My Cousin Carl

Today was a terrible day.  I heard the news that my cousin, Carl Steiner passed away yesterday.  He had Acute Myeloid Leukemia.  

Several months ago, I ran into Carl at the clinic of the Seattle Cancer Care Alliance.  Over the past year, I heard about the passing of several fellow cancer patients.  Each time the news came, it seemed to hurt a little more.  This time, well, he's my cousin.  It's not right.  

Carl was a high school teacher, a banjo player and an absolutely nice guy.  When I think of his fight against this miserable disease, he won every part of it.  When I would see him at the clinic, even though he was in pain, he would smile.  His story with cancer was heartbreaking but he seemed more concerned with my condition.  Cancer may have eventually taken his life but it didn't break him.  He was a beacon of positive hope, surrounded by people who were in despair and felt hopeless.  He was my hero.

(Cousins)  Carl Steiner and Mike Martinson at the SCCA

Stayin' Alive

Two school days with students so far...one hundred, eighty some to go.

The difference between this year and the end of last year is huge.  I can work the full day without exhaustion, confusion or a feeling of bewilderment.  I had gotten used to being weak and tired and have forgotten what it feels like to work with more energy.  The last time I felt this normal was in the fall of 2014.  I can safely say that for now (knock on wood), I'm almost back to the pre-cancer level of fitness.  

Looking back makes me appreciate health like never before.   Now, I can more clearly see the difference between sickness and wellness.  The extreme fog has lifted from my head and my body no longer complains with each movement.   Now I can finally start to focus on life rather than just staying alive.

Goodbye GVHD (again)

It's been nine months since the allogeneic transplant.  That's when I received the stem cells of a stranger.  His blood, is now mine.  My former blood no longer exists. After nine months, my body is still resisting the new blood, still showing a stubborn dislike for the blood that has no doubt saved my life.  One after another, symptoms of Graft versus Host Disease take a turn at playing havoc with my body.  They sometimes cause pain or just inhibit daily life.  Every time the symptom would fade after a month or more of dominance, I would make an assumption that it was the last symptom, that I was finally done with this stage of the treatment and full health was within sight.  I would make declarations of being done with GVHD and ready to move on.  Then the next symptom would surface and the saga continues.

Looking back on the past nine months at over twenty different manifestations of GVHD and believing it was over after each symptom faded, I feel a bit foolish for continuing to think it will be eventually finished.  On the other hand, being foolish has never been a great personal concern.  I refuse to expect more sickness, more misery and more pain.  My latest two GVHD symptoms are fading at the same time and I still believe, in fact, I'm certain that it's over.  That chapter in my treatment of Multiple Myeloma is closed.   The next chapter is about strength, not sickness.

Getting Better

There are two battles for cancer patients who have gone through months or years of treatment.  This is something I picked up through observation of others and by trying to watch myself as a third person observer.  The first battle is physical.  That's the struggle that everyone thinks about.  It's a confrontation between the body and a disease that can result in life or death or a compromise of life with a new disability.  That battle is won or lost in a large part by doctors and nurses.  The patient plays a role but it's a submissive one to the professionals who are practicing medicine.

The second struggle is within the mind and soul.  The patient has complete control of this one.  To win this battle, the patient must be adamantly certain of recovery.  The demons of cancer will constantly search for cracks within the shield of optimism.  They reach into the soul and offer an easier path of simply giving up and allowing the cancer and medicine to run their course.  Those demons take advantage of the constant pain and agonizing sickness brought on by disease and drugs. They attack when the patient is weak.  They discourage resistance.  They see patients as victims rather than adversaries.  Their desperate goal is to get patients to live with the mentality of victims who have given up hope.  "Just let it happen," they would say.  "Don't fight it."

As for me, things are settling down in time to go back to work.  The swollen legs and feet are slowly getting smaller and less painful and energy is getting better each day.  I forgot what it feels like to just feel normal.  I realize I'm not completely back yet but my standards of feeling good are so much lower than they used to be.  As things improve, I feel like superman on certain days even though I'm still weak and tired and trying to ignore pain.  My goal is to have the energy and strength that I had two years ago.  I'll get there.

The mental side of things is also improving.  My cancer demons make their appearance less often.  They still check on me now and then to see if there is a new weakness.  They are looking for any sign that I may give up.  As always, they are relentless and unmerciful but still unsuccessful.  They went after me when I was at my lowest point and they ironiclaly gave me strength by resisting.  It may have been strength to simply get out of a chair or to walk down the block or to just fake a smile as if I was feeling great.  Fighting my own demons was a battle to be won by myself not the doctors.  I'll be fine.

Doctor Mike

I have a doctor appointment tomorrow in Anchorage so I've been preparing by writing details of my edema in the legs, including measurements and a timeline.  I also have a treatment plan in mind.  It occurred to me that treatment for the past two months has been based on my suggestions and ideas.  I would tell the doctors what I believe is wrong and why, then I would suggest a drug or treatment plan to fix the problem.  Their role has been to say "Sure, that sounds good."  They would write a prescription based on my suggestions.  

I don't pretend to share their medical knowledge of cancer and they are much smarter than I'll ever be but I do know my own situation pretty well by now.  I've been dealing with this illness for so long, it's becoming easy to figure out what's wrong and why.  Next, I have to figure out how to bill the insurance companies for my diagnosis.  The doctors earn over four hundred dollars each time they see me for about ten minutes.  I spend a couple hours preparing for each appointment.  That comes out to $4,800 for my time.  I'll send a bill to myself and submit it to the insurance company for $28,000 for my last five appointments.  They will no doubt, gladly pay me for my time and expertise.  I'll let you know how it turns out.

Back home (again)

The saga goes on.  My current SCCA doctor called to say that my leg problems are probably not a result of GVHD.  The swelling is a side effect of a drug so I quit the drug and am waiting to see if it gets better.  She also said I can return to Alaska and let my local oncologist worry about it.

Since the reunions and doctor visits are over for now, my focus will to shift to one more year of teaching and one more year of encouraging teenagers to work as a group.  They each work on their own instrument and practice their own parts.  Each instrument supports the others, resulting in beautiful music by the group.  Their accomplishment is based on a group effort but the result is overwhelming individual pride.

My goal will be not allowing personal health issues to enter the classroom.  As I approach a point when I can say "I'm healthy," it will become easier each day to pretend there are no health issues, no pains, no sickness and no more side effects.  I look forward to the day of no more pretending.  That day is definitely approaching.  The present will become the past and the recent past will become ancient history.  This difficult part of my life will fade to a distant memory, one that doesn't define me but instead reminds me of the good in life.  I get to encourage teenagers to work hard to be a part of something great, to bring smiles, tears, laughter and pride to their audience and to their parents and most importantly to themselves.