Humility

We were all children once. We depended on others to feed us, clothe us and provide the basic necessities of life. But at some point, we grew up and provided for others. Parents of children and pets, teachers, caregivers and all responsible adults have a natural need to protect children and to be providers, no matter the cost. It's the natural circle of life. 

I am a provider, not one who needs help. My role in life is to take care of the people near me, not to be taken care of. At least that was my identity for the past 45 years. Today, I'm having an identity crisis because, for the first time in my life, a community of friends, family and even strangers are reaching out to me with offers of help.  It's extremely uncomfortable and at the same time reminds me that I'm not alone in the world. 

My daughter just put up a "gofundme" page since I'm deeply in debt due to medical and housing bills.  She said people want to help. After spending a lifetime of teaching and helping young people to discover who they can be, reversing the role and letting others help me is the most difficult part of my entire journey with cancer. 

I've been analyzing my discomfort and trying to cope with accepting financial help. My brain knows it makes sense but the rest of me cringes each time I hear about a donation to help this old band teacher who should be able to take care of himself.  It may be a result of simple pride or even arrogance.  I'm not supposed to admit that I can't afford to pay my own bills.  I'm very torn. 

The only clarity that I can claim is that I am deeply humbled and yes, grateful that anyone would care enough to offer help. The fact that so many are coming to my aid reminds me that I live in a world of like minded and responsible adults.  When I am no longer sick from cancer and start teaching again this Spring, I'll have one more life lesson in my teaching arsenal. It's something I haven't had to face since I was a child and I'll admit that it hurts more than full body radiation.   It's simple humility. 

Door Decoration Results

Several people have asked if if I won the door decoration prize. Apparently this is a big deal in this building. I was told that everyone got a prize for their door decoration.  That is, everyone except me. 

There were about twenty entries but they would not announce an overall winner. So in the true spirit of Christmas I hired a famous art critic (my daughter in law) to pick an overall winner. I was so humbled by the results...

Merry Christmas

Merry Christmas everyone! I'll admit that I have never looked forward to Christmas. It's about the hectic scramble to buy enough gifts for everyone, the worry that someone may have been given the wrong gift and the guilt that so many can't afford a Christmas for their children.

As with everything in my current life, Christmas was very different this year.  My son Benny, his wife, Greer and my daughter, Sarah came to Seattle just to visit. My son David left not long ago after a month long visit.  We visited their grandmothers and they prepared fantastic food. 

Christmas has always been about the children.  This year, they made Christmas about their dad, (me). They have all given me more support than I deserve. So have my friends and family as well my students  who are really just younger friends. It's been a wonderful Christmas. I hope the same for everyone. 

Merry Christmas 

Door Decorations

Tomorrow is the big day. There is a door decorating contest in my apartment building. After hours of planning, collecting materials and finally decorating, I have the perfect Christmas door decoration. I'm certain I'll win. What do you think?

not mine 

also not mine

are you kidding, not mine

Yes, there it is!  Apt # 305, home sweet home and the sure winner for 2015!!

Here is a close up so you can see more of the artistic detail.  Merry Christmas!

One Year...

Today marks exactly one year since I was officially diagnosed with multiple myeloma.  I was having a lot of pain in my right shoulder.  I finally went to the doctor in November. She said it was probably related to my deep vein thrombosis and since I was on blood thinning medication, it would clear up on its own. 

By mid-December, I couldn't lift my tuba at all. I still played for all of the holiday orchestras but it was difficult. I went back to a different doctor at the same clinic. This time, he did a simple X-ray and discovered a large tumor that surrounded my third rib in my right shoulder. He guessed the disease correctly but he wasn't up to date regarding treatment for this disease. He left me with words I'll never forget. "You should get your affairs in order. You probably have one to three years.  Three years is your maximum life expectancy"

I went to a Holiday Concert Chorus rehearsal a couple hours later. A 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 yet. I was still a bit numb, "One to three years..."

The next day, I made an appointment with an oncologist. They would see me on December 18th. It was just two days after the initial diagnosis.  It may have been the longest two days of my life, two days of teaching school, finishing gigs and preparing for Christmas.  I shared the news with my closest friends and family.  I had so many questions.  Should I quit my teaching job right now so the students don't see me getting sicker with each day?  Should I start selling off my lathes and tubas so my family isn't burdened with that task?  How will I explain this to my extended family?  How can I ever tell my mother?  All of this would at least have to wait until I saw the oncologist on December 18.  

The waiting room at the oncologist's office was full.  Some were bald, some had the look of lost hope, some were countering that negative energy with a cheerful attitude.  I was simply numb.  I remember thinking the same questions over and over.  Am I now a terminally ill cancer patient?  Is this my new identity?  Will I be thought of as a cancer victim until I die in one or two or maybe three years?  What will I do with the rest of my short life?

The regular oncologist was on vacation.  My doctor was an elderly, retired gentleman who would fly to Alaska to fill in now and then.  He said he enjoyed going to Alaska and his wife enjoyed the money.  He confirmed that I did in fact have multiple myeloma.  So far, everything the doctor from two days earlier told me was correct.  It was indeed bone marrow cancer.  He explained the disease with such gentlemanly grace and kindness, but he was also confirming my greatest fear, I did in fact have cancer.  The doctor's skill in explaining the disease without sounding alarming was obviously practiced over a lifetime of telling people this news, essentially telling people to "Get their affairs in order”.  That's what made his outburst two minutes later a bit shocking. 

I followed up with a question about the prognosis by the physician from a couple days earlier.  I asked, "The previous doctor gave me a year with a maximum of three years.  Does that sound about right to you?" His reaction both frightened me and made me want to hug him.  He turned red in the face, threw down his clipboard and yelled for the entire floor to hear, "That's bullshit!"  

This immediate visceral reaction came from a physician who had been a calm professional for over forty years.  It also came from a man who cared so deeply about the suffering around him that he felt their pain.  I tried with all my might to show no pain but he knew I had been living with that prognosis.  He knew the hurt and turmoil that was racing through my brain.  The good doctor then explained why multiple myeloma patients are living with the disease for many years and that some are even nearly cured by living many years in long term remission.  He showed me charts and graphs of life expectancy and how they have changed for the better over the years.  The prognosis of one to three years to live was both old news and for patients who were much older than I am.  

Of course, I took all of this in with the appearance of an interested student who is receiving a lecture from a college professor.  I remember saying meaningless statements like, "That's fascinating" or "Oh yes, I understand" but the most vivid memory from one year ago was the thought that kept repeating through my mind.  It started as a faint whisper but would get louder in my mind each time it was repeated, 'I'm going to live, I'm going to live, I'm going to live!'

As I left his office, I thanked him for his time and care, and for giving me a modern version of what I was up against.  I was hiding my desire to give him a big hug as well as everyone else in my path. 

Unfortunately, my cheerful attitude was temporary.  As I left through the lobby and saw once again the eyes of those who had lost all hope, I felt an overwhelming guilt.  Those were my eyes just one hour earlier.  Their prognosis of terminal cancer was not a mistake. Why them?  They're people with hopes and dreams just like me. They're just like all of us.  It's true that I will live through cancer but that's not enough.  One day, everyone with cancer will be able to say "I'm going to live." Until then, I'll quietly go on with my life (maybe not that quietly) and I will always remember how I felt after being diagnosed as terminally ill each time another friend or relative passes on from this ugly disease. 

Blood Cell Takeover

The second transplant on November 6th was a donor transplant from a 24 year old, European male. I was under the impression that the end result would be a mix of his and my blood cells but that's not the case. The medical staff has engineered my body to accept the new stem cells to take over completely. Eventually, 100% of my blood cells and immune system will be from the donor. 

There are three moments in time when they pull some of my bone marrow to test the progress of the blood cell takeover. This happens at day 28, 56 and 84 of the transplant. So far I have had one bone marrow aspiration on day 28. The goal at that stage is for the donor cells to be at 50% of the total. At 28 days, my donor cells made up 85% of the total which was a statistic that pleased my doctors very much. 

None of this looks very significant on paper but it is. The decision to go ahead with the second transplant comes with significant risk of terrible side effects including death but also gives hope of a near cure.  With each test that meets or exceeds expectations and with each morning that I wake up without a terrible rash or other signs of Graft versus Host Disease, my odds improve. That means this latest test result offers less chance of complications and more chance of going into long term remission.  

I'm certainly not out of the woods yet. Since today is day forty of a hundred day journey, 60% of my trip through the woods is still unknown. By the way, I enjoy the "woods" analogy. I grew up running and climbing the forests next to logging camps. I love the woods!  The next test on day 56 will happen around New Years Day. I can't wait! If it's good news, I'll celebrate. If it's bad news, I'll trust my medical team to fix it. Either way, I come out a winner!

Engraftment

Before I ever arrived in Seattle for treatment I would have guessed the word “engraftment” had several meanings.  It could be a project in an advanced calculus class.  It could also be a verb that describes the flowery designs made with a bunch of plastic gears and a pencil and paper.  It could even be the act of trying to get used to the habits of the ASD superintendent.  (His name is Mr. Graff.)

Now that I’ve been through two stem cell transplants, I understand a completely different meaning.  It happens after the new stem cells have planted themselves into my bone marrow.  Engraftment is when those stem cells start pumping out new blood cells.  That’s what I’m going through right now.  It’s usually not a big deal, but for some odd reason, my body reacts with what they are calling “Engraftment Syndrome.”  It gives me a slight fever and a headache.  By itself, I would say “So what??”  I have a slight fever and a headache but life goes on.  At least a dozen side effects are much worse.

But while under the care of physicians who do transplants for a living, a slight fever earns a patient an immediate trip to the hospital.  During my first transplant, I spent weeks in the hospital on three separate occasions with nothing more than a slight fever and a headache.  Each day I would plead my case to leave the hospital.  I would walk three miles which equates to thirty-three laps around the transplant wing of the hospital.  I would try to act as healthy as possible for the doctors and nurses.  If there were more room, I would have done my former parallel bars gymnastics routine but it was all useless.  They would just stick a thermometer in my mouth and ten seconds later decide that my scorching temperature of 100.5 was enough to keep me there one more night.  This went on day after day after day.

So my goal for transplant number two is to stay out of the hospital.  I’ve already had two close calls.  I even admitted to a night nurse that my temperature was up but I argued like a debate champion that my white blood cell count was high enough to fight off what could be a potential blood disease.  After some checking of my blood counts and a consultation with the night doctor, they accepted my case and let me stay in the apartment.  

I had to make about fifteen promises first.  Yes, I would call if my temperature goes up any more, yes I would call if I start feeling dizzy, yes I would call if my big toe.....  You get the idea.  Then I realized, I was finally speaking the language of a stem cell transplant doctor.  I know what to say to make them happy and that makes me very happy.  It’s a small victory but I’m certain I slept with a smile that night.  

Caregivers

To this date I've been in Seattle for 181 days. There should be just 68 days left before I can go home. That's a total of 249 days or roughly 8 months.

I could look at it as eight months of battling a disease but that's just not how I see it. Instead, it's eight months of receiving overwhelming support from friends, relatives and even strangers. A day doesn't go by without an email or a card or a phone call wishing me the best and encouraging a full recovery.  These gestures of kindness are more important to me than I can express in words.

The greatest form of support has been from my caregivers. I am required to have a caregiver with me at all times. They live in my little apartment, they go to clinics with me, they keep track of medicines and appointments and harass me when I am not obeying the doctors.

They do all this without expectations of payback. Their work is mostly unnoticed except by myself but I'll admit that they unintentionally place a great burden on my shoulders. How could I ever thank them for their sacrifice?  Although I carry this burden of guilt, I know that my payment to each caregiver is to simply get better.  

So for my caregivers as well as the hundreds of people who have reached out, and for myself, I AM getting better.  I feel it every day. There are only 68 days left. I'm coming home!

I AM

I AM the proud son of a logger. I am a tuba player. I am a teacher.  I am a musician. I am a wood turner. I am a commercial fisherman. I am so many things but I refuse to share my identity with a disease. I AM NOT a cancer victim. I do have cancer for now but not forever. 

Tuba Christmas in Tacoma

It was a pleasure to attend Tuba Christmas in Tacoma. There were about thirty performers and a very good sized audience. I was especially happy to play along side my caregiver and son, David. He's a superb musician.  His perfect timing and pitch kept me honest for the evening. I was glad I attended but there was a cancer side to what should have been just a simple good time of playing carols. 

This was the first time since I knew I had cancer that I stepped into a room full of complete strangers. They were very polite and accepting people so they were glad to welcome the newcomers. 

I had the following short conversation on three separate occasions. "So where are you from?" they would ask.  "Alaska," I would answer proudly. They would usually smile and all of them would then ask the bombshell question, "What brings you to this area?"  My brain would go into semi-panic mode, fearful of their reaction to the truth. I would soften my answer by saying "I'm staying near the Seattle Cancer Care Alliance for treatment."  They would return a confused look so I would have to spill the beans completely and say "I have bone marrow cancer."  

With that statement, they returned a horrified look. They deeply regretted asking such a perfectly normal question of "What brings you to Seattle?"  They were now embarrassed and wishing to get away from the conversation and me as quickly as possible. In their mind, they were talking to a cheerful and smiling corpse.    

I too was embarrassed to witness their discomfort so my next mission was to try to ease the awkward moment by downplaying the seriousness of my cancer.  "It's really not so bad. It will be cured within a couple months,"  I would explain.  My true urge was to grab them by the collar and yell "I'm not got to die from cancer!"  

The conversations all ended with same type of statement. They would say, "You have such a great attitude."  The underlying tone finished that sentence with "for a person who won't be with us much longer."  No matter how hard I tried, convincing them that I would survive this ordeal was futile.  The belief that cancer nearly always takes away lives is engrained in our psyche. After we have all experienced a lifetime of repeated defeats to this disease, it's difficult to truly believe that a different outcome will soon be the norm. 

The cure for cancer is still a distant dream but for now, humanity is gaining momentum in this fight. Today, there are thousands of individuals surviving cancer who would not have survived just ten years ago. As the disease outcomes change for the better, so will our fears and belief in survival. 

I'm certain that in ten years from now, those painfully awkward conversations will sound more like this. "I have cancer."  The stranger will answer, "Oh, good luck with that. So what's it like living in Alaska and what kind tuba are you playing?"  This time, there isn't an unsaid, underlying thought. It will be the norm to beat cancer.  It will be the norm to be no longer afraid.