would I live with knowing my child was embarrassed of his mom with one leg? She encouraged me and told me that where there's a will there's a way. Still though, I doubted the possibility.

I try and think of my motherhood as an example of achieving more than I ever thought possible for myself. Very quickly behind that thought, comes memories of all of the trips to the ER over the past few years, with either Richard's or my health hanging in the balance. I certainly never expected those events either. Why does our mind focus so easily on the events that scare us and cause us to surrender our dreams?

The truth is, I have always wanted to be a photographer. A part of me thinks that the getting around part might be difficult. In my head, I choreograph how I would get around different settings where I might be taking pictures. I have no doubts that I am talented enough or smart enough. My doubt lies mostly in my physical abilities and in all the what-ifs that might get in the way. Will I have the will power to fight through those? I just don't know. I can feel myself gaining my strength and fight back, but having to fight through another difficult situation seems extremely daunting to me at this point. Richard keeps encouraging me and asking me, "Why are you so hard on yourself?"

Fear. I guess that's it. Fear of what might happen if I'm not hard on myself. Fear of what is up ahead...and harboring the idea that maybe if I think about all of the crap that could happen, then at least I'll be prepared and not be blind-sided. Logically, I know that it does no good to worry. Life happens. My heart won't let it go, though.

Tomorrow I am photographing my first baby and his toddler sister. I am so excited for this opportunity. I am way less nervous than I thought I would be, which is a good thing. Mostly, I am looking forward to being around people and for sharing my passion with them. After my session, I have a counseling appointment. I have lots to say this week, as it has been full of ups and downs. There are so many questions I wish my therapist could just answer for me. I know that's not how it works, though. I know the answers have to come from within.

I will post some pics tomorrow.

Crying

2009-06-15T23:03:00.002-05:00

Before I start officially writing today, I want to stop and say a word about my spelling and grammar. Considering I used to be an English teacher, one might expect my grammar and spelling to be meticulous. Not so, obviously. So to my English teacher friends who are reading, or to any of you closet grammarians out there, I am sorry. I cannot spill my guts and worry about punctuation. It is just too much. The burden is too heavy! : )

I wrote last time about not crying when they told me about amputating my leg. This has been an issue my counselor and I have talked quite a bit about. I feel awkward at times because I have a hard time crying in front of other people. There have been times when I have, but it is usually out of anger, not sadness or sentimentality. The only three things that consistently make me cry are seeing/hearing children sing, the movie Stepmom, and the ending of Rocky IV.

I know, I'm a freak! : )

I know if Richard read this, he would have a hard time believing it, so let me say that I do cry in front of Richard. He has never said, "don't cry," and I really appreciate that about him. Unfortunately, he bears the brunt of most of my crying - I guess all husbands have that pleasure to some extent. The past three years, with all of the trials and tribulations we have encountered, have brought on even more tears than usual.

When it comes to crying around other people, I just feel very, very uncomfortable. I do not feel uncomfortable if someone else is crying. In fact, I think I'm pretty good at listening, talking them through it, etc....(I guess I should be if I'm a counselor, for goodness sake!) Even when I was younger, other girls would be crying at movies, at 8th grade graduation, at the cards in Hallmark. Me - nothing.

Tonight I had dinner with some dear girlfriends from my teaching "family." One of our special group is moving out of state. Tonight's dinner was to celebrate her and to have a good gossip session before she leaves. We gave her a touching poem that one of our friends wrote about our group, and everyone was shedding tears. Not me. I did, however, cry on the way home, listening to music in the privacy of my car.

Because I am usually wondering what others are thinking about me, I wonder if others see this as a sign that I don't feel as much or care as much. This is certainly not the case at all. I think, though, that I do have a hard time expressing how I feel in words and "in person." I am great with writing. I have expressed myself many times in letters to friends and family and, of course, in this blog. But when it comes to speaking how I feel, it is much harder for me.

I have no problem speaking how I feel when I am angry. In fact, I have no problem crying out of anger, either. In fact, that is usually what happens when I become very hurt or angry. I cry. This makes arguments/confrontation very frustrating for me, because I am often a blubbering idiot. I wonder if so much anger comes out because I hold other things back....or maybe I am just plain overanalyzing the situation. Either way, I do know I feel awkward and inadequate at times because I cannot adequately explain how I feel. Often I give gifts to show how I feel but am often left wondering if the person got the point.

I have been thinking about this quite a bit lately - obviously. I have a counseling appointment on Wednesday, and I plan to share this with her. I have not cried when I am there. I almost always cry after I leave. Why can I not let myself go? Why is it so hard for me to shed tears of joy and sorrow at appropriate times?

After a bit of an up and down week, I feel content tonight. While I am still very much in a state of flux and self-exploration, I am feeling more and more a part of the real world every day, which is to say I feel like I am escaping the "funk" that has consumed me for months. If I was a crier, I might even be crying tears of joy! But alas, I am off to sleep, completely dry eyed and wondering if ever those tears might come.

Grieving

2009-06-14T00:14:00.003-05:00

I have broken my writing streak - I apologize. I decided in rather last minute fashion, that I would come to Iowa with my parents this weekend to see my niece's dance recital. You might wonder why I would travel four and a half hours for a dance recital. Laura is no ordinary dancer. She began in kindergarten and is now going to enter the eighth grade. We have seen her grow up in her dancing, although one fact has always remained constant: she is the best dancer at the recital. I know you think I'm just biased, but this is not the case. She really is the best! : ) No joke. For years I have been seeing her recitals on DVD, but last year Richard and I came to our first recital. And I was hooked. This year I had the special added enjoyment of spending time taking pictures of Laura. Not only is she a wonderful dancer, she is also an all around wonderful person. As her aunt Peggy put it this evening, "She's pretty special, isn't she?" That she is. I think her pictures reflect that. Here are a few of my favorites:

(That's her in the front, and she had to hold that pose for a long time...she was awesome!)

The music at the recitals is usually amazing, and today was no exception. I get so emotional when listening to music, don't you? Today, as I watched the girls dance - moving their bodies gracefully (at least most of them), I long to have two legs. I let myself go down the "what if" path for just a moment: what if I had two legs...I would ice skate and dance and run up and down the stairs and not be tired or sore or so hot all of the time. There are not many moments when I feel this way, but watching ice skating, dancing, and gymnastics always gives me this intense feeling of longing.

Many times in the last few months, I find myself looking in the mirror and not exactly recognizing who I see. I wonder if I look different to those around me. I know I am heavier, but it is deeper than that. Jane (aka, therapist) says I am a mode of self exploration, and this is why I feel so odd, even to myself.

The thing is that since I lost my leg at the age of ten, I don't really remember having a leg. I don't long to be the person I was...to me I am who I am. The longing is more of a longing to be someone else - to change who I am into someone who is more self-confident, assured, and comfortable. To me, I think having a leg would provide all of that. In my mind I think, "Surely if I had two legs I would feel so good about myself." I quickly remind myself of the many two-legged self-conscious people I know, but I'm just sure that wouldn't be me.

In order to know what they were seeing on x-rays, the doctors at the Mayo Clinic did a biopsy of my left femur to see what was inside. I already knew in my heart what was inside my leg. It was cancer. I was sick - again. I woke up from a nap, still in the hospital recovering from the biopsy, and my parents were there, along with a few doctors, one being my surgeon. My parents were crying. My mom was sitting to the left of me, on my bed. My dad was on the right side of the bed, standing back a ways, looking away, trying to protect me from the pain in his eyes. Amy was out at the nurses station, and I could see her through the glass.

"We are going to amputate your leg," the surgeon said. I remember these words but none of the words before those or even those immediately following. I remember an intense desire to escape the room, to run away from the news and especially from the pain my parents were experiencing. I wanted nothing more than to grab Amy and run. Run. Run. As much as I wanted to escape the situation, it was one I had myself prepared for. I knew before the biopsy was performed that the cancer had returned. I just felt it in my gut. And so the news, while devastating, was not a surprise to me.

I did not cry - not one bit - upon hearing the news. I just sat there making myself go away somewhere in my mind. My mom supported me, "It's okay to cry."

"I don't feel like crying," I said matter-of-factly. And I didn't. I did not hold back tears to protect them from my pain. The tears were not there. Had this come from years and years of training myself to hide my emotions? Was I in shock? Was this my coping mechanism?

I do know that as the years have gone on, I miss having my leg more and more each year. I guess I expected it to get easier instead of harder, but as I get older, I am more and more aware of my physical limitations, and I feel more and more trapped inside a body that won't do what I want it to.

Still, I refuse to give into the pain or to the thoughts I feel when I watch Laura dance. Am I torturing myself? No, I don't think so. I want to see her dance. I want to celebrate her ability to do so. I want her to know how much I love and support her - nothing, no feeling - is ever going to stop me from doing something as important as that.

The Hard Stuff

2009-06-11T08:00:00.002-05:00

When I started writing this blog, I did so for me, so that I would have a place to write my feelings. Secondly, I did it for other survivors. I have spent my life on the cutting edge of survivorship, and there have not been many resources to let me know how other survivors feel, and so I wanted to offer this as one of those resources. I am finding that it is hard to write about the really difficult things, though. Just as in my life, I often put out a front of "I'm good," as to avoid the difficult explanations and possible hurt that goes with saying how I really feel. I ask myself over and over: is it worth it to say how I really feel? Or will it be another way I might cause pain in my family. The answer is, I don't know. But I do know that the really hard stuff is usually what needs to be let out. It is what eats us up inside and causes us to hold back on our dreams.

I am realizing in my counseling that much of what I do in my life is driven by one single factor: an attempt to make up or make right the pain that was caused to my family, especially my siblings, by my years and years of being sick. Always, always, always in the back of my mind - and sometimes in the front of my mind - is the notion that I've caused so much pain. I know my parents missed really, really, really important moments in the lives of my siblings because they were caring for me. I know that my parents, especially my mom, have to live with knowing that, too. How we interact, the habits we have as a family seem to be colored so much by this fact. And the more and more I try to make it right, the worse I feel - it is a a vicious cycle.

I try and appear totally okay when I am around my siblings - it's not fair to be any other way - since they've already been through so much. I try and do and say things that will be somehow representative of the pain and guilt I feel without letting them know my motives. I try and say and do things that might keep them from worrying about me.

This is the thing - it's never enough. It will never be enough. Nothing I say or do will ever take away what happened. I tell myself over and over that I did not bring on Ewings Sarcoma - it was nothing I did to make it happen. It is not my fault. We all did the best we could do. Over and over I tell myself this, and still it is there - the guilt. What a useless but gripping emotion.

I am learning that what is inside me comes out in anger, annoyance, and bitterness. I do not want every time I get together with my siblings to be a counseling session, I'm not saying that. I guess I just want to be real. And maybe in the end that won't look much different than I am right now. I don't know. I just want to worry less about what my life has done to them. And maybe saying these things out loud - or at least on the screen - will free me from some of this. That is something I am working on with my counselor - it is on me to get through this. It is nothing my siblings have done to make me feel this way. I am realizing, though, that my reactions to situations are colored so much by this ever present guilt, frustration, ughhhhhhhh feeling I continue to harbor.

So there it is....the truth. The hard stuff. There it is. I put it out there for me. For other survivors who, too, might know the grip of guilt. Let it go....let it go...I am pushing publish before I chicken out.

Ughhhhhhhh

2009-06-09T22:02:00.003-05:00

Hey. I have had an exciting day....I have been working on "researching" photographers. I have had a good time looking at other photographer's websites - getting inspiration and ideas. I am the type of person that jumps right in and gets going on things. I don't know if this is a good or bad thing...I guess at times it could be a bit of both. I have had a dream to do this as a career for many, many years, and I am so excited that I can start to see it happening. I am so thankful for Richard encouraging me to go for it. I know not everyone has this. It's awesome.

I have been somewhat frustrated, confused, angry, unsure today even amid my excitement about the photography stuff. This is really hard to explain. If I explained it how it is going around in my head, I would definitely hurt someone's feelings because the things in my head are harsh. This is making no sense. Richard is laying beside me, and I said, "I don't know how to write this. I have no idea what to write."

This is what he said: "Write about how exciting the last few days have been for you. Write about how it is hard to push forward when fear and depression are lurking around the corner." I swear - word for word this is what he said. Who has this kind of man? I love him. I really do.

I think I may do a photo shoot of him. I wonder if I did, if anyone would be able to see in his eyes and hands and arms what I see. Comfort. Strength. Wisdom.

Before I go to far, let me say he is a man. Annoyingly driven by items on a list to be accomplished. Moving forward with seemingly no emotion at times. But then he blurts something out like he did moments ago, and I am amazed.

In a way I feel I have grown up being married to Richard. I have always felt older than my age, I guess from my experiences, and I guess that is why it is possible for me to be married to someone who is 25 years older than me. (YIKES - that sounds like a lot when written on the screen!). He has taught me a lot about control and about commitment and reliability. I think I have taught him some about passion and sharing and FUN! : ) I think he only started dancing in his underwear after he met me!

One thing he really gets about me is what I was going to write about earlier....and that is my lack of sympathy for others going through difficult times. I can look at the situation and have empathy to a certain extent, but I am very much of the "pull up your big girl (or boy) panties and deal with it" philosophy. I have so little tolerance for people who just wallow in their miserableness, unable to ask for or accept help. I'm a counselor for goodness sake! I sound like a real B@#!. But really, when does sympathy become enabling? Do you give a homeless person on the street money? I don't. Is this bad?

I have a LOT of anger inside me about people I know (and some that I love) ruining their bodies with substances. I KNOW it is an illness. I KNOW it is an addiction. I KNOW it is terribly hard to quit drinking, quit smoking, etc....but still, no kindness. The worst part is I hate seeing what they are doing to themselves but it REALLY irks me that it affects me, Richard, and Nick. Whenever I am sick, one of the first things I think about is how those who love me are going through me being sick - AGAIN. And so I guess it pisses me off that others don't do the same. Why can others not see the damage they are inflicting?

Amy and I were discussing a person we know who is close to some family members and who is really having a hard time with life. This person has been without a job for over two years and is now losing his house and is going to move in with his daughter. Amy said, "I feel so sorry for him." And see, I don't. Not at all. Not even one little bit. In fact, I said it sucks for his daughter, and he will probably mooch off of her for the rest of his life and that he is able bodied. He could get a job at McDonalds or something. She said he has an illness (alcoholism), to which I replied, "Then get help." She thinks maybe he doesn't know where to get help. To which I replied, "Oh, please. What a bunch of bullshit. Look in the phone book, go to the ER, get it together!" So we continued the conversation back and forth, eventually discussing why it is I feel the way I feel. I said this is something I may talk with Jane (my therapist) about tomorrow. She thinks this is a good idea, because it does seem odd that I wouldn't be at least a little sad/sorry for him.

Is it a cop out or excuse for me to say that I've been through a lot, and so I don't have much patience for others getting themselves together? I don't think people need to be perfect. I DO think people should have a plan for themselves, responsibility for their well-being, and respect for the well-being of those around them. And by the way, I'd like to have world peace while I'm at it. : )

I have so much appreciated those who have supported me in my many, many ordeals, so I do not mean to sound ungrateful or unmindful of that. Whether others around me realize it or not, I do try and get up and go and have a plan for myself....not just for my sake but for the sake of those who love me. I don't want to see them hurting. Sometimes this drives me crazy - literally, and it is what caused me to contemplate suicide this year. I hate being a burden on others. Perhaps this is why I have so little tolerance for others who are?

This is a deep, deep and complicated topic. I am going to end now before no one ever reads this blog again because it is so....I don't know....WEIRD! :) Thanks for listening!

The art for today is a digitally altered picture I took on the way to our lake. Normally where there is one dandelion, there are many, many more. This one was out there, seemingly all alone. It struck me - this is me. I look like I should be part of "the crowd." Really, I feel fragile and isolated and alone. But not always! Sometimes I feel unusual (in an exotic sense), beautiful, and just one of many! So yeah, this is me. Angie the Dandelion:

The Answer?

2009-06-09T00:31:00.003-05:00

Okay...I think I've got the photography bug!!! Could this be the answer to my question: what can I do? I did get another art order today, so I think that will continue to grow as well. I'm really getting excited. I have loved hearing your comments.

I am definitely going to start writing more about my childhood soon. There is so much I'd like to share. For tonight...I'm tired because I have been editing the pics I took of Amy's kids tonight. There are SOOOOO many good ones, and when I left there, I didn't think I had many. She looked at them on my camera and said, "I don't think you got any of the three of them. That's okay, it's hard to get three of them all looking good at once." Oh yea of little faith! Here are some of my favorites...I could have uploaded all of them, but then I'd be up until the morning. : ) By the way, I only uploaded them in low quality bc I didn't want it to take forever, so imagine them much crisper and brighter in color.

Have a great one!

P.S. Guess what I said to make them laugh? "Auntie's sweating like a PIG! Do I look like a PIG to you?" Will was cracking up! I'm not sure kids I don't know would have found me quite so funny! : )

Learning to Back Float

2009-06-07T22:18:00.003-05:00

Well, I went to the pool this afternoon with Nick, my mom, and my dad. I sat under the umbrella the whole time with mom and dad, and I had like 53 band-aids all over the spots I don't want to get sun (I still have lots of spots from my horrible rash at the end of February)- okay, it was really only 7 or 8 band-aids, but it seemed like 53. Dad joked that if I continue to use band-aids in such a fashion, he is going to buy stock in Johnson and Johnson. Ha! Ha! He's so funny! : )

Whenever we are at the pool, and I am watching Nick swim, I usually think at least once of the time my dad taught me to back float on a lake in Minnesota. My mom has the picture, and I really want to get it and have it framed. Maybe I will post it here some day....promises, promises.

The cool thing about this experience was that in high school we studied a poem about a dad teaching his daughter to back float. This is the poem:

First Lesson

Lie back daughter, let your head
be tipped back in the cup of my hand.
Gently, and I will hold you. Spread
your arms wide, lie out on the stream
and look high at the gulls. A dead-
man's float is face down. You will dive
and swim soon enough where this tidewater
ebbs to the sea. Daughter, believe
me, when you tire on the long thrash
to your island, lie up, and survive.
As you float now, where I held you
and let go, remember when fear
cramps your heart what I told you:
lie gently and wide to the light-year
stars, lie back, and the sea will hold you.

Philip Booth

Man, I love that poem. Isn't it amazing? I have many times felt tired as I'm "thrashing" to my island - wherever that is (I haven't figured that one out yet), and I am so thankful that my dad taught me to survive. And even though he isn't "holding" me now, like he did when I was little, there are so many lessons he taught me that make me able to stand/float on my own.

Like:

-Get up. Get up and get going. One day when I was a teenager he tried to wake me, and I wouldn't get up - like most teenagers, I wanted to lounge until noon or so. He said, "If you are not up by the time I get back here, I'm throwing a glass of water on you." I have to admit that I thought "yeah, right" to myself. In between wakefulness and sleep I heard him open the cupboard, turn on the faucet, turn off the faucet, and then I heard his steps coming back down the hallway. I jumped out of bed, just as he turned the corner into my room. Even though I was out of bed, he threw the whole glass of water right on me, all over the wall and everything. So, yeah, he taught me to get up and get going - which is a valuable lesson on days when you really have to try.

-It ain't so bad. One of our loves growing up was the Rocky series of movies. If you don't love the Rocky movies, well....I don't even know what to say if you don't love them. Just don't tell me, because I'll be too upset! :) In Rocky III (which is my least favorite, next to Rocky V, which I don't even count), Mr. T. is beating the hell out of Rocky, and Rocky keeps saying, "Ain't so bad. Ain't so bad." When I was getting chemo treatments, my dad would say this to me, and we would laugh. It sucked, we both knew, but it felt much cooler to say, "Ain't so bad." This applies to many life situations, don't you think?

And, last but certainly not least:

-Faith. Rely on your faith. I have been thinking about this one a lot lately....conversations with family and friends keep bringing me back to the issue of faith. There have been times when I have wanted so badly to be angry with God. In the end, I never really can. There are many, many things I don't like about the Catholic church, but I'm so thankful that my parents raised us with a faith background. And even if there are things I don't believe in, I still find God and peace when I am at mass - lots of other times, too, but definitely at mass. My dad is not one you might expect to be faith-driven, but he SOOOO is. This is not to say he is perfect, because he's not (right, mom?) : ), and it's not to say he is holier than thou, because he's not that, either. He is generous and has always given his very best for his family. I know he is following the example of Christ in that regard. I also think it's great that he has not been judgmental as my siblings married and joined other churches. I know he is as proud of my brother Jamie and his involvement in the Lutheran church as he is of any of us in the Catholic church. Faith. It's really about faith, not religion. He taught me that.

Dad doesn't read my blog - mostly because he is just not a computer guy, but maybe Mom will call him in to read this one. He will be teary-eyed, no doubt. He is also very sentimental.

One last thing, unrelated to Dad. You must RUN! I mean RUN to artonawhim.org (there is a link on the side of this blog, too) to see my photo shoot of Nick. We did it this afternoon before our excursion to the pool. I am learning photography. Someone tell me what you think. Which is your favorite?

Plan?

2009-06-07T00:20:00.003-05:00

Hey all. Tired tonight. I've been browsing the web looking at photography info....gathering up stuff for my next counseling meeting - you know she asked me to develop a plan. I am beginning to realize this may be an exercise in getting me to realize it is impossible to plan. What is it John Lennon said? Life is what happens while your busy making other plans.

Here is a photo of some wildflowers Richard and I discovered on a outing today. Enjoy.

2009-06-05T22:34:00.003-05:00

It is 10:30 pm, and I'm home alone. Well, the doodle is here with me, but my boys are not. Richard went night fishing with his brother - does this sound fun to you? I see no appeal myself. Anyway, Nick went to his dad's, so that left me home alone.

I worked on scrapbooking pages for a book I am putting together for my niece, Ellen. It is her birthday at the end of June, and so I am scrapbooking this year in her life. It has been a great project. My favorite thing about making handmade gifts (which if you know me, you know I do a lot of), is that while you are creating the gift, you cannot help but think of the person for whom you are creating the gift.

Thinking about Ellen makes me smile and feel all warm inside! : ) Amy's (my twin) daughters are only a little over a year apart. It is funny because one looks like Amy and one looks like me. Ellen looks like me. She also looks a bit like her mimi (grandma on her dad's side), but I love to think she looks like me. Plus, she has some of my endearing qualities as well! : ) She loves a cold pillow. She moves her arm around to find the cold spots. I DO THIS TOO? Is it possible that it is a hereditary trait to like the cold spots on pillows? Weird, huh? She is also a "picker." Not a good trait at all, but one common to us, nonetheless. THe other day she asked me excitedly, "Auntie, did you like to pick at your gym wart? I have been picking at mine!" Okay -that's kind of sick, but hey, we can't help it. She has dimples like mine. She is sweet like me! : )

Okay, she's not ALL like me. She is skinny as a rail, something I've never been. She wears glasses and looks absolutely adorable in them. I don't think she is nearly as shy as I was when when I was her age. She is very bubbly and outgoing. She laughs all the time - sometimes we even have to say, "Ellen, stop laughing."

When I think about her life - and really the lives of Nick and Amy's other two - I am amazed and proud of how good they have it. They are, for the most part, carefree and happy kids. They have most things they desire. They have been raised in faithful homes. They are encouraged to do their best at all they do. They have the same love and family togetherness that we grew up with and value so much.

I cannot help but wonder about their futures. Back to the wanting a crystal ball syndrome. I guess everyone wishes for the kids in their lives that it would be possible to prevent any pain in their lives. I hope they make good decisions. I hope they marry someone who treats them well and that they treat their spouses with kindness and love. I hope they continue to value faith, family, education, and togetherness. I hope they will rely on each other the way Amy and I and our siblings have relied on each other.

Because I only had one child - something I never wished for - I guess I consider Claire, Ellen, and Will to be like my children and even more importantly, like Nick's siblings. He loves them just the same, I know. Birthdays and holidays and gatherings are not complete unless we have each other.

I'm feeling very lucky tonight that even though I'm home alone, I feel so strongly that I'm never alone. I am blessed with a family that guarantees that. How wonderful!

Here is one of the pages out of Ellen's digital scrapbook:

Is she not the cutest?

A Plan

2009-06-04T22:47:00.003-05:00

I have been waiting anxiously all week for my counseling appointment. I did not get to go last week because I was at the farm - therapy in its own right. So, I was really looking forward to today's appointment. I was a little more than disappointed when I left the appointment feeling somewhat irritable and exhausted. I started the session by telling her that I always seem to be most bummed out on Mondays and Tuesdays. It was not long before we were talking about my career, or lack thereof.

I left, although frustrated, having come to some very clear conclusions:

1. It is hard for me to be unsettled. I want what I want, and I want it NOW! Like Veruca from Willy Wonka. : )

2. I thrive on being around people.

3. I attach much of my "worth" - right or wrong - to my career.

4. Things are never easy.

THese were good things to come to a conclusion about, but I am still left wondering what to do in with this great expanse (hopefully) of a future that is in front of me. When I was in Iowa, Vicki gave me a gift - a wall hanging that says: The best thing about the future is that it comes one day at a time. I struggle so much with remembering and most important accepting this fact. If it were up to me, I would have the next thirty years planned out blow by blow. My counselor says this comes from years of uncertainty about my health. Duh! Sometimes what she says seems so obvious, but many times I haven't thought of it in the way she helps me to.

So, after many, many questions from her, we brainstormed ideas of what type of work I could do that would allow me to work part-time, with a flexible schedule to allow for resting, etc..., that would be a passion, that would be around people, and that would enable me to earn a little money. Not asking too much, right? Actually, we came up with several options: teaching an adult ed class, getting Daisy trained as a therapy dog, continue to pursue the art stuff, add digital scrapbooking to my art services, counsel kids on a part time basis.

There are lots of options, but knowing the options and making them happen are two different things entirely. She encouraged me to consider the exploration of these options as exciting. Right now, I feel it is a bit daunting and scary. Way down deep I feel a tiny twinge of excitement. She also encouraged me to be open to possibility. Again, easier said than done.

One last option we talked about was to get disability payments. I have been torn about this for a while. Getting disability obviously says one thing: you are disabled. She asked me: are you disabled? This was so hard for me to answer. So I said, "yes and no." She laughed and said that was a cop out answer. Try again. I said in my heart I don't consider myself disabled, but I know I can't work full time anymore because of my health. So what does that mean?

She said next week she would like me to come with a "plan" for how I am going to explore my options. Who do I need to talk to? What could I read or research? What are the options?

She reminded me that self-exploration is difficult and to go easy on myself for feeling what I am feeling. I think next session, I may ask her if I can take her picture and then put it up all over the house to remind me of what she says... : ) Just kidding. I guess that would be kind of creepy.

I will end now. My brain is about to EXPLODE! I am still having problems uploading the art. I think the files may be too big. I am seriously considering offering my digital scrapbooking services. I am going to post sample pages on my art website this weekend, so check it out.

I will share this picture of my incredibly handsome and talented son, Nicholas Jay. : ) Is he not the best looking baseball player you've seen in a while? Ok, I'm a little biased!

Have a good day!

Be a Good Girl

2009-06-03T23:00:00.003-05:00

I am having a really, really good day. I hope you are to. I am so excited about the comments! :) This is really silly, I know, but it does help to be encouraged. I don't feel weird in my dark bedroom writing my innermost thoughts, but when I see someone in public and they say, "How are you? Are you feeling more like living these days?" it sort of freaks me out. Yes, this did happen to me yesterday.

One comment from my sister said I should not be so hard on myself, and this is something I talk to my counselor about. It is hard for me to consider mediocrity. I am not saying I am a superstar at everything I do, but in general I try to do everything I do to the best of my ability. I am also pretty competitive, and I like to keep ahead of the game. It feels good to be good at what you do. It is something I have thrived on my entire life. I guess everyone does this to some extent....but what makes some people overachievers?

My parents always insisted that we be respectful as kids. This carried into my treatment as well. There was one doc I was particularly annoyed with in my teenage years. I admit I was pretty sarcastic and unpleasant to him at times. Of course I thought he deserved it, as he seemed to be a real doof at times. My mom would often "scold" me by saying, "Angela, you should really be nicer. He is doing the best he can." My response was: "Too bad that isn't good enough."

Often I get myself in trouble by my harshness. I have so little tolerance for others at times and expect them to strive for greatness like I lead myself to believe I do. The funny thing is, it really never seems to be enough in my mind. I have never done enough - there is always more I could and should do in my mind.

There was one day we were in a counseling staff meeting at work. We were discussing scholarships and a set of twins who were a bit unequal in their academic achievement. Both were great kids but one was at the very top of the class, getting scholarships, etc...I commented that I could understand that situation, being a twin myself. One of my co-workers, who does not know Amy, said, "Yeah, but at least you were the smarter one."

I was shocked and laughed. "No, you've got that wrong. I was not the smart one. Amy was always at the top of the class and much more academically successful."

"Wow!" the co-worker replied. "Knowing you, I would have never guessed that."

This is something I still think of often today. The descrepancy between how we see ourselves and how others see us is amazing. The truth of who we are is probably somewhere in between how we see ourselves and how others see us. I am always sure I know what others are thinking of me - that my hair looks bad that day or that I'm being a bitch. The truth is I don't really know what others think unless they tell me. This is often a hard fact for me to accept.

I wonder if this comes from years of wondering what others think of me. Again, we all do this, but I think I am overly sensitive of others' opinions. When I was little, it was always a goal of mine to get a sticker at the end of my visit at Mayo. I would try and be the best I could be - brave and strong. I felt my "worth" depended on it. I don't know how I gathered that, but I did. I very much have the suck it up attitude, and I know I get that from my dad. It serves a person well in the most difficult of situations. However, I wonder how far is too far. When is it okay to let your guard down and just say, "This sucks!" Is it ever okay just to throw an out and out fit about life? I never thought so, until recently, and mostly I'm still torn. When I talk to Nick and when I counseled kids at school, I almost always go with the, "that's really to bad but deal with it" philosophy. Does this make me harsh or brave? or neither?

When I was involved with Camp Quality, a camp for kids with cancer, it was always expected that the kids be respectful. When I became the director, it was important to me that we continue this tradition. One afternoon, we had guest singers who were staying after their performance for dinner. We lined up at dinner for a buffet style service. One of the staff members let me know that "Mike" (change of name to protect the innocent : )) had butted in line in front of our guest performers saying, "I eat before you because I'm dying."

This was a twelve year old kid whose actions were obnoxious as all get out - even if he did have cancer, and I stand by the idea that it is important to admit to these things. Just because a child - or anyone for that matter - has cancer, it does not mean we have to like what their actions or choices they make. I have to admit that I was pretty fired up at Mike upon hearing about his announcement to the guests. One of the frustrating things was that Mike was actually doing quite well at this time and not in any real immediate danger of dying. He was not terminal, in other words.

I got my emotions in check and took Mike for a ride on the golf cart....It was never a good thing to get a ride on the golf cart! : ) I was calm but stern. I told him what I heard and asked him if this was true. He admitted that it was. I stopped the golf cart, turned to him and said, "Listen, we are all dying. Every one of us. Just because you are going through a difficult time - a really difficult time - does not mean you have rights to be rude or to use your situation to get your way."

He got kind of teary eyed, and for a moment I thought I had been too harsh. In the very next moment, my heart told me to stand strong. I assured him - still being serious and stern - that this was a great lesson to learn. I told him that I thought he had a lot of potential to use his experiences to do great things....and then I smiled, "but while you are here, you are not going to get any special points for having cancer. I consider you to be just as normal as any Joe Shmoe on the street."

He smiled back. I think it meant a lot to him to have someone call him on his little game. I think he was relieved to find out that his experience as a cancer survivor really didn't mean he was "special." Who he was - his personality and spunk - that is what made him special. Yes, his treatment probably formed some of that, but it certainly wasn't everything. I think about Mike and that conversation, and I try to tell myself the same thing: I am who I am, and I should always try and be the best I can be.

And on the days when I don't earn that "sticker" because I've been a "witch" or because I've been indulging in a major pity party...well, those days I'm still working on. I'm working on accepting those days as part of the package. I'm working on accepting all of me...not just the good girl who earned the sticker.

Every time I upload a file, it says "internal error." I'm not sure what that means. I'll investigate more and work on posting art tomorrow. I promise! I guess I might have to start whipping out some poetry...at least I don't have to upload that.

Thanks again for the comments!

The Good, the Bad, the Ugly

2009-06-02T23:42:00.004-05:00

Today had a true mixture of the good, the bad, and the ugly. They were as follows:

THE GOOD -

I got to talk to Megan...we talked about my blog entry and about all of the silly things we did that I could have written about. Great conversation.
I went to lunch with my dear, long time friend, Molly. Even though we both live in JC, we don't see each other often. It is always easy to catch up.
I got my hair cut. Love an hour at the salon.
I had lots of laughs with Nick today.
I delivered an art order.
I went to the Sheriff's BBQ with Richard and Nick - saw friends.

THE BAD -

Still in a bit of a funky fog today and kept screwing up things - like I went to my haircut at the wrong time.
I had a nagging headache all day today. I assume it is because I did not sleep with my CPAP machine last night. Yes, I wear a CPAP machine. It is quite a lovely "mask" that forces air into my lungs at night, so my oxygen level stays up. Someday I will write more about this and about the sleep tests I had to determine I needed one...a great story. I associate CPAPs with fat, old men, but still I wear one and am happy to report Richard finds me incredibly sexy in the contraption! : )
Still only 25 readers today.
ONE stinking comment (and I loved it, AZ) but really, one comment? Come on, humor me people!
My good, good friend J. called to tell me she was at the hospital with her husband, who is also a dear friend. It is hard to feel helpless when your friends are hurting.
I felt completely useless as an artist...growing a business is HARD and FRUSTRATING.

THE UGLY -

I got my haircut today. I love the time at the salon, but I just don't feel great about my physical appearance. UGH!
I had a MAJOR, MAJOR, MAJOR sweating attack in Barnes and Noble while sales clerk was helping me search for a fairly trashy romance novel we are reading in my book club. I think she thought I was sweating thinking about the book! : ) How embarrassing. Plus, Nick wouldn't stop laughing at me when we got in the car. He kept repeating, "Mom, it looks like you just got out of the shower!" And it did.

So, lots of different emotions today. I am happy to report (I guess) that there was no crying involved, and I feel good about this. I sometimes feel like I am about to bust with all the crap that is inside me.

Thus, today's piece of art....a digitally altered photo of the silos on "the farm."

They have held "crap" for years and years and years and are still standing. What does this mean for me? Hope? : )

UPDATE: Twenty five minutes later, it is now 12:37 am, and I cannot get the blankety blank file to upload, so I'll post the art tomorrow. It's been that kind of day. Definitely a sign it's time to go night night.

"A Picture a Day Keeps the Doctor Away" Project

2009-06-02T00:33:00.003-05:00

Well...still in a bit of a funk, although I had a great time at Amy's. We had good food and lively conversation. I've vegging and surfing the net some since I got home. I have decided, in a moment of pure insanity, I'm sure, to attempt to post each day for the next 365 days - even if it is just a short post. With each post, I am going to include an original piece of art - be ready to experience several mediums: digital collage, photography, maybe even a bit of poetry - oh my!

It is also my wish that you tell one person about my blog - preferably somebody who will join the readership. Currently, I have about thirty readers per day, but I would love to have more. Can you help?

Finally, I would love to hear your opinions on works of art I post here. I am not going to explain the piece, so I would love to hear your interpretations....post opinions in comments. Thanks to everyone who continues to read. It makes me feel good to know someone out there is listening! : )

Today's piece:

Bummer

2009-06-01T16:10:00.002-05:00

When I was a counselor, and I would have a kid come into my office to tell me about their woes for the day, one word almost always came out in response: bummer. Partly, I meant to show empathy - I really did care and wanted to be able to help so badly. Sometimes, the bummer came out with a more sarcastic tone, as if to say, "Don't feel sorry for yourself...." or "Get your shit together..." (because of course I couldn't say "shit" at school and oh how I sometimes wanted to).

I am having a bummer kind of a day. Last week and weekend were so busy, I hardly had a moment to think. Today, I woke up feeling tired and unmotivated and somewhat sad....do you ever feel sad but can't put your finger on why? I did take a luxurious nap, laying cross wise on my bed in front of the fan. Still, after waking up for the second time, I cannot shake this fog.

Today is my mom's birthday. I have made her cute notecards that she has been desiring. I have an art order to fill, so I did that today as well. We are going to Amy's tonight for dinner - which is always, always, always delicious. Richard is fishing with some friends and was torn - fishing or dinner at Amy's - a genuinely hard choice. Thinking about this makes my heart feel full, because Richard has only recently really started to enjoy our extended family time. He is private and quiet and from a small family. Our routine "togetherness" has been somewhat difficult for him to get used to. But today he was very disappointed to know he was going to miss Amy's dinner. It reminds me of how close we have grown in the last months - trying to ride the waves of ever changing emotions and circumstances.

The most embarrassing and frustrating thing of the day came when I called a shop owner to inquire if she needed more pendants. It seems she got the wrong bunch of pendants (which Richard delivered on a day a few weeks ago when I had a rough day). The pendants she got still have gluey stuff on them. She did not seem mad, but I was hugely embarrassed. It seems lately I just can't get it right. Maybe I am trying to hard.

I am not accustomed to failure or really even to these bumps in the road. When I graduated from college, I got a teaching job immediately, and also a counseling job when I completed my Master's degree. I have published writings, delivered speeches, directed a camp....It has not been neurosurgery or anything as important as that, but I have felt accomplished in my own small way. Now I cannot seem to just enjoy this time off - even though I know (and everyone reminds me) that I should. I feel somewhat useless and unfulfilled. I guess this will be the topic for my Thursday therapy appointment.

I need to go now...I may write more later. Maybe some good family time will release me from my annoying funk. Tomorrow or the next day I will feel embarrassed that I even wrote about this today. Oh well.

Until then,

One Degree of Separation

2009-05-31T23:02:00.003-05:00

I continue to be amazed at how small our great big world can really be. I was reminded of this today when I received an email from my sister-in-law, Peggy. She told me that a friend of hers was at a doctor's appointment in Ames, Iowa. In gabbing with the nurse, she shared that she was from Hampton, Iowa. The nurse was surprised and asked if she knew "the Badgers." Peggy's friend said she did, indeed, know us as she is friends with Peggy (married to my brother, John). It turns out this nurse worked previously at the Mayo Clinic and at Mercy Hospital in Rochester, Minnesota. She took care of me in the days following my amputation. She still remembered me, our family's name, and wondered how I was doing.

In my many medical adventures, I have had the pleasure - and the sincere privilege - of meeting so many amazing and dedicated individuals. I am not sure if it the case for other cancer survivors, but our family seemed to bond easily to those we came in contact with. Perhaps they could sense our closeness. Perhaps they enjoyed my usually pleasant demeanor amid such a terrible situation. As in my friendship with Megan, I have found in important to nurture these relationships along the way - perhaps not forever, but at least for a very special time.

I have to talk briefly about the person I consider to be my medical "hero." He is one among the many, but in his special way, the most important. He is Dr. G. He was my oncologist at Mayo. Dr. G. was always a "seasoned" doctor to me, although he only retired just a few short years ago. When he treated me, he was no doubt in the prime of his career, but I think it was his wisdom, his South African accent, and his kindness that made me see him as seasoned.

I have tried on several occasions to describe Dr. G. to other medical professionals. It is hard to explain why he meant so much to me. Let me just say this - he got it. He got me. If you've ever had a doctor who doesn't get it and doesn't get you, you know just how important it is to have one who does. What makes a doctor who gets it? Lots of things, I guess: passion, compassion, patience, kindness, drive, desire, smarts, humor...the list goes on and on.

As a bit of a side note: My husband, Richard, was the principal at our local high school for years, and he was loved by so many. Most people hated to see Richard retire. I, on the other hand, longed to have him for myself. To rid him of the stresses that caused his blood pressure to rise and finally to have quadruple bypass surgery. I have often wondered over the years, what it might have been like to be married to a doctor as driven and committed as Dr. G. Surely it was difficult. After all, I always felt Dr. G. would do whatever it took to take care of me...that, I'm sure, meant sacrifice. So I'm sending out a thank you to Mrs. G.

The best story I can give to illustrate the kindness of Dr. G. is as follows....

Weeks before I had my leg amputated, it had started hurting. Mostly I kept this to myself (more later on this), but finally the gig was up, and I had to admit what I already knew in my heart was going on. Off to Mayo we went to investigate. Dread and fear and uncertainty filled me. All the while I pushed in down, refusing to give into its almost drowning effect. We were in a "normal" examination room at Mayo, which included a traditional examination table, a small sofa for parents, a small desk attached to the wall, and a huge window overlooking the city. We were on the 12th floor, so it was quite a view. I stood facing the view, my back to my parents and Dr. G., hearing them vaguely - as if they were at a great distance away from me - discussing plans to perform a biopsy on my leg because something had, in fact, shown up on the scan.

Then he was standing beside me. Not above me. Not far away from me, but directly beside me. He asked a simple question: "Are you scared?"

Not wanting to let my guard down, always wanting to remain stoic, I simply shook my head yes. I could have said I wasn't afraid, but I knew he sensed my fear because, like I said, he got it. And then came his most memorable words to me:

"I will take care of you."

NOT: "It will be okay."

NOT: "Don't be afraid."

NOT: "This won't be too bad."

Simply, "I will take care of you."

The thing about kids is that they sense a phony. They sense a lie. Dr. G.'s statement was truth, I felt it in my gut, and I trusted that he would do all he could to take care of me. This oh so important trust enabled me to squash my fear, at least a little bit, and focus on fighting this disease, AGAIN. His promise to take care of me flooded my heart with a relief that is frankly indescribable.

Many years later, my friend Kathy, after hearing my stories about Dr. G. informed me that she knew him from the national meetings. She also knew another great provider of care and love, Donna, my main nurse at Mayo (and Dr. G's right hand, no doubt). When the national meeting was set to be in St. Louis, Kathy arranged for all of us to have lunch together. I took my mom with me - after all next to me, she is undoubtedly Dr. G's greatest fan. We had lunch - Kathy, Donna, Dr. G, my mom, and me. I was able to show him the fruits of his labor - ME - alive and well. It was if things had come full circle, and I could see so clearly the impact of this hero on my life.

The frustrating thing is, as I've mentioned in talks I've given, that one cannot teach the passion and intuition that graced Dr. G's interactions with his many, many, many young patients. It is like the best teacher you've ever had - they are just born to do what they do. Certainly this does not discount the many doctors out there who give their all for the cause of childhood cancer but who just do not possess that special something. Certainly they can become good doctors but perhaps will never know the "magic" that docs like Dr. G. have.

As for me, I am eternally grateful for having had my time with Dr. G. Thinking about him makes me want to be a better person. While I'm not sure I'll ever see him again, his influence on my life - both physical and emotional - will always be a part of me. And who knows - given the small world in which we live - I may just get the opportunity to thank him again.

Somehow "thank you" just doesn't quite cut it, so instead I'll just focus on being the best person I can be - that would be the thank you most fitting of his amazing example.

Friends Forever?

2009-05-30T22:08:00.002-05:00

Well, I am home again. The days went much too quickly in Iowa. It seemed I'd just arrived when I was pulling out of the drive this morning. Leaving the farm always puts me into a bit of a "funk." I was anxious to get home to my boys, no doubt, but leaving the comfort I find there is always tough. Looking on the bright side, that fact also makes me savor my time there even more.

Before I left town this morning, I stopped by the St. Patrick's - the Catholic church where we attended many, many masses. The same church where I attended the "healing mass," I wrote about previously. Of course I couldn't help but think of that as I drove up to the church. However, I was there for a good reason, and I wasn't going to let anything bother me.

I went by the church to see Marty and Cindy - the parents of my best childhood friend, Megan. Marty and Cindy will celebrate their 40th wedding anniversary tomorrow. Megan lives on the East coast, their other son lives several hours away, and while they are going on a family trip in a few weeks, they had no kids home to wish them happy anniversary in person. I thought it would be great to stop by and give them my best. And it was great - for both of us, I think.

Megan and I became best friends in the fifth grade. Of course we knew each other before that. Living in a small town, going to the same church, made us acquaintances, but it wasn't until we attended the same school in fifth grade, that we became best friends. We were best friends in the most traditional and "girly" sense...we had "code" names and signed all our notes to each other - BFFE. Best Friends Forever (I guess we didn't realize forever was one word! : ) ) We shared everything together - our Cabbage Patch Dolls, our stickers, our diaries...everything.

I guess most adults would have thought our pact to be "friends forever" was cute but unrealistic. After all, life happens, things get busy, kids get made, and suddenly friendships go by the wayside. Certainly Megan and I had our share of obstacles. First, of course, was my illness in fifth grade. I know this was hard for Megan. Of course. But in a quiet and normal way, she was just there when I needed her to be. Then in sixth grade came devastating news: my dad was getting transferred to Missouri. I remember leaving Hampton and wondering if I would ever have a friend like Megan again.

The thing I've most learned through my friendship with Megan, is that friendship, like most precious things in life, doesn't just happen. It takes work and nurturing and lots and lots of love. Megan and I have always been willing - more at some times than others - to put in all the "work" necessary to maintain our friendship. With regular letters and phone calls after I moved, we always kept in touch. Megan's mom brought her to Missouri for a visit, and I was back in Iowa visiting family, so I got to see her then as well.

And we've been on many adventures together. We visited each other at each other's colleges - YIKES! Stories to crazy to reveal here! : ) When Megan moved to New York to nanny, I visited her there and met the boyfriend that would later be her husband and the father of their three beautiful children. When I got married, Megan was there, standing up with me, and I with her when she got married. We've been through so much "together" while apart in geography.

I won't lie, there have been times of distance...when life did get too busy, and we left months between our visits and calls. But you know what? The most wonderful thing about a forever friend is that the moment you talk to them, it's like no time has passed at all. I guess that has to do with knowing so much about each other and with having been a part of each other's lives more years than not.

Nurturing a friendship the way Megan and I have tried to do over the last 25 years, is much like putting money in a savings account. At certain times it is difficult and would be easier just to say, "oh well." But in the end, having that support on a rainy day makes all of the efforts worth it. Having a friend to call who knows you - I mean really knows you and where you came from - is invaluable.

I do wish we lived closer, so we could laugh and share the daily grind. But, as we all know, you can't have everything in life! : ) I will never forget being at Megan's wedding in New York City. It was beautiful and elegant. But I remember two things more vividly than anything else. One, is talking with Megan in the bathroom. It sounds funny, but amid all the hustle and bustle, we snuck off to the bathroom and just gabbed. Second, I remember Megan's mom thanking me for being such a good friend to Megan.

And even though it might have been easier and less time consuming just to leave town today without stopping by the church to see Marty and Cindy, I just had to stop. As a thank you to them. They raised someone who has stuck with me. No matter what. No matter when.

I think what Megan and I have might be more rare than even we realize. However, I know, because I know her, that she is as thankful as I am for making it work. For sticking by our pact, written and signed so many years ago, to be BFFE!

Paradox

2009-05-28T23:09:00.003-05:00

Guess where I am writing from tonight??? I am at "the farm!" I did get to come to Iowa - FINALLY - on Wednesday. I made the 6 hour drive by myself. I have done it before but wouldn't have thought I could do it in my most present state of mind, but it ended up to be fine. It was a lot of time to think - which is a double edged sword - sometimes good, sometimes not so good. If nothing else, it makes me feel liberated.....to be able to get up and go when I want to.

One of the things that I thought about lots in my drive up here, and something I thought about more and more as we've talked about some since I've arrived, is that life has so many gray areas. For example, I have always been an advocate of knowledge. I think anyone going through a difficult time - especially when medically related, should have a good knowledge of their situation. The gray area: when does too much knowledge become more than one can bear? Let me give a story to illustrate.

I was attending a national meeting of the Children's Oncology Group. I never knew until my adult life, that oncologists, nurses, and otherpediatric oncology professionals gather twice a year to discuss clinical trials, treatment methods, research, etc...Just knowing these meetings exist astounds me. The passion, time and sacrifice these people put into not only curing children with cancer but also making their lives better is amazing. They have a committee with in COG called the Patient Advocate Committee (PAC). This group was made up of parents who had/have children with cancer. About five years ago, the group decided to include adult survivors of childhood cancer. My friend, Kathy, informed me of the opportunity, and I applied. I was one of two survivors chosen to join the committee as the first survivors to be part of this amazing process. I was honored and excited about the opportunity. As a member of PAC, it was my job to go to committee sessions, such as the Late Effects Committee, and sit in to be the "voice" of a patient or survivor.

Soooo...I was at a Late Effects meeting. In this meeting they discuss issues related to adults who had cancer when they were children and the effects their treatment had on them. At this meeting, I am surrounded by doctors and nurses - some of the best in the country. They acknowledged my presence - some more than others - but mostly I just sat quietly because I was a "newbie." I recognized right away that some of the docs were not particularly open to my presence there. Is it right to mix us together? Does it matter what the patients think? Of course it does. It has to. During the meetings, though, I had to be prepared to hear some information that might be hard for me to digest. This occured at this meeting. They were discussing ways of getting in contact with former patients to make sure they were getting their hearts tested for possible damage - remember my heart was damaged from chemo. There are many, many survivors out there who don't know this is even a possibility. One of the docs piped up, "One way we could narrow our search is to check the death records. There will be many that have already died from heart related incidents."

"Excuse me?!?" my voice was screaming inside my head. He just threw that fact out there like it was nothing, like it meant nothing, like those weren't real human beings out there who died. Like those human beings didn't have families and children who would miss them. It was to him, simply a fact - no feeling involved at all.

And so the two worlds collided. Only I doubt he ever realized they had. I, on the other hand, was reeling and at the same time wondering what the hell I was doing at this meeting. And the more and more meetings I attended, I began to know that I just couldn't hear it. I didn't have it in me. That was hard for me to accept. I wanted so badly to be able to hear whatever I needed to hear. I wanted to be able to take the knowledge and use it. When I began, I had no doubt I could do it. I was overwhelmed at how difficult it was. I tried to deny it, but it was true. I knew I needed to step down for my own mental health, but I hated it. In fact, it was not the reason I gave for stepping down from my position. There were other real reasons - I was busy with work, with Nick, etc...but really I just couldn't hear it. And to me it seemed like failure. Instead of thinking it is "normal" to feel this way, I felt as if I was letting myself down and worse, other survivors who needed me in that setting.

I have also come to realize that I live with a sometimes painful and sometimes confusing paradox - a gray area: childhood cancer does not define me and at the very same time it is everything. I am who I am today because of my experiences. We all are, aren't we?

Some people have commented, saying things like, "why dredge it all back up?" "Why do you think cancer means so much? I don't even think of it when I see you?"

"But I DO!" I want to scream back! I have to get up and put on this sixteen pound leg every single day. So yes, while I am so much more than a cancer survivor, I am also always one.
I think, finally, I can see a light at the end of the tunnel. I can for the first time in my life envision being at peace, or at least much more even keeled, about the whole experience. This has come with counseling. I never thought I would say that. I never thought there was a counselor out there who would get it and help me get it. But I found one, and we are working through it, and for that I am so very thankful. In the end, there may still be many gray areas, but I will have explored them and know better who I am and who I want to be. I realized my progress just tonight...

When I was younger, I used to DREAD people asking me what was wrong with my leg. I find it amazing (and rude) that people will just walk up to you in the mall or at the grocery store and say something like, "What happened? Did you sprain your ankle?" For years and years, until just the last five years or so, this mortified and angered me. I was embarrassed and would sometimes just lie and say I did sprain my ankle. I am proud that I am growing into my skin (FINALLY) and feel a little more comfortable with who I am.

Tonight I was visiting with my great nephews. My nephew, Tyler, is just a few years younger than me. We grew up together and he is in some ways more like a brother. He is married to a fabulous gal (who also reads this blog! : ) ), and they have three wonderful boys who are six, five, and three. They are fascinated my their great aunt with a "broken leg." Tucker, the three year old, asked me tonight, "When did you break your leg?"

This kind of thing made me anxious before, but I feel really comfortable with it now. So I answered, "It was a long time ago. When I was ten."

Riley, the very thoughtful and mature six year old, continued drawing on my computer but very casually asked, "So how did they take your leg off?"

"They put me to sleep," I answered wanting to keep the gory details at bay, for his sake.

He was not at all phased, however. He then asked, "But what did they use to cut it off?"

"They used an electric saw, I think," I said, feeling really great about this conversation. Again, he seemed completely unphased.

Riley's last question: "Did it hurt?"

"No, that's why they put you to sleep, so it doesn't hurt," I assured him.

And then as quickly as the conversation started it ended, and we moved on to much more important things, such as listening to Tucker sing "Who Let the Dogs Out." I hope they'll look back when they are older and think about me, about our conversations, and know that life sucks sometimes, but it's okay. And more than that, it's okay to talk about it. It's okay to ask the questions and know the gory details because really its not the questions or details that are the issue, but rather how you choose to deal with them.

Someday I might share with them that getting your leg cut off does, in fact, hurt. Years and years later it still hurts. But at the very same time it hurts, it brings joy and opportunity greater than some will ever experience. Amazing.

Home

2009-05-25T22:55:00.007-05:00

I apologize for my delay in posting....I have been busy being a mom, daughter, wife, and sister. How wonderful! Nick had a ball tournament in St. Louis over the weekend, so we spent a few days there. We got to take in a Royals vs. Cardinals game...not too exciting for me, but it is so great to see Nick take in the sights and sounds of the ballpark, all the while knowing he is dreaming of being out on that field someday. Oh, the thoughts of little boys. We also spent part of the weekend with my brother David and his family. We all gathered at our house Sunday afternoon, went fishing, and feasted that evening on fried fish, steak, sweet corn, potato salad...YUM! Another great memory to tuck away.

Of course, all is not hunky dory. Life continues to have its normal (and sometimes not so normal) struggles. I was supposed to be in Iowa tonight. However, I noticed last night that I had another rash starting. I was worried about traveling, knowing it could get bad, like it did the last time, so I put off my trip. All day I have been thinking about being at my sister's house...she lives where I was born and raised until the age of twelve. It is a small town in north central Iowa. She lives on a farm. "The farm," as we call it in our family. It is always so comforting for me to go to the farm. And usually, I find it hard to leave.

You may have heard the saying: "Home is where your story begins." For me, Hampton, Iowa and the farm bring me back to the beginning. Being there makes me feel grounded and safe. Even though I spent many painful days and nights there - being diagnosed with cancer, puking, learning to walk after my amputation and then falling, losing my hair. Still, I find comfort in being there.

Surely that is a testimony to my family and to the memories we created there, despite all of the difficulties life threw our way - my cancer being just one.

When I go to the farm today, whether by myself or with the rest of the family, I find peace in my story - all of it - and in the solid foundation on which it was built. I think that is why it means so much to me. When I am there, I am reminded of and focused on all that is most important in life.

Such as....

Playing together;

sharing time and space;

Enjoying all that is only possible at the farm;

but mostly...

taking time out to enjoy each other and to enjoy coming HOME.

A Sick Mom

2009-05-21T23:31:00.002-05:00

Did you have a good day? I did, although I was sleepy today and struggling with allergies. It was so nice outside, and we spent part of the evening riding around the farm, so that I could take pictures. I got a great picture of the sky reflected in a small stream that runs through the farm. I will try and post that tomorrow. I had an amazing counseling session yesterday and am realizing that delving into self-exploration is exciting but also very scary and overwhelming. It is so hard for me to consider doing this for myself, knowing I may be hard to live with in the process. But I know I have to do it. And as my counselor said, "You might want to warn those you love that you could be a bit of a mess as we go through this. It is a complicated deal, Angie. They may feel uncomfortable, too, but too bad so sad!" Her words help me feel liberated and refreshed, but almost immediately I feel myself revert back to my people pleasing but sometimes harsh self....my regular routine. I am learning....

So back to my story about Nick's birth and the days that followed. I continued to feel tired and knew there was something wrong. When I look back on it, I know I should have gone immediately to the ER. I was so tired of the hospital, though, and I was afraid. So instead, I saw my resident doctor (not my specialist) on the floor when I was at the hospital visiting Nick. I told him about my symptoms, and he assured me that I was just getting used to being up and around and then prescribed me some cough medicine.

Two more days went by...I continued to visit Nick at the hospital and continued to complain to several nurses and docs I saw while there that I "just wasn't feeling right." It was through the grapevine that Dr. Floyd heard I was not feeling well. He had given me his card, even with his home number on it, and told me to call if there was anything wrong. Of course, I did not. I guess I was afraid of making a big deal out of nothing. As I was in the NICU that morning, three days after Nick's birth, the nurse approached me and said sternly, "Dr. Floyd would like to see you in his office - immediately."

I knew he was not going to be happy, and I knew this was the moment I would find out what was really wrong. My mom was with me, and we went to the Dr. Floyd's clinic. They walked me right back - which is never a good sign. When he came in the room, Dr. Floyd was just shaking his head. "What did I tell you?" he asked in a gentle voice and continued before I could answer. "I told you to call me if anything, anything came up. And so I hear today that you have been asking residents and nurses what is the matter with you. Angie, this is serious, I'm afraid. Let me take a listen to you."

He listened to my heart and lungs, and I could see utter concern on his face. I couldn't say anything. He said, "I am going to send you back over to the hospital for an echo of your heart. It sounds to me as if you have some fluid building up."

The next thing I really remember is getting the echo. The tech performing the test was a woman I knew well - I had several echos in my weeks at the hospital and prior, so she was a familiar face. Again, as she did the test, I saw the same concern on her face as I did on Dr. Floyd's. She called my cardiologist in the room. She looked at my beating heart on the monitor, and again - concern.

FINALLY, she said matter-of-factly, "You have congestive heart failure. This means your heart is not pumping strongly enough and therefore is enlarged. This causes fluid to build up in your body. I am going to have to admit you to the hospital. We will give you medicine to get rid of your excess fluid, and we will start you on some heart medications to get this under control."

Still, I could not speak. My mom bravely asked, "Does this go away?"

"Well," the doctor started tentatively. "Sometimes it can be a temporary condition related to the pregnancy. We give the meds and it gets better. Other times the heart is irreversibly damaged, but we will hope for the best."

"And if it is damaged?" I just had to know the whole story.

"Worse case, a heart transplant could be needed. But lets just take this one step at a time. Okay?"

Just a few hours later, I was like a new woman, as far as my physical feeling. I could breathe again. The medicine they gave me caused me to pee out an IMMENSE amount of fluid. It was a rapid weight loss plan - but one I never care to be on again. As good as I felt, I knew I was not out of the woods yet. It could be months before we knew for sure if the heart meds were working to correct the problem. For now, I was still able to go up and visit and feed Nick, and I was hoping and praying we would be released on the same day. They assured me that they would not send Nick home without me! Whew! What a relief.

That night I laid in the hospital bed feeling different than I had ever felt in a hospital bed before. The stakes were so much higher now. I was needed. No one else could be there for the precious baby sleeping two floors above me. It had to be me. I was scared and frustrated knowing that just days into his life, my baby was like all those in my life - wrapped up in my illness. I guess I hoped being a mom would remove me from being "sick" as I had been my whole life, and now I knew that wasn't the case, and I was heartbroken.

But heartbroken or not, I was not going to stop fighting. I was going to do the best I could. I was still Nicholas Jay's mom - a sick mom, but a mom none the less.

Nothing in the world would ever change that.

Just One Bad Day

2009-05-19T23:29:00.002-05:00

I am, as usual, lying in bed, the fan humming softly, Richard breathing regularly, Daisy sleeping peacefully, and I am reflecting on a day that was not one of my best. I am not sure of the triggers or what causes these "fits," "episodes of emotion," "breakdowns," whatever name you might give them. I just become overwhelmed, and I have a MOMENT.

Today's moment was, as are most, followed by a conversation with Richard....today, in fact, the conversation/argument was happening in the midst of the moment - not a good idea. I end up walking away each time with the same feeling: It must be so hard to be married to me. Even today, Richard seemed to lose it himself a bit, and that was hard for me, as he is usually the epitome of self control. "This is not normal," he repeated several times of my breakdown.

I am not sure...is it normal? It has been my normal, but I am sure that doesn't make it "right." The thing is, "normal" and "right," they are so relative to each person's experience, upbringing and personality. I know I am meant to be with Richard, and yet it seems like we are such polar opposites.

As down as he is on my "moments," I have to believe I'm okay. I'm normal (although I am going to double check tomorrow with my therapist - thank God for her!) I have a deep belief that a person, and I think a woman especially, must hold tight to her value and worth in her relationships. There is such a fine line between holding onto your worth and the willingness to change your bad habits for the sake of your loved ones. I want to control my emotions better, but I will never be able to hold them in as Richard does. It isn't in me, and I guess I don't want to apologize for that. The amazing thing is that he agrees. He hugs me and tells me he loves me at the end of the conversation today. It can't get any better than that.

Still I have a nagging guilt. I go back and forth between "I need to change my ways" and "Screw you, I am who I am," and everything in between. I am in awe each day of marriage and relationships in general and how wonderfully difficult and rewarding they are at the very same time.

And as if she can sense my hurting, the phone rings, and it is Amy. I tell her about my day and its difficulties. She reminds me, "It's just ONE bad day. You are going to have those."

How lucky I am to have those I love in my life...to hold me up, to reinforce my weaknesses and remind me of my blessings.

Have you told someone you love them today?

A Mom

2009-05-18T22:57:00.003-05:00

Hi all! I hope this finds everyone happy and healthy. I have been a busy bee lately! : ) I am actually getting over my "agorophobia" or fear of leaving the house. I went to two retirement parties this weekend - that was stepping WAYYYYYYY out there for me! I'm feeling more and more like myself. I don't think I'll be stopping counseling anytime soon, though. We have just scratched the surface, and it is so awesome to have someone to talk to who really seems to get it. I want to continue my story of Nick's birth, as the days immediately following were drama packed, as you might expect by now.

The terrible thing about Nick having to go to the NICU, was that I was unable to leave my unit for at least a day, while they monitored my heart and the redistribution of fluids in my body. I honestly felt as though my child was on another planet. Finally, in the early evening on the day of his birth, a transport nurse brought Nick into see me. Bill was there. I held him for the first time. The main thing I remember is Bill telling me, "If you put your hand above his eyes, to shade them from the light, he'll open his eyes." He was right.

Instead of feeling joy, I was insanely jealous and sad that my husband already knew the "tricks," the ins and outs of Nick, while I was stuck in the hospital room. Bill got to be in the NICU, introducing Nick to family members and watching as the nurses bathed him, fed him, and got him settled.

Again, a nurse came to my rescue - notice this is a recurring theme in my life. The transport nurse, probably a mother herself, seemed to sense my pain. Before she took Nick back to the NICU, she bent down and whispered, "I will bring him back later tonight, when you are alone, and you can have some mom and son time." It was just what I needed.

And sure enough, at about 11:00 pm, she returned with Nick. She told me she was going to step out, so we could have some time. Then she suggested I lower my gown, and lay Nick's tiny body directly on mine - skin to skin. She said it helps the baby to heal and grow. I followed her advice but was sure it was mostly helping ME to heal and grow. It was the most tender, beautiful, memorable moment. It is one I share often with Nick - whether he wants to hear it or not....:)

It was only a few days later, when the doctors decided I could go home. Unfortunately, Nick was not eating on his own, and so he had to stay at the hospital. Finally, I got to see the world again...I should be thrilled, no? No! It was horrible leaving Nick behind. And it was horrible leaving my safe nest behind. I felt scared and guilty that I did not want to leave the hospital. I knew that the world awaited me, and I wasn't sure how I would fair as a mom. I was not sure, although I didn't want to admit it, how Bill and I would fair together as parents. I longed to stay in the safety of the walls I'd been contained to for 10 weeks.

I cried the entire way home and most of the evening. I ended up going back to Columbia to feed Nick. I just couldn't stand being away from him. They gave me a number and said I could call any time I felt like it. And I did. But it wasn't the same as having him all to myself.

Even worse than all of that was how I was feeling physically. I knew something was terribly wrong, and I was scared to death to admit it. I was having a hard time breathing. I was coughing every time I would lay my head on a pillow. I did not sleep at all the first night I was home - partially because of my desire to be with Nick, and partially because I could not breathe.

This was an ENTIRELY different feeling than one I'd ever had before - both physically and emotionally. I was never so afraid in all of my life. It was so different knowing that someone, a tiny little being, needed me. I HAD to be okay. There was just no option. I could not be sick. I could not die. After all I had gone through, I had my baby, and I so desperately wanted the chance to be with him. I so desperately wanted a chance to simply be....

a mom.

The Absolute Most Beautiful Moment of My Life

2009-05-15T21:23:00.003-05:00

As a young woman, I knew I was supposed to be thrilled with my wedding day, and I guess in a way, I was. It was NOTHING, NOTHING in comparison to the birth of my son. I think most women who have given birth understand this. Our husbands are one thing, our children, another. As hard as it was, I look back at my time in the hospital with a sort of longing...there was a joy in having one single purpose in life...to give life to my son. I did not have to worry about the daily grind....and in that way, it was freeing.

As time went on, I began to know it was not going to be long before Nick would be born...even though it was weeks away from his due date. One morning, we met with a room full of doctors, who were all a part of coordinating one of the most complicated deliveries the hospital had ever seen. My case was "famous," in the worst way of being famous. I remember a nurse in that meeting interrupted a doctor (you go, girl) and said, "This is still going to be a wonderful day for you. We will not forget that this is a joyous moment for you." It meant so much that she understood that as unusual as my situation was, it still needed to be as "normal" as possible.

That morning, a "tentative" date was set for Nick's delivery. It was a date that was as far as they could go for Nick's sake, and as soon as they could for the sake of my body. Notice that I distinguish between myself and my body. My spirit and soul are ME...my body, with all of its faults, just carries me around. So, the date was set, the planning was done. The closer it got, the more nervous I became. I knew from the looks on their faces that this was a very risky proposition.

When the day arrived, I got up and was asked to take a special shower with that nasty orange betadine (sp?). After that, I was transfered to the Cardiac Intensive Care Unit, which was where I was to give birth to Nick. They wanted me in the CICU in case I had "problems" with the delivery and also because they put a special cath (tube) in my neck and down to my heart. That cath gave the doctors specific measures of how my heart was withstanding the strain of delivery. I cried in that moment. The cath felt awkward and scary in my neck. This was definitely NOT going to be anything close to normal.

When a child is born, the mother's body must absorb a large amount of fluid. This is difficult for a weakened heart like mine to handle, so this was one of the doctor's main concerns. They did not want to put my body through the stress of surgery (C-Section), but they also did not want me to push. Therefore, the plan was for Dr. Floyd to insert forceps and literally pull Nick out of me. Of course, he wasn't even Nick then, just the promise of a child.

The night before his birth was difficult for me. Since it was an intensive care unit, I had to stay by myself. I woke up in the middle of the night to the sound of hustling and bustling across the unit. I could see across, and I knew the man in that room had died. I saw his family crying, and I wanted to shout out that I was bringing a new life into the world, just has their husband and father had left this world. It was an amazing moment - a moment almost directly between life and death.

I was also in a tremendous amount of pain. I told the nurse to page a doctor, but she assured me everything was fine. Early, early the next morning, Dr. Floyd came in. The sun had not even peeked out yet. We both agreed last night was no night for sleeping. I knew he must be nervous. We had come to know each other. The whole hospital, even the custodial staff, seemed to be interested in knowing of this precious baby's arrival. He was responsible for making it happen. My whole life's happiness was on his shoulders.

Sure enough, the pain I was experiencing was labor. I was already dilated to four centimeters when Dr. Floyd checked me that morning. I was thrilled. It became real in that moment. This was really, really happening. Today. Today I would be a mother, something I honestly never, ever thought I would be. It was as if all the anxiety and fear went away and was replaced by complete joy. My family was there, all four sisters, my brother-in-law, and our dear friend, Stephen. I visited with each of them, but I was really in my own world.

My mom was a wreck. She was so afraid Dr. Floyd was going to scar Nick in some way by pulling him out with the forceps. I tried to tell her it was going to be okay. This baby was going to be mine. That was my only concern.

The closer the time came to delivery, the more pain I felt, even though I had been given an epideral. I have fairly severe curving in my spine, from walking with my prosthetic leg while growing, and so the placement of the epideral was very difficult. As luck would have it, the very best doc for this was out of town. I really felt for her replacement. He was pretty obviously nervous. In a room full of his peers, fellow doctors, he tried to place the epideral. Dr. Floyd stood in front of me, and let me lean on him. I remember him saying, as if I was not in the room, "We have to have her numb. There is no way she will withstand the pain, otherwise." By the grace of God, I did not feel the next contraction. It was a good thing, too, as I was fully dilated and Nick was coming one way or the other.

They quickly laid me back on the table and the whole world seemed to move at lightning speed. There was a whirl of activity and there were people crowded into the unit, gathered to watch the tenuous delivery of this miracle baby....born from a miracle mom. And still with all of the activity, I continued to be in my own world. I barely even remember my husband being there. I was focused. I was ready.

The first good pull Dr. Floyd took almost yanked me off the table. One leg in the stirups does not hold one into position very well. We all laughed. It was a detail that we all failed to think of. On the next pull, the nursed held me under my arms -one on each side- so I did not fly off the table. Dr. Floyd's head was as red as a beet with each pull, and for a moment I thought my mom was right...my baby was going to come out mangled.

I suspected I was having a boy, based on an ultrasound tech's slip up. Still, I wasn't sure. Dr. Floyd had asked me what the names were going to be. I told him, "Elena if it is a girl and Nicholas if it is a boy." I didn't understand at the time why he asked, other than out of curiosity. But then....with another gut wrenching pull....I understood.

From within me, from the very center of my being, came the most perfect little being.

"Hello, Nicholas!" Dr. Floyd proudly exclaimed, and the crowd went wild - literally. There was clapping and crying and laughing. I heard it but only in the distance, far behind the cry of my new baby. I was tuned in, completely, to him.

The nurse brought him to my side to show me his face. I knew immediately that he looked like me (YES! : ) ). He was almost five pounds, even though he was eight weeks early. This was one of many blessings. And since he was so premature, they immediately took him to the NICU. They took him away, far away, up at least two floors, all the way at the other end of the hospital, and it might as well have been across the ocean.

I was flooded with a joy and fear and anxiety that I did not know was possible. My immediate thought, one that has popped into my head time and time again in my journey as a parent: how did my parents do it? How do you let your baby go? How do you trust in doctors and nurses to care for your most, most precious creation? How do you live one second not knowing if everything is going to be okay? How do you suck it up for the sake of your child?

How?

Expect the Unexpected

2009-05-14T22:26:00.002-05:00

Have you ever been swimming in a pool and have the deep end come upon you without warning. All of the sudden the bottom drops off and it's sink or swim. In so many ways that is how I feel about my life in general. I will be going along, feeling fine, praising myself for how well I am doing and then BAM! The bottom drops off, and I am suddenly sad or irritated or emotional, when I least expected to be. Tonight was one of these instances. I watched Grey's Anatomy. Since Izzy got cancer, I have been thinking to myself, "don't watch this, Angie. This is going to upset you, Angie." Of course, I kept watching, and tonight I am in a terrible mood from a stinking tv show. It's just a show!!!! But many times it is the littlest of things that bring up the most emotion in me. The emotion comes out in a harsh, moody way, but what I am feeling inside is really fear.

Valerie, my roommate during my pregnancy hospital stay, was an absolute unexpected angel in my life....surely I must remember that for every negative shocker, there is usually a positive one as well. Valerie was just that. The most amazing thing about our relationship was how natural it was, all the while knowing that we probably never would have been friends outside the walls of the hospital. Our backgrounds were different in so many ways, but we just really clicked. When I look back, it seems that the qualities that matter most, are what led us to be good friends: our love of family, our reliance on and love of our moms, our open-mindedness, and our desire to be mothers. We both had men in our lives, who were obviously important parts of the equations, but we counted on each other because in the end no one knew what it was like to be us, to be trapped in this room filled with such expectancy and fear.

We developed a pretty regular routine in our room - we would get up, go to the showers one at a time, eat breakfast, watch TV, talk to the doctors and nurses on morning rounds, talk to visitors who came each day (and then talk about the visitors after they left - always good things), then lunch, then a nap, then Oprah, then dinner. After dinner was the time when we put a stretchy elastic belt around our growing bellies and listened to the steady rhythm of the babies' heartbeats. The promise of their lives filled the room and reminded us why we were there.

About four weeks into our time together, the docs came around for morning rounds and announced that Valerie could go home if she promised to maintain strict bed rest. I was devastated. The curtain was pulled between our beds, but I could hear their every word, and I knew she was thinking of me on the other side of the curtain. I laid back and put my pillow over my head. When the docs came to my side, I only removed the pillow partially and gave as little information as possible. In fact, I was snotty. Again, that nasty fear coming out. "I'm fine. Just like yesterday, just like tomorrow and the next day and the next day. I'm fine."

Dr. Floyd said, "I know this is hard for -"

"I'm fine!" I cut him off. I was not going there with him. Not on this day.

To no one's surprise, I was sent upstairs the day after Valerie left with pre-term contractions. Probably the stress, they said. I needed to relax. Not worry. Don't be upset. It's not good for the baby. Each word, each piece of advice fueled the fire of my uncertainty and anger. When Bill came in that evening, three hours after he said he would, I was furious. No explanation he would give could calm me. I lifted my leg and kicked the bed table as hard as I could, knocking over the table and everything on it. It was a brief moment of pure, unleashed anger. I could see the look of surprise in the eyes of Bill and in the eyes of the doctors and nurses who came in to try and calm me.

I remember the doctor looking me directly in the eyes and saying, "You have to calm down. Please. Today is not the day you want to have this little one. Please." And so the anger subsided as I tried to think about the well-being of this little one inside of me.

I felt really, really, really guilty when my mom came into the labor and delivery room a day later and told me, with a smile on her face, that Valerie was back. I knew it wasn't fair for me to wish for her hospitalization and the dangers that went with the need for it, but I couldn't help feeling a wave of relief and comfort in knowing my sounding board, my friend was back.

When they wheeled me into the room later that day, she smiled, too.

"They told me not to go anywhere or do 'IT,'" she laughed, looking only momentarily embarrassed with my mom in the room. "So the first thing I did was go to Wal-Mart and then, well, you know!"

"Valerie!" I said in the best scolding voice I could muster. "You really need to listen to what they tell you. Really, you do. I was getting used to you not being here."

"Whatever!" She continued to laugh. And I did too. It was what we both needed.

And so continued the cycle of unexpected sorrows and joys, when one evening we were on the monitors, chatting away, and the nurse entered the room looking concerned. Valerie's little girl (she knew what she was having, I did not) was in distress according to the monitor. Within five minutes a doctor came in. It all happened so fast. And then they told her she was going to have an emergency C-Section. In the next half hour!

Val's husband was/is a truck driver and was on the road. Her mom was an hour away. Tears streamed down her face, as they hustled her off to labor and delivery. She was alone. For the most important event in her life to this date, she was alone. I was consumed with worry and helplessness, when five minutes later, one of our favorite nurses came in the room with scrubs in her hands.

"Valerie has requested your presence," she said in a cautionary tone. "The docs have okayed this if you can promise us you won't get yourself all worked up!" Then a smile broke out across her face. "Come on, we have to get you dressed."

I was in shock. Complete shock. I never expected to be on the other side of the coin on this one. I never dreamed I would have the complete joy and honor of helping my friend welcome her child into the world. I was overwhelmed with emotion.

Armed with a disposable camera, I entered the operating room, pushed by my nurse. The doctor was smiling - I could tell even with his mask - his eyes were sparkling. "You are going to be calm, right?"

"Oh, yeah, sure," I said, with a quiver already in my voice.

"Thanks," was all Valerie said as I rolled up beside her. I knew she meant it, and I could feel her fear.

"It's going to be okay," I assured her.

And then it happened.

"Angie," they said my name with urgency in their voices. "Stand up and look over the curtain. Take a picture! She's coming out!"

I stood up on one very wobbly leg, and there coming out from inside my friend was the tiny, tiny being whose heartbeat I had come to know and love. The light was shining down exactly on her, as if to announce her entrance into the world.

"Oh God! Oh God!" was all I could say. Over and over again.

The whole world stopped in that moment, and it is a moment I will never, ever forget.

"Angie," the nurse shouted my name, bringing the action back to the scene. "Take a picture."

"Oh, yeah, oh, God," I was a mess. My hands were shaking terribly, but somehow I ended up getting some good pictures to share with Bob and the rest of her family.

When they showed Bobby Jo to Valerie, I was in awe of her tiny size - a little over two pounds. And at the same time, I could not believe that she was, just moments ago, inside Valerie.

As soon as Valerie got a good look at her, they whisked her tiny baby girl off to intensive care. It was a moment neither of us expected. It was not in our "plans." It was, no doubt, a miracle. For the rest of the night, and for days to come, I could not settle the butterflies in my stomach, knowing that soon I would have a miracle all my own - at least I hoped so. No, I believed so.

Life in a Cubicle

2009-05-11T22:39:00.002-05:00

The weeks I spent in the hospital were like the most adventurous roller coaster one might imagine. I was completely disgusted at first that I had a roommate. In the first few weeks, the women who roomed with me came and went, while I looked on jealously as they got discharge orders. First and foremost, I wanted a healthy baby, but there were times when I was absolutely desperate to escape the confines of the hospital. Soon, however, I made my "nest" and began to establish a fairly normal routine - one I would even miss one day.

Part of my survival was to decorate the blank wall that stared me in the face. I covered the wall with cards, with a collage that Lori and I made together, and with a banner that my dear friend Angela made, which read: God danced the day you were born. My mom and Amy brought me the essentials of home: lotion, make up, hairdryer, comfy clothes, and my most necessary item: my pillow.

I was on oxygen, but other than that, I was free of tubes and wires. They only put in an IV if I needed fluids. I almost always kept the curtain drawn between the beds. I really had no inkling to talk to my "roomies." That is, until one day I was watching TV and a hospital volunteer came around with magazines. I was in the bed closest to the window (farthest from the door), so the volunteer first asked my roommate if she wanted a magazine. I was shocked when I heard the small, young voice reply cheerily:

"No thanks. I can't read."

WHAT???? You can't read???? I had already discovered, through inevitable eavesdropping that this was the young ladies second child. She was nineteen years old, this was her second child, and she could not read.

I immediately threw back the curtain between us. "You're joking, right? You surely can read," I said partly in awe and partly in desperation.

She seemed unphased by my shock and concern. Even more frightening was her utter lack of embarrassment. She was perfectly alright, or at least appeared to be, fine with her illiteracy. As a young, naive, and over zealous English teacher, I just could not let it go. My husband (now ex-husband, Bill) was urging me to leave her alone.

"I'll tell you what," I said in the nicest voice I could muster, "I'm an English teacher, so how perfect! If we are just sitting around here, I could teach you to read!"

I could see by the look on her face, she was less than thrilled and utterly confused as to why I would make such a request. She looked back at me as if I was from Mars.

"Ugh, no thanks. I think I'm only going to be here for a few days."

With that she pulled the curtain, and I was honestly glad when she was released just two days later. I could not stand the idea of not being able to get my hands on such raw possibility, especially for the sake of those small babies she was raising.

Mostly, I spent my time enjoying visits from friends and family, taking occasional walks to the courtyard (me in a wheelchair), and I even looked forward to my daily shower. It meant a few minutes out of the room at least. I was almost four weeks into my stay when I started experiencing pre-term labor. The first time it hit, I literally thought I might die from the pain. I started to get really worried about the birth and about this "no turning back situation" I had myself in.

The ob/gyn doctor on call came to my room and examined me after a few hours of contractions. He was disheartened to report that I was dilated to a one. This meant, the contractions were causing dilation, which would eventually cause birth. Thus began my trips upstairs. Up one floor was the labor and deliver floor, and any time you had contractions, you were sent up there. When I went up to that floor, they assured me they would keep my room in order for me...as silly as it sounds, this was important to me. It was my home.

The next two days were awful. I received a nasty medicine called "MAG" to stop the contractions. I was vomiting and burning up hot from the medication. I was also having a hard time breathing because of all the fluids they were pumping into me. At this time, I was 25 weeks. The doctors explained that they would, at the very least, want me to get to 28 weeks. They sent in a social worker from the Neonatal Intensive Care Unit to explain to us what would happen if I delivered prematurely.

The amount of information we had to digest, on top of feeling horrible, was overwhelming. I was scared. I had rarely, believe it or not, felt fear through my childhood illness. And this fear, it was new....urgent, protective fear. Something that I came to know comes with motherhood.

Luckily, they were able to stop the contractions, and I was sent back down to my "home." My mom had stopped in there the day before and excitedly reported that she thought I got a roommate I just might like!

As I was wheeled in the room, I met Valerie and her mom. It was an instant connection. It was a gift from God. I finally had a friend to share my home....to share the adventure in a way that only someone confined like me could. The curtain between us was pulled back, and we embarked on a journey I'll never forget.

Forced Patience

2009-05-10T22:07:00.002-05:00

At the end of the day, in the eyes of a child, you can

see all the things that make the journey worthwhile.

--A. Danielson

I have a really, really hard time waiting on anything. When I buy a present for someone, I can hardly wait (and usually don't) to give it to them. I hate waiting in lines. I hate waiting on the results of medical tests. I hate waiting for my hair to "process" when I get highlights...I'm just DYING to know how it is going to look - NOW! My loathing for waiting was never more true than in the months I had to wait to see my most precious baby boy.

I found out I was pregnant pretty early in April and could not fathom waiting until December 15th to have my little one. Never can I understand the stories of women who give birth, claiming to have never known they were pregnant. In one way, that sounds appealing to me - BOOM, the contractions hit and soon after, a baby. On the other hand, as tortuous as it was for me to wait the long months to see Nicholas, I count those months as some of the dearest in my life. To think - there is an actual living, breathing being in there - NO WAY! Any mom knows just what I mean.

My waiting for Nick was, as are most things for me, an ordeal. As I mentioned in the previous post, it became obvious very soon into the pregnancy that I would need to be followed by a maternal fetal specialist. I will never forget my first appointment with Dr. Floyd. He opened the door to the examination room and said, "Well, I finally get to meet you. After reading and reading and reading and reading your chart, I think you are a pretty interesting lady."

I wasn't impressed. I'd heard it before. In fact, I was annoyed. Little did I know the short, balding man in front of me would soon become my hero. He informed me through a series of appointments, tests, and procedures that I had pulmonary hypertension induced by the pregnancy. If you read much about this condition, you learn very quickly, it is a serious and life threatening condition...luckily back then I didn't even have internet at home, so I didn't really know that - probably just as well don't you think? He wanted to see me on a very regular basis, and I was to have regular echos on my heart. An echo (or echocardiogram) is a test on your heart similar to an ultrasound you have of a baby. Not at all a painful test, just annoying.

The amount of appointments was daunting. I was told right away that I would not be working at all in the upcoming school year. This was devastating both emotionally and financially, but pregnancy is such a joyous, anticipated event, I was more than willing to do whatever necessary. Still, I had no idea what that might be. That is, not until a routine appointment on August 25th. I went by myself to this appointment, which was HIGHLY unusual, but my parents were out of town and my husband was working. We needed the money, and I assured him I could handle ANOTHER appointment on my own.

When Dr. Floyd entered the room, I could see a look of uneasiness in his eyes. I was already getting to "know" him well....It does not take me long to learn the mannerisms of a doctor or nurse and what they mean. My heart flittered in nervousness.

"Well," he began calmly. "Things seem to be under control, but your pulmonary pressure is higher than we would like. So, we are going to admit you today. We think being on oxygen is going to help, and we would like to run some more tests."

I was not really that freaked out at this point. Hospital stays were, obviously, nothing new to me. "Okay," I replied calmly. "How long is it going to take? How long should I expect to be in the hospital?"

The look on his face said it all. He knew then that I did not understand what he meant and that perhaps he should have been clearer.

"Uh," he stuttered a bit. "This admission is for the rest of your pregnancy."

The room sort of spun out of control and for the life of me, I could not even count how many months were between August 25th and December 15th. I was trying to count them in my mind, trying to grasp the reality of the words that just came out of his mouth, and then it was like a flood gate of thoughts opened up in my mind: I didn't bring a toothbrush, I don't have the nursery ready, I don't have clothes, I need to talk to my mom, I need....and then I remembered something crucial: I had parked illegally. So my response to his announcement was as follows.

"I parked illegally, and I need to move my car."

"Oh no. You'll have to pay the ticket. I have a tech waiting with a wheelchair to take you over now." I could tell by the stern tone of his voice that he was not messing around. I later learned that he didn't let me go move my car because some women leave and don't return.

So, off I went in shock and disbelief, to live, to wait, to nurture my baby in a 9 x 7 space (semi-private, even) that would become my nest for the next several, very interesting weeks.

Today, I don't even consider it more than a blink in my history, but as it was happening, it seemed that time never moved so slowly.

And eleven years later, my Mother's Day gift for enduring those weeks in a tiny, maddening space: a simple "Happy Mothers Day" followed by a day at the ballpark (I know, shameful to have a ball tournament the weekend of Mother's Day). But as he crossed home plate, clapping his hands together and smiling brilliantly (followed by lots of whooping and hollering by me), I wouldn't have had it any other way.

Happy Mother's Day everyone!

In the Blink of an Eye

2009-05-07T21:45:00.002-05:00

Today was, well, amazing. Nothing really, really out of the ordinary or particularly amazing happened. EXCEPT for the following:

-I went into town to run errands with no crying or anxiety about leaving the house.

-I dropped off some art pieces at Initially Yours, where I am displaying some art for sale.

-I picked up my beautiful boy at school, looked over his papers, and took him to get his weekly allergy shot.

-I went out to dinner with Richard and Nick.

-I watched a great night of TV but especially the Michael J. Fox show on optimism. Amazing.

-I talked to my sister, Vicki.

So, yeah, it was a great day. It reminds me how quickly things can change. How in the blink of an eye, things can change - for the better or worse - but today I got the better half. Thank you, God.

Finding out I was pregnant with Nick was most definitely a "change in the blink of an eye," moment. To say the very least. I did not think we were ready financially for a baby. In the back of my mind, however, was hearing the doctors talk about the possibility of infertility as a result of chemotherapy. I thought, therefore, that getting pregnant might be quite an "ordeal" as are many things in my life. Well, I was wrong. A month into the effort - a slight pink line on the pregnancy test.

I called Amy first. My question: If the line is just light, does that still count. "Yes!" she said excitedly. I remember the whole thing so vividly. I was excited, so excited and surprised. Not far behind came fear and insecurity. How would I manage this pregnancy? How would I carry a baby and not worry about falling? How? How? How? The questions piled up in my mind and heart, but I refused to let them out.

As I told others about my pregnancy, I could see the concern in their eyes as well. They were excited, too, but behind the excitement, I knew they held the same questions I did. Still no one really spoke of the concerns. Not until I told my friend Kathy about my pregnancy. She is my dear, dear friend who is a nurse in pediatric oncology. She took care of me for a short time, and then as I got older, we decided to become friends. When I told her about my pregnancy, I did not have to wonder about her feelings. They were written all over her face. We were at a planning meeting for Camp Quality, when I told her. She had already heard my exciting news. Others were around, so she simply said, "You probably want to get a specialist in maternal fetal medicine. There may be some issues. We'll talk more later."

Issues? What issues? A few weeks later we were at Camp Quality, and she told me, "They may ask you if you want to have an abortion." An abortion? What? "There are new studies that are showing childhood cancer survivors can have serious problems in pregnancy."

Immediately I was in tears (a sign of my raging hormones, for sure). "What kind of problems?"

Well, it's not very well understood yet, but when you are pregnant, your heart has to work twice as hard. People who have had as much adrimycin as you have had sometimes can't withstand the stress on their hearts."

"And they die?"

"Well, not necessarily. Some have congestive heart failure and there are other issues. Listen, you don't know. You need to see that specialist, and they will know more."

I look back and am so thankful I had Kathy there to give me the "scoop," as hard as it was to hear. Still, I don't think either of us had an inkling of the journey on which we were about to embark. As are most of the most precious moments and times in life, the journey was filled with the greatest pain and fear possible and at the same time the greatest joy possible. It was a time in my life that seems like just yesterday....

And now my baby is eleven and bringing home information about the human sexuality unit they are going to be covering next week. He handed me the paper and dashed out of the room. I came out of the bathroom, and he was standing there in my bedroom. I let out a big, joyous "WhooHOO! Human sexuality! How exciting!"

He replied without missing a beat, "Oh geez, Mom, she said they don't even get into any of the real detail until next year!"

Thank goodness!!!! because time seems to be moving just a little too quickly for this mother of one. Nick was my ultimate gift from God - my one chance to be a mom. How thankful I am for that chance.

The evening of the day Kathy and I had our talk at Camp Quality we were "graced" with presence of performers Paul and Win Grace. They were regular performers at camp, and their daughter, Ellie, had become part of the camp staff and is a dear friend. They sang a song that night for me, called "Child of Mine." You can listen to the song here. My favorite part of the song is as follows and is something I think about so often. It says....

Child of MINE,

where SPIRITS fly above,

there is just ONE that belongs to you.

Let it grow, let it GROW,

and it will thrive on LOVE,

for it is LOVE that sees us through...

Jealousy?

2009-05-06T22:13:00.002-05:00

Good Evening!

I was perusing Facebook today - actually I was on there for a "work" related reason, and then got a bit distracted. I came upon a dear friend's page and noticed that she had added some pictures to her page. One of the albums was of a very nice vacation recently enjoyed. I am ashamed to say that when I saw a picture of her, in shorts, enjoying herself and her children so much, I was overcome with insane jealousy. It is not an emotion I have felt for a long time, and I hate how it feels. It made me stop and think, though....

I have been meaning to call several friends. For some reason, I just cannot make myself do it. When I looked at that picture today, I began to wonder if part of what is keeping me from calling friends is a fear of the feeling of jealousy creeping back in. I have kept in touch with the outside world through an almost nightly phone call with my dear, dear friend, Jennifer. I am sure that the reason I feel comfortable talking with her, is that she is one of the few I know gets "it" because she has as much or more "shit" to deal with in life. She knows what the pain is about.

Is this fair to my other friends? Of course not. Again, embarrassment, shame, fear creep in. I just keep telling myself that I am doing the best I can right now. I certainly do not wish any hardship on anyone, especially my dear friends, but it is so difficult to explain what I am going through, and some days I just can't "pretend." I used to be great at pretending, and that seems to have gone out the window. This is definitely on the growing list of things I want to address with my counselor.

The really, really, really silly thing is, when I step back and look at my life, I think to myself: "Others are probably jealous of this life." Take tonight for example. Nick stayed the night with my mom, so Richard and I took the early part of the evening to go fishing. We have a five acre lake that Richard built himself. It is absolutely beautiful. We found a spot, Richard flipped over a five gallon bucket for me to sit on, and we went to town. I caught several fish, and it was a lovely evening. What in the world do I have to be jealous of?

And still, I am on a daily basis so glad that others are not able to hear my thoughts....Amy says they are usually written all over my face anyway, but I'm working on that! : ) Daily negative thoughts that I fight off:

-What the f*&! do you have to complain about?

-Could you look any better in that outfit?

-I am fat.

-I am ugly.

-I hate my fake leg.

-I hate my skin.

-I wish I made more money like I used to.

And on and on and on. Negative self-talk is sooooooo damaging, and I know that. But stopping them is so much easier said than done. Don't you think?

Yes, I realize these are all "normal" emotions and yet I am surprised each day how I can so easily get stuck in these negative moments. I usually turn to my art to redirect, or like tonight, fishing. I have plans to go on an overnight with some girlfriends this weekend - something I craved before. I am still looking forward to it, and trying to think positively, but wondering how I will feel come Friday night when it is time to actually go. I am going to TRY and focus every moment of the "anxious time" on the fact that I am insanely blessed with wonderful friends (including my twin, Amy) who not only put up with me but encourage me, laugh with me, cry with me, and let me know that it's absolutely fine to be so jacked up.

I cannot believe that tomorrow is Thursday already! Wow! The days and weeks are just flying by. I think in the next few days, to celebrate Mother's Day, I will write about what it has been like for me to be a mom and what I/we went through to have Nick. It's a great story with an even greater ending! : ) Stay tuned....

Roller Coaster Day

2009-05-05T23:28:00.002-05:00

Today I had a roller coaster day. Is roller coaster all one word? I can't remember. Anyway, it began by not sleeping well last night. It was 4 am, and I was still awake. I finished a novel, thought I could go to sleep and just tossed and turned. Eventually I went to the guest room, which has a 19 ft. ceiling in it and a huge window. It feels like you are sleeping outside. The moon was shining so brightly, it was almost as if a light was on. Around 4, I finally went into a fitful sleep full of weird dreams. So, I woke up tired and cranky. Not a good start for me.

I was scheduled to meet with a store owner today to show her my artwork and pendants. I wanted so badly to be excited. I love doing the art business (which I am not really sure you could actually call a business at this point), but I feel like I am crippled with self-doubt and fear....emotions that are new to me in terms of pursuing my goals. Those who know me well, know that when I want something, especially professionally, I just go for it. I have in the past had every confidence in myself as a counselor, teacher, speaker, writer, and advocate. As I mentioned before, this has slowly been draining out of me for the last several years. This blog is very therapeutic for me, and I find myself looking forward to writing in it. But it is fairly "safe," and I think that is why I like it.

Part of my struggle right now involves leaving the house. It is so embarrassing to write about or even admit, but it is true. On the days, like today, that I know I have something to do where I have to leave the house, I am wrought with anxiety.... I become irritable and I physically hurt. It pretty much comes to a "head" when I actually have to get in the shower and get myself dressed and ready to go. I am still badly scarred from the drug reaction I had at the end of February. I have these big purple splotches and marks all over me. I guess one would think that someone with one leg wouldn't care about something like this. But it's like it is just one thing more. Now it is getting warm outside - and I'm always sweating anyway, and I don't want to wear short sleeves or capris because of how I look. Plus I've gained weight.....ugh, the list goes on. I know this is a common thing, probably especially for women, but it has become a serious burden/obstacle in my life at this point. I get shaky while in the shower, and today I cried and cried while I did my hair, tried to put make up on, got dressed and left the house. I kept repeating, "I don't want to go," but there was a tiny part of me that also knows I just cannot give up. I wish I could explain, though, how much effort it took to leave the house today.

Richard drove me in to my appointment, and thank goodness we live 20 minutes out of town, so I could get my shit together before I got there. Richard held my hand, and I took deep breaths, and by the time we were at the highway (about seven miles down the road), the feeling began to subside. This is the usual pattern. Part of what is making this so hard for me is knowing how unlike me it is. I used to HATE sitting at home. We were always, always on the go. I feel like some creepy person out of a book or someone who might be on Oprah one day: Today's show - Women Who Haven't Left Their Homes in Weeks. This is really stupid of me, too, because I'm a counselor. I know these issues exist and that there is nothing BAD or creepy or freakish about it, but I still feel those things on top of the anxiety.

Basically, I have a short list of things that help me get through these times:

1. Richard. He is my rock right now. What would I do without him? I can't think about that either - more anxiety.

2. Nick. He needs me to show him how to work through problems, to FIGHT, to not give up or give in, to ask for help.

3. The blog.

4. Medication and counseling....both of with which I have love/hate relationship.

5. Paula Dean. Did you know Paula Dean was an agorophobic? Not sure if I spelled that right, but it is someone who is afraid of leaving home. Such a wonderful "title" to add to my list of medical titles. Paula doesn't really help me THAT much, but it does help me to know there is success possible beyond all of this.

6. My Family. My mom and sisters may be pissed I ranked Paula above them, but it's not really a ranking just a list. My family continues to be such a support to me, and I think I have grown in my relationships with my family through this, especially my sisters, and especially Lori. I love you, Lori.

7. My friends.

8. My faith.

I could list a few other things, but then I might actually not even be able to complain because my short list is getting long, and so what do I really have to complain about?

Right now, I am having an okay moment, and so I can write and joke. What I felt earlier today, though, is very real and very painful and when I am in those moments, I just want to give up. I will continue to muddle through. I know, I believe, I trust that it will get better. I will be confident again. Someday...

P.S. Thanks for those who have written and called to support me in writing this blog. I appreciate it so much. Some have asked how to leave comments. Just click where it says "Comment" below the post. I know, it's seems obvious, but I have a few computer illiterate readers....and you know who you are! Ha! Ha!

Tired

2009-05-04T21:59:00.005-05:00

I really, really, really hate to leave my faithful readers hanging, but there is absolutely no way I am writing about faith tonight. I have had a long day of working on "stuff" for my new art biz. I am meeting tomorrow with a new shop owner in town, so I've been preparing all day. At one point, I was about to throw my printer through the window (it really is a shame I don't have a counseling appointment again until next week), so I stopped and created this:

and thought about this:

and then I felt better. Okay, I took a nerve pill, too, and some benedryl for this nasty sinus thing I have going, but it was the above that helped most.

Talk to you later.

P.S. If you haven't, check out my art website. I am having a problem with my "store," but if you see anything of interest, just contact me. The above print is an 8 x 10. It's pretty cool, too! : )

Do You Believe in Miracles?

2009-05-03T22:16:00.003-05:00

Part of discussions of faith, especially related to health, would at some point have to come to a discussion of miracles. How do we as humans, with our limited knowledge, decide what is a miracle and what is not? When I think of a miracle, I think of some grand event that defies all reason and logic. Others may think a fairly ordinary event is a miracle. Sarah McLachlan sings a song in Charolette's Web that is titled "Ordinary Miracle." You can listen to it here. It says: "Its not that unusual when everything is beautiful, it's just another ordinary miracle today." I know I do not pay close enough attention to the ordinary miracles that happen in my life...and maybe none of us do.

When I was ten years old and had just had my amputation, I went to Mayo (in Rochester, MN) to get fitted for my first prosthesis. When I got home with my prosthesis, there happened to be a mass of "healing" at the Catholic church that same evening. Of course we went. The mass was conducted by a traveling priest, not our usual priest. It was an extremely evangelical event for a Catholic mass. People went up to the alter, were prayed over, and collapsed. Even at ten, I was not a believer in this type of thing.

Part of a Catholic mass is to bring up the wine and bread to the priest. It is called the "Presentation of the Gifts." When we arrived at church that night, we were asked to do the presentation of the gifts. It would be a great effect, right? A little girl with one leg and cancer hobbling up in front of everyone - perfect. You may or may not be able to pick up the anger in my tone. I was just learning to walk. This was not something I was ready to do, but I was not asked, I was told.

So, when we got up to the alter, the priest put his hand on me and said, "If you pray hard enough your leg can come back."

-This is where you gasp in horror -

We returned to our seat, and I was crying. Bawling, really. All I remember is my dad telling me to stop crying. Even when I think of it now, it makes me tear up. It is a source of major contention between my parents and I. We hardly ever talk about it. I don't even like to write about it because I don't want you to think my parents were/are awful or anything. They always, always, always tried to do their best with the situation. This decision and their reaction to my feelings was, in my opinion, wrong. It shaped me in a way I cannot even begin to explain, but I'm sure you can understand some of the implications.

Oddly enough, the subject came up one night when my mom was with me in the ER. I don't remember, even, why we were there. It was one of the instances, though, where the doctor went on and on about what a "miracle" it is that I am alive.

"It is a miracle," my mom said.

"I don't know. I really don't know. Maybe it's just something we don't understand because of our limited knowledge. But call it a miracle if you want. It's just like that healing mass in Hampton," I began. "Do you really consider what that priest said to me to be true?"

Without skipping a heartbeat, she said, "I consider all things to be possible with God."

I assumed that was a "yes."

"I want to believe that, but I can't. If it's true, why hasn't it happened? Have I not prayed hard enough?" I could feel the anger well up in me.

"You survived. Maybe that was the miracle," she said simply and assuredly.

I let the discussion end there, but I have thought about that discussion many, many times since. I am amazed at my mom's faith. Jesus did heal the blind and cure the sick in the Bible....I just get so angry at God when I really stop and think about my own hurt and all of the hurt and suffering in the world. If all things are possible with God, why do I have all of this struggle? Why do faithful people I know have struggles much, much worse than mine, even? Anger is the second step in the grieving process, so maybe I am stuck there.

There was a minister who came to the asylum, and he handed out a poem that I am going to share tomorrow - I know I said today, but I had to give my background first and it is an experience that requires a whole post - so tomorrow I will share the poem and whole experience with you. It was another message to me, I am sure of it....how quickly, though, we forget those messages and fall back it our ruts of disbelief.

I will end with one of my favorite verses of Mother Theresa. It calms me to read it, it reminds me to let go of hurt, to keep doing what I feel is right, and to feel okay about the obstacles in my way. It is said that she had these words written on her wall.

People are often unreasonable, irrational, and self-centered. Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives. Be kind anyway.

If you are successful, you will win some unfaithful friends and some genuine enemies. Succeed anyway.

If you are honest and sincere people may deceive you. Be honest and sincere anyway.

What you spend years creating, others could destroy overnight. Create anyway.

If you find serenity and happiness, some may be jealous. Be happy anyway.

The good you do today, will often be forgotten. Do good anyway.

Give the best you have, and it will never be enough. Give your best anyway.

In the final analysis, it is between you and God. It was never between you and them anyway.

Amen. And goodnight.

The Pressure of Survival

2009-05-02T21:08:00.002-05:00

Tonight I have decided to start what will probably be several entries on how my faith has impacted my life, specifically my treatment and my life as a survivor. Faith....like peace of mind, can be so elusive. To be honest, I have to admit that in my life, and especially in the last several months, I have had many, many doubting Thomas moments. Moments where I just am not sure what God has in mind or why what has happened to me is or isn't in the plan. At the same time, as I look back over the past months, there have been some crystal clear messages given to me that have renewed and supplied my faith.

I guess some would not even think of these small acts as "signs" or "messages," but I believe that people of faith have to be listening for messages all the time. One message was given to me at our family Christmas get together in Iowa. We have started filling out those surveys that you get on e-mail among our family, and it has really been an opportunity to learn about each other. So one of my sister-in-laws created a survey for all of us to complete with questions all related to Christmas. One of the questions was: what is the best gift you have ever received? We went all around the room for all of us to answer. When it came to my brother, Jamie, he answered, "Him." And we all knew he meant Jesus. My first reaction: shame. My second: thankfulness. I had not even thought in that direction, but my brother had brought me back there. I needed that shaking.

The second message came when one of my other brother and his wife were visiting. We were all sitting around the room talking about the movie The Passion. Amy was saying that when she saw the movie, she thought they overdid the beating. "No one could withstand that kind of beating," she had said. My parents reminded her, "No one but Jesus." Through him all things are possible. My brother followed the comment with, "And he did that for you. He did that for you! That's how it works." I could not believe my ears. My brother has not been particularly religious over the years, and I have never heard him say anything related to faith. The conversation went on as if nothing happened, but again, I felt the message was at the very least partly for me.

So where do I get stuck? I get stuck when I think of all who have died in their fight. The many, many children and adults whose stories I have followed and supported who did not win the fight. I get that there is more than we understand going on here. I understand that I cannot understand the plan. Yet I still feel a certain amount of pressure in having survived. I feel as if my actions are not only for my benefit but also for the benefit of those who died. Since I have been given the amazing gift of life, I feel I cannot waste it. I have to use every single minute to be the best I can be. Let me tell you something -- this gets tiring, really tiring. It is obviously impossible. None of us are perfect, least of all me. And yet there has been an urgency to my life that was driven by my belief in the precious gift God had given me by giving me my life.

I also have to admit that part of my suicidal thoughts included the thought of anger directed toward God. I thought to myself, "This life you gave me, God, it's not so damn hot...."

There are many things about the Catholic church that I do not agree with. Part of their beliefs include the idea that suicide is a sin and that those who commit suicide have a chance of losing their spot in heaven. I personally believe in a more forgiving God. Yet I still believe that life is a precious gift. Our bodies are to be cherished and taken care of.

I think that's enough heavy stuff for the night. Tomorrow I will share with you a poem that was yet another message given to me at the asylum, of all places.

Sleep tight....don't let the bedbugs bite!

Vocation

2009-05-01T19:26:00.002-05:00

I am sorry to report that I just paid money to watch Beverly Hills Chuhuahua (I never know how to spell that and am too lazy at the moment to look it up). Let me just say, it was not my favorite movie. More importantly, I sat in the same room with Nick for an hour and a half. We haven't had the opportunity to do that much lately. Of course, as soon as the movie was over, he said in his grown up "cool" dialect, "Seee yaaa! Cards are on, so I'm outta here!" Oh brother!

I have spent lots of time thinking over the last several months about my purpose in life. I was so afraid to stop working because I felt it would leave me with no purpose, and I have, in fact, let myself feel that way so much over the past few days. Richard and I have had many, many discussions about this in the past weeks.

Last night, I helped Nick with some English homework. When he went to the other room, Richard commented, "And you think you have no purpose?" Okay, he got me there.

In the Catholic church there is much discussion about one's vocation. It has to do with your path in life....a vocation to religious life (priest or nun), a vocation to the single life, the married life. Vocation also has to do with one's purpose in life. It is not a job - as in work for pay. It is a passion. It is what is in your soul to do with the time you have been granted in this life.

I have always felt part of my vocation is teaching. I feel - and I say this in the most modest way - that I was born to be a teacher. This does not mean that I have to have a job teaching in the classroom. This blog, for example, can be my teaching tool. My interactions with Nick are almost always about teaching...although sometimes he is the one teaching me! : )

At the asylum, we were in a group session, and I was sitting quietly and listening a young guy talk about his life experiences. He was speaking specifically about his anxiety and inability to talk to other people, especially people in public.

With out even thinking, I turned my body to face him and said. "Okay, lets pretend you and I are sitting at a park. I am going to look your way, and you say, 'Hi, how are you?' Are you ready?"

He seemed kind of shocked, but he agreed to play along. I turned back around and faced the others, and really was pretending I was in the park. I looked his way, and he said, "Hi, how are you?" His face was bright red, but a huge smile broke out across his face when he finished speaking. I was equally excited as were the others in the group. I clapped and did a fist pump in the air.

"YES!" I said excitedly. "Seeeee, you can do it. That wasn't that hard was it?"

"Well, not really," he agreed.

Suddenly I realized that I had completely taken over the group. I looked at our therapist, who was grinning.

"Well, thanks Angie. My job was fairly easy today."

There is absolutely nothing in life that moves me like teaching someone. In the days and weeks to follow, I know I need to keep this in mind. When I am down and feel I have no purpose, I need to remember my love of teaching.

What I am beginning to wonder is if I can teach myself. I mean, I know I can. I taught myself to knit from a book. I know it's possible. But how to do you teach yourself to accept what you see in the mirror? How do you teach yourself to let go? Perhaps most importantly, how to do you teach yourself to be open to learning? Teachers are often the worst at being taught. After all, we are sure we know everything! Just kidding, sort of. I need to be open to learning from my therapist and from those around me. I have closed myself off for fear of the ugly flip side of every situation. I feel my courage coming back, though. I feel the door opening again.

What comes in the door and what goes out should prove rather interesting!

Two Sides to Every Coin

2009-04-30T22:03:00.004-05:00

I have been working today on creating notecards for my art shop/business/endeavor. You might check out some cool additions - there is a button to my website on the right. Anyway, as I worked today, I received some emails regarding this blog and its potential benefit for other survivors and their families. I was thrilled to get the feedback, and as I have mentioned in previous blogs, one of my main purposes in writing the blog is so that others might be able to relate to my situation. And yet it is scary putting yourself out there. What if others are offended or what if they think it's all a bunch of crap? It seems to every benefit in life there is a cost - a flip side to the coin. I know, I know. This is a basic fact of life, but lately it keeps slapping me in the face.

Some examples in my life: I survived cancer, but I am left with serious heart and lung issues; I am addressing my issues, but it will mean exposing pain for awhile; I have the luxury and opportunity to stay at home and address my issues, and yet I miss my work, and I miss my money. I have an annoying ex-husband, but without him I would not have my beautiful son. My parents raised me to do all my sister did, to not be "disabled," and yet I felt the need then to always be strong. I hate having a handicap logo on my car, but I love having a close place to park, especially on rainy days.

What it boils down to, I have come to discover, is choice. Our lives are about choices, and that is hard for me to admit sometimes. On the other side of each choice are the "what ifs." And sometimes we don't even realize we are making a choice. We claim someone or something "made" us do it. We use the excuse "I just couldn't help myself." Is that true? Can we really not help ourselves? Or is there always an alternative to our present situations?

A commercial came on TV today for the movie My Sister's Keeper. The movie is based on a novel by Jodi Picoult. The story is based around the premise of a family whose youngest daughter was born to provide their child with cancer any bone marrow or any other transplant needs. The younger sister decides she does not want to do that and sues her parents for rights to her body. It is a riveting story. Picoult is one of my favorite authors, and I loved that she wrote about this subject in such a fascinating way. Now several years later, they are making a major motion picture based on the book. (As an aside, they made a big deal on Oprah about the young actress who plays the child with cancer and how she shaved her head for the part. "Oh big fucking whoop!" I yelled at the TV. I really need to stop using the f word and especially talking to myself and the TV). Anyway, today a commercial aired for the movie. When I looked up and saw the images - the bald girl, the family, the IVs, I grabbed the remote and was going to change the channel, but I couldn't. It was one of those moments where you don't want to watch, but you CAN'T HELP YOURSELF. It made me feel anxious and sad. I used to wonder how survivors could feel this way. I used to gobble up anything related to childhood cancer, and now I find myself nervous about seeing it around me, talking about it. I am on the other side of the coin. I will probably see the movie - I won't be able to help myself....or perhaps I should more honestly say I will choose to see the movie because I am curious about, if nothing else, its comparison to my own experience and how it might make me feel.

I will end on a more light hearted note that illustrates a bit of how I have been feeling the past few days. These are pictures of my adorable, adorable, adorable nephew, Will. You can't tell I love him, can you? I took the pictures on a hot summer day at the ballpark.

He is the little boy sitting in the dirt pile. The little boy walking away has been called by his mom not to play in the dirt. I holler at Will, "Hey Will, you better get over here. You're mom is going to be upset if you get all dirty." He CHOOSES to ignore me (although I doubt he realized it was a choice) : ).

Here he is post-dirt pile. I am laughing hysterically - because he is so stinking cute - as I take this picture but also warning him that his mom is probably going to be pretty upset.

His answer to my warning: go back to the dirt pile before his mom looks over from the stands and ends this fun. When I yell at him again - I was really trying to help him make a good decision here - he only stops for a moment to look back at me as if to say, "Can you blame me, Auntie?" And I really can't. It does seem like fun. At this point, I start to think maybe I'm the one who is going to be in trouble here.

And finally....we are caught.

Here he is after receiving a mild butt chewing (and me receiving a bit of the evil eye), pondering whether or not having all that fun in the dirt pile was really worth it. After all, every joy seems to come with some expense.

We say our good byes, and I kiss his dirty face and hug his sweaty, sticky little body. As he is walking away, I yell, "William, turn around and let me see that beautiful dirty face!"

The expense in this case, well, it was definitely worth it. It was worth it. It was worth it. It was worth it. This perhaps will become my new mantra as I attempt to do, say, feel, and become something that seems difficult and unfamiliar. IT IS WORTH IT!

To Delve or Not to Delve

2009-04-29T17:50:00.002-05:00

So I said I would go back to talking more about my experiences at the mental hospital, but instead need to address the issues of therapy and writing this blog on others, especially those who love and care about me.

Life would be grand if we could all understand the context of each person's actions, their background and why they act the way they do. Sometimes when I get entirely irate the drive up person at McDonalds, I stop and think, "I wonder why they are working at McDonalds, and I wonder if they've had people being mean all day." The answer I have no freaking clue. Now, to admit that I have no freaking clue what it is like to be my twin sister is much harder to admit. But in truth, I don't, simply because I'm not her. I am not inside her head and heart and soul. I don't think many of us stop and think about that.

I am the first to admit, reluctantly, that I am a very judgmental person. Why do people stand outside of hospitals with oxygen tanks and smoke, for example. I hate that. But why do I get so angry, and sometimes even go as far as stare at them? It's not me doing it, and do I know the power of addiction? Not really. So I shouldn't judge right? Easier said than done, much easier said than done.

After I left the hospital in Mexico, I was very reluctant about counseling, as I mentioned yesterday. Let's face it, the difficult issues are the ones we shy away from. I have always been a FIRM, FIRM, FIRM believer in the power of positive thinking, prayer, and hard work. I am learning through this experience that depression does not have anything to do with those. I have heard the advice (all very well intentioned): think positively, force yourself to go out, think about the things you can do, move on with your life, I don't even think of you as a cancer survivor, why do you focus on it?

Problem #1,234,242: I am a people pleaser. I want to think positively, go out with my girlfriends, visit my former workplace. And I AM thankful for what abilities I have, for my amazing family, friends, and even for my stinking goldendoodle. And I pray. I pray for others and for myself. Then WHY? WHY can't I get this knot, this cloud, this feeling of dread to go away?

As I said yesterday, my therapist has led me to understand I have probably not fully grieved my losses. It has seeped out, but in order to follow the advice above, I have always just pushed the feelings down further, until they seep out a little, then I push them down again, and on and on and on. I guess there is a time when it comes spouting out of you and you can't stop it. I guess I'm there, or getting there.

So hearing about my pain and reading my blog is hard for those who love me. They, understandably, would rather we just go merrily along our way. They want to see me happy and content with all of the wonderful gifts I have been given. My point of today's post: SO DO I! I want to be content. I want to be at peace. I am not naive. I know life is a constant rollercoaster. There will always be down times. But there comes a point when you have to reach out for help, or you may never be on the top of the coaster again but instead just stuck at the bottom...knowing there is a much better place ahead...you just can't get there. Or worse, you just say "fuck it," and get off the rollercoaster all together, and that is my greatest fear. That, I keep telling myself, would hurt those who love me even more than the therapy and blogging might.

Certainly, I want those around me and who love me to read my blog...today I consider stopping writing it, because I don't want it to be a source of pain for anyone. Richard convinced me that I have to write it, for no one else but me. I have to put it out there. How lucky I am to have someone who loves me that much; who is willing to hold my hand through a very scary ordeal; who is willing to say, "screw the world," lets do what we know is right.

Really, the choice is yours. There are thousands of blogs on the internet these days, and certainly many that are more interesting than my dribbling. So feel free not to read - I completely understand, but for me, this is necessary. For me, I will continue to delve. In the end, those who love me will hopefully be most happy when I learn how to deal with what I am feeling and come away a better, more content, more complete version of myself.

Therapy

2009-04-28T20:55:00.003-05:00

Obviously, when you leave the asylum (I will go back to more about that tomorrow), you are supposed to continue with therapy to continue working on whatever issues brought you to that point.

It is going to be hard to believe, but even as a counselor, I was very reluctant to see a counselor. I guess I figure that my situation is what it is. A counselor is not going to give me back my leg or make my lungs function any better. So what's the point? Plus, I'm sick of appointments, of worrying about doing this or that to make myself healthy - physically or emotionally.

I see such a need in the pediatric oncology world for each and every clinic to have a long-term follow up center. As of right now, this is not the case. What that means for me, is that I have to coordinate all of my "ologists" on my own: my family doc, my infectious disease doc, my cardiologist, my pulmonologist, my gynocologist, physical medicine specialist, psychologist, psychiatrist...you get the idea. It is overwhelming and tiring.

I called my cardiologist just this week, to ask a question about my medication. Well, he sees like a gazillion patients because he is "the best," and I was on hold forever, transfered to a nurse who said they transfered me to the wrong place, more hold time, then a nurse who said she would catch up with the doctor and call me back. Still no call. Eventually, you just say, "screw it."

So, this is my background in reference to counseling/therapy. Today, I met with a new therapist. I asked in my prayers for someone to help me, to guide me in the direction I need to go. Today I found that person in a small, comfortable office. I will describe some of my visit in another post, but I wanted to share that I learned an amazing thing about myself today: I have really never grieved the loss of my leg. I have never been angry, really angry about my limitations, and now, after all of these years, it is beginning to seep out...in the form of depression and anxiousness and outbursts - such as the "fucking soda" episode at the asylum.

It is relieving, in one way, to know I have someone who I can trust to work through this. But I'm scared, too. I don't want to think about this. I don't know if I want to face all the stuff I've probably shoved down.

Yet I know I have to. I know I have to face it or I will be angry at other people. I will be angry with myself. I will end up back in the asylum. I know it because I've had days since that I feel myself slipping again, and I don't have the energy to keep this up. Plus, I deserve better. My son deserves better, and I want him to know how to ask for help.

So here I go....jumping off a cliff into the unknown. Luckily, I have the faith to know there's one of those big cushion things at the bottom - there just has to be.

Nurse Ratchet, Unratcheted

2009-04-27T22:26:00.004-05:00

I have had so many hospital experiences in my lifetime, that I am very particular about the hospital staff. There is absolutely nothing more important in a hospital stay than a good nurse. A good nurse comforts you and makes you feel like everything is under control - even if you know very well you are standing on the edge of a cliff and could any moment fall off. My sister Amy is a nurse, and of course she is the very best kind of nurse. She fluffs pillows and makes sure you're comfortable. She tells me, when I am complaining about the hospital staff, that perhaps my expectations are too high. She's right, not everyone can be like her. However, nurses are a lot like teachers in that you can just FEEL the ones who were born to do the job.

At the asylum there was a nurse who I will refer to as Nurse Ratchet. I'm not sure what I did, other than yell about the soda, that was so awful that she had to look at me like I was...I don't know...like I was just "yuck." She definitely looked at all of us that way. She walked with her shoulders back as if to say, "This is my house, and you little people are going to do what I say." She and I had several minor incidents. I will not describe them all here because it will bore you. I will describe one, in order to give you a good background.

I was expecting my mom, Amy, my sister Lori, and my niece Andrea to come for visiting hour. This for me was, obviously, the highlight of my day. The visiting room is quite large. At one end of the room there is a living room set up, a couple of couches and a tv. At the other end of the room there is a large table where we met to do crafts or groups. One of my inmates was visiting with four family members in the living room area. This left plenty of room on the other end for my family. However, when they walked through the locked doors, Nurse R. came scurrying in and told them that due to lack of space, they would have to come in two at a time. Immediately I burst into tears.

"There is plenty of room," I said loudly through my tears.

"Yes, but if others come to visit, there won't be any room for them," she said.

My family, wanting to comply, started to discuss who was going to visit first, etc. I was PISSED. I continued my argument.

"Why does HE get to have his whole family in there?" I cried.

"They have traveled a long way to see him," she said in a condescending tone.

"My family drove an HOUR, too!" I was really getting worked up, and my mom was trying to tell me not to worry about it, and I was telling her that this whole thing was ridiculous.

In the mean time, Amy pulled the nurse aside and politely asked if they could all stay until another family showed up and then they would leave or make room. Nurse Ratchet really couldn't argue with this logical and fair solution, so she reluctantly agreed.

"See," Amy said encouragingly, "it all worked out."

"Yeah, well she's a BITCH!" I shouted.

"Angie, lower your voice. It's okay. It worked out."

"Well, that's all fine and dandy," I said, "but I'm sick and tired of her being a BITCH to me. This a place where we are supposed to get help, for God's sake!"

So, the rest of the visit was fine, as we got on another subject, and I let me issue go with Nurse Ratchet. After my family left, I was bored and decided I wanted to work on a collage I had started working on. They had reluctantly given me a pair of children's scissors, with rounded edges, for the purpose of working on my collage. However, I had to turn them in each time when I finished and ask for them again when I wanted them.

The door to the nurses station was open, so I walked in and asked Nurse R., who was sitting at the desk, if I could have the scissors. I even said, "Excuse me, but I was wondering....".

She looked up at me and said, "IN A MINUTE."

Whoa. She is definitely mad at me. Perhaps shouting out the B word about her was not the best plan of action. I needed her now. I stood there for a moment and she looked up again and said, "In a MINUTE."

This, I quickly gathered, was my cue to get the hell out of the nurses area, which I didn't know was off limits because that is where we went each morning to get our pills, etc...So, I waited for fifteen minutes and still no scissors. I went as far as the door, and knocked on the open door. This time a nurses aide approached.

"I was wondering if I could have those scissors I asked for," I said, still calmly at this point.

"Let me ask," she replied.

UGH! "No, it's fine," I explained, clearly annoyed. "They are just those kiddie scissors - no sharp edges or anything. Perfectly safe, really!" I was being a smart ass again, but I just wanted the scissors.

She turned to go "ask," and I sat down in the chair right outside the nurses station. I had my eyes fixed on a clock on the wall.

"If I don't have those scissors in less than five minutes," I thought to myself, "I am going to throw a fit. Whatshername goes around here screaming all the time. I might as well add to the fun."

Five minutes passed. I knocked on the door again. The same nurses aide approached. I had myself so worked up that I had that lump in my throat.

"Oh, the scissors. I forgot."

That was all it took. "You know what, just forget the fucking scissors," I said in a monotone voice as the tears trickled down my cheeks.

I turned and walked away, down to my room and to the comfort of my pillow.

I was laying on my side when all Nurse Ratchet and two nurses aides entered the room. The first thing that crossed my mind was, "Who is watching the other inmates?"

"I'm really sorry," said the nurses aide who forgot to ask about the scissors.

"It's fine, really. I'm just entirely sick of this place," I said through sobs, still laying on my side, not facing them.

Nurse R. said, "Obviously it's not fine. You are not our typical patient. You are a very smart and well educated young lady. But the rules here still apply to you. Perhaps you need to think about your actions in this. You came into our area without asking and demanded the scissors. We have a lot going on, and we can't just tend to your needs. Even now, you won't even face us, and that shows rudeness on your part."

In that moment, I thought about all the desperate kids who had sat across from me at school, as I attempted to counsel them. I thought about all the stupid things I had probably said to them and how I had probably missed the point thousands of times.

I shot up in bed and looked her straight in the eyes. "I don't like people to see me cry! This is new for me! And while I may be educated, I am still a patient and this is all still really, really hard for me." The sobs where really hard now, and the words came out only with each breath. "I never knew that your area was off limits. We are in there everyday to take our medicines, and I just barely stepped in. It wasn't like I came in and sat down and made myself comfortable. And I did NOT demand those scissors. I asked very nicely. Listen, just forget it. I'm tired. I'm hurting. I'm hurting, so you'll have to excuse my behavior."

To me, this seemed like an obvious fact that they should have already taken into consideration. What happened next, surprised me. The tone of Nurse Ratchet's voice changed completely. In fact, I could almost not hear her.

"Perhaps we all have something to learn here. Why don't you rest, and someone will wake you for group."

I shook my head yes, and squeaked out a "thank you."

And just like that Nurse Ratchet became unratcheted!

Getting Used to the Asylum

2009-04-24T23:01:00.003-05:00

Well...I had another great day today. Richard wanted to go fishing early this morning and asked if I could take Nick to school. Of course, because he is the best husband in the world, said he could meet up with the guys later if I didn't think I could do it, but I owed him this. At the very, very least. And so, I got up early to take Nick to school. Richard has been taking Nick to school ever since my illnesses began in December. It is especially hard for me to get going in the morning - this has always been the case, but it seems even more so as I struggle to come out of this depression. It felt great to take him to school. He sits in the front seat now, and he and I sang songs off my iPod the whole way in. He was excited about a field trip to the Capitol building for Earth Day. Richard had taken him up to the store last night to get sack lunch goodies, and he had packed his whole lunch himself. This in itself is a treat, as he never gets to take a lunch to school. He said, "I brought a ham sandwich with cheese, some of those really great ranch crackers and strawberries." Before I could comment on how good the strawberries looked, he added, "Richard said the strawberries seemed awfully high, but I wanted 'em pretty bad, so I spent my own money on them."

I almost cried, but knew he would be terribly annoyed if I did, so I choked out, "I think it will definitely be worth it!"

When I was at the asylum, I just could gather that no one else had a child and husband like mine to go home to. While that made me extremely proud and satisfied, I also felt guilty. If I have it so damn good, why am I here? The others looked like they belonged here, which is terrible to say, but it my honest opinion. I did not feel I fit the part, whatever that means. I quickly began to fit in, however, as the following story will illustrate.

I found out that one of the morning routine included stating our goals and telling our overall feelings to the group. I enjoyed hearing about others immensely, and I found it incredibly easy just to speak my mind. The first morning I was somewhat reserved and stated that I was just trying to get used to everything.

When lunch came that day, I noticed that others had items on their plate which were not on the menu....chocolate cake, for example. I was sitting with a gal who was probably fairly close to my age but who looked hardened by life's difficulties. I knew she would know what was going on. I also knew that if I befriended her, she would be the kind of person who would kill for you.

"So what's the deal with that cake last night and the pancakes this morning?" I questioned.

"Oh, you can write in items on the menu," she said. "I don't suppose THEY told you that," she said nodding to the staff, who sat in an office with a huge glass window so they could see us. It was an obvious us vs. them environment. As a counselor all I could do was think of ways I could/would make this better.

"No, no one told me. Do they have chicken strips?"

If you know me, you know that when in doubt at a restaurant or place of dining, I always, always, always choose chicken strips - with ranch.

"Yeah," she said excitedly, "and their pizza is pretty good."

Yes! This was a major move in the right direction. I was ravenously hungry, maybe from the medicine or something. My next question was about the soda. Again, if you know me, you know that I begin each day with a soda - I know it's bad; I frankly don't care.

"Well, we'll get some soda at break time."

"Okay, I thought, I can handle this. I can wait until break. So when it came time for break, the others lined up like cattle at a watering tank. I really wasn't paying attention to the others because I was distracted by my thoughts of a delicious soda just moments away. And then it was my turn.

"What would you like to drink?" the nurses aide asked.

"What do you have?" I felt like I was in a bar.

"Diet Cola or Lemon Lime soda, orange juice, or apple juice." This was my first warning. When they don't say diet coke or pepsi or even 7up, you know it's going to be some off brand nasty shasta something or other. I quickly calmed myself down in my mind. At least it's a soda.

"Diet," please I replied.

I remember this next traumatic moment as if it were in slow motion. She took out a styrofoam cup - you know the small ones they serve coffee in at wedding receptions. She put three ice cubes in it which I am sure you can imagine left very little room in the cup. She opened a diet shasta and poured the soda into it. I practically snatched it out of her hand (although I did say thanks), and threw back the soda as if it were a shot...not that I've done many shots, just a few. And in that one swift move, it was gone, and I held out my hand for her to hand me the can.

"Oh, that's all you get," she replied nervously.

I did not go off. I did not throw a fit. I sat my cup down, proceeded to my room, put my pillow over my face and cried myself to sleep - AGAIN.

I was quiet the rest of the day. Not really angry, just sad.

I don't know what happened over night, but when I woke up the next morning I was madder than a hornet over that soda. I NEEDED a soda this morning. I am supposed to be here getting help, and how am I going to address these issues without my morning soda? HOW?

So, I trodded down the hall and saw no one was on the community phone, so I made a phone call to Richard and explained my new problem to him. He had a logical, calm answer which pissed me off even more.

"I have to go," I quickly ended the conversation. "Some group is starting or something."

"I love you," he sounded concerned.

"Thanks," I responded. "Will you bring me a soda tonight?" I cannot believe I was this awful. Unfortunately, it gets worse.

We are all sitting around eating breakfast, and I am seething mad, creating my argument in my head. Immediately after breakfast, we go into our "goals and state of mind meeting." I could not wait until it was my turn. I sat with my arms crossed over my chest, anxiously awaiting my chance to pounce.

"So, Angie," the nurse began. "How are you today?"

"Let's see," I began in an extremely sarcastic tone. "I am a counselor, and I just can't figure out why we have to live like prisoners in here when we voluntarily came here to get help!"

She was immediately defensive and nervous. "I'm not sure what you mean."

"What I mean is why we have to give up everything we love because we are sick."

"For example?" she acted like she had NO idea what I could possibly be talking about.

"Okay, I gave over my phone, and I get that. You don't want us in our rooms talking or texting or whatever. But soda? What is the problem with soda? I drank my "portion" (and I gestured the quotation marks) in one swig yesterday." I was getting louder and angrier as I went on. She started to respond, but I cut her off. "Now I know there is a cafeteria in this place, because we've all had our meals, and I've been in lots of hospital cafeterias. I DO NOT UNDERSTAND why someone can't go down there and get us each a nice fountain soda for God's sake. I'm telling you that my state of mind right now is shitty because I need a fucking soda!"

Even I cannot believe my nerve at this point. The rest of the gang is staring wide-eyed at me. Other than one woman who screams and cries all day long, the rest of us had been mild mannered up to this point.

The nurse was obviously, obviously annoyed. Not sympathetic. Annoyed. Even worse, I saw a diet coke sitting on her desk that morning when she gave me my medicine. The battle lines had been drawn between us in that instant.

"I'm sure you understand there is a reason for everything we do here."

That was her answer. Her complete answer. She might as well have said, "Because I said so." Plus, the way she said, "you," as if she was mocking the fact that I said I was a counselor and what would a counselor be doing on the other side of the desk?

"Whatever," I responded (how mature, I know), gathered my crutches and stomped out of the room....as much as a one legged person can stomp, anyway. I had a feeling I had just earned myself a few more days in the asylum. But damn it, it was worth it!

Wonderful Day

2009-04-24T00:42:00.004-05:00

Well, I had a great day today, so I am not in the mood to write about the asylum, although I will get back to it tomorrow. There are so many things to tell...not just about that but about my life as a survivor. Today I spent the day with Amy (my twin) as she had a garage sale. We just sat and gabbed. When we got tired of it, we shut down and picked up her littlest one, Will at his school. It was delightful. The smile on his face when he saw me was amazing. Then he showed me all of the neat things at his school - he goes to a Montessori school that stills up high on a hill. It is a renovated old, old school. It's beautiful. All hardwoods. Very vintage, and I love that.

Instead of continuing my story, I thought I would share a view things with you. One is a piece I did tonight. I took me the entire evening (between watching my favorite Thursday night TV: Survivor, Greys, and Private Practice. They were all good tonight, so it just added to my great day. When I was little, I would lay in the grass and look up at the clouds. As I tried to see shapes in them, I also often wondered what was up there, beyond the clouds. Did they go on forever. So tonight I created an answer in a piece called "Above the Clouds." It is colorful and busy and beautiful....all the things I love life to be.

It also represent my busy, complicated thoughts right now. Click on the picture to see a better view of it. I also created our family logo today. I am going to start offering the creation of family logos for $30. Family logos can be used as return address labels, stickers, art for your home, or stationary...really anything. They are meant to reflect what is important in your family. Here is the one I created for us. I'm not sure if it is the final version, but I like it.

Have a great Friday everyone. Talk to you tomorrow.

The Scoop

2009-04-22T23:02:00.004-05:00

I took a deep breath, trying to decide which version of my story to give...I have several: the short version, the inspiring version, the sad version. Depending on my mood or who I'm telling it to, determines my version. They are all basically the same facts, but my voice inflection and added details determine the version. Today, I decided I would present a new version: the no bullshit, this is how it is version.

I began, "Do you want to know my background or what happened most recently to get me here?"

"Both," she smiled. "Definitely both."

"Well, it began in 1977. I was diagnosed with Ewings Sarcoma," I stated matter of factly. I left out the whole story I told you about how I was diagnosed. I went on. "I had two years of chemotherapy and radiation. They didn't really think I would survive. Ewings is a bone cancer and in 1977 had a fairly low cure rate. Mine had already spread to my lungs when I was diagnosed."

Already she was shaking her head in empathy and disbelief. I could tell this part of the story easily because I barely remember the details and only tell what has been told to me. I was only four years old at this time.

"After my treatment was over, the x-rays looked good, and I was really fine for almost five years. Then my leg started hurting, and I didn't tell anyone. I felt bad, ya know. Guilty. Not as guilty as I feel now but guilty."

She wrote something in her notes and nodded for me to continue.

"So, it ended up it was Ewings again, and so I had to have my left leg amputated all the way to my hip," I looked down, as if to say, "see."

"Even though that took care of the cancer, they wanted to do chemo just in case, so I had chemo for two more years. This I remember well. I was sick for 12-14 hours. Vomiting and vomiting and vomiting. And there were sores in my mouth. Hundreds and hundreds of them. It took so much time for my parents. I was treated at the Mayo Clinic, so they were away alot, from each other and my brothers and sisters. I'm a twin, you know. It was so hard on her."

"I can't even imagine," she interjected as if lost in her own thoughts. I sat there looking at her, and she kind of shook herself out of her thought and said, "Sorry, go on."

"Then," I took a deep breath (this is usually where people really ooh and aah), "I had another recurrence when I was 14, this time in my left lung. At this point we lived in Missouri, so I was treated in Columbia at the University."

As I went on I was getting more and more annoyed with telling this damn story - AGAIN. Telling it is itself annoying, on top of whatever reason I'm telling it.

"How did you deal with this?" she seemed truly stumped.

"Well, up until about two years ago, really well. I was all about advocacy and getting involved, and then I just got sick of it. I withdrew. I couldn't even do my job. I was sick all the time with stuff. I guess I should tell you that I have lots of health issues - heart and lung issues - because back in the day they had just a small idea of what they were doing, and they are now learning I received too much chemo and radiation. I'm glad they know now, but I'm screwed."

"And what has been going on lately?"

"Oh, lately. Let's see. In the last two years this is what has happened to me: I've had pnuemonia three times; I fell and broke my collarbone; my husband had quadruple bypass surgery and seven months later learned two of the bypasses had closed, so the put stents in; I quit my job; I started a new job where I had a terrible experience and had to file a formal grievance; I got another job (the same one I quit previously) and had to promise I would "screw up" up like I did last time; I had my gallbladder out and learned my stomach doesn't empty correctly; my husband retired from a long, valued career; and most recently, this pain in the ass shingles."

Her mouth hung open.

"I know. I wouldn't even believe it if it was my life. They know me at the ER by name. It's embarrassing, and I feel like some kind of weirdo psycho all the time. There is something wrong ALL THE TIME. I've had it. I don't want this body anymore. I'm tired of being strong and brave and all of that crap that everyone seems to adore." I paused. "So that is why I'm here. That is why I figured heaven seemed like a damn good option over the hell I've been living through."

Again, I thought she was going to cry. "If she cries," I thought to myself, "I am literally going to slap her across the face. I need help. I don't need her to be touched by my sad story. I need someone else to be strong."

She gained composure (thank goodness for her and me), "But you are here and that in itself shows strength and amazing courage. Your not our usual 'type,' and I bet it was hard to come here. So I hate to disappoint you, but you are still showing signs of strength."

She was right but even today - several months down the road - I struggle and will write more about that as I go. Today, however, was a great day. I was up and about all day and working on my art pieces and website. I finally came up with a logo - pretty good for a beginner, I think. Oh, and I announced my blog on facebook, so there might actually be people reading this now - YIKES!

Waking up on the Wrong Side of my Bed

2009-04-17T00:19:00.003-05:00

It's been a few days since I wrote. I have to admit, I have been in a bit of a "funk." I have told one very important person (other than my husband) about my blog, so I think I'm making at least some progress in the right direction. Back to my time at the "asylum." (P.S. If you are offended, please ignore my smart ass comments...no disrespect intended...if I can't mouth of and laugh, what else is there in life?) Annnnnyway....

I startled awake. I didn't wake up on the wrong side of MY bed. I woke up in the wrong bed. I realized all too suddenly where I was. I was still crazy. I had no idea what time of day it was. I could hear voices and a bit of hustling and bustling. When I finally got up the nerve to leave my room, I realized everyone was congregated in the smallish dining/tv watching room. There were about seven of us there, I think. While they were all staring at me, I took a quick survey of them...in my mind guessing their issues.

A nurse came up behind me and put her hand on my shoulder. We let you sleep in for a while. It's already 11:00, and lunch will be here soon. I went ahead and ordered a plate for you. Oh great...I have a long-lived hate for hospital food, but I gave a polite thank you (although I'm sure my face showed otherwise).

"I need to give you your meds, and then I think we'll have enough time for you to meet with one of our social workers to get your intake information, since we didn't do that last night."

The times I've told my story to medical professionals must be in the millions by now. And pretty much each time the reaction is similar....shock and awe. Some will just come right out and speak their amazement. One ER doc looked at Richard and said, "You are lucky to be married to this little lady. She should have died." Oh, thanks, I wanted to say. And don't call me little lady. I always just smile and say, "I know." I was expecting no different today, and I felt an odd relief that I had so much to tell....certainly I had EVERY reason to be crazy. I was justified. I chuckled to myself. As an aside, the entire time I was "locked up," and thus officially considered crazy, I found myself often cracking myself up by my thoughts. I would then smile or chuckle to myself. Yep, I definitely fit the part.

A very nice woman came out of an office, and with a welcoming smile, waved me into the office. I would say the office was about 10 x 10, in other words, SMALL.

"Why," I thought to myself, "does the medical world continue to do things to make situations worse?" I am not claustrophobic, but I felt like climbing the walls. I took a deep breath, feeling a slight "buzz" from the medication.

"So," she began. "Why don't you tell me about why you are here."

"How long do we have?" I said searching for a clock. She laughed. I wasn't kidding.

"Well, I just got to the point where I wanted it all to be over."

"By 'over' you mean?" she pushed me. She wanted me to say it. She wanted me to verbalize that I wanted to kill myself. As I write this, I'm realizing that I have always had a hard time with the semantics of situations. When I had cancer, we - our entire family - rarely ever uttered the word, "cancer." We always refer to it as, "when I was sick." I'm not sure how this is, if at all, psychologically significant, but I have a feeling it is.

So I very, very quietly uttered, "I had a plan. You know - a plan to commit suicide."

She didn't even blink an eye. I guess she already knew that part.

"And do you have any idea why?"

Without a moments hesitation, I replied with a bit of unusual anger in my voice, "BECAUSE. BECAUSE it is maddening to know the kind of person you want to be, the kind of life you want to live, the kind of mom you want to be, the kind of job you want to have and not be able to do it."

She sat there for what seemed like eternity. I saw her begin to get a tear in her eye, as if she could somehow relate. Finally she simply responded, "Well said. Now tell me the rest of the story."

Getting Help

2009-04-14T22:12:00.005-05:00

So, I would like to write tonight about how afraid I am that I've completely screwed up my son by my recent "illness," but I don't have my thoughts together on that, and it would probably come out as complete and utter complaining, self-pitying, irrational babble. And, alas, I must continue with the "adventure" I began describing yesterday.

I'm not sure what time it was when I arrived at the hospital. I did manage to sleep most of the way, which was good, because the man sitting in the back of the ambulance kept giving me this really sad, desperate, surprised look. As if to say, "You don't look like most of the crazies we haul around, but please don't freak out on my watch."

When we arrived at the hospital, I kept my eyes closed, partly because it makes me sick to ride on a gurney with my eyes open, and partially because I was scared to see what was ahead. The hospital was deadly quiet, as it was the middle of the night. In a few short hours it would be bustling again.

Since my eyes were closed, the driver of the ambulance must have thought he was sleeping. When we approached "THE WARD," the doors were locked, and they had to be buzzed in. "Wow! Locked doors, even," the driver exclaimed, laughing. If I wasn't at rock bottom, I probably would have told him where to go, but as it was I just sighed, opened my eyes, and stared directly at him. I think he got the message.

A nurse quickly approached and was obviously awaiting my arrival. They were all helpful and amazed when I sat up, hopped off the gurney, and stood there with one leg.

"Well, you get around well," said the nurse. People are always surprised at my mobility.

No reply from me. Not even the usual smile and canned response, "Yeah, I'm pretty used to it."

"You must be really tired. We aren't going to do the normal check in tonight. I'm just going to give you your meds, get your clothes changed, and hopefully you can get some sleep."

Still not a word from me. Just a nod.

She proceeded to give me my medicine with a tiny cup of water. Was there a danger in giving me a larger cup of water? Could I drown myself in a cup? These were my sarcastic, bitter thoughts. I couldn't stop them from filling my head.

Just then my iPhone signaled a new e-mail from my pocket.

"Oh," she cheerily replied as she held her hand out. "I'll take that phone, put your name on it, and leave it right here where we put all patient valuables."

I could feel the lump forming in my throat. How would I get to sleep without playing text twist on my phone?

She handed me a set of scrubs and said I could sleep in them and wear them during the day if I wanted to.

"I'll have to keep those," she said pointing to my sweats. "They have a drawstring."

Holy shit. What have I done? I am sure she could see the fear in my eyes and notice the reddening of my face as I tried to keep the tears from forming in my eyes. My throat was killing me, as I tried to swallow the huge lump that was stuck there.

She showed me a restroom where I could change. I did, still trying not to cry.

When I came out, she smiled, as if I was the most beautiful looking one-legged suicidal girl she had ever seen. I didn't buy it. "Get real," I wanted to scream, but if I let one single word out, in fact even a tiny sound, the flood gates would open. I just kept my mouth shut and my head down.

She led me down a dismal hallway - mint green on the walls, grey carpet on the floors. We entered a room that looked more like a dorm room than a hospital room. The only light coming in the room was from the hallway.

"We don't want to wake your roommate," she whispered cheerily.

That was all it took. The tears started coming, but it was dark enough, that I don't think she could see them. A roommate? I had to share this experience with a stranger? The bed was a wooden structure that went all the way to the floor, and it had a mattress on top.

I did bring my favorite pillow. It is one I don't lay on. I hold it. It is an old feather pillow, and it is my "blankie," my "binkie."

I quickly laid down on the bed, turned on my side, and pulled the pillow to my chest. The tears were burning my eyes, and my throat was aching from trying not to sob.

"Is there anything else you need?" she asked.

Is there anything else I need? Hell yes. I need my mom, my husband's back rub, the sound of my TV lulling me to sleep, my sanity. I need my sanity.

But instead of spewing my thought I simply choked out a "no thanks." As soon as she left the room, I let out a sob and cried and cried.

"This is getting help?" I thought desperately. "I want to go home."

Letting Go

2009-04-13T20:41:00.005-05:00

I am confessing (to myself), that I have not told a single soul about this blog thing. Well, I asked my family if they cared if "aired" some of my business - which indirectly and directly - becomes their business, and they agreed, but technically, I have told no one. Tomorrow. That's what I keep telling myself. Tomorrow. I want survivors to read the blog more than anyone. Those closest to me, well I'm not so sure.

It is hard for me to let go. I can go to big conferences, speak at grand rounds, but when it comes to actually one-on-one letting go of my emotions, letting my "tough" wall down, that is very hard for me to do.

It was one night in January that I knew I could not hide any longer. The thought in my head was becoming more prominent - the one telling me things would be better off without me. I was struggling, and had been struggling for over a month, with shingles. I was in terrible, terrible pain. I felt I had no one single ounce of fight left in me. I even started to develop a plan in my mind. That, I knew, was not good. I'm a counselor for goodness sake. I know these things. The signs.

The thing I kept coming back to was my son. He is my son from a previous marriage (that will take another post entirely, trust me), and I know if something happens to me, he has to go live with his dad. He does see his dad every other weekend, but Richard is his DAD. Richard teaches him, loves him every day and night, pays for his expenses, and it would KILL him to lose Nick. So what prompted me to ask for help was the fear that I might eventually not be able to fight off the urge.

One of the things I was afraid of in asking for help was the simple fact of what it was going to be like. It seems silly, but I wondered if it would be like a bunch of crazies walking around screaming and crying. Would I be able to have my cell phone? These are the things I cried to Richard about after I admitted to him that I thought I needed to go to the hospital.

He calmly and obviously stated, "I think we're beyond worrying about those things. Don't you?"

And the reason I'm writing about this is because I thought other people who read this blog might also feel some of the same things. They seem silly, but I honestly think they are the things that sometimes keep people from jumping off that ledge for help.

Nick was already in bed when this was taking place, and I didn't want to wake him up. I called my sister, Amy, my twin, and she came and got me. I had her call my mom and my other sister and they met us at the hospital. That is how our family does things. I groups. Together. By then, I was more under control. I was worried, terrified really, but tried to act like my old self.

It was really, really, really hard to admit to that doctor that I thought about killing myself. Saying those words was to me embarrassing and shameful and weak. He was very straight forward with me. We talked about the reasons why that would not be a good idea. He said he still thought, even though I was calm, I still needed a good "time out." I agreed.

He left the room to make the arrangements, and came back quickly to report that all the beds in their unit were full. The next closest "facility" was an hour away. I took a breath, but before I could say anything, he said, "This doesn't mean your issues are solved. I still think you need to be admitted."

He had me there. Through tears, I agreed. It took FOREVER, for them to get it arranged. Amy stayed with me..... And at 3 am, they put me in an ambulance to take me to a facility that had less crazy people in it. Wait, I'm one of those crazies now. I closed my eyes, took a deep breath, and tried to sleep instead of thinking about what awaited me.

The Breakdown

2009-04-12T21:19:00.005-05:00

HAPPY EASTER! Nick has recently started e-mailing. He e-mails and IMs his friends at school, his cousins, and even his grandma. So he e-mailed this to all of us in his address book this morning: "Happy Easter! I hope everyone has an awesome, choclately, breakfast stuffing, candy shoving, pizza inhaling Easter! But u have to remember that just because food is the best thing God ever created, Easter is all about Jesus Christ rising from the dead! Happy Easter. Sincerely, Nick." Completely made my day! : ) Did I really create this wonderful person? Amazing!

Back to the breakdown....I realize I just shared the beginning of my cancer journey with all of you in the last post, but I feel compelled to share my present state of mind - or at least the fairly recent events before I go any further. As I go back and forth between the past and the present, my hope is that you'll see the relation between the two and see why my husband teasingly (and I think not so teasingly, sometimes) calls me "crazier that an out-house rat"!

I guess the change in me started about two years ago. Since I was only four years old, I don't consider myself having a live before cancer. My life has always been about cancer. About tests and waiting and recurrences and remission and joy and fear and courage. I would say 98.8% of the time I chose to have a positive outlook. More than that I felt the need to get involved. My resume of cancer-related events is impressive, I assure you. I was involved with organizations such as Camp Quality and CureSearch (see links). I gave lectures, wrote articles, and visited patients to encourage them. I craved the involvement, and it made me feel like my life as a survivor had a definite purpose. It was the reason I survived. I absolutely was NOT going to waste the life I was given.

I honestly have no idea what caused a change in me....I could/may possibly discover it in therapy, but one day a couple of years ago, I changed. It happened gradually, I guess, but in my mind it doesn't seem so. Lots seemed to be changing in me...I will write more about the specific events in posts to come.

However, you've probably seen the movie Christmas Vacation. I love it. There's the scene in the movie where Clark brings out a beautiful looking turkey to an anxiously awaiting family. He sets it on the table. Tension from a long list of foibles fills the air, but this turkey, it is going to save the whole holiday. Except when Clark cuts into the turkey, it explodes and there is absolutely nothing inside. It has been overcooked.

I hate to say it, folks, but I am the turkey in this scenario. I definitely felt that people expected things of me - why wouldn't they when I had delivered time and time before and enjoyed doing so. I still looked the same of the outside, but on the inside - NOTHING. NOTHING. Not anger. Not fear. Not joy. Nothing. After 31 years as a cancer patient, I was finally numb.

The numbness didn't last long. Slowly feelings started creeping back. Unfortunately, they weren't good feelings and the circumstances around me didn't help. In a span of less than two years, I fell and broke my tailbone, I had pnuemonia three times, I found out I had to sleep with a CPAP machine, my husband had quadruple bypass surgery, I had shingles above my eye, and most recently a severe, severe drug reaction that caused blisters to cover my entire body. Now, I'm not including any professional information or information about role as wife and mother. Add those factors in and I was more than anything PISSED off and in close second came GUILTY.

And about a year ago the thought started whispering in my head, "things would be less complicated without you."

In early January the thought filled every crevice of my brain. I knew I needed help. And that's when I finally, finally, finally let my guard down. That's when I finally let the cancer, and all the shit that goes with it, win. For a moment, I let it win.

In tomorrow's episode: What Happens When You Let Your Guard Down! (Dramatic music in the background - DA, DA, DA - would be good here, but I don't know how to do all that complicated stuff).

When They Knew

2009-04-11T11:16:00.011-05:00

I have written and told the story of how we figured out I had cancer many times. The truth is, I am writing a story I have heard my mom tell me. I don't remember the details of being diagnosed. I was four years old.

I remember very odd details, like the couch I sat on as my mom and dad tried to figure out why I was screaming that my leg hurt. I remember my twin, Amy, trying to get me to play with her.

But I definitely do not remember the next days and weeks when my parents took me from our small town in Iowa to a bigger city to see if they knew what "showed up on the x-rays." In fact, they did. Ewings Sarcoma. A rare bone cancer that typically effects children and young people 10-20 years old. It was unusual in a four year old. Of course. My life is one unusual circumstance after another. That's me: unusual.

The hospital where I was diagnosed recommended that we go to the Mayo Clinic in Rochester, Minnesota, which was about a two hour drive from home. Of course, that's what my parents did.

Later, they told me I cried when we left the parking lot to head to Mayo. I was crying that I just wanted to go home. I had no idea I cried. In my mind I have ALWAYS, I mean ALWAYS been stoic about my treatment. It made me oddly happy to know I cried about it then. I quickly learned it was easier, much easier, to hide what I was feeling. To put on a front of strength. It wasn't always a front. I do believe strongly in "sucking it up and kicking ass." But I knew that if I cried, so did those around me. I just could stand that.

As a mother, I look back and wonder how my mom and dad did it. How they coordinated the lives of the other five they had still living at home. As an adult, my heart aches for my siblings. It is a guilt that I deal with and will talk more about on this blog. What they lost, what they missed, what needs they had that were left unfulfilled because their sister had cancer. I guess you could say, and I think my mom and dad might have said, "Do you want to trade places with her?" Of course they didn't. We were all in a no win situation.

I've learned and come to accept in life that it is okay to do the best you can and let that be good enough. I say I've "accepted" it. My husband would say that's a "stretch." I work on it every day might be a more truthful statement.

I think my mom also taught us to find good in what we could. We still had so many fun times. Family get togethers. We did not let the cancer stop that, and I really thank my parents for maintaining the normalcy that they could.

My goldendoodle is whining....off to take her outside. More tomorrow.

My Boys

2009-04-10T00:36:00.013-05:00

This is one of our favorite family memories. My husband is a retired high school principal, and part of his duties include traveling to see sports events. We had to make a LONG trip to Arkansas - at least a long trip for a football game - so while we were there we decided to go fishing. The first pictures is Nick's prize catch. Of course he had to have some help reeling that in! The second picture was taken after fishing. We crashed in the middle of the afternoon in our hotel, closed the curtains, and took a luxurious nap. I made Nick lay with Richard because he kicks in his sleep, so I had the whole other bed to myself!

We were so happy and relaxed on this day.

Whenever I begin to lose it, this pic is one of the things I look at to refocus.

The Beginning

2009-04-10T00:21:00.003-05:00

It might be nearly impossible for me to explain my reasons for starting this blog, but I'm certain you will understand as I post each day. One important reason is because I want others to know there is someone like me "out there." Maybe if one person who feels alone reads this post and understands there is someone out there like them, they will feel less alone -- and truthfully, maybe I will, too.

I definitely don't want this to be depressing, although I've had a somewhat depressing day. I promise there will be times when you read the blog that you will laugh, cry, scream, call in your spouse to read what I wrote (and they probably won't get it or care).

I am a survivor of childhood cancer. I was diagnosed in 1977. I honestly never thought I'd live to be able to say, "I was diagnosed over thirty years ago." Holy crap. Thirty years is a long time (sorry older folks), but it is. An important part of the very long story - which I am going to detail throughout this blog, is that part of my treatment when I was ten years old was to have my left leg amputated at the hip. I wear a prosthesis that weighs around 14 pounds. People ask why I wear it, and I say because it gives me my hands to work with. Also, because my parents were smart enough to help me get used to it - more later on that.

SOOOO, here I am, 35, and I'M ALIVE! I'M ALIVE! It truly is a miracle. Definitely something to rejoice. Why, why, why then, after all of these years, have I turned angry and afraid and desperate to be out of this body of mine? Truthfully, this blog is as much for me as for you, the reader. A journal of sorts. I was always going to write a book, but stuff keeps happening, so here is my story - in modern form.

It is late. I'm reading a good murder story by James Patterson, my eyes are heavy, but I want to read just a few more chapters. My goldendoodle is curled up at the end of my bed, keeping my feet warm, and I feel content. Tomorrow I will write more about the beginning of the discontent. The beginning of my story.