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 9, 2009

Test Day

I'm waiting in the bloom center. This is my favorite hiding spot. The library has always been a favorite spot of mine I feel like Belle from beauty and the beast finding solace comfort and understanding among the pages.
Now, I just want far away from the waiting room of overcrowded dana 1.
I woke up early but wasn't allowed breakfast or coffee because of my PET scan. The scan requires at least 6 hours of not eating prior or else the sugars metabolize and interfere with readings.
Then I took a xanax, which does not only functions to relax me but keeps the radioactive iodine from being metabolized by brown fat in my body giving a false positive cancer reading.
I got to the waiting room hungry tired and high. Not a good combination.
Add to this I'm a little more irritable than average from the anxiety of waiting for my test results and I don't even want to hang out with myself!
The library is my sanctuary. I left nuclear medicine hollering at the crew to tell my doctor only good news.
Something tells me the medical system doesn't work this way though. I can’t quite put my finger on it, but I think I'm getting the truth like it or not.
To try to offset the possible upcoming feelings of complete and utter devastation I dressed cute. For my retail therapy I bought skinny black dress pants. I'm wearing them hoping to feel as fabulous and vogue as I look. Check the pictures. Fabulosity is the word of the day.
I haven’t heard how voting went yesterday and whether or not sb158 passed. I also haven't heard how the town meeting with Sen. Hodes went. Hopefully that news will put me in a good mood if I get bad news.
Lexi is spending Saturday night and Easter morning with us. This will keep me happy. X is psyched for the Easter Bunny. He hides change in eggs instead of candy.
X is on a savings trip and has been scrounging money from everywhere. I did convince him to clean my car since there may have been coins hiding under the trash. It worked. I think I’ll employ this tactic again.
Xander does still plays the matching game with socks in the laundry.
Finally, after a decent wait time, I think everybody was trying to get squeezed in prior to the Easter Holiday, we were called into the exam room.
If I’ve ever seen a room that needs a make-over, I’d say it was the exam rooms. I’m not just talking at Dana Farber. I’m talking across the board, hospital to hospital, the exam rooms are bland and ugly.
Splash a little paint. Hang a print people! It’s proven to little the mood.
Just when mom and I had succumbed to watching videos on Utube in an attempt not to die of boredom Alyea walked in.
I knew he would be later than normal. On test days he likes to go to radiology and discuss the scan results. He likes to see the scan himself.
I’m certainly waiting to have a confirmed PET scan reading than a second hand preliminary reading from some radiologist I’ve never met.
The verdict: I still have hot spots.
It may be inflammation from the graft vs. host disease showing on the scan.
However, the hotspots in my liver and peri-aortic areas (around my heart) still exist. They have not grown.
There are additional hot spots in the spleen.
All these areas of suspicion are small. I believe less than one centimeter.
Even if it is Hodgkin’s, they do not pose an immediate risk.
There is a theory, one of the alpha goals for cancer therapy, to have cancer exist without disease.
Yes, I said it. I could have cancer, but not have any symptoms. I would be fine with that. The problem exists when tumors invade space, such as in the lungs, throat or heart, making it difficult to swallow, breathe, or sending you into cardiac arrest.
My nodes are small. There is enough space in my body for everybody right now as long is the tumors don’t go stealing blood supplies and diverting my energy for their use.
Then the cancer will get evicted.
Rushing for a T-Lymphocyte infusion, the next step in therapy, from the donor would be jumping the gun.
The donor’s system still needs time to work. Simone has not reached her maximum cancer killing efficacy.
I’ll get another scan in 8 weeks.
If these damn spots still exist (I’m channeling Shakespeare here, out damn spot, out I say), then I will have a needle biopsy done.
If this biopsy is positive for cancer, I’ll get a T-cell lymphocyte infusion from my stem cell donor.
I don’t know anything about these. I’ll research them sometime.
Ironically, Alyea was always using June as the alpha month.
“In June, you can go to NYC” or “In June, we’ll get a scan and see how everything works.” He was always saying.
Melissa thought this was just some arbitrary month he picked out of the air.
I was following him thinking there was some special reason that he kept talking about June.
Maybe he didn’t have some special, scientifically proven reason for waiting until June for further therapy, but that’s what he said and that’s the way it has worked out.
When June kept coming out of his mouth I did wonder the exact reason, and I suspected it couldn’t be really explained using science.
I was perfectly okay going with his gut instincts on this one. He’s the one that does transplants for a living and sees people like me day in and day out. If his gut instincts tell him we’re going to lay low until June, well I’ll be laying low until June.
Few people can verbalize their unconscious feelings and instincts, but that doesn’t mean they don’t exist. It certainly doesn’t mean there wrong. June it is.

On the upside, this does give me a two month reprieve to continue healing and exploring hobbies I enjoy. I'm talking to the American Cancer Society and some other health advocacy groups. You'll be seeing more of me.


Anonymous said...

Could PIYO be your next new hobby? You should come check it out with Brynn and I. Either way, let's get together soon!


Anonymous said...

We better be seeing and hearing more of you! Not getting a daily dose of Hillville is unthinkable. Love your hot new've got sassitude! Stay positive and go have some fun.

Anonymous said...

Glad things went relatively well. You are quite used to playing the waiting game, at this point. I'm sure you've perfected the art!

The new outfit is TOTALLY cute! I feel certain it helped.


Anonymous said...

Hill ... you looked smashing ... & I continue to be impressed with your strength, courage & tenacity. You go girl!! And know that there are a lot of people pulling for you.

Anonymous said...

Mission accomplished as far as dressing cute goes - nice job! Your "inconclusive" PET results could have been soooo much worse - and I'm so glad they aren't! So you hang for a couple of months, getting stronger and learning more and playing more. I'm sure you'll parlay that time into something cool - seems like you are a pro at that!