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.