Lately it seems that more and more of my post transplant friends are developing some sort of cancer. With a transplant your chances of developing cancer are increased because of your suppressed immune system. But this risk can seem so minuscule compared to being able to breathe that most patients wave it off.
Then there is me...
My risk of developing cancer with a decent immune system in place is high to begin with because of my Lynch Syndrome. Then you take out that immune system of mine, which has kept me flu and cold free for quite some time, and you have a breading ground for abnormal cells. Is this a risk I want to take?
Honestly I don't know.
There I said it.
I don't know if I want to take that risk. My transplant center has said they are willing to take the risk as long as my evaluation shows I am a good candidate. But do I want to?
There are so many questions, so many tests, so much unknown about it that I just don't know. Even the team said they have never transplanted a patient with a history such as mine, or someone with Lynch Syndrome. I get tests done yearly to check for polyps in all the areas affected by LS. Will these tests need to be done every 6 months now? Am I willing to have endoscopies, colonoscopies, MRI's, CT scans etc done every 6 months just so I can breathe better? Am I willing to constantly worry that every little lump or fever could be cancer developing somewhere in my body? I just don't know.
I wish I could say that being able to breathe like a healthy person is worth that risk, and a part of me says HELL YEAH. But then there is the other part that is VERY nervous that something will grow so fast on me that I will develop cancer and die. I don't want to die from cancer. I have spent 25 years knowing I will die from CF. I can't change that now. Maybe I am more afraid of dying from something that I am not expecting than I am of actually developing cancer? Who knows. Will all these worries stop me from being evaluated? Nope. And I know I still have a few years left with these air bags that I don't need to press the issue about being listed until later on. I have time to think and wonder and worry that I am making the right choice. Because in the end, only what I decide is right. Whether my mom, dad, husband or friends want me to get the transplant, only I can say yes to the doctors. Only I can do what I feel is right for me. And if in the end I decide cancer is worth the risk then great, cut me open and give me new lungs. But if I decide it is not worth it, I hope that those close to me realize that it was a long and difficult decision and one that was not made lightly.
Wow, I'm so sorry you are going through these tough thoughts right now. I am not familiar with Lynch syndrome, although that must be a tough decision to make. I completely understand what you mean when you say you're prepared to die from CF and not something else. I think that's the way a lot of CF people feel. We sort of know what to expect in our lives and that makes things easier for us to swallow I think. In fact, it sort of goes along with what you said in a previous post - you mentioned how you were happy that you developed CFRD before your transplant so that you didn't have to deal with both diabetes and transplant at the same time. Most people would be devistated with a diabetes diagnosis, but you (and a lot of people with CF) understand that it most likely will happen at some point, so we're sort of prepared for it. And then you took it the extra notch saying that you were happy it happened earlier than later :) I love your positivity!!! Anyhow, it totally makes sense though about wanting to take the route that you know rather than the one you don't know. And particularly in your situation when cancer can happen more easily, I can't even imagine the thoughts that you're thinking right now. But know that your cysters are pulling for you in whatever decision you make and good luck with your pulmonary rehab next week!
ReplyDeleteSounds like time is on your side as far as being able to let this whole idea settle more. It is a big decision and sounds like with your LS it causes a few more questions and hoops to jump through. I feel for you!
ReplyDelete-cowtown