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, July 12, 2010


I smell like chemo, cancer and sweat.
It's a combination of sick and sweet that no person should ever become familiar with.
I've spent the last four days working up the motivation to sit at my desk to type.
If my memory serves me correctly, it took five days for me to recover from the ABVD therapy four years ago.

But I'm not giving myself another day.
I'm going camping tonight with X and Lex.
It's tradition.
This is the first year I've really met this trip with ambivalence.
Every year I'm nervous about whether or not I can handle the stress camping places on my body.
This is the first year I'll be in active treatment while trying to camp.
Luckily, we camp with a large group of very supportive extended family members.  They let me nap while my mom, grandparents, sister, whoever take over.
The kids are also seven and ten now.
That makes a difference.

You'd be ambivalent too if your first forei into the waking world after chemo had you stand and pass right out.
I'd say it was orthostatic hypotension.
My blood pressure just got a little low, but on Saturday I stood up from napping on the couch and made it ten feet into the kitchen before the world turned black.
I tried to holler.
I gurgled.
I grabbed.
I guess that's how falling/failing happens.
One second you're awake and alert, the next you're trying to holler for help and wonder why no one is coming.
X, of course, heard me first.
He's very intuitive when it comes to his mom.
I wish J had that intuition.
It would spare X the fear.
Instead J had the surround sound on  and I opened my eyes to a very scared seven year old screaming for his dad.
I slept most the day yesterday too, waking only to spend a couple of hours at the pool with the kids and try to pack for vacation.
I've done a good first pass at vacation packing. It will be done for tonight. I'm packing with the understanding that anything I forget I could buy there.
Also, I clearly have no problem being dirty, seeing as I haven't really showered since Thursday or Friday (your guess is as good as mine).

Dr. G and I decided on a plan of action that included continuing the vinblastine at half the dose I previously took but blasting all the possible nasty side effects with steroids and any other palliative medications we could get our hands on.

I have to admit, my medication planning with palliative care was one of the best ever. I left the office with an arm length worth of scripts, lots of pain control, marinol, amphetamines, steroids.
You name it, I have it.
This is what happens, I guess, when most treatment fails.
The goal becomes solely to have a good time.
I wonder why it takes people so long to get to this point?
Shouldn't we all be working towards having a good time from the get go?
If that is what the priority is in the end then that's where it should be in the beginning.
Unfortunately, even with the decadron, prednisone, and ritalin I slept the majority of yesterday.
I will pack today.
I will get X and Lex to camp.
It's one of their favorite things to do all year.
It is their favorite tradition, even if all we do is play ball outside and go to the beach.
Tradition is important.


Heather said...

Hope you will have a great camping trip! I do remember the smells you speak of. However, there was a benefit...the mosquitos left me alone. Everyone else was swarmed, but they must have sensed I was toxic and this no bites for me. Hopefully, they'll leave you alone too!

Heather said...

I meant "thus" no bites for me. Still suffering from chemobrain.