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