Transplant 101

This is the big talk. The transplant doctor sat me down and talked me thru the procedure in detail.

This is less a blog, and more a note to self of some of these that got covered and what I can expect.

Side-effects:
- nausea from the preparatory drug, from the melphalan (cancer-killer)
- mouth sores, tracheal sores, all the GI stuff from the melphalan which does not per say recognize cancer-cells, but instead targets rapidly dividing cells which encompasses both the cancer cells and the cells of the GI tract. The nurse told me that in the days prior to amifostine which ameliorates the side effects, people were absolutely miserable from the GI issues.

Admittance: Right now the bedspace is full, but I can expect 24 - 48 hours notice that the procedure will start. The melphalan is out-patient with admittance the day after. I'm not sure why but I asked if I could get the melphalan in-patient. I think that mentally I would prefer to psychologically feel that the cure is underway and being admitted somehow does that.

Possible outcomes:
I live.
I die.
Diesease goes into complete remission for some unknown number of years.
Diesease goes into partial remission. Would need to try the transplant a second time with the possibility that it works.
No change.

It will be three weeks in-patient pending some outstanding result in terms of blood cell replacement.  Speaking of which, the drug neupogen will be administered again. I had bad side-effects from the first dosages: migraines in particular, and overall general hurting. Time to ramp up the vicodin.

The Realization That Something Is Wrong

"Larry, Are you doing okay?" That was a question that should not have needed asking. The previous winter I was hiking 5 to 6 miles a day thru Monroe County parks in the middle of winter with temperatures below 20 degrees F.  The goal of the hikes was always to make it to that hot chocolate at the end and sit around with good people and laugh and talk and relax after a good afternoon of exercise.

"Are you doing okay?" The problem was that I was not doing okay. I wasn't huffing and puffing. I wasn't falling down. But each step felt like walking thru molasses. And no matter how much I did on treadmills, accu-tracks, exer-bikes or ellipticals, I could not build up endurance for the hikes.

Hiking just wasn't fun anymore.

The up side was that via the hike leader's question, I received an external indication that something needed investigating. And fortunately, I paid attention. The next thing I did was bring the medical system to bear.

Getting the 2nd Diagnosis

It's a cliche, but you just can not be prepared for the news.

After the neurologist sent me to the hematologist, the only thing I was thinking was that we had a diagnosis of Chronic Imflammatory Demylinating Polyneuropathy (to paraphrase Halle Berry in 'Die Another Day' - "Now, that's a mouthful."). We had a treatment plan of Intravenous Gammagloblin (another mouthful), and so why do I have to take time out to go see another doctor about another obscure - to me - blood level reading.

"You have a collection of symptoms that indicate a syndrome called POEMS. We don't have much experience with it here, so we suggest that you visit the Mayo Clinic for a second opinion to confirm POEMS or develop another diagnosis". In a nutshell, that was the delivery.

Points for honesty. It would have been easy for the doctor to go ego-tripping and not tell me about getting a second opinion.

Points for getting me down there to talk. I was not ready to acknowledge the importance of the news. I had a neuropathy diagnosis, and did not nor was I looking for a cancer diagnosis. That led to the question. "So are we talking about cancer?" And the answer - drum roll here - "Yes".

Badda - bing. Badda - boom.

Halfway thru the Journey

The cafeteria view of Strong Memorial Hospital leaves something to be desired. It's somewhat not interesting to look out the window and see a parking garage while waiting for the cancer folks to call and tell me that we can begin blood collection.

What I heard was that I will be in a bed for four hours. I'm not drinking a lot today.

There's lots of people around getting drinks and snacks and meals. They're reading the paper, or talking with co-workers or just looking out the window like me.