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, November 27, 2010

Questions

I recovered in leaps and bounds this past week.
I'm a little confused.
I'm hoping I really have an adrenal insufficiency and it's not one of the cases where the cause is unknown so I'm getting prednisone.
What I do know is that my cough is subsiding. My nausea started to decline in 24 hours after the start of steroids and I was able to eat something other than bread and rice.
I had my first full meal in 5 weeks Weds. night and it was delicious!
Thanks mom for the meat pies.
I'm getting a PET scan on Monday to see if my cancer has spread.
I don't think it has, but not for any good reason.
I don't think it's grown because I don't think I've had the bone marrow function to support tumor growth.
Every hospital admission I've had bone marrow failure: Extreme bone marrow failure with an Absolute Neutrophil Count of 120.
That's no immune system with no real explanation.
Luckily neupogen brings it back.
That would put me in a bit of a predicament.
I've worked so hard to beat the cells of the bone marrow back to keep them from making tumors that it could no longer work at all.
And I'm not sure how serious it is, but I do know that I've been discharged on Hospice, not just visiting nurse.
I'm on hospice.
And a week ago it was fitting.
This week I feel like I could keep living for years taking one step at a time.
I just want to know that I am getting all the facts, that I have a clear picture of my disease, and the treatment goals, which is to survive pushing the cancer back.
The idea is not to die yet even though my disease is relentless and we're preparing.
But what questions do you ask?
Should I hit Doc with, "Hey, am I really dying now? Is it finally time? How much time do you think I really have?"
His guess is as good as mine.
What I want to know is that I'm still being treated in a manner that supports my goal of long term survival
Maybe, I should take a holiday from treatment.
Maybe, I should switch agents.
Maybe, I should just keep doing what I'm doing with steroids.
I'll see on Monday.
Along that note, if there is ever a question of whether or not I may survive and anybody wants to see me, to talk, to clarify anything, or anything that may make them feel more comfortable, please contact me or my family.
It's important to me that everyone understands what is happening and feels as comfortable as possible.

1 comment:

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