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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Thursday, April 8, 2010

Prescription for Powerlessness

I had forgotten how empowering advocating for or speaking on behalf of something I really believe in is.
 If there was a medication specifically for me to treat powerlessness, the doctor would have prescribed speaking at the legislative session. 
Actually, the nurse practitioner probably would have written the script for that one. 
Powerlessness falls into the holistic realm, generally the NP's territory. 
It has been a long time since I was well enough to present myself alongside testimony. 
Usually the lack of breath or my treatment schedule force me into sending only written statements, but I love being present.
It's an experience unlike any other I've had before. 
The statehouse and legislative offices are gorgeous with intricate stone work and mementos from through out our states history. 
I feel regal just entering. I feel like the kids from chronicles of narnia when they crawl through the warddrobe and discover a whole different world when I open the doors and cross the threshold into the stately atrium with its flags and high ceilings. 
I feel like I have entered somewhere where my opinion counts and my disease is not just the cause of suffering, but a platform or sounding board to facilitate change.
I'd forgotten that feeling. 
It reminds me of me. 
I was excited waking up and having to get dressed in a classy business outfit with make-up with the intent of doing something meaningful and important.
Sweats are okay for most days.
Of course, the 30lbs I've gained from the steroids in the past couple months did cloud the experience a little. I certainly don't have business attire to fit this new body. 
When we finally found the exact room where the hearings were being held it was all ready filled with advocates: all sorts of people with opinions representing different organizations. The American Heart Association was present, as was The American Cancer Society, and NH's Citizen Alliance. Some groups had pins identifying themselves.
I have the option of meeting up with the group I'm speaking with before hearings. They have an office down the street from the Statehouse that reminds me of the advocacy agencies seen in Forest Gump. 
It's a great office space. It's meeting room is wood paneled with all sorts of posters plastered on the walls with different empowerment slogans.
I decided to brave the hearing and meet the other advocates there. I always write I'm representing myself as a patient other than an agency anyway.
I haven't done this much, but I was at least clever enough to sneak in and claim a seat quickly.
I would have liked to hear other people's testimony, but my appointment with my eye guru in Boston forced me to leave early.
Getting up to speak was more difficult than before. 
Last year, I could step up, remain standing, and project my statement head held high, shoulders broad projecting my voice in an attempt to convey that "I-am-a-wronged- patient-hear-me-roar."
 Now, I feel week. 
I need to focus on keeping my breath while I speak. I can feel my oxygen saturation dropping while I talk which brings on shakes and sweats. 
Maintaining eye contact and engaging the representatives was harder than before. I spent a lot of time reading right off the paper.
But I did it. I still did it. And it felt great.
Maybe next time, I will wear my oxygen. . . . or at least bring it.
Afterwards we jetted off to see Dr. Dana, the graft vs. host eye guru at Mass. Eye and Ear.
GVHD attacks my eyes so I experience extreme burning from lack of moisture, which he fixed by plugging my tear duct, again, and changes in vision from inflammation. My eyes get so inflamed and irritated the white cells start sloughing off and form a film layer over my eyeballs.
I, literally, see the world through a film. It's not rose colored.
Good news and bad news is, Dr. Dana has found the cure for graft vs. host eye problems.
I told you he was a genius.
It's a customized eye drop made specifically for each patient at Mass Eye and Ear.
The problem is it's expensive. I think about $300 monthly.
It's so expensive that we didn't even discuss the option at this appointment since the steroids have fended off the worst of the pain and I haven't been experiencing debilitating changes in my vision.
He recommended I start back on restasis, which is still expensive, but not unaffordable.
It's difficult hearing that I have the options to go blind or broke. I equate it to making the decision between food or heat. I need to choose between bad or worse, both options are needs. 
I'm saying this, but yesterday I was so excited after my talk that I broke the spending freeze I've held since Christmas (well, minus needs like food and clothes) and bought myself a folding camping hammock at Job Lots.
It comes with a convenient carrier case and folds up for easy transport, just like camping chairs.
Now I have the option to lie down and fall asleep where ever I go: X's games, friend's BBQs, outdoor concerts, the beach. All for the discount price of $40!
What more could a cancer patient want?
It was the perfect splurge for yesterday since somehow Boston reached 87 degrees!
That is just not natural, and nobody informed me of the apocalypse-type heat wave. I looked a little crazy stomping around in my boots. Luckily, I had a tunic to keep me cool. 
That all just goes with being a New England girl. Today, it's more pheresis. 

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