The ugly, the bad and the good

Ugly:  Rash spots that refuse to leave; Cancer

Bad:  Neuropathy.  Renewed finger cramps.  This is especially bad when I'm playing my tuba in a group.  Suddenly, a finger will press down a valve that shouldn't be down!

Good:  Feeling pretty good.  I'm able to overlook the minor GVHD symptoms and pretend they don't exist.  Take that, cancer!!

Deception 2

For the past several months, starting with the initial discovery that I had cancer, to the worse discovery that it was a nasty version of myeloma, only one consistent belief has gotten me through the sickness and pain.  When things looked dim and odds of mortality were depressing, when a doctor told me to get my affairs in order and when sickness from treatments made me more sick than I could have imagined, my trick to get through it all was nothing more than a deception.  It was a lie that I told myself and others around me.

Tonight was the last parent conference of the year.  Like my students, the parents of my students are very kind and exceptional people.  They all asked how I was doing when our purpose was to talk about their children.  One parent happens to be a health care professional and is very aware of my medical situation.  She asked about my health and my answer made me aware that I have been dishonest with myself and everyone else for months.

I told her that I expected to be completely healthy by now, that having GVHD over fifteen months after the transplant wasn't what I expected.  The truth is, the doctors told me that I could have these symptoms for the rest of my life.  They truly don't know how long GVHD will last.  They said the best possibility is it could last just a year after transplant so I took that bit of information and ran with it.  I told everyone that complete hearth was around corner.  Within a short time, I would be as healthy as ever and this entire cancer thing would be nothing more than a bad memory.  I believed it and I shouted it to anyone who would listen.

I grabbed a sliver of a possibility and owned like it was guarantee, a promise to myself that a one year timer would eventually wind down and I wouldn't have any symptoms for the rest of my life.  The doctors just said it was a possibility, not a probability.  Now that I'm beyond that deadline of one year, and GVHD is still playing havoc with my body, I have no choice but to admit that I was wrong.  I was wrong to think a one year timer would bring complete health BUT I was also right to believe it.  Believing is hope and without hope, there isn't much to live for.

Nothing has really changed.  I'm getting much better and eventually the hope that may have been a deception at one time will turn into the truth.  I know that complete health is in the future.  I just don't know when.

GvHD keeps on giving

I guess it's not called "chronic" Graft vs Host Disease for nothing.  Fifteen months after the big transplant and it's still showing itself with mysterious symptoms.  This was a redo of the dozens of symptoms that used to happen at least twice per week.  I developed a pretty bad body rash about three weeks ago.  It looked like measles but didn't spread to the face, thank goodness.

First it was thought of as a drug reaction.  After a couple weeks off of the drug without getting better a biopsy showed that it's GVHD again.  The good news is just knowing.  Now I'm taking more steroids than I've ever taken and the red dots are jumping off of my skin.  I'm embarrassed to check but there is probably a trail of little red dots everywhere I go.

The side benefit is the energy picked up from the steroids.  It's like a constant flow of caffeine.  I can stay alert all day and the ultimate test was a staff meeting this afternoon.  I stayed awake for the entire meeting!

Past or Future?

This blog was started to keep people updated on the progress of fighting cancer while I was away last year.  The shocker is that the blog is still going on mostly due to encouragement from a few individuals.  My expectation was that there would be nothing to report at this point.  The cancer and symptoms would be long gone and my health would be as good or better as it was five years ago.  Foolish optimism kept me believing and support from people made me feel worthy of looking forward.

I looked forward because the present was miserable.  I looked to the past because the present was miserable.  The past taught me that happiness and health are reachable and the future was a dream to live in while the misery of the treatments were testing my strength.

Just yesterday, the doctor took a pound of flesh for a biopsy (maybe it was just a gram).  She said it looks like Graft vs Host Disease but she won't know for about a week.  In the meantime, I just deal with hundreds of red dots spreading down my legs and arms and hopefully not to the face.  My disappointment isn't that I still have multiple weird symptoms.  I just didn't think I would have them this late in the game.

When I was at my weakest, I used to dream about the future without health issues.  That future was today.  It's like getting a promise that happiness and health will be delivered to my door in January of 2017.  It didn't arrive.  The promise of happiness and health was a promise made by myself.  It kept me going.  Now that the problems are still going on, I feel tricked and cheated.

There are three selves, past present and future.  The past was hopeful but not often correct, the present is looking forward to a day when it can live in the present and the future still provides a sanctuary.  It's a sanctuary that I still believe in.  It allows me to smile and move on.