What are the odds?

The Leukemia & Lymphoma Society has an ongoing support group.  They put out information and offer conference calls to ask question or talk with other myeloma patients about issues.  I haven't participated yet but I'm thinking about it.  

Some of the information they have published is interesting.

Myeloma is the second most frequently diagnosed blood cancer.  

•. Each year in the United States, there are more than 30,000 new cases.
•. Almost 13,000 people will die from myeloma (each year).
• Only 48.5 percent of patients diagnosed with myeloma will survive five years after diagnosis.

This is the most recent set of statistics but it's still old.  The 48.5% of patients who survive five years is based on actual cases, meaning the data is at least five years old.  Five years doesn't seem like much but it's huge in the cancer research field.

I sound like I'm searching for a silver lining to depressing news.  Maybe I am but, regardless, having around a 50% chance of survival after five years means I'll be here for another thirty years.  Am I math impaired, over confident, foolishly cocky or just too busy to worry about it?  The answer is yes!

My medical practice

The meeting of cancer doctors came up with a solution.  They said I do have GvHD and that I should go back on a drug called Sirolimus.  It's an immune suppressant drug.  With a suppressed immune system, my body and blood will get along a little better and the GvHD symptoms should diminish.  I will of course be more likely to pick up a cold or other bugs but that's the tradeoff.

As often is the case, this exactly what I thought they would say.  I wonder if I just diagnose myself from now on, could I bill the insurance company?  It would be a way to pay back some of the medical bills that have accrued over the past year.

Round Table

The Seattle Cancer Care Alliance does a lot of things right.  One of them is recognizing the fallibility of their own doctors.  This assumption based on a practice they implement every week. They have meetings with other physicians to discuss each patient and how to implement treatment.  Sometimes, they even have meetings with specialist doctors from across the country.

I was just reminded of this practice yesterday when a nurse from the SCCA said they were planning to discuss my latest liver problem with the group of doctors.  Today, I heard the result of that discussion which wasn't all that spectacular.  As I expected, I'll be going back on Sirolimus, a drug that reduces the effectiveness of my immune system.  It's an immune suppressant, taken so that my new immune system won't fight rest of me as a foreign entity.

Enzymes?

I'm trying to focus on the positive here.  With more energy and a path to normal health, I feel like I can see the end.  The two big battles are with cancer and Graft vs Host Disease.  Both can kill and both can make my life miserable.  I know I'll beat each disease.  With every setback, I look forward to a new victory as we figure out a way to fix the problem.

The doctor called me yesterday to let me know about a new setback.  My blood test showed a lack of cancer but extremely elevated liver enzymes.  A normal score is between 10 and 40.  My score was 463.  That means there has been damage to the liver.  The doctor asked me if I've been binge drinking, otherwise it's probably GVHD.  If I have been binge drinking, I don't remember it so we're pretty sure it's GVHD.  Now it's back to the drawing board again.  I may even get a trip to Seattle out of this little medical blip.

The school year is three quarters done.  I've taught music to young musicians for 139 school quarters or almost 35 years.  With just one more quarter to go, I'm looking forward to moving on.  If I look back, I'll miss the students, so I don't look that direction.  Forward and onward to a new career... and a cancer and GVHD free life!

Is cancer beaten?

Lately, my posts have been a bit on the dark side.  Looking back at my experience with cancer and seeing so many others suffering in so many ways gave me a different perspective.  I see cancer as a very dark entity and disease that fights basic humanity.  That being said, I feel that I am slowly winning battles, one small step at a time.

In my case the problems from the side effect are lessening.  I notice it as each week passes by.  I notice an ability to walk further, to lift more and even to have a little more energy.  My posts should reflect the present more than the depressing past.  I haven't beaten cancer yet but I feel like have.  Some side effect may serve as a reminder that it's not over but I can ignore those and focus the good.  I feel like I've beaten cancer.  That's really all that matters.

The Pit of Darkness

Several months ago, I talked about the pit of darkness.  While resting in my small apartment, in Seattle, drugs were racing through my body and mind.  I don't believe I had hallucinogenic episodes but extremely loud and visual dreams and daydreams were common.  I frequently visualized a huge, dark hole.  It was about twenty feet wide and appeared to be dug out solid rock.  There wasn't a bottom, just depth that represented further sickness and misery.  Falling into the darkness was death.  Several people, including myself were clinging to the sides.  Some were were just trying to avoid the inevitable fall and others were putting all of their focus into a real or sometimes futile attempt to climb out and stand on firm ground, left wishing they could help those left inside.

My misunderstanding was that climbing out the pit would happen sooner than later.  Leaving the SCCA would be the marker for climbing out and eventually standing on two feet without worry of falling.  The truth was and is that leaving Seattle was a huge step in the right direction.  After, thirty-four weeks of daily treatments, leaving that behind for a somewhat normal life was a huge leap toward being healthy.  But even though that step was taken one year ago, I know now that my vision of complete health was just a dream.  It's still a dream that I will achieve in real time, just not quite yet.

As for the dark, bottomless pit also known as cancer, I have more hatred for it than anything else.  The fact that I have or will conquer cancer makes me hate it even more.  I know the pain and the cost that it took for me to beat it.  Others have paid more and given more of themselves in pain and suffering and still slip away to the disease.  I struggle with accepting my own success with cancer.  I don't deserve it more but then I didn't deserve cancer in the first place.  For now, my hand is on the surface.  Before long, I will be able to pull myself out of the pit and walk away.

And yes, if you are wondering, I'm still taking a several drugs and yes they still give me vivid and weird visual daydreams that I can't extinguish.