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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Friday, April 16, 2010

Living awake but half asleep

Every week I have one day I spend half conscious.
I'm not talking about the "living awake but half asleep" zombie mode that all of us go through but can still manage to put our bodies on auto pilot and drop off the kids, go to class, clean the house, go to work, etc.
On these days, I physically can not stay awake.
Mid-conversation, mid-sentence, I will doze off. It doesn't matter where I am, what I am doing, and who I am talking to.
My body has decided it's exhausted and it's time to sleep.
Yesterday was that day, and it was a bad day to have that day.
I'd controlled my body to stay awake until the afternoon when I had my dad caring for me, pheresis, and I knew I could disappear without much notice.
That's all good except my Doctor's appointment was in the afternoon.
When Dr. G showed up in pheresis I was all ready cozy, curled up with a warm blanket, in bed.
I forced my eyes open.
I knew I had questions. I knew I had things to discuss, but they were all gone in my sleepy haze.
Of course I remembered to ask for my scripts just in case X and I do get to go to NYC next week.
But I didn't drill him about the results of my CT the way I would have.
I didn't even ask him for the copy of the report he had in his hand, which I started kicking myself in the ass for immediately.
CT results as I understood them: normal for me but abnormal. A site in my spleen of possible disease seen in March has diminished.
Yes, disease, as in Hodgkin's.
I appear to be in the new class of cancer patients that may always have cancer, but will manage it with the goal of extending a good time as long as possible.
Kudos to Good Housekeeping who tackled this topic in their magazine this month. It's an enigma to most people how and why you would live with a life-threatening parasite in your body.
My personal answer to that is that appears to be the best option, but the answers are all very personal.
That's all I really remember.
I only remember that because my mom called me later that night as I was waking up to ask the results.
I was drowsy and never should have taken the phone call. I forgot to mention that the site of possible disease had shrunk since March.
I could hear her voice getting more high pitched, anxious, and then panicked despite her trying to hide it.
She knows I hate to have to tell people my test results.
When I get positive tests, I suffer a severe blow that has my life flashing before my eyes, but then I need to go and tell all those I love the results and see their disappointment and fears on their faces.
It's not just reopening a wound, it's cutting it deeper. It's adding a whole other cut.
That is a portion of the reason I started writing.
I didn't have the emotional energy to restate my test results, my treatment options, my prognosis, etc. etc., and see the reactions on my loved ones faces.
We did decide to get a PET scan. It's on for Monday next week. I'm then supposed to meet with Dr. G to discuss the results.
I scheduled a hundred appointments in my quesi-wake only to realize now I can not/ will not be able to get pheresis at 8 am Tuesday until 9 am and then wait to see him at noon.
X has vacation next week.
My time feels more precious today.

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