Sunday, May 31, 2009

One Degree of Separation

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.

Saturday, May 30, 2009

Friends Forever?

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!

Thursday, May 28, 2009

Paradox

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.

Monday, May 25, 2009

Home

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.


Thursday, May 21, 2009

A Sick Mom

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.

Tuesday, May 19, 2009

Just One Bad Day

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?

Monday, May 18, 2009

A Mom

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.

Friday, May 15, 2009

The Absolute Most Beautiful Moment of My Life

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?

Thursday, May 14, 2009

Expect the Unexpected

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.

Monday, May 11, 2009

Life in a Cubicle

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.

Sunday, May 10, 2009

Forced Patience

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!

Thursday, May 7, 2009

In the Blink of an Eye

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...


Wednesday, May 6, 2009

Jealousy?

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....


Tuesday, May 5, 2009

Roller Coaster Day

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! 

Monday, May 4, 2009

Tired

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! : )



Sunday, May 3, 2009

Do You Believe in Miracles?

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.

Saturday, May 2, 2009

The Pressure of Survival

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!