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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Sunday, March 22, 2009


“Those red spots on your neck, Are those part of your graft vs. disease rash?” I’m asked by the resident upon my admission to the oncology unit.
“No. No. Those are scars. That’s the road map to my years of care. The rashes are on my back. Inspect my stomach, and my breasts, those are graft versus host. I also have some gritty eyes and mouth changes.”
The resident lifted the flashlight to check out my mouth: diffuse white patches from an oral thrush I’ve be fighting. No amount of Nystatin and scrubbing has made that want to leave. Along with this there are white patches signifying GVHD.
I have chronic GVHD, lifelong. My options are to learn how to deal with the bothersome side effects. I do okay. I use artificial tears a couple times daily. I use nasal sprays to keep my nasal mucosa moist.
I lotion my body after I shower, hoping to combat dryness that could eventually lead to ulcerations.
I’m all about prevention these days.
My health adventure started on Monday, when I first spiked a fever. Uck. No. A fever. I try to avoid those like the plague.
Now, Saturday, I’m in the hospital. I couldn’t avoid the admission. I tried so hard.
I was seen at Dana Farber on Tuesday after I spoke to the senate committee regarding a bill that would create an uncompensated care fund through the starting of a commission. It is Senate Bill 158. Please, support this bill.
I’m all for this idea. I would love to be a part of getting NH’s most innovative minds together to search for a way to reform health care so the system is more user friendly.
On Tuesday I was diagnosed with the Para Influenza (cancer patient flu). I was given antibiotics for the bacterial infection that had arisen in its wake.
I still felt feverish. But it’s normal to keep the fevers even a couple days after treatment has begun.
I took the route that I would rest. I would also drink lots and eat healthy, but oops, sometimes our best intentions can’t overcome the reality.
The reality is I am still severely immunocompromised, even though I don’t like to admit I am.
All that healthy eating and caretaking just wasn’t enough to stimulate the immune system.
The augmentin I got Tues. worked for a couple days.
Then all hell broke loose.
I was going to lie in bed all day this morning and be miserable when mom stepped In and made me take my temperature.
It was 103.5.
When I moved from the bed, I felt chilled. All my muscles ached. My mouth was a big dry mess from being unable to breathe through my nose all night.
I could feel the film of plaque over my teeth and my nasty chapped lips stuck together.
Urg. This is miserable.
I forced myself into the shower so I could feel some semblance of humanity before I hopped in the car to head for the Emergency Department.
Every minute an ambulance is turned away from an emergency department.
I’m really glad I wasn’t turned away to suffer with my pneumonia privately. All the fluids and healthy eating in the world still would have left me dead without some antibiotics.
I was quickly diagnosed with pneumonia and started on Ceftriaxone and zithromax IV. I had the gamet of tests: blood cultures, chest X-ray, urinalysis. They all need to be taken to determine the exact sight of the disease.
My fevers have continued to rise and then go away with Tylenol. I wish I could just get a standing order for some of the Tylenol.
It’s my new best friend now. It’s my new favorite friend.
If I don’t get my Tylenol, I’m way too hot. Hot, HOT, HOT. I’m uncomfortable and will not move until I get it. Then, when I get it, I start sweating, and sweating, and sweating, I‘m sweating it out. My fever is breaking.
I am still confused, mostly from the fever and the medications I have taken. I’m having trouble writing.
I had to turn off my IV fluids to write since I didn’t appreciate that the line was placed in the center of my antecubital.
Now that’s been moved, The IV team just came in and placed the line somewhere more friendly for writing.
I think I’m going to fold up the computer for tonight, and read what I said in the morning. I’m not sure I was so coherent.

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