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 7, 2009

Let The Good Times Roll

Take A Second and look at the posting below.

Hopefully some of you will take the opportunity on this gorgeous Saturday to make your voices heard loud and clear in support of healthcare reform.

I’m confident measures will pass.

I’m at the very least confident that measures will pass for us in NH.

We’re fortunate to have several representatives that have been proactive in healthcare reform.

As much as I’d like to join the festivities today with a big sign attached to the back of my wheelchair, waiving my oxygen tank in the air, just thinking about it tires me out.

Spending the night at Heather’s, where I finally met my 3.5 week old nephew Preston, going to appointments in Boston, and checking out the toy variety at Toys ‘R Us on Weds. Night and Thursday put me to sleep for almost the entirety of Friday.

When I say “almost” I mean I woke up at 7 to get X to school and was back to sleep by 10:30am. I woke up at 4pm to hang out with the family until falling asleep again at 8pm.

I spent more time asleep than awake.

Everytime I’d wake up I’d listen to my lungs squeaking like Minnie Mouse and think “fuck it” before I went back to sleep.

Believe it or not, I'm also not making this decision entirely on what I'd like to be doing with my Saturday.

Apparently me joining throngs of people right now makes some of my loved ones uneasy. It's better just to quarantine myself on "the compound."

J's been a republican, anti-rally party pooper since I was pregnant, but this time I won't go into stealth mode and force him into the chaos. We'll stay right here, far enough out in the woods that no swine flu can find us.

Bronchiolitis Obliterans or no, I think I’m recovering.

I’m able to walk longer and longer distances without the extreme shortness of breath I was experiencing.

I’m going to start exercising again on Monday.

It is time to break out my “flirty girl” fitness tapes and remind my body what it’s capable of doing.

People can knock the striptease/ pole dancing exercise phenomena all they want, but it keeps my muscles coming back.

My mind is still reeling from an appointment that went from Donor Lymphocyte Infusion Planning to “we always have steroids if we need them.”

These two concepts are completely contradictory of each other, but I can’t say I didn’t see it coming.

I’ve thought about sneaking back to the steroids more than once in the past couple of months.

Of all the medications that I would possibly “sneak back to” it’s ridiculous that I’d choose prednisone, but in doing that I know I’d possibly be undoing all my hardwork of the past couple months.

I’d have another Fall of fruitless suffering.

At least now I’m finally well enough to start resuming my life and having some fun. I’m hoping he remission sticks so the good times can start rolling again.

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