Thursday, April 30, 2009

Two Sides to Every Coin

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!

Wednesday, April 29, 2009

To Delve or Not to Delve

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.


Tuesday, April 28, 2009

Therapy

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.

Monday, April 27, 2009

Nurse Ratchet, Unratcheted

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!

Friday, April 24, 2009

Getting Used to the Asylum

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



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.

Wednesday, April 22, 2009

The Scoop

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!

Friday, April 17, 2009

Waking up on the Wrong Side of my Bed

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."

Tuesday, April 14, 2009

Getting Help

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."

Monday, April 13, 2009

Letting Go

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.


Sunday, April 12, 2009

The Breakdown

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).


Saturday, April 11, 2009

When They Knew

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.


Friday, April 10, 2009

My Boys





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

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.