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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Friday, March 27, 2009

Still Sick


I saw the Doctor and Practitioner today.
According to them, I’m still sick.
I’m going to be sick, probably for a while.
Some of my symptoms are chronic, meaning they could last forever, specifically the inflammation from my graft vs. host disease.
I’m getting an appointment scheduled with an optometrist at Mass. Ear and Eye for the inflammation in my eyes causing grittiness, pain, and possibly visual impairments.
I’m told he’s really good.
I’ll take it. Everybody I have been sent to has been good so far.
I mean really good, rock star, celebrity, top of their game style.
I’m in good, capable hands.
I’m getting my liver checked next week, sometime, at Dartmouth.
My liver enzymes today were. . . . . . bad.
A test for liver enzymes shows a level of breakdown happening within the organ, or simply put, failure. The enzymes include aspartate aminotransferase (AST or SGOT) and alanine aminotransferase (ALT or SGPT). These enzymes are normally contained within liver cells. If the liver is injured, the liver cells spill the enzymes into blood, raising the enzyme levels in the blood and signaling the liver damage.
If any of you are freaking out and are needing specific numbers, here it is: My AST is 98 (9-30 is normal) and my ALT 94 (Good range 7-52).
My alkaline phosphatase is up.
This is a blood test that measures the amount of the enzyme ALP (alkaline phosphatase).
When this is present in large amounts, it may signify bone/liver disease or a tumor.
Damaged or diseased tissue releases enzymes into the blood, so serum ALP measurements can be abnormal in many conditions, including bone disease and liver disease. Serum ALP is also increased in some normal circumstances (for example, during normal bone growth) or in response to a variety of drugs.
Okay. Screech. Halt. Rewind.
I said it. You read it. Go ahead and reread.
My alk phos is 307.
That could mean a tumor.
It could also be a side effect of my medications or the transplant itself.
What I need to immediately stop doing is insulting my liver.
I’m not talking about drinking or forcing toxins into my body.
I’m saying I need to stop forcing it out. No more osteopathic/acupressure stimulation with acupuncture every other week directly targeting my liver. I’ll still get the services, but be more gentle.
Definitely no more homeopathic German Bio Tinctures that none of us really understand EXACTLY what it is doing to my body, especially ones that stimulate the lymphatic system or contain low dose live viruses.
No need to freak out, I never tried the live viruses. I get the rationale. It still scares me.
The rationale is similar to vaccinations. You reintroduce viruses slowly into your system to gain immunity without suffering the effects of exposure. I would have taken doses that could comfortably be prescribed to a 6 month old.
When I first tried this, I was given adult doses, but things have changed.
I added these medications slowly, week by week, to know if something caused a reaction.
I can’t tell you if what I took catapulted my disease throughout my brand, shiny, new immune system, but if it did, I wouldn’t be any more worried than I would be with one tumor.
My cancer goes away, easily.
It just always comes back.
It’s a ferocious, persistent little bugger, just like its host.
Aunt Pauline took me to the health food store after our appointment. We had a bonding day. Pauline always has been a Grade A caretaker.
The idea behind the health food : I don’t want my body to work any harder processing what I eat than it has to. Every little piece of energy that is taken away from fighting my disease to process something difficult, like grease, or molecularly altered to a naturally unrecognizable state, such as trans-fats, is lost ground in my fight against cancer.
However, I need to pack in food.
I am not trying to be the next America’s Top Model. I need to weigh in at more than 106 lbs. That’s a loss of 12lbs since January. It’s a loss of three lbs. since last Tues.
However, I did measure in at 166cm at the hospital, maybe I can sneak into model range height somehow. I could take up yoga and stretch myself.
I’d be okay being a poster child for cancer.
So at least, I got a lesson in shopping for natural foods. I’ve never been to a natural food store or co-op outside our local Granny’s Garden, which is great.
I was a little overwhelmed, almost shocked into buying nothing.
It was like the first time I went into a Bodega in the Bronx.
It was a culture shock. There were all these foods I didn’t recognize. I wouldn’t know what to do with them.
THEN I got asked if I had my mask on because I had to protect against allergies like it was COMPLETELY NORMAL. It was a signal saying “it’s-okay-to-be-an-allerginphobe-in-here.”
Seriously, air borne allergies to things like latex and peanuts are very scary. Those allergies kill people.
I would be grocery shopping with my mask on if I had to be scared of a peanut lurking around every corner.
I think I fit in there.
So, in summary of my trip, I am sick. I’m going to be watched closely. I’m going to watch myself closely. I’m going to finish the cephalosporin I’m on for my pneumonia.
I am NEVER EVER going to EVER miss a dose of my Bactrim, which I haven’t, but I gave my word specifically to love and cherish this medication, which prevents against PCP pneumonia. I can use my albuterol rescue inhaler.
I’m going to put drops in my eyes 4 times a day, minimum.
I am NOT going to beat on my liver with hands, needles, or weird German medications, even though I think it’s one of my toughest organs and I know if I ever lost it, I could have a piece of Heather’s.
I’m going to relax and eat and drink.
And I’m going to get better.

1 comment:

brynn said...

I'm here for you girl! You are going to get better! As soon as my stuffiness goes away I will visit and keep you company. I'm thinking of you always! :)