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 7, 2009

The door flung open and I heard, “You’re under arrest!!!!!”
Then there was a long pause before X whipped open the curtain and said, “for impersonating a sick person!”
With a big grin he rushed past the fabric to hop on my bed.
“You know, mom, if I were a cop,” he said thoughtfully, “I’d let all the bad guys go.”
I still hadn’t caught up with his energy. I was still processing his comment about me impersonating a sick person when he told me he was going to let all the bad guys he caught as a future cop go.

It was too much to process.
I just sat, mouth partially open, trying to decide what to respond to, but he was all ready off having given me his mischevious “I-know-you-love-me-but-I’m-naughty” grin.
I have seen that smile so many times before in situations far less innocuous than this.
Those poor boys don’t get half the love of my man X.
This is why I sit in the hospital room waiting to enjoy my few hours spent with family in the evening after work.
X’s emotions range from excitement to disappointed defeat in minutes. It’s amazing to watch the range of emotions that he attaches to his thoughts.
When asked to draw a portrait of himself the other day, he drew four different heads all with different emotions.
When the teacher questioned his decision to draw four heads instead of one, he explained all four heads were him at different times.
Now that is a boy that knows he has feelings.
At least he knows he has them, that’s part of the battle, now having him correctly identify them and react accordingly is the next obstacle.
I know people who in their middle age should receive an award for correctly identifying an emotion. I think we have X emotionally age appropriate, if not ahead of the game.
Yes, my family is what gets me through the day, along with the feeling that somewhere I am loved beyond measure, beyond what I may ever love myself.
It keeps me going, along with my writing of course.
Great since the big health decision has been made.
All the great minds of my case have been put their heads together to form a contingency plan as what to do with this damn nasty abscess.
It’s time to get a “core biopsy” which has a needle, guided by CT, to take out a significant piece of tissue for analysis.
Obtaining a larger sample increases the odds that the information needed to guide my care is contained within the tissue sample.
This is the least invasive way to get the information needed.
If I were to wait and allow the infiltrate to “fix itself” (who knows how long that would take) there is always the danger that the bacteria/fungus/superbug/whatever would still remain in its system and rear its ugly head after my Donor Lymphocyte Infusion.
All the chemo, therapies, and procedures I have undergone have been in hopes of receiving a DLI or Donor Lymphocyte infusion, which is a little like a “booster shot” for my transplant.
As an analogy, people receive a tetanus shot at a certain time; however, if they are exposed to tetanus they need to have a booster shot which contains an altered version of the disease for protection.
I had my transplant and since my transplant didn’t work (I’ve been “re-exposed” to cancer), I need an immune booster to fight that cancer. The booster is my DLI.
Am I explaining this clearly?
I’ll get back to that sometime, but first things first, I’m getting lung tissue removed tomorrow. I may or may not need a drain post- procedure. It will probably be a couple days before results come in to alter my therapy according to results.
It’s hurry up and wait time so I can get back to my family. At least I have my writing to keep me grounded.

1 comment:

Anonymous said...

how can you not smile when X is being X. --Jacob