Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Saturday, June 12, 2010

Maintenance Chemotherapy

Whoa, after dad's update, I definately have some clarifying to do.
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.


Anonymous said...

So happy to see the feisty Hillary!
Remember that we are always in your corner, and thanks so much for the clarification.

Anonymous said...

This is the Hillary we love!!

Anonymous said...

Thanks Hill ... as so often in the past, you've taken an opportunity to educate us on the challenges you face. I for one (& I suspect I was not alone), did think that you might be giving up. And while I suspect I was also not alone in wanting to say "NO YOU MUST FIGHT", the truth is, I believe we should respect whatever decsision you make. That said, I'm glad you aren't giving up.

Take care ... stay strong ... & know that we are all thinking about you & pulling for you.


Chris said...

Hi Hillary,

I've pretty much resigned to this thinking too. I see Dr. O'Connor at NYU and he's great. I'm currently doing clinical trials and while my disease is small, it's in my spinal area and is pretty uncomfortable. That said, I live a good quality of life relatively speaking.

I know your options may be a little more limited with clinical trials after having an allo but Dr. O'Connor seems to be a good advocate working with the drug companies to make exceptions.

I'm sure you're aware of SGN-35 which is probably the hottest "maintenance" drug that's ever come out for Hodgkins. There are plenty of others as well...

Anyway, I just wanted to let you know that there are plenty of options out there outside of a cure and life can be good!

Take care,