Today is a new day, I have been so caught up in feeling sorry for myself and trying to make decisions that I shouldn’t have to make, decisions that no one should have to make that I have forgotten to sit back and see the good I have and all that joy that I can still experience. I have been through a lot of things in my life, especially within the last year and I never wanted anyone to see me crumble and give up so I fought even when I didn’t think I could. I fought for my life when I could have easily let it slip away, but I’m still here and I will be damned if this disease or anyone is going to make life unhappy for me.
I went to visit my transplant doctor in Baltimore about a month ago and she again told me all the horrible things that can happen with transplant and all the statistics and all that baloney that I have heard at every single appointment I have with her, she didn’t have anything new to tell me other than to think about what I want to do. Within the week though, I received a letter from the office saying that they were denying me for a transplant because I was not healthy enough to go through the process……….. I had an idea that this was gong to happen based on the way she was talking at the appointment and on the phone prior to but when I got the letter it really just sent me into a frenzy of different emotions. I was sad that that hope was gone, I was angry that I was getting denied, and I was extremely irritated and angry that my doctor neglected to tell me this news while I was there with her in person. Instead she just kept saying that they were still considering me if this and if that. Obviously they already had there answer at my appointment if I received a letter barely a week later and my appointment was on a Tuesday and they meet to discuss cases on Mondays. So, needless to say, I am currently finding a new doctor.
I have been doing a lot of research on treatment options for BOS that have helped others in stabilizing the disease and I have found a few things that I may be able to try and hopefully one of them will work! I will have to go back to my doctor in NYC to begin the process more than likely but I will also work with a local doctor for the weekly things. I am in the process of getting all my appointments set up and will be talking to the doctors about the things that I have found and hopefully together we can come up with the best treatments to try for me that I haven’t already tried. I know none of them will cure my disease but, some are supposed to slow the progression, which is better than nothing!
I’ve also been struggling with a huge decisions since being denied, should I continue to fight for a transplant and go through numerous tests and procedures or should I just try to stabilize my disease as much as possible and enjoy what life I have left to the happiest of my ability. To most it seems like an easy decision right? Do the transplant, of course, just get through the test and procedures and the actual transplant and then you have your life back and you will live a long life. But, it’s not that easy. A transplant for me has so many risks, I could not make it through the surgery and if I made it through that I could then have so many different complications during recovery that I don’t make it through. The recovery itself would be one of the hardest things I would have to go through and it could mean a year in the hospital, a year away from my family and my dogs. I know, to most people your thinking, really your dogs? your worried about being away from your dogs? YES I AM, my dogs have been with me since day one of being diagnosed with cancer over 5 years ago, they are like kids to me and they help me get through even my roughest of days, so yes being away from them for a year would be extremely difficult, especially if it was for nothing and i didn’t make it. Theres also the likely chance that I get this same exact disease again after my transplant, so that has me questioning why go through all the pain and suffering of a transplant to just get this same monster again and lose precious time with my family and friends. Why not just try to stabilize my disease as it is and try to live the best life I can while I can. I know that I will eventually not be able to fight anymore, but until that day I would really like to know that I was as happy as I could be doing it.
On the other hand, what if I do fight for the transplant and miraculously I make it through the surgery and though the recovery with no major problems and I don’t get BOS again and I do get to live a much longer life? I know there is no way to know what is going to happen and that’s what makes this so hard. It’s like I’m choosing whether I live or die and it’s not a decision I want to have to make. I feel like I make up my mind and then I quickly change it in fear of choosing the wrong path. I’m admitting to being very scared and very lost in this decision. I don’t want to feel like I’m giving up but I don’t want to make a wrong choice. I know my family will support me in whatever I choose, which makes it easier, but I still feel like I might be letting them down if I don’t try for the transplant. I might be letting myself down if I don’t….. I can only leave this in gods hands and I pray that he sends me an answer or sends me sign in the right direction.