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, May 24, 2010

Don't Let Cancer. ..

. . . keep you from dancing.

Today feels like a Monday.
I never feel the Monday madness.
I think that's reserved for people who work or have some kind of set schedule.
My Mondays are generally reserved for a big long recovery nap from the weekend.
This Monday morning I'm feeling a lot like I did back in my college days after having a weekend reminiscent of the good old days.
Yes, it was time I tested my body in a big way and went all out for a couple very special occasions: Danielle's year post-pancreatic transplant anniversary and Killy's Bachelorette Party.
In anticipation of my party-hopping weekend I didn't travel to Portland for my future sister-in-laws pinning and I did miss someone's thirtieth b-day bash.
It seems like everyone picks the same weekend to celebrate.
The boys let me go to bed early Friday and lay low Saturday morning to conserve my energy.
D and I had been talking about her party for say, oh, the last year since her surgery, and since I was cutting out early I went early to help set up with Brynn.
D was in the throws of making her cake, a pancreas shaped red velvet master piece covered in pink and tan fondant and infused with blended cherries (so when the cake was cut it would ooze).
I think you have to have the quirky medical sense of humor many patients and professionals possess to understand the joy that went into planning that cake down to the duodenum.
Even i got into it making sure my mexican seven layer dip was topped off with gaucamole in honor of all the bile that probably released itself during her surgery.
I didn't really talk about that though. I thought a whole anatomy lesson on the pancreas and the common bile duct to explain a joke was probably a little much, and there just wasn't enough other geeks like me there to get it.
I cut out to catch a little bit of X's baseball game.
The look of delight whenever I surprise him never gets old. I relish those looks. I don't think there will ever be anybody again in the whole world that is ever that excited to see me or misses me so absolutely.
I ended up leaving the soiree to move on around 3pm for my friend Andrea's and my big secret bachelorette plans for Killy.
We knew the cat and been let out of the bag by her mom who gets a pass for being overly stressed with the wedding and family issues that the party was taking place that night with the two of us driving down to Boston for a night on the town.
That's all she knew though.
Killy behaved and didn't push her mom for more details.
We started the drive to Boston a little before 4pm with A's tom tom at our side.
I don't know how anybody arrived anywhere before the advent of GPS navigation systems.
I did my fair share of exploring the world before I had a pocket sized satellite computer giving me turn-by-turn directions and I vow never to go back to those anxiety inducing, fear drenched days of staying up all night wondering if I'll be able to find that place safely in that neighborhood at that time in the morning.
Those were the dark ages.
It's scary just to think about them.
I wonder just how many relationships have been saved by the mass production of Garmen's and Tom Toms?
I know I've been in some serious altercations about directions during the dark ages without satellite guidance.
Anyway, they're a blessing and a curse because after driving one large 25 minute circle around Bean town (which I was pretty confident we did but couldn't be sure since I usually make a bee-line to the hospitals) we arrived at an intersection I could have navigated to in five minutes from the highway.
C'est le vie. We made it there safely for 6:30.
Most of my adult life my bedtime has been 6:30.
I was a little anxious about my ability to hang.
So nervous in fact I contemplated getting some ritalin or adderal to ensure I'd stay awake.
I am a palliative care patient.
And I've vowed if I was capable I won't ever let myself miss a big important event, like a bachelorette party, again.
In August I helped plan my friend Nicole's party. We threw the pre-party at my house. It was a 3 stage event getting more and more inappropriate as the night went on.
Stage one and two were lots of fun, but I bailed out before the limo left for the clubs even though I'd worked out all the arrangements because I was worried I'd get sick.
Guess who got sick anyway?!
Four days later I was admitted for what we thought was pneumonia.
Dammit if I'm going to be sick I may as well have a good time getting that way.
And of course, Nic's favorite part of the evening, the one with all the pictures, was the part I couldn't participate in.
I missed Maggie and Colette's weddings, Countless baptisms, 1s birthdays, 30th birthdays, Bachelorette parties, girl's weekends, etc.,etc., etc.
The best thing I have done is prioritize and never let go or allow myself to stop participating in those events.
Never, ever let a diagnosis stop you from doing what you love.
Had I curled up in a ball of despair with my cancer and not done anything I'd be looking back at these four years, and my life, a lot differently.
I still have no regrets.
So we walk in with no fan fair, no "OMG, I can't believe you're here." and "How did you make it?" squeals of delight or even, "What's going on guys?"
Just the preliminary hugs and kisses of friends who haven't seen each other in a while before we dragged the bride-to-be off to get dressed appropriately for the evening.
I did the math. I went back in my memory banks.
I think the last time i went out and partied until the early am was almost two years ago at my sister's bachelorette party.
I may have had one other serious night on the town in August 2008 in Manhattan, but the date there is hazy.
I've had quite a few crazy Manhattan nights on the town.
But I'd never done the Boston party scene. . . . .
I'd booked reservations at The Improv Asylum in Boston's North End (that's by the bay where Fanuiel Hall and Quincy Market reside).
I've been to the North End before. . . . . on field trips with school or on outings with Xander.
We hit up the aquarium. There is a great Children's museum around there. Quincy market is cute.
Those places are no where as cool as the city at night all lit up with the smell of authentic Italian and fresh seafood wafting through the air and excited tourists all mulling the streets.
I have been missing out.
I misjudged Boston.
I love New bury St., the fashion hub of bean town.
Now I'm loving the north end.
I had been out on the town there once for dinner after a day full of trial chemo.
I felt fine when I left the hospital with Steph, Heather, and Allen.
I though we were just getting a bite to eat.
Little did I know I was being taken to a pick-up sports bar immediately after eight hours of being infused with magnesium that sent my bowels spasming and a phase I trial drug, meaning never being tried on humans before.
I walked in to a bar full of gawking males. Completely unexpected.
I ordered my meal.
Then I managed to grab my stomach and heave a couple times before barely making it to the ladies room to collapse and throw up.
Mean while Heather and Steph are at my side, rubbing my back, and all I'm hearing is, "It's okay, honey. They just think your drunk."

Run out of time. Things to do. . .
To be continued. . . .

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