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, December 12, 2008

Suga Hill

I'm coming out the gate. I'm prepping in my corner. My round whatever is about to begin again. No TKO for me.
Here's a pic for you. Suga Hill in all her glory.
I was discharged yesterday afternoon after my tests yielded no diagnosis.
This happens quite a bit.
It happened often during my first transplant.
I would present to the hospital MISERABLE with a series of symptoms.
It was clear something was going on.
I’d roll around to feeling better a couple of days later, and everybody would let out a big sigh of relief. Whatever the problem was, it left, and I was well enough to be discharged.
My stomach pain and diarrhea was not GVHD.
My labs showed it could be a possibility, my CT said “no.”
With the pain increasing after I eat, it may have been pancreatitis, but that would have shown on my CT.
My PA said it also could be my gall bladder. Problems there would not be necessarily seen on a CT.
Either way, she confirmed based on an abdominal x-ray that I am F.O.S. I’ve been diagnosed by a professional.
If my stomach problems keep up, I’ll buy myself a colonoscopy for Christmas. I get checked next Thurs, and I’ll call my team if any problems show up before then.
My symptoms are somewhat expected for a patient about 60 days after a transplant. Around this period my blood counts can again drop. GVHD is a big possibility. I’m not sure what the pathology (biological reason) is behind this.
Also, little hair stubs from my hair that has been GROWING IN SO NICELY have been falling out.
I asked Melissa if losing my hair again was a possibility.
She made a face and said yes, but it would just be thinning and bald spots.
She knows how I feel about “spots.”
This was information she omitted to keep from worrying me.
She’s lucky that I was in pain too severe to move or I might have swung my pillow at her.
We’ll see if I lose my hair again.
I do appreciate it when my providers “omit” unnecessary information that will do nothing but scare me.
For example, upon diagnosis, I had a tumor fairly close to my heart.
I, luckily, had not listened to my reports and Dr. G didn’t think I needed to know. The tumor was going to be treated quickly. Knowing would not have benefitted anyone. It wouldn’t have expedited my care.
I just would have been a panicked mess wondering if the mass would grow and send me into cardiac arrest. No need for me to know. I was able to sleep at night until it went away.
I think this is a good thing, but still, sometimes I’ll see a look flash across a providers face and I’ll wonder just what they know about my situation that I don’t.
At that moment, I want to know, but I never ask. They’re not telling for a reason, and they’re the professionals.
Their "broad shoulders" allow me to go about my life in ignorant bliss. I get to click my heels and say "hallelujah" everytime I overcome an obstacle.
I get to be Suga Hill and fight round after round.
I think every moment is making me stronger, and that maybe, I'm working towards a goal, my purpose, whatever that maybe.

1 comment:

Dani said...

I'm glad you're finally able to come home, and hope you have started feeling better, I would love to come see you soon.