Nervous?

Should I be nervous?  My follow up appointments start one week from today.  They're going to do an aggressive search for cancer throughout my body.  They will also check on Graft versus Host Disease and a bunch of other symptoms that could be signs of something terrible.  The results of those tests will no doubt determine how I'll be for the next year or so.  They will most likely determine how long I'll live.

When I look at the possibilities, I know that I should be worried.  I should be nervous of what they might say or at least anxious of what they may find lurking inside my bone marrow.  Instead, I'm content with whatever they throw at me.  If it's great news, I'll celebrate.  If it's bad news, I'll move on to attack it.  Either way, I'll be fine.  

I don't really understand my genuine lack of concern.  It may a blessing or it may a curse but so far I haven't lost any sleep over what they "might" say.  Maybe it's faith in myself or faith in my doctors ability to keep me alive.  It may even be foolish confidence.  Whatever the reason, I'll cross that bridge next week and I will share the news with whoever may be curious.

Nostalgia

Nostalgia, fear, warmth, anger...

Those are some of the very mixed emotions and feelings that I have while preparing to go back to the Seattle Cancer Care Alliance for a one year follow-up appointment.  I'll spend four days reliving the appointments, the blood draws the painful tests and the hundreds of questions regarding my health.  They will ask me to participate in research.  They will make me fast, they will collect bodily waste, they will pull one or two pieces of bone marrow from my hip, they will give me several shots and who knows how many other tests and procedures that they can fit into four days.

My return stirs feelings of nostalgia for a place that was about healing and about life.  Returning also reminds me of the emotions from other patients, particularly the fear of death and the sadness of knowing death is near.  The entire clinic was also about warmth and comfort for those in need.  The medical staff cared deeply about the well being of their patients.  I felt that warmth every day.  And finally, returning to the SCCA reminds me of the constant anger that I felt toward the evil disease that was changing so many lives without mercy and without remorse.

I'm happy return, regardless of the emotional good and the bad.  I should always feel the anger and the sense of fear from other cancer patients.  As I have started a normal life after the treatments, those feelings have unfortunately faded.  I want those feelings to be with me for the rest of my life.  I owe it to other patients and to those who have devoted their lives to fight cancer.  I'll always remember, always allow my body and disease to be studied and I'll always ask, "What can I do to help wipe out this disease?"

Step by step

New discoveries and research of cancer treatments are being constantly introduced.  A question that must run through every cancer patient's mind is, "What new medicines are being introduced?  Is there a cure around the corner."  I certainly asked this of my doctors and so did others who were being treated last Summer.  The answer was always disappointing.  The doctors would list a handful of new treatments and drugs but the results of testing revealed that the improvements were minuscule. 

Three new drugs have recently been released for treatment of multiple myeloma.  The most promising is a drug called ixazomib.  It was tested on patients who have had a relapse after one prior treatment.  But the results of testing show that this drug increases life expectancy for myeloma patients from just 14.7 months to 20.6 months.  

Don't get me wrong, an additional six months of life is a wonderful improvement.  The research and development of this drug probably took years.  Any advancement is a good thing and the people searching for drugs to fight cancer are heroes.  But short of a cure, it's not good enough.  There will some day be a cure for multiple myeloma and all of the other cancers.  That cure exists today.  We just don't yet know what it is.  Until then, people will die, others will suffer.  Cancer will keep devastating families with fear and destruction.  We have to find a cure.  But as my doctors said over and over, it takes time, lots of time.

Who is my donor?

What do you say to someone, a complete stranger from another country, who volunteered to save your life?  My allogeneic transplant happened one year ago on November 6th.  On that date, one year after the transplant, I can send a message to that individual, offering to exchange names and contact information.  If he agrees, it will open the channel for me to contact him and thank him for saving my life.

I know all too well what he went through because I went through it as well.  The first transplant was called an autologous transplant.  It was a reboot of my bone marrow and blood with my own stem cells.  That transplant happen a bit earlier on August 20.  Before I received the transplant, they had to extract stem cells from my blood which is the same procedure my donor volunteered to go through in early November.

The process involves taking a drug that increases the amount of stem cells in the blood.  The drug causes pain in the bones as the stem cells are pulled from the bone marrow.  For some, the pain can be excruciating.  Most of the time, it's a mild pain from the pelvis and areas of high bone density.  The next and final step is to lay in a hospital bed with an full time attendant in the room.  Two IV's, one in each arm circulate blood into a centrifuge machine which extracts the stem cells and return the blood through the other arm.  The patient is required to be completely still for several hours each day and the entire process can take up to four days.

That's what a twenty-four year old male from Europe did to donate stem cells to a fifty-six year old male in the United States.  The two who were selected as donors before this individual either backed out were not compatible for some reason.  I am forever grateful to my medical staff, friends and family and several strangers who offered support in so many ways.  This individual somewhere in Europe donated a part of his body to be a part of mine.  It's an odd feeling that my bone marrow and blood came from another person.  But it's even more remarkable that somebody had enough compassion to give so much to a person they may never meet.  If either of us doesn't want to know the name of the other, we'll remain strangers forever.  My hope is to find out his contact information and start with a simple "Thank you" or "Danke" or "Merci" or "Gracias" or even "Takk."  I'll find out which language to use in less than a month.

I Concede (just a little)

I have to admit it.  Getting back to full health has been a much more difficult road than I ever imagined.  Telling myself and others that I'm "Nearly 100% healthy," doesn't help when I have trouble walking more than a hundred yards, or when my legs decide to buckle after standing for fifteen minutes.  My optimism doesn't correct my vision when I can't read music due to a common eye problem cause by GVHD.  It doesn't help that getting over a simple cold that lasts for nearly a month due to a weak immune system.

I cherish my own resolve to beat cancer.  It has given me strength to fight, confidence to move on and the certainty of eventual health.  Admitting that it has been a tougher road than expected is as far as I'll go in conceding to cancer.  The day I concede more to this disease is the day my life will start a downward slide toward an end.  That will never happen.

By the way, I'm "Nearly 100% healthy!"

Brokaw

Tom Brokaw recently published an Op-Ed article in the New York Times, " Learning to Live With Cancer."

http://www.nytimes.com/2016/10/02/opinion/sunday/tom-brokaw-learning-to-live-with-cancer.html

Mr. Brokaw was diagnosed with multiple myeloma at the age of 73.  He wrote a book about his experience and has been a champion of cancer related charities ever since.  Every version of multiple myeloma is different but much of what he is still going through three years later is similar to the symptoms of others diagnosed with multiple myeloma and even those diagnosed with different versions of cancer.

The only part of his dialog that I can't accept is calling multiple myeloma incurable.  He also said the disease has a current patient lifespan of five years.  No doubt, his information is based on real data but I would argue that all data is old.  There are no statistics for individuals who were just diagnosed with this disease.  The statistics are not even out for those who picked up the disease three years ago. Simply put, they haven't died yet.  Those statistics are based on measuring death rates.

I respect Mr. Brokaw's writing.  He shared something deeply personal which can only result in more public awareness and hopefully help to advance a cure.  He has lived a life of truth and integrity.  He may be one of the most respected individuals in the country.

Mr. Brokaw said he is tempted to identify himself as a "Cancer Patient" as well a "Journalist."  I understand his changing identity but if I were to see him some day, I would encourage him to identify himself as a journalist and someone who may very well beat cancer.  Decades from now, when Mr. Brokaw eventually passes away, his part in the medical statistics will be that of a cured multiple myeloma patient.  I know that will be my role as well.

Another sad day

I noticed another Anchorage teacher just recently passed away due to cancer.  I didn't know her but she was very young, a teacher of high school students for just two or three years.  I noticed my reaction to this sort of tragedy has changed dramatically over the past two years.  We all mourn at the passing of someone, especially somebody so young who should be looking forward to a long and wonderful life.  Everyone is saddened by such a tragedy.  Everyone asks why?

I've met cancer face to face, spent day after day, week after week and even worse, minute by minute suffering due to this filthy disease.  I tried to match each minute of pain with my own minute of adamant defiance and a vow to beat my cancer and take back my body and my life.  At times, my struggle seemed to go on without an end in sight.  The attacks were relentless without any sign of weakness in my enemy.  My battle was and still is deeply personal.

When a young, beautiful person is taken, I feel a visceral hatred and even anger to an enemy that I know all too well.  For all of us, it's a very sad day.  For me, it's also a loss to an adversary who represents an unmerciful evil, an evil against all of us.  Someday, we'll beat cancer completely.  Until then, it will hurt as many of us as possible, young and old, no mercy.  My dream is to grab cancer by the throat, and put an end to it's miserable life.  It will happen, just not soon enough.

Lollipop?

The details for the next Seattle Cancer Care Alliance appointment are beginning to fall in place.  Since I had two transplants and the second was the big one, the date of that transplant is a very important day to remember.  The next appointment is meant to fall on the first year anniversary of that date.  They call it a birthday.  It's the day I took on the stem cells of a total stranger and eventually accepted his bone marrow and blood as well.  November 6, 2015 was the day of my allogeneic transplant.

The follow-up appointment will last four days starting on November 7.  I know they will pull some more bone marrow from my hip.  This will be the eighth time for that procedure.  They will poke around, looking for problems and hopefully not finding anything.  On the last day, before I race back to Alaska for an evening symphony rehearsal, they plan to give me a redo of my immunization shots.  Since I have new blood, all immunity shots went away with my former blood.  The last time I received those shots, I remember receiving  a sugar cube and a lollipop.  I may be setting my hopes too high but I firmly believe going through a stem cell transplant and getting sick for several month due of the transplant deserves another lollipop.  We'll see.

Good News!

The oncologist appointment on Monday was in part intended to reveal the MRI results.  Specifically, is there a tumor on a rib in my back?  For some reason, the MRI didn't take pictures of the ribs in my back.  Instead, it did a full scan of my spine, which I'm glad to say doesn't have a tumor.  Regardless of the lack of information, I'm not worried.  The pain has finally reduced this week and tumors only get bigger and cause more pain so I don't have a tumor.

In other news, the doctor also gave me results of a monoclonal spike test.  It measures cancer in the blood.  When I started this process almost two years ago, the score was about 7.8 which is pretty high.   A few months of chemotherapy in Anchorage brought it down to 2.6 but it would not go down any further.  The first stem cell transplant reduced it to 0.2.  Last June, it was 0.1 and now, it's 0.0!!

Getting zero on a test score has been something I have feared for all of my life.  Getting zero on this test is best news I've had in months.

Dreams

I just woke up, dreaming of living in the small apartment in Seattle again.  The foggy dream was full of despair and even fear.  It was about sickness, misery and finally, hope.  The dream showed people passing away from the same illness as mine.  I once again felt the pressure of the dark side of cancer, insisting that I give in and allow it to completely take over my body and soul.  

Then, as before, I also felt the same comforting hope with an absolute certainty that I would survive.  That hope was my security during treatment.  It kept me positive and it may have kept me alive.  I viewed all of the sickness, all of the pain and all of the relentless nausea as a temporary delay to achieving full health.

I understand why these dreams are coming back.  My temporary sickness is just a cold or flu but for some reason, it seems much worse than it used to feel.  It involves shaking from extreme chills, followed by a high fever, popping in the chest and other standard symptoms.  This isn't really worth reporting but for some reason, the cancer doctors would send me to the hospital if they knew of my current condition.  I'm also faced with the question of a possible tumor on a rib in my back.  That explains the "fear" part of the dream.  I'll see the MRI results on Monday.

I suppose that my current high fever makes me somewhat delirious and therefore not responsible for my own actions or words.  I should take advantage of that by emailing people to tell them what I really think.  But it's almost 4:00 am.  I'll let the security of hope and the positive energy of my own resilience put me back to sleep like a warm quilt and a hot tea on a cold evening.

Retirement?

I believe this will be my last year of teaching.  

After thirty-five years in a field where perfection or even true mastery is just an imaginary and unobtainable goal, it may be time to try something else.  I thought I would have it down by now and retirement would happen after it becomes old hat.  The truth is, I'll never be satisfied with my own job as a teacher and I'll never reach a level where I can't improve.  Those who think they have reached that level are wrong.

Energy is still an issue for me.  Fatigue after a day of working with students and trying to connect in a way that is meaningful is still my greatest health issue.  They say my body is still getting used to having new blood from a stranger.  It is supposed to sap energy and cause all kinds of illness.  The illnesses are fading but the energy issue is something that I can't seem to beat.  

In spite of these depressing thoughts, I feel extremely lucky to be alive.  I'm still looking forward to the certainty that I will be completely cured of myeloma.  I've worried about sickness for too long. 

Steiner Celebration of Life

The celebration of life for Carl Steiner was just posted.  It will be Friday, October 21 at the Deming Log Show.  I will hopefully be able to attend and combine my trip with appointments at the Seattle Cancer Care Alliance.

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.

Doctor's Choice

I've gone through two doctor appointment and two family reunions since my recent visit to Washington State.  I'll call the doctor tomorrow to see if I can go home.  Since my condition is unchanged and they thought the GVHD problems would be gone by now, I fear they will want to see me again.  I guess I'll know tomorrow.

Great friends, great relatives, pretty good health...

Dignity

I've been to the Seattle Cancer Care Alliance a few times over the past two weeks.  They're trying to stop the Graft versus Host Disease that seems to be advancing. Visiting that building again brought back memories of being terribly sick, of facing dark demons and forcing myself to fight with every once of strength I could muster.  The victory was not without loss.

The strange thing is, I felt great walking into the blood draw waiting room.  Seeng the other patients brought back feelings of the tremendous care that is passed around from the staff as well as from other patients. 

I was especially struck by one lady who walked up to the front desk to check in. She was bald but wore a cap. She had all the signs of a cancer patient who was in pain. Her step was slow with determination. She had every right to wonder why she was struck with such a miserable disease and to believe her suffering was an unfair attack on her soul.  Seeing her made me selfishly think of my own agony a few months earlier.  Then she blew my mind as she approached the desk. 

She raised her head, gave a big smile and said "Hi Robert. How was your weekend?"  She pushed him to tell her all about it.  Not once did she dwell on herself or mention how she was doing.  She kept the smile going throughout the conversation, then with the utmost dignity, she painfully walked to her seat and waited for her turn.  That's the spirit of a healthy person, illness or not.

Leg Explosion

It has been a while since the last blog.  I attended a family reunion for the past three days at Maple Falls, Washington, near the foothills of Mt. Baker.  It was a great event, seeing and visiting with cousins and relatives from my mother's side.  It was a reunion for the German family who grew up in Maple Falls on a small ranch between Black Mountain and Red Mountain.  There was no cell phone coverage in the area so I was unable to send a blog earlier than today.

As far as health issues from the cancer treatment, there is some news.  As reported earlier, my lower legs and feet have been swelling.  A week ago the doctor moved some drugs around and said it would get a lot better.  It's getting much worse.  If my skin stretches any further, I imagine it will explode like the Frenchman in the Monty Python movie.  I have to go back to the Seattle Cancer Care Alliance this week.  Who knows what the new treatment will be.  I'll post it as it happens.

"Get your affairs in order"

After a full week of trying to get an appointment at the SCCA, they finally committed to a day and time. It's not that they don't want to see me, they are just very full and having trouble finding a time to meet on relatively short notice.  As it turns out, they will check on my leg and feet issue this Monday.  

Since my time with myeloma is pretty much finished, I have enjoyed writing down some memories of the experience.  Over the past year and a half, I have kept notes about the good times and difficult moments.  The blog has also been revealing as a record of the ordeal.  As I read through my notes, I found that the most frightening moment throughout the entire sickness was the initial discovery of cancer.  The diagnosis was correct but the details regarding the odds of survival were incorrect.  It was an attack on my physical and emotional self.  I was unprepared.  My usual arsenal of optimism and certainty of survival was not ready for use.  I was ambushed while unarmed. 

As I wrote the details of the initial diagnosis, the story plays out like an essay for a high school English class.  I apologize for that.  It's just the way I write, probably due to instruction from a high school English teacher.


These are my notes and memories of that day...

The rehearsal was just twelve miles away on a snowy highway, a drive that thousands of commuters took every day to arrive in downtown Anchorage, Alaska.  I drove into town to practice for the annual “Holiday Pops” concert by the Anchorage Concert Chorus.  As the tuba player for the Holiday Pops Orchestra as well as the Anchorage Symphony, hauling my tuba around is a curse of playing such a large instrument, but I wouldn’t trade it for any other.  It’s simply the most beautiful sounding instrument in the world and getting a little exercise by transporting it is well worth the effort.  But this time, it was different.  

The pain in my right shoulder was growing each day.  Weeks earlier, lifting the tuba out of my car and into the concert hall was becoming painful.  Now, it wasn’t just painful, it was nearly impossible.  Asking for help should not have been an issue but I was ashamed that I could no longer lift my own instrument.  I was forced to ask a trumpet player friend to lift my instrument out of my car.  While on stage, I managed to get the tuba on my lap but it wouldn’t be long before that would also become too difficult.

I had been to a doctor a month earlier and she believed the pain was from a blood clot that had since vanished.  “The pain should go away with time,” she said.  At the time, I felt silly seeing a doctor without good reason, so I waited another month before admitting to myself that whatever was wrong wasn’t going away.  I knew I couldn’t go on like this.  The shoulder pain was excruciating.  I had to go back.

The appointment was set up with a different doctor at the same clinic.  After a short exam he said he suspects he knows what is going on but would need to do an X-ray first.  After a simple chest X-ray, he came into the room with a long face and sympathetic eyes.  He didn’t delay, he simply told me that I had a large tumor surrounding my third rib in my right shoulder.  After inviting me into his office where I could see the x-ray on his computer, I was baffled by the image.  There seemed to be a piece of bone missing from the middle of my third rib on the right side. The tumor had eaten away much of the bone.  

Having an active tumor caused considerable concern but more than anything, this new medical issue brought up several questions.  I wondered, would the treatment involve radiation?  Would it be a treatment that would interfere with my daily routine or could it be taken care of within a short time frame?  Would the damaged rib eventually heal?  My concerns were serious but I was still certain there was a solution that would eventually end well.  My brief optimism and curiosity about treatment was obliterated by the doctor's next statement.  His words would remain, echoing in my head for the rest of my life.  “I believe you have multiple myeloma or bone marrow cancer.  You should get your affairs in order. You probably have one to three years...three years, maximum."  

I went to the doctor with a pain in my shoulder.  I left his office with terminal cancer.  I was in no way prepared for the shock of knowing I was dying.  The pain in the shoulder was serious but cancer, let alone, terminal cancer wasn’t on my radar.  I was bewildered and saddened by the news.  I didn’t know how to react or how to respond.  I have always been an optimist for all things.  There has always been a way to beat the odds or to overcome obstacles.  This time, it was different.  The doctor said it was terminal.  He didn’t offer hope or even a remote chance of beating this cancer.  I was completely stripped of my usual positive outlook.  There was no hope.  I was going to die from a disease that I knew nothing about.

The next Holiday Concert Chorus rehearsal was just three hours later.  The same friend had to lift my tuba out of the car and up the stairs for me.  The doctor's words kept replaying in my mind. "One to three years..."  I didn't tell anyone.  I was still numb, "One to three years..."

While sitting in the rehearsal and listening to the string section go over a difficult part, my thoughts raced back and forth without focus or purpose.  I thought about my childhood and the wonderful life that I had taken for granted.  Even though I was the youngest of four children, it looked like I would be the first to leave, the first to die.  My dad passed away a few years ago but my mother who was 86 would be completely devastated.  I was afraid she would fade quickly when she finds out that her youngest was dying.  

I also worried about preparing for death so that my family would not be burdened by the tasks that lie ahead.  I again thought about my childhood.  I was lucky to have lived such a diverse and interesting life.  Maybe it was time and I should just accept it.  If I could fight it, I would with all my might but the doctor’s prognosis was that of terminal cancer.  Three years would be my maximum life expectancy, probably less.  I was confused and a dark sadness gently took over my entire being.  During a prolonged section rehearsal with the singers, I tried to remember some of my fondest memories as a young boy.  It was a feeling of being cared for and belonging to a group of loggers who I worshipped more than any superhero.  It was a feeling of being completely free and happy.  I remembered when I could fly.

Back at the SCCA

LTFU
That's the name of my current group at the SCCA.  I started with the "Rose" team for the first transplant.  The "Yellow" team was next for transplant number two.  Now I visit the "Long Term Follow Up" team or group.  They deal with previous patients who have undergone transplants of any sort.  It's still an impressive group of doctors and nurses.  They rotate from LTFU to one of the other current treatment teams every few months.

My current health is fantastic but I probably have another GVHD symptom.  My legs and feet are swollen and sore.  They say it's probably due to the immune system fighting with my body.  Treatment will likely be increasing the immune suppressant drugs or maybe taking a steroid again.  Although I feel great, I don't want this to continue to the point where I become immobile.  I enjoy popping wheelies in a wheelchair but I would rather not be forced to use one for the rest of my life.

Seattle is great this year.  Unlike last year, with scorching temperatures and virtually no rain for the entire Summer, this year is more typical for Seattle.  It's usually about 70 degrees with occasional rain.  I like the rain and I enjoy Seattle but I'd rather go through a third transplant than drive in this traffic every day.

For now I'm just waiting to hear from the doctor.  Maybe I'll walk to one of the four Starbucks that are all within two blocks from my hotel.

Setback? Not today!

The freezer is full of fish.  The smoker has been going for six days straight.  My cancer scores are very near zero.  Muscular strength is building with each day.  A long fight with a dreadful disease is very near an end.  An eventual cure is still a certainty.

Dr. Google says the latest development of swollen and sore ankles and legs could be a sign of something serious for a post-transplant patient.  I say, the cancer was a bump on the road.  This symptom is just a pebble on that bump.  I won't ignore it but it's certainly not going to change my outlook.  I plan to end this journey with better health than I've had for several years.

Dipnetting the Copper River

We made it to the Copper River.  My son, David and I drove for five hours, planning to camp for the night.  Instead of camping, the charter boat offered to take us out at 5:30 pm to spend the night dipnetting so we went for it.  We fished until 5:30 the next morning, did okay with sixty-five sockeye.  David also netted three kings but he had to return them to the river since they are no longer in season.

The area we fished was a slippery rock bluff so we tied ourselves to a tree for much of the time.  At about 1:00 am, the natural light diminished to a feeling that dusk had just set in.  Within a couple hours, the sun had started to light the area and our exhaustion would vanish with each new catch.  Since my strength is reduced due to the transplants, David eventually did all of the catching and I just transported each fish from his location to a set of stringers a few feet away.  The challenge was climbing around the rocks without feeling in my feet due to neuropathy.  I had to look at each rock ledge and watch each foot placement.  A simple slip on the wet rock would have meant a tumble into the river.  In the past, many people have fallen and almost none have survived.

Moving around was a challenge but well worth it.  Sixty-five salmon will make a lot of meals.  It's the one activity that I will truly miss if I ever move out of Alaska.

David at the Copper River