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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Wednesday, April 21, 2010

My Answer to cancer

There is a new category of disease emerging within the diagnosis of cancer. It is chronic cancer. It is cancer that comes and despite treatment keeps coming back. It is a cancer that with modern medicine can be managed for years if approached properly. It's cancer that, though likely incurable, can be coped with to live a fulfilling life extending decades.
It appears this is the category of cancer I have. 
I hesitated to post this news. I
 didn't know the internet etiquette in announcing a reoccurence. I wanted to notify certain people myself.
Then Dad jumped the gun this morning and blasted an email to his
 update list. I imagine from there others forwarded his news on.
I guess I need to get my perspective of the truth out before news gets half way around the world that I'm on my
 death bed. 
I'm not.
My PET scan showed an area of
 herpermetabolic uptake, or a "hot spot," around my aorta. 
The aorta is the largest artery in the body originating in the left ventricle of the heart (http://en.wikipedia.org/wiki/Aorta).
Good news is this tumor appears to have shrunk from previous studies.
Yes, reread the sentence. There have been previous suspicious CT scans. My doctor didn't explicitly tell me of the tumor's existence. I didn't ask.
I can still feel when my cancer returns. Years of experience have honed my internal diagnostic skills however, My body is actively waging an internal battle where cells proliferate to form tumors only to be attacked by my graft vs host disease. 
The GVHD itself could keep the cancer contained. 
Unfortunately, the steroids, by eliminating the gvhd, allow my cancer to return more easily. 
I am not, as my dad said, trying to stop my prednisone. 
I'm staying on 20mg until I see my transplant team in Boston May 3. 
It's all about quality of life. I can breathe. I can take care of X, have play dates, and take him to chuck-e-cheese. 
There are good reasons for my steroids. They keep me active.
Taking the steroids is not necessarily optional either. I'm continuing with a slow taper to gauge how much affect the prednisone has had on my improving lung function.
I do have another area highly suspicious of recurrent disease sitting near my right kidney. This density threatens the ureter and is possibly contributing to an increasing creatinine (1.4 for those of you in the know) and a steadily decreasing hemaglobin (low 9s).
I also have right flank pain. That's kidney pain, but I have plenty of means to take care of that.
The plan is to do what I have been doing. I'll watch myself closely, manage any symptoms, and report any increase in problems. 
I'll return to chemo when my cancer becomes symptomatic enough to interfere with my life. Meanwhile, I'll look into therapies that will gently place me back into remission hopefully without debilitating side effects.
I'll continue this cycle for as long as possible. 
I realize most people do not even realize the treatment path I have chosen is an option in cancer treatment. Many won't understand.
I certainly never considered this as a viable option for me. I was an all-or-nothing, kick-its-ass woman.
I didn't understand the mentality until recently. I didn't understand until December when I realized that dying was a very real, viable option (Yes, it took me that long to consider that my cancer could kill me. I'm a little stubborn). 
What you do when you get to this point is all you can do. You do the best you can with what you have.
I'll tell you what I'm not doing. I'm not curling up in a ball, canceling plans, and running to treatment. I'm making more plans. We're having sleep overs and going on (hopefully) family vacations. I'll still coach soccer.
That's my answer to cancer.
I may not be as all-or-nothing as I once was, but I am still a realistic, practical woman. The best possibility to kick cancer's ass is to fend it off for as long as possible. I'm taking the "if you can't beat them, join them" approach.
 I have realistically reevaluated my goals, and I plan on surviving for many more years.


7 comments:

Anonymous said...

I'm so proud of you Hillary. Words fail me ... but one thing I know ... those of us who know & love you are with you.

And for the record, I suggest that the way you are telling people is perfect. So don't fret about that.

I also want you to know that my thoughts & best wishes are with you.

Take care ... & call if I can do anything.

F

Anonymous said...

Hillary, you truly have to be one of the most courageous people I have ever. ever known......I hope you do live years and years and make such a difference in the world....you are an inspiration!!! Just an amazing inspiration!!!

Anonymous said...

You're amazing.
I love you.

Bekah said...

Hill,

I hate reading this. Just wanted to say welcome to the cool kids refractory group, totally hate that you have to be a part of the club, but glad you're pushing forward.

Make sure you next steps are ones that are gentle to your body... Some of these clinical trials allow you to have a very, semi-normal life.

Sending Love,

Bekah

Valerie said...

Hilary. That sucks so much. I am speechless. You are amazing. Keep on truckin'...
thinking of you...
V

Katie St. M. said...

You are truly a wonder, Hil. We're just as sure of a long and plentiful future as you are. Love you so much.

Katie St. M. said...

You are truly a wonder, Hil. We are just as sure of a long and plentiful future as you are. Love you so much.