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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Tuesday, April 14, 2009

The Princess & The Pea

I’m sick.
I have cancer.
I PET scans are pretty definitive.
I like the idea that my immune system, Simone, could overcome the cancer.
We’ll give her some time to work her magic.
I know I have cancer.
I can’t remember how many times I’ve relapsed.
There is a clear pattern of symptoms that accompany my relapses.
I get fevers at night. My muscle ache. I crawl into bed cranky, aching, and chilling.
The fevers in the evenings are about 99.7-99-9.
If I start having evening fevers with muscle aches and minor chills, my cancer is acting up.
I think, if I were inhuman and didn’t have crazy things like psychological defense mechanisms, I could predict my relapses to the day.
What’s cooler than this from a treatment perspective is, I think my intuition can be replicated.
Patients know their bodies. Their ability to understand themselves can be honed.
I joke I have “radiological” or “Diagnostic” fingertips.
I’ll find a node smaller than a pea.
My first hematologist nicknamed me “The Princess and the Pea.”
If there was a node acting up, I would find it.
Most the time, my providers could only find the node upon my direction.
These are people that use their hands to feel cancer day in and day out, but I live in my body 24/7.
I have the benefit of knowing when something changes. I have the benefit of knowing when a minor feeling is out of place that I am compensating for exteriorly, but can’t explain interiorly.
People used to think this was paranoia.
You’re not paranoid if your body is really out to get you.
I started complaining about three weeks prior to my PET scan about enlarged nodes in my armpits.
I had a large, soft, moveable node that was easy to find and touch.
This didn’t worry me so much, but just above this, along my lymphatic chain, was a very small node, smaller than a pencil eraser.
This node was hard. It felt like a pebble. It was also deep within the tissue.
I didn’t like it. It told my providers, they couldn’t find it.
I told all my providers actually, at least 5 professionals: 2 hematology specialists, a nurse practitioner, a fellow, and a resident with a desire to specialize in hematology.
None could feel the damn nodes I was so concerned about.
When my PET scan was read, there were auxiallary (armpit) nodes that “lit up.”
You don’t want to light up on a PET scan. If you do, it could indicate cancer.
It could also indicate a virus or normal lymphatic activity.
I was told everybody could have some reactivity in these nodes.
Well, if everybody has reactivity, then why weren’t these reactive before, in say, the past three years and 20 PET scans I have had previously?
How about that evidence?
The best predictor of future behavior is past behavior.
Based on past behavior, My body is acting up. It is misbehaving.
Ironically, in Spontaneous Healing, by Andrew Weil, there is a case study on a man with lymphoma that presents EXACTLY like mine.
It begins with a viral like infection that inflames all the nodes. I had this infection in July 2005. It causes lethargy and muscle aches.
After the illness resides, some nodes remain enlarged, but soft.
Over time these nodes harden and become more fixed.
The book this man is featured in is called SPONTANEOUS HEALING.
Guess what happened to him.
It was healed through some simple lifestyle changes.
I believe there is a cure to my disease. If not a cure, there is a way to manage it so my cancer does not cause disease.
I know it exists. I know I’ll find it.

1 comment:

andyson said...

If there is anyone out there who can find that magical balance to keep the cancer stable, it'll be you.

My hair has grown back, but I don't like it. If I shave it, do you think it'll grow in differently?