I AM NOT DYING!!
Well, no more than you are.
I haven't made any decision to stop treatment or alter it in any way that it may shorten my life, in fact, I think maintenence chemo is my best option to live as long and happy a life as possible.
I understand my choice is unique.
I didn't even understand the concept myself until recently.
I thought people who had made this choice were crazy, "What?! You don't want to cure your cancer? You're going to live with the threat of that monster parasite coming back and taking over your life!!"
That's what I thought.
I thought that until I realized, even with the transplants and the trials, my cancer still returns. I'm just accepting and working with exactly what is all ready happening to me.
Really, my cancer returned during my allo transplant at Dana Farber, while I was receiving some of the harshest treatments available for hodgkins. That's one hard ass cancer!!
What I am doing represents a new trend and thought process in cancer care. It's the thought that I have a chronic cancer that will inevitably return no matter how strong and toxic the chemotherapy I throw at it is. The new trend in caring for a chronic character is "maintenance chemotherapy.".
My next step is to find a chemotherapy regimen that will be as least toxic as possible so I can enjoy my life while undergoing treatment. I want to be able to vacation with my family. I want to be able to go to ball games, maybe coach or play even! I want to be able to enjoy BBQs where we just sit and laugh.
The chemotherapy will still be given to send the cancer into remission. The goal is to make the cancer go away, but with the understanding that it will not cure me.
This is maintanence chemotherapy. It is in no way a sign of giving up. It is not "comfort chemo." It is a change in direction that I believe will give me the longest, happiest, most comfortable life possible.
I've researched cases where treatment like this has allowed patients to survive, co-existing with their cancer like a diabetic, for decades. Some still choose to pursue their educational goals, sometimes masters degrees.
What needs to be understood is that a cancer diagnosis is not a death sentence.
I liken the progression of cancer treatment to the progression in AIDs treatments. Fifteen years ago an HIV diagnosis was a death sentence, now it means being a compliant patient that takes twenty medications a day. Who knows what will be available for hodgkins treatment 15 years from now. I do know that it's possible I could be alive to see those changes if I make the right decisions.
The standard regimens have not worked for me. I have tried them. I don't want a repeat of how I've felt taking chemo without regard to its toxicity in hope for a cure. The toxicity is what has almost killed me, and the best indicator of future behavior is past behavior.
I think it's time to look out of the box and focus on my priorities. With this mindset, my cancer return was less devastating than normal.
No "it's the end of the world" tears this time, just continuing to plan summer vacations, like a family trip next week to DC and maybe one to Maine before x goes to soccer and reading camp. I just want to keep on contributing and enjoying myself and I think my choices give me the best hope to attain that.