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, October 8, 2008

Meet Dr. A

I was graced by the presence of the charming Dr. A today. He’s always breezing in with his cool smile. I’ve heard words describing him such as hot shot, rock star, and genius.
He makes me a little apprehensive. He has the mentality of a surgeon. It takes a certain narcissism to cut and remove organs only to replace them with others. The word cavalier comes to mind when I think of Dr. A, but I don’t think he’ll take unnecessary risks with my body. My guess is the success of his patients is directly tied to his feelings of success as a doctor. Any failure is personal, a reflection on him.
Because he feels this way, he’ll always treat his patients the very best he can. Honestly, I don’t think he knows any other way to function.
I can certainly relate to that. If I do something, I want it done perfectly. Almost to the point, I don’t know how to be anything other than perfect.
He's growing on me.
Stem Cell transplant doctors do not appear as narcissistic as general surgeons. I think it is because of the highly theoretical nature of their field.
There is no real cutting involved in the types of procedures my doctors do, just the medicinal equivalent, and the actual transplantation of the immune system is pretty anti-climactic. My cells will probably show up and be infused in a couple hours. They look very similar to any other blood product.
Due to these pre-conceptions about my doctor, we’ve butted heads before, or so I heard. I was pretty heavily medicated from my trial drug that was kicking my ass. I had to drive three hours on one of the worst days during my treatment to see Dr. A to sign consents.
Couldn’t we have just faxed these and discussed it over the phone?
Anyway, I didn’t like the terms of the consents and he didn’t like that I was editing his brilliant plan.
I don’t think he hears no very often.
But neither do I.
All I did was edit out the part of the contract that said I would be financially liable for the side effects caused by the experimental drugs for the rest of my life. I wasn’t going to be permanently damaged by playing guinea pig only to pay for it out of my pocket later.
I am taking the drug though. I’m talking the velcade. It will start soon.
I’ll be sure to post pictures of my upcoming procedures.
Either way, transplant day is an exciting day for me. It represents are re-birth of sorts. It symbolizes the possibility that I could live a long healthy productive life. Even better, I have the possibility that maybe someday I’ll be able to look back at this chapter of my life and understand why I suffered for so long.

The Dana Farber Website provides a great explanation of mini transplants. The article is a little old, but check it out http://www.dana-farber.org/res/research/stem-cell-3.asp

1 comment:

eileen KSC said...

Hi Hillary,
There is a reason you have been as busy doing cool fun things every minute you can before and between your treatments. You are saving up "thoughts and colors and images" to use when you're too tired to get out of bed or even open your eyes. There is a delightful children's book by Leo Lionni called frederick about this process. Frederick (a mouse) and his siblings are preparing for winter by gathering nuts, etc. All except Frederick that is, who is gathering thoughts and colors and images or so he tells them when asked. When winter comes and they're eaten all of their provisions, they turn to Frederick and ask him about his 'supplies'. Well, with words he paints beautiful images of things that warm and nourish his siblings. A great story, but an even greater message for you. Think of lobster, Harlem, the Yankees, fall leaves, catching frogs with Xander, soccer, etc. You've already stored all of those (and tons more) to pull out like books on a shelf when needed.
Keep on trucking, you have NO idea how many people are pulling, praying for you and thinking of you 24/7.
Eileen