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, November 6, 2009

Two Words: Bronciolitis Obliterans

Being educated as a cancer patient is both a blessing and a curse. It allows you to actively
participate in your care with confidence that the treatment you are receiving is the very best for your individual case. On the flip side, it removes the ability to deny or ignore information that wouldn't even register on another patients radar.

Yes, Virginia, ignorance is bliss.

Why do I say this? Two words: brochiolitis obliterans. What's this you may ask?

This is a rare, possibly fatal hypergranulation of the bronchioles resulting in their obstruction.

“What?!” you say. Still, unclear?

It’s scarring within a portion of the lung caused by excessive inflammation causing scarring that leads to extreme shortness of breath and inability to breathe. It’s a form of Chronic Obstructive Pulmonary Syndrome.

I remember this disease from college. It was only studied briefly, but it caught my interest and I filed it in my mind under "scary as hell."

It is also a possible side effect of graft vs host.

Ironically, and worse for me, upon research, it is also most commonly associated with making popcorn.

Guess who worked in a movie theatre through her teenage years for the free movies? Yes, that was me. Getting all those free trash bags of popcorn for he party was not worth the possible damage it is doing me now.

Who would have guessed that something as simple as my job as a teenager could cause life threatening side effects alongside my transplant?

Hopefully, now, Jon will stop pushing the butter on me when we go to the movies. I knew there was a serious reason I didn't like that stuff. It's now trying to kill me.

I always thought it would be the "Black Lung Disease" from tarring roads that would take out my lungs.

B.O. is uncurable, diagnosed usually through hyperinflation on scans or a thoroscopic biopsy of the lungs.

I won’t be getting another thorascopic biopsy of the lungs to confirm this possible diagnosis. I’ll see a pulmonologist.

Eventually, I’ll do pulmonary function tests, which I can’t do right now since I have a small pneumothorax that hasn’t quite healed.

Doing PFTs right now could pop my lung like a balloon. PFTs entail blowing into a machine and “push, push, pushing” until you can push your breath out no more and everything goes black.

Where and who I see as a pulmonologist has yet to be determined.

This is mainly what I talked about with Melissa and Dr. Alyea yesterday, NOT my possible Donor Lymphocyte Infusion.

The donor lymphocyte infusion is indicated to induce chronic graft vs. host disease in patients who have not exhibited signs of the disease. Chronic GVH is the only good, cancer fighting outcome of an DLI.

Since I all ready have a moderate amount of graft vs. host, and I may possibly have a severe, life threatening disease from the GVH, the risks of a donor lymphocyte infusion killing my lungs and me outweighs any anti-cancer benefit that could be received.

Simply put: Risk of Death outweighs any benefit of an DLI.

I agree. I’m not going to unnecessarily risk my life and lungs.

Being in remission at this very moment, I’m really hoping that not only did the GVHD try to kill my lungs along with my eyes, etc., but that it has killed those damn rogue cells that are causing cancer.

Sometimes all that’s needed is a little reset of the system to get it functioning normally.

I could be on my way back to permanent recovery right now!!

Alyea’s quote of the day, which he said on several different occasions was “Let’s keep our options open.”

After reviewing my medications and informing him that I have been taking Bovine hormones to assist in the healing of my lungs (pneumotropin), he asked if I was still in contact with Dr. Jacob.

I try to pretend that these questions don’t shock me or cause alarm or fear for my life, but they do.

Why is Dr. Hot Shot Director of stem cell transplantation at Dana Farber, one of the few Doctors in the United States doing active research on vaccinations asking me about outside possibilities?

This isn’t the way it should be.

Dr.’s are supposed to be invincible genius demi-Gods that NEVER fail, why would my crazy alternatives still be up for consideration.

I went through this crisis with the local persononelle I worked, and then with the providers at DHMC, and now I’m scared that I’ll be out of options at Dana Farber.

I’ll start getting the looks of pity and the sighs of frustration as I’m guided fruitlessly through testing.

But that’s not going to happen.

That was just my mind side tracking to a deep dark place called “Never Ever Going to Happen.”

I’m in remission. I feel good and that’s where I’m staying.

1 comment:

linda keenan said...

im trying to get a name for you on who might be best as a pulmonologist. even though im sure they will rec someone good, it cant hurt to get another name... ill let you know when i get it