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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Monday, November 23, 2009

I’ve gotten to the point in the treatment cycle where I’m ready for my life back.

I’ve been treated. I’ve suffered. I’ve been cured.

I want to enjoy what I have.

It’s time for the excitement to begin!

Except. . . . .I slept 20 hours trying to recover from having fun on Friday and Saturday.

By having fun, I mean throwing a birthday party for my father, going to bed by 9pm, and going out shopping for the day with the girls, again in bed by 9pm.

My big highlight was firing Blockbuster in exchange for Netflix (I've finally joined the 21st century), and figuring out how to instantly download movies to watch on our tv. We can watch as many as we want for less than $9 a month. X has all ready watched "The Ant Bully," "Scooby Doo," and "Pokie Mon The Movie."

If that's not a reason to stay in bed, I don't know what is.

Good times, yes, I know, but they pale in comparison to leaving for the club at 11pm to stay out until 6 am only to sleep until 7:30 then drive 4 hours home on a Friday to be with my family for the weekend.

This is how I used to be: Ms. Superstar Energy. There was nothing that was stopping me. I’d work my 60 hours without even a little fatigue.

Now, I have to chose my events carefully knowing that if I say yes to one thing I may be trading in another.

Or even there is always the possibility that I’ll make plans and fall asleep anyway.

By Sunday morning at 10:30, as I was hanging out with Danielle,when my eyes began to close while we talked. My body would try to fall asleep and I’d do my best to fight it.

My nerves would twitch myself back awake, like I was in high school desperately trying to keep my eyes awake through a boring class.

Except, I wasn’t in school. I was enjoying myself.

Jon noticed me nodding off first and then Danielle.

I went to bed for a little nap at 10:30.

I slept until the phone woke me up at 3:30pm and stayed awake until 6:30, only to fall back asleep and stay there until this morning.

I’m wondering when my body will stop pulling the strings.

I thought I’d finally conquered the extreme exhaustion and fatigue that are the hallmarks of cancer treatment.

It’s more than simply being tired.

It’s being tired to the point it is painful, that every movement takes thought and consideration before it’s executed, even rolling over to pick up the phone.

After my first transplant, I lived within a 20’ radius for months.

I’d leave my bubble only for outings to the hospital.

During that period, my sleeping was scheduled.

I knew I would need a nap, no matter what activity I did, in the morning and then again in the afternoon.

My two rounds of chemotherapy does not even slightly compare with the big guns that were thrown at me years ago, but the cumulative effect of the years of therapy has definitely caught up with me.

On the birghtside, I ran amok shopping sans oxygen. I'm seeing he pulmonologist today for a game plan, then I'll meet with Anna and call Melissa tomorrow to see the implications of my test results.

I'm hoping for a "wait and see" approuch. This will allow me to continue to recovering. My lungs don't seem to be deteriorating.

It has only been a week since my diagnosis with H1N1. I can’t expect to be the all-star patient that recoveries from that all energetic and shiny.

I think with this taken into consideration, I’m doing okay.

The flu should by me another week of rest time, then I’ll start worrying about feeling useless.


linda keenan said...

hey if this makes you feel any better, i have been hearing this again and again from people who have had the flu: they have kicked the 'flu' part but they are exhausted and keep trying to figure out why. it seems like there's a long long hangover in terms of the exhaustion.
i hope it's better next week!!!

Anonymous said...

i think i see that Christmas miracle.....continuing to think of you and won't stop praying!!