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.

Tuba Christmas Time

The Alaska Tuba Christmas started twenty-one years ago by yours truly and the then commander of the Air Force Band of the Pacific.  The two of us traveled around to various radio stations and played live duets on the radio.  At one radio station, we finished our promotion, then the D.J. asked me if I would play “Happy Birthday” on my tuba.  I didn’t think anything of it, played it and went on my way to the next radio station.  About fifteen years later, somebody asked if the recording of Happy Birthday, performed every day on the radio, was me.  I realized that my version of Happy Birthday was played every day for the past fifteen years as they would do daily birthday announcements.  That’s over five thousand broadcasts of Happy Birthday!!

We started the Anchorage Tuba Christmas with a different conductor each year. It was nice to work with a variety of conducting styles.  The first Tuba Christmas was rehearsed and performed just outside the Alaska Center for the Performing Arts.  That was a bad idea.  We forgot that Alaska in December can be a little cold for brass instruments.  Players were rotating in and out of the lobby to warm up their instruments and unfreeze their valves.  Now, it’s held in the lobby which is a fantastic performance venue.  This will be the first year that I will miss the Alaska Tuba Christmas since it started.

However, I’m now in the Seattle area where there are a lot more tuba players and more Tuba Christmas events.  I may get to play in three Tuba Christmas events this year.  Tacoma is first on December 1.  If I’m allowed to travel as far as Bellingham, the second performance will be in Bellingham (my home town) on December 5.  My college tuba professor is conducting that one.  The third is December 19 in Seattle.

The only unknown is my health during the performance days.  I’d like to attend all three unless I’m feeling weak at the time.  The doctors tell me that as time progresses, my good days will increase.  Hopefully, the 1st, 5th and 19th will be among those.

Misery

I'm not an authority on pain. I don't have vast experience of suffering. So many people are experiencing misery beyond my ability to comprehend. I just woke and cannot sleep due to some flu like symptoms and felt the urge to write down my thoughts with my phone.  Even though my level of suffering pales compared to so many around me I feel like I stood at the edge of the bottomless pit of misery and looked into the blackness.  It's not just death. It's complete loss of hope along with the constant agony of pain and symptoms too numerous to mention.

My glimpse at true misery occurred recently as my condition passed an entire year of treatment. The constant bombardment of sickness for so many months feels like weights pulling me toward that pit.

To be clear, I am not in constant agony though I've tasted it. I haven't given up hope though at times I've wondered if that would be easier. I looked into the pit without falling in. I've had the deepest heartfelt sympathy for the poor souls who have fallen. They're all around me. 

It's impossible to be here for so many months without feeling their pain. For my part at the clinic, the least I can do is offer hope. I use humor to try to make them smile. I tell transplant patients that I'm doing incredibly well which gives them hope for a similar outcome.  I do my best to care and assist when needed. Some people just need to have their pain acknowledged by another person.  I'm not a saint for helping others at the clinic. It would be impossible for anyone in my condition to ignore them and I'm not alone.  Encouragement and kindness are shared from many fellow cancer patients. 

The dominant symbol of encouragement comes from the clinic itself. Every day, hundreds of us flock to the clinic, knowing the drugs will make us more sick. We flock even though they take away our immune system and cause added misery. We flock because with each awful pill or infusion or radiation comes a glimmer of hope. Even in cases where that glimmer is faint, it's everything for some. It's their only chance at climbing out of that pit. The faint glimmer becomes a bright beacon of hope. The hope is not just for survival but for the dream of just feeling normal again. 

I'll read this tomorrow and probably delete it. Writing on a phone while heavily medicated with a headache in middle of the night will probably embarrass a clear minded, daytime self. I need to sleep. 

Missed Another Concert

The all state music groups were hosted at my school this year. The concert was Saturday night. Nine of my students made it into the all state band and two were first chair.  

I asked my doctors about traveling to Alaska for just one day to hear the concert.  They talked about the various infections and complications that could lead to death or lifetime disability if I did make such a trip. Since my immune system is currently compromised, it would be a very dangerous thing to do.  After a day of weighing my options, I decided to play it safe and remain in Seattle.  It was a difficult decision. 

My day to to day health is generally improving. I'll have one or two good days, then a couple bad days (including today). Hopefully the bad days will happen less frequently as the new cells slowly become a part of me.  

As for Thanksgiving, I've been invited to four different homes in the Seattle and Bellingham area.  My doctors have also warned about being around any cold or flu viruses this time of year. Apparently, it could have devastating effects to somebody in my condition.

For a neutropenic patient, I've been somewhat careless in the past so I'm trying to be better at preventing sickness. So many people have invested greatly into my health. It would seem a shame to blow it all for the sake of one evening of visiting friends. 

Music versus Cancer

Things are looking up. I just had a practice session on the rooftop. It's the first since the transplant but instead of actually practicing, I just performed for the birds and construction workers who are on the adjacent building.  

Playing beautiful music on a beautiful instrument is the best therapy ever. For those moments, all of my aches and misery were diminished.  It's seems like the ugliness of my disease can't compete with the beauty of music. 

Day Eleven

It's day eleven. That's eleven days after the second transplant.  There are so many ways to count those days. It's also eleven days of not touching a musical instrument (due to illness), eleven days of being ill in so many ways, eleven days poorer due to medical expenses and eleven days of being away from my home and my job.  That sounds depressing but there is a blinding bright light around the corner. 

The light is there. I can't quite see it yet but I know it's there. Since the transplant, I've noticed a slow but steady improvement.  I'm starting to at least think about practicing and how the world works. I'm imagining a return to a normal and healthy life without three or four medical appointments every day and I'm walking a few blocks without agony. 

All of this is a welcome shift from focusing on illness without a care about anything else.  My thoughts are becoming my own rather than just a reaction to various illnesses. The light around the corner is close, very close. 

Morning Thoughts

I remember waking up and going through my to-dos for the day. There would be a few thoughts about which pieces were to be rehearsed in band and why.  Motivating the students to practice would be most of the battle for the day. The symphony rehearsal that night would come to mind along with the difficult passage that needed some private practice time before the rehearsal. Other more wild thoughts were always there like how to create an extreme low gear linear generator or building a computer numeric controlled lathe. Some thoughts would come to mind about making conducting batons and selecting the most beautiful exotic wood for the handle. 

All of that is gone for now.  I just woke and realized my daily morning thoughts are just a list of questions.  Will I throw up this morning?  Will the almost daily changes in medication change make my nausea worse today?  Do I have a fever?  Is the pain level better or worse than the day before?

My questions are those of a victim. I no longer think about taking control of my own life.  I wait for bad things to happen and hope it's not as bad as yesterday. Knowing each day is a day closer to eventual health is the one positive thought that I force upon myself. It's a progression in time that keeps me motivated to going through another day of feeling miserable. 

I'm sorry for sharing such darkness. I just woke, grabbed my phone and started writing my morning thoughts while still in bed. On the positive side, this is temporary. I'll still smile when I meet other patients today. I'll still go out of the way to help those in walkers and wheelchairs. When asked how I'm doing by passers by, I'll still say "fantastic" as I race to the bathroom to be sick again. It's the truth. Compared to others who are much worse off, my outlook is fantastic. I'll be back. 

Rough Times

I'll admit it. The last four days have beaten me. Since the transplant on Friday, I've been sick in every way imaginable.  No practicing, no projects, no leaving the apartment except for one mad dash to a costume store to support the blog from yesterday.  

It's supposed to get better and I can already feel some improvement.  I'm not going to sign up for the Seattle marathon but I should be in good health within a week. 

Hair!

I was told my hair might come back differently. I guess they were right.....

Thanks Brian!

Done!!

I'm very cold, tired and have a headache.  The only serious thing that could've gone wrong so far didn't. Sometimes people get an initial and severe negative reaction.  So everything is going as well as can be expected.  It's great news. I just need to rest. Thanks again for your support.

So far, so good

 This will be something new. My transplant has another hour or so before it's finished. I'm sending this blog with my phone.  Since my thumbs can cover half the keyboard at a time, please forgive some inevitable typos.  I'm currently in a corner exam room on the fifth floor of the SCCA building.  It's already dark outside but there's lots of activity inside.

The infusion started at 4:20 which was about 50 minutes ago.  Things are going well. They check my blood pressure and temperature every 15 minutes. My son David is sitting at my side in case something goes wrong.  So far, there have been no bad reactions such as fevers, chills or shaking. It feels perfectly normal.  They will continue to monitor my status over the next few days, including the weekend.  I have appointments on both Saturday and Sunday. I was hoping to leave town for the weekend with a hope that they don't notice but I don't think I can get away with it this time.

So far, so good.

No Worries

It’s the night before my busiest day so far.  I have six medical appointments tomorrow, ending with an infusion of stem cells from an unrelated donor.  

I sincerely appreciate the overwhelming support that I received from so many people.  However, I am concerned that many are more worried about this transplant than I am.  Regardless of the statistics, tomorrow will be a busy but somewhat normal day and the days and weeks following will be routine recovery time.  There isn’t a need to worry.  

According to the doctors the most common symptom will be fatigue.  I’ll still do my best at keeping you informed through the blog.  Thanks again for the well wishes and support.

Two Days to Transplant

There are only two days until I receive stem cells from a stranger from somewhere in Europe.  It all happens on Friday and believe me Friday can't come soon enough.  

I'm currently in a dark room on the infusion floor of the Seattle Cancer Care Alliance building. I'm laying down on top of a hospital bed with the infusion pump right behind me, injecting another toxic drug called "Fludarabine". This is part of my preparation for the transplant on Friday. On Friday morning I am scheduled for full body radiation, then the transplant will happen in the afternoon or evening depending on when the cells arrive from Europe. 

All of the pre-transplant treatments are intended to prevent graft versus host disease or GVHD. These treatments reduce or suppress my immune system so my body is less likely to fight the new cells.  

The best I can expect is that I will get a little bit of GVHD. That way, the new stem cells create an immune system that will fight the cancer cells without me getting terribly ill.  The worst case scenario would be getting extremely sick from GVHD. The medical staff would have to drastically suppress my immune system which would open the door to pneumonia and a host of other serious ailments.

Unfortunately, we won’t know how much GVHD I’ll have until about two weeks after the transplant.  I tend to get along with people that I don’t know.  Hopefully my immune system will have the same tolerance while sharing my body with a new immune system from a stranger.

The Cold, Hard Truth

This is the week.  My son, David and I will have a training session today (Sunday) regarding the second transplant scheduled for this coming Friday.  I was asked months ago if I wanted to receive this transplant.  The doctor gave me the numbers or odds of success.  It was daunting to say the least.  Yes, some patients die from the transplant itself.  Others are nearly cured.  Most are somewhere in the middle.  Without it, life expectancy is around three years.

This transplant makes me feel like a game show participant deciding on which door to open, but a brand new car is not hiding behind any of the doors.  Instead, one door is a long term remission (20%), another is probable death within a year(15%), the third door offers a life changing disability, and still another offers life with cancer and further treatment down the road. 

Once I receive the stem cells from a 24 year old donor somewhere in Europe, there’s no going back.  His stem cells will become a part of my genetic makeup.  They will create white blood cells that will hopefully fight the cancer cells.  But they may also go to war with my own good cells and do what white blood cells do best, kill the enemy.  In this case the enemy is me.

So as the doctor was explaining the odds I certainly wasn’t excited or jumping around with anticipation of winning something that I don’t deserve. I would be a terrible (calm) game show participant.  Instead, I gave it a few seconds of thought, then signed several documents, agreeing to go through with it all.  It was literally a “life or death” decision but one that was easy to make.  I choose life.  

Pressing Forward

It’s been a blogless week.  I apologize to those who try to keep up with my blogs.  I won’t allow another pause to go for this long.  I have two bits of news from Seattle Cancer Land.  First of all, I’m growing hair!!  That may not seem too significant but I’m getting tired of covering my head with a baseball cap.  They say the new hair can come in completely different.  It could be curly, a different color or a different texture.  It’s too early to know if I’ll be a red head or sporting curly hair but it’s starting and that’s what matters.

In other news, I had my clinic yesterday.  The past three clinics have brought bad news that my donor had gone away which delays the entire process.  But yesterday was an exception.  The donor (24 year old male from Europe) is still on board so my transplant is still scheduled for November 6.  Chemotherapy and a couple dozen other treatments will start next Monday on the 2nd.  The treatments won’t be a lot of fun but knowing I’m closer to returning to Alaska will make them all worthwhile.  The sooner the treatments and transplant occur, the sooner I’ll get rid of this goofy disease and go on about my life.

As I mentioned before, my time off from medical treatments has been very busy with projects and practicing.  Starting on the 2nd, I’ll be focusing on my treatments again and will be looking forward to putting this all in the past.

Slow times...busy times

My next transplant is scheduled for November 6 so for now, I have very few medical appointments.  They even let the required caregiver (my son) go home so I’m completely alone for a couple of weeks.  Appointments will start again around November 2nd.  My medical team will keep me very busy with a multitude of tests, preparatory chemo and radiation. But until then, I have several projects that are screaming for attention.

These include converting dozens of old cassette tapes to digital.  These are tapes that were at some point converted from reel to reel tape to cassettes.  They are recordings of relatives and friends telling their stories from long ago.  Many of those recorded have since passed on so they are extremely valuable.  I’m also cleaning up old videos and digitizing everything.

As a musician, I enjoy practicing.  I have to keep up my tuba and also practice string bass and banjo. My goal is to become proficient at the banjo and functional at the bass.  I have a long way to travel on both instruments.  

Then there are other projects that tax my brain sometimes too much.  The linear generator project and some others receive attention as often as possible.  When I’m not at the clinic, I spend my day rotating from project to project.  I’ll work on one until I’m sick of it, then practice for a while and move on to another.  I almost look forward to the return of frequent medical treatments so I won’t be so busy.  (Well, almost.)

Lost a Donor - Found Anorher

Well, it happened again.  My second donor went away.  I’ll never know why but my doctors told me it’s either a decision by the donor or he may have not passed a part of the physical.  Whatever the reason, receiving a transplant on October 22nd isn’t going to happen.  That means I’ll be stuck in Seattle for a little longer than expected.

The doctors told me this at the same time they told me that I already have a third donor lined up.  He’s a 24 year old male from Europe.  The new infusion date is set for November 6.  Now my other tests and preparation appointments begin, including another bone marrow pull.  That’s when they drill into my hip bone and pull out core samples of marrow and bone to check on the cancer.  It’s pretty painful but the information obtained is well worth it.  Other big appointments include full body radiation and more chemotherapy.  

My fingers are crossed this time, hoping that this donor will work out.  He’s a perfect match in every way.  One person asked in the comments section if my perfect matches play the tuba.  Even though that wasn’t part of the medical check for compatibility, I will assume that they do.  Since I have hundreds of potential perfect matches, I may be a match with every tuba player in Europe.  Imagine how much beer they drink as a combined group!

Found a Donor

Another donor has been found.  My second transplant was put on hold due to some sort of change from the first donor.  He/she backed out or was found unsuitable after further testing.  Now, another donor has been found and a schedule is in place.  I should receive their stem cells on October 22nd.

Before I receive the new stem cells, there will be a handful of tests and conditioning appointments.  The medical team will further suppress my already weak immune system through chemotherapy and full body radiation.  They do this so my own immune system will not resist the new stem cells.  After time, they will slowly allow my immune system to gain strength, depending on the reaction to the new cells.

The good news is the new donor is a perfect match and I have lots of other potential perfect matches if this one backs out.  In fact, the medical team was amazed that I have hundreds of perfect matches.  Initially, they said there was only an 80% chance of finding a single match.  They didn’t know there would be an entire community with my exact genetic markers.  I still don’t know anything about the donor.  They could be male or female from anywhere in the world.  But the chances are it’s a young male from central or northern Europe.  They look for young males first and Europe has many more registered donors than the U.S.

Eventually, I’ll have a decision to make.  After one year, I can send a message to the donor, asking him/her if they would like to be contacted.  If they agree, I will receive their contact information.  A simple thank you would be the least I could do.  Donors receive nothing for spending a day in the hospital.  They simply agree to help a random person somewhere in the world.  If they are from Europe, they don’t pay anything but if they are from the U.S. it actually costs the donor to sign up for the registry.  For now, I’ll focus on getting healthy.  A decision about contacting my donor can and must wait for a later date.

Cancer Takes and Takes

I’ve been living with cancer for over a year now.  I’ve also been living around cancer patients for the past four months.  I share an apartment building with them.  I go to multiple medical appointments every day where we sit, waiting in the lobby for our appointments to begin.  We talk and share stories.  The first discussion is always about each individual’s experience since arriving at the the Seattle Cancer Care Alliance.  For some, it’s a relatively short story, a little chemotherapy, maybe some radiation and continued maintenance at home. For others, it’s a matter of months to receive a stem cell transplant.  An autologous transplant (using one’s own stem cells) takes about three months.  An allogeneic transplant (using stem cells from a donor) takes about four months.  Most patients are given one or the other of these transplants.

For those with more aggressive cancer, both transplants are warranted.  They require treatment for a full seven months.  Unfortunately, I’m in the seven months treatment plan due to a highly aggressive form of myeloma.  Regardless of the illness or treatment plan, the effect on each patient seems to be radically different.  Some are in wheelchairs, some are with walkers, many use canes to get around and others seem completely mobile.

The most striking difference between cancer patients is how the cancer changes the self-identity of some victims but not of others.  Cancer can be so much more than a biological error of reproducing cells.  It forces each victim to deal with their own perception of self. When we have a cold, we say “I have a cold.”  It doesn’t change who we are.  Cancer patients often say “I AM a cancer victim.”  The sickness can become who we are; a permanent part of our being.  Our identity has changed.  Cancer seems to want everything from its victims.  Side effects from medications are usually a long list of terrible ailments from nasty rashes to diarrhea, nausea, and a lot of just feeling miserable.  The financial cost of cancer is huge.  Even with strong health insurance,  the out of pocket expenses are unreasonable for a middle income patient.  Co-pay for pharmacy expenses alone can be several hundred dollars each month.  Just one of my required twelve daily medications cost $300 per month.   The bills just keep coming.  And to make things worse, most cancer patients are marked with the universal cancer sign for all to see, complete baldness, including eyebrows and eyelashes.  It’s a ruthless disease that will chip away at its victims until there nothing left but an ugly cancer inside a defeated host.

As for me, I feel lucky to have a cancer with a treatment plan with a possible path toward long term remission.  Many are not so fortunate.  I’m also lucky to have so many friends and family who support my every move.  That makes a huge (I can’t emphasize enough how huge) difference.  My attitude of optimism and my sense of humor were not something I invented for myself.  It’s in my genes, thanks to my parents.

So when asked for my story in the waiting room, I let them know that my cancer is a very wicked version of myeloma, that I’m on the ultimate treatment plan for the most severe version of the disease.  But thanks to all of the luck and fortune described in the previous paragraph, I’m able to start my introduction with: “My name is Mike and I HAVE cancer....for now.  I’m on a path toward a cure.”

Missing a Concert

The Chugiak High School Fall Band Concert is tonight.  It feels strange not to be there.  It’s another reminder that this disease takes away a lot more than physical health.  It can easily chip away at one’s identity until it feels as though there's nothing left  but a person with cancer.  I see it all around me.  But I’ll write more on that at a later date.  As for me, I’m still the same person even if the concerts are going on without me.  I’ll return with more life experience and more appreciation of my job, grateful to be teaching young people to make beautiful music.  I know they’ll do well tonight.  Go Mustangs!

Transplant #2 - The Numbers

I met with my new team for the allogeneic stem cell transplant.  That’s a transplant with stem cells from a donor.  As expected at the Seattle Cancer Care Alliance or SCCA, the physician and the rest of the team are top professionals in their field.  The doctor spent over an hour explaining the process of the transplant.  It’s complicated and somewhat dangerous but definitely my best option. 

It’s a game of numbers.  20% of people enjoy long term remission, 15% have severe complications and everyone else falls into the middle of more or less complications following the transplant.  It’s a question of how strongly my own stem cells will resist the new cells from a donor.  Until the transplant has taken place, nobody will know how I will accept the new cells.  

The good news is my potential donors are perfect matches so the odds of resisting the new cells is reduced.  My team is still searching for the best of the potential donors.  The date of the transplant used to be set for October 13.  Now, a new date will be set after a donor is confirmed.  

My plan is to be in the upper 20% and get rid of this awful disease for good.  I’ve been ahead of the curve for all of my treatments so far.  That’s probably because of the dozens of friends who are sending me their positive thoughts and prayers.  Please know that I deeply appreciate the support from so many good friends and family.

More Banjos

My sister, Cathy stopped by my little apartment for dinner tonight.  She helped me cook and she brought her banjo!  I discovered the one thing that sounds better than a 5-string banjo...two 5-string banjos!!!  She’s a very good player and she’s taking lessons.  I expect to see her on stage pretty soon.

In other news, I learned today that my stem cell donor can’t do the procedure.  For whatever reason, I’m without a donor right now but I should have someone lined within a few days.

Cancer is going down

Today is a big day for medical news.  I’ve been anxiously waiting for a report on how much cancer is left.  The last report was more than a couple months ago.  So the news is that the cancer has retreated to the lowest point since it was discovered.  My medical team is very pleased with these results!  My doctor said the chemotherapy that I received about a month ago will continue to reduce it for a couple more months.  

In just two weeks, I’ll receive the donor stem cells which should also fight the cancer cells and even possibly wipe them out for good.  Now that I’m switching from one transplant to another, I also have to switch teams.  My current team (for one more day) is made up of the brightest people I’ve ever met.  They will be missed.  But I’m already hearing about individuals on my next team and the reports are very much the same.  The Seattle Cancer Care Alliance is famous throughout the world for getting results.  I couldn’t be in better hands.

Steroids

Steroids are amazing.  A new drug was added to my long list of pills last week.  I took it for four days and broke out into an upper body rash.  It itches all the time, especially at night.  So yesterday, the doctor gave me a steroid injection, claiming it should get rid of the rash by tomorrow morning.  Well right now is tomorrow morning.  The rash is as bad as ever BUT after two hours of sleep, I’ve done two loads of wash (including ironing), made the bed, cleaned the kitchen, sorted all of my pills, etc.  I’ve done about three days of housework since I gave up trying to sleep at 4:00 am.

I feel like I’ve had twelve cups of coffee but I haven’t had one.  So the steroids didn’t help the rash but they certainly helped to clean things up around here.  I’m going back this morning for another dose.  

In other news, some of the tests that I took yesterday will show exactly how much cancer is left in me after the first stem cell transplant.  There will no doubt be at least some cancer cells in the form of tumors.  That’s why the second transplant is needed.  The results of those tests will be out on Monday.  Hopefully the number of cells will be minimal.

I had better stop writing.  It’s after eight so I can vacuum now without waking up my neighbors.  

Goodbye for now Alaska

Goodbye Alaska.  Hello Seattle.  I had a great week in at home in Alaska.  I visited my school and all band classes and I visited with some friends at an Anchorage Symphony rehearsal.  It was great to be back but now it’s back to business.  For the next four months, I’ll be in the Emerald City undergoing treatment.  I’ll be getting an Allogeneic Stem Cell Transplant.  

When I started treatment in June, I was completely unaware of the number of tests that I would have go through.  They want to make sure that I’m healthy enough to survive the transplant.  Here’s an example.  My actual schedule for tomorrow is:

7:00 am - Blood Draw

7:45 am - RN Assessment, bed 2 (prep for bone marrow procedure)

8:00 am - Bone Marrow Aspiration Procedure (without sedation)

11:30 am - University of Washington Medical Center, treadmill test (after fasting for 12 hours)

3:30 pm - Rose Team Clinic (with my nurse, physician’s assistant and doctor)

4:30 pm - Dressing change (for the hose coming out of my chest)

All of the morning schedule will be while fasting.  I have a date with a pizza at about 2:00.  The blood draw is almost a daily activity.  The bone marrow aspiration is usually under sedation but my schedule won’t allow that.  They drill a hole into my hip to take a sample of my bone marrow.  I’ve done it twice before.  It hurts.  The treadmill test is new for me.  They are going to take pictures of my heart at different levels of relaxation and exhaustion.  The clinic happens at least once each week and the dressing change is also a weekly event.

In other news, I was able to haul my small “F” tuba to Seattle.  I’ve been practicing a loaner from a tuba player in Bellingham.  My sister borrowed a small “Bb” tuba from a friend.  I don’t know the owner but loaning a tuba to me was one of the kindest things anyone has done since I’ve been here.  But now that I have my own tuba, I’ll be able to play loud and bold from the rooftop.  I plan to finish the grueling schedule tomorrow evening with a rooftop recital for the birds and anyone foolish enough to leave their windows open.

North to Alaska!

It’s been a long time since my last blog.  I have been keeping a secret for the past few days.  My doctors gave me a week off from medical visits to go back to Alaska.  I kept it a secret because I wanted to surprise my students with a visit to the advanced band.  I was expecting to say “Hi” and spend a few minutes giving words of encouragement.    Music classes are unique in that a typical student will take the class for four years in a row.  They get to know their teacher and their teacher knows them extremely well.  

I walked into the band room and it was indeed a surprise.  But I wasn’t expecting the spontaneous reception of cheers and applause.  There were some tears and emotional moments.  The reception was also a moving experience for me and it felt so good to see so many bright, smiling familiar faces.  My plan was to offer encouragement to my students but their kind and enthusiastic response made my intentions backfire.  I was the one who was encouraged to rid myself of disease and get back to work.  

I explained that I was done with one transplant and starting another.  We talked for a bit, took some pictures and had a great time just visiting.  But sadly my visit was both a hello and a goodbye.  I’m going back to Seattle for about four months for the next transplant.  Seeing my students was uplifting but saying goodbye again was very difficult.  This experience leaves me with two conclusions that have gone through my head over and over since my cancer was first discovered.

First, cancer is such an awful disease.  Second, even though I was somehow selected to have cancer, it could be a lot worse.  I have a good chance of experiencing long term remission.  As difficult as it is to be in treatment for several months, I’m one of the lucky ones.  And although I miss my students, I will go back to Seattle feeling inspired by their support and the support of all the wonderful people I work with at Chugiak.