New Tats!

Good news, my radiation will start on Monday.  I might make it back to Alaska by Valentine’s Day after all.  I think the medical staff is getting tired of scolding me so they’re finally getting me out of here pretty soon.

Tomorrow, I have another bone marrow aspiration.  That’s the one that hurts a lot when they pull a chunk of bone marrow out of my hip.  I’m going soft now, this will be my sixth aspiration but the first one with sedation.  They said they will give me a lollipop for the sedation.  I’m not sure if they thought I was coming from the pediatric wing but I’d love a lollipop.  I may ask if I can get a cool sticker for my lunchbox while they’re at it.

In other news, I just got some tats!  That’s right, my first tattoos and my insurance company is paying the bill.  How could it get any better than that??  The tats aren’t very artistic yet.  They consist of three tiny dots, one in the middle of my chest and one on each side of my chest.  It’s for radiation alignment.  As soon as I got the tattoos, I had a strong urge to write a rap song.  So far, it goes like this...

“Yo, yo, yo....”

The rest of it will come, I’m sure.  Maybe I need more tattoos first.

In Trouble Again

Don’t worry, the treatments are going great.  The cancer numbers are near zero and I’m not currently sick.  The trouble I’m in has to do with my Nurse and Physician’s Assistant.  They are both extremely competent and caring providers.  They know every aspect of my treatment and seem to care deeply that I make a full recovery.  But it seems that nearly every time I have a clinic, I get in trouble with them.  It’s always about the same thing, I don’t call in to triage with every little health issue.  This time, they asked me the usual thirty questions, “Have you had a fever, are your feet bloating, do you have a rash, have you had nausea,” etc.  I’m always mostly honest.  The answers are, “No, no, no with an occasional yes.”  This time I let them know about my vomiting marathon on Saturday.

I said “I did vomit on Saturday.”  “More than once?” asked the PA.  I replied a simple “Yes.”  “How many times?” she wanted to know.  “About fifteen,” I answered.  At this point I braced for what I knew would happen next but I was ready with the best comeback ever.  “Did you call triage?”  she asked sternly.  I proudly answered with a “Yes,” expecting to get praise for the first time when this question was asked.  But they’re smart, very smart and whenever I’m in their presence, I’m not so much.  

Her next question was simply “When?”  At this point, I knew I was beaten again.  The finger wagging would begin as soon as I answered that question, and did it ever.  My voice cracked like a first grader who just got caught with a frog in his pocket.  “Sunday,” I said.  

Yes, I called the day AFTER I was sick.  The scolding that followed was stronger than that of my three previous appointments.  If I had called during the sickness, they would have told me to go directly to the hospital.  Every time I’ve been to the hospital, they keep me there with their ridiculous hospital gowns for days and sometimes weeks.  Since I did make the call, even though it was late, I asked for half credit for at least calling at some point.  They were not willing to concede that I did anything right at all.  

The truth is, as they have explained over and over, as a transplant patient getting sick with a fever or vomiting can be a symptom of something very serious.  In some cases, the results could be fatal.  I promised to do better in the future and I will.  However, I’m certain they won’t believe me until it actually happens.

Cousins

I’m lucky to have a huge family.  With well over forty cousins, I never know when I meet a new person if they might be related to me.  As it turns out, there are three cousins living in the apartment that I’m staying in right now.  One is my first cousin on my dad’s side and the other is a Martinson by marriage to a cousin once removed.  This building is reserved for cancer patients who may be candidates for a stem cell transplant so the odds of three cousins in the same building in Seattle are still pretty remote.  What’s more is the first cousin also plays banjo so we may have to get together to harass my neighbors with some banjo music.

A cousin on my mom’s side, “Nan” lives in Renton and works as a registered nurse.  We were pretty close while growing up so it’s great to see her now that we’re adults.  Nan took me on a road trip yesterday to somewhere north.  I can’t say where we went since there is a rule about traveling more than 30 minutes away from the Cancer Center.  It might have or might not have been more than 30 minutes away.  

The bizarre thing about my current health is, I can’t predict how I will be from one moment to the next.  Nan picked me up in the morning.  I felt great, no sickness whatsoever.  We were driving on I-5 when I shouted to suddenly pull over!  Nan has a brand new car.  If you are ever a passenger in a beautiful, new car and you need to pull over, the driver will switch four lanes in heavy traffic and be on the shoulder in less than 8 seconds.  I leaped out of the car and said goodbye to my breakfast several times.  In less than a minute, we were driving again.  I was once again feeling completely healthy and even hungry so we stopped and ate.  I had fish and chips.

Off we went, back on I-5, talking about old times and having fun.  Then suddenly, I yelled, “Pull over!”  Again, she made an immediate stop on the side of the road and you can imagine what happened.  The fish and chips were not very good the first time I tasted them.  This time, they were definitely worse.  Then we were off and now I insisted I was completely healthy with no inclination to be sick again.  There were two more pull overs that day, all with the same pattern of “I’m not sick, now I’m sick, I’m not sick.”  Most importantly, her car is still clean but I’m pretty sure she’ll want me to drive my car next time

It was a bizarre day but we had a great time, or at least I did.  

Radiation Someday

I finally had my consultation with the radiation doctor today about zapping my tumor into oblivion.  My expectation was that they would put me on a table, point the radiation toward the tumor and kill it in about five days.  I was very wrong.  It’s about a hundred times more complicated.  The doctor explained the various ways he could radiate the tumor while avoiding other body parts.  His favorite is a new procedure called VMAT or “Volumetric Modulated Arc Therapy.”  It’s basically radiating in an arc around the curvature of the rib.  Since radiation doesn’t bend, he plans to do a series of straight line bursts from different locations and at different angles so that the result is in the shape of an arc.  He drew a bunch of lines that reminded me of a graphic toy called the “Spirograph.”

The frustrating part of this is I still don’t have a radiation schedule.  Today was a consultation and I consented to do the procedure.  Next Monday, he’s gong to do measurements of my upper body to make a cradle, then some day I’ll receive the actual radiation.  As far as I’m concerned the sooner, the better.  The radiation appointments will probably be every day for two weeks.

I’ve had so many week long delays and they are hard to deal with but when the doctor shows me the science, it’s understandable.  There is a lot of calculating to do and they want to get it right.  Who can argue with that?

Tumor Clarification

I have had so many nice emails with concern about my returning tumor.  I'd like to clarify a few things about that tumor.  The tumor is in my upper chest, surrounding the second rib on the right, it's kind of in my right shoulder. The rib is mostly gone but I'm told it should eventually heal. 

Over a year ago, this tumor was the first symptom and it alerted me to having multiple myeloma.  It was large enough that I eventually had a hard time conducting, couldn't lift my tuba and was in a lot of pain throughout the day. Eventually chemotherapy worked to bring down the size but we could never eliminate it.

Now that it has grown again, for the first time the doctors plan to target the tumor with radiation.  To me, this is fantastic news.  My other tumors are going away with standard chemo and the work of two transplants. Since this one is just too big, it needs targeted radiation.  I have no doubt this method will work.  My doctors know what they're doing. Once that tumor is gone or nearly gone my brand new immune system will handle it from there.

While I deeply appreciate the concern from everybody, I want you to know the rest of the cancer is quickly retreating.  My current pain level is very tolerable and I believe my new immune system is battling the cancer.  My body is just one tumor away from a near full recovery.  

State of the Mike Address

I met with a doctor and nurse today to go over my overall cancer levels.  The tumor in my right shoulder is growing.  As explained in an earlier blog, it's simply too big for my new and suppressed immune system to tackle.  However, the great news is none of the other tumors are growing, in fact they all seem to be shrinking.  The tumors are one area where myeloma shows itself but it's also present in the bone marrow.

One of the measurements of cancer strength is called a monoclonal spike or M Spike.  It measures myeloma protein.  When it was first measured in Anchorage, the M Spike was somewhere around 6.0 or 7.0.  After months of chemotherapy in Anchorage, my M Spike got as low as 2.3 but now after two transplants and a lot of therapy it comes in at 0.1.  That's almost non-existent.

I'm pretty sure this is positive news but the tumor still has to be taken care of.  The doctor explained a three pronged method of attacking the tumor.  Spot radiation, oral chemotherapy with a drug called Revlimid, and reducing the immune suppressant drugs so the new immune system can do its work.  The immune suppressant drugs will be reduced very gradually over the next few months.  The radiation and chemotherapy will start within the next week or two.

The medical team was very cautious and technical.  They didn't seem happy that the tumor is still growing but the way I look at it is I'm just one tumor away from almost beating these cancer cells to a pulp.  I know it's too early to know for sure but I have a good feeling about where this is going.  

Rough Road

Today is a good day.  After a clinic this afternoon, I’ll know exactly what’s going on with the cancer cells in my body.  The doctors will hopefully decide a course of action to treat it.  This is a backward step from my assumption that I was almost done with the cancer.  It’s extends my time of being sick and it means I’ll have more side effects from the radiation or chemotherapy.

The entire experience has been a long road of ups and downs.  Now that my Seattle experience is close to an end, I’ll admit that I haven’t reported many of the downs.  I can also admit that they have had an impact on my overall outlook.  For several months, I’ve been waking up at the mercy of the disease and the side effects from treatment.  Predicting my physical health even one day in advance is futile.  I have to wait until the morning to know if I’ll be sick and miserable or feel almost normal.  When I’m sick, I tend not to write about it.

Even with the down days, my outlook is still strong and my prediction of total recovery is certain.  Admitting that it’s been a difficult time doesn’t change any of that.  The path to recovery has been and still is rough but the outcome matters more.  If I keep looking to the future, I will endure the road to getting there.

Tumor Update

As promised, I’ll pass on the latest information regarding my shoulder pain and what could be a full blown tumor.  The results from the PET scan from yesterday have not been analyzed but I saw the graphics from the scan.  They do show a brightness at the spot of the pain in my right shoulder which almost certainly means there is a tumor at that location.  Because of the probable tumor, the medical team is doing a full cancer search by analyzing my blood as well as interpreting the PET scan.  So I have a new appointment this Thursday to hear more complete results of what’s going on with the cancer.  The doctor did make some informed guesses as to what he thinks is happening.

Apparently my new immune system is not yet fully functional.  It’s brand new and I’m taking drugs that suppress it to prevent something called Graft Versus Host Disease or GVHD.  (That’s the disease that kills people.)  My new immune system is probably killing cancer cells but simply can’t keep up with a fast growing tumor.  So the next question is how to give the immune system a boost and get rid of the tumor or tumors.  After more information is gathered on Thursday, they will probably decide to radiate the tumor or tumors to shrink them to a manageable size.  Chemotherapy may also be added to the mix.  They will also eventually reduce the immune suppressant drugs so the new blood cells can be more active in fighting the cancer.  This is still based on assumptions and will be confirmed or not this Thursday.

The bottom line is, it takes time.  I firmly believe my body is making progress in killing these wicked cancer cells but it doesn’t happen over night.  It may take a few more weeks or even months but there is a good chance that I will beat this thing before long.

In my last blog, I bragged about my hair.  Here is an update to that blog, complete with pictures:

                       "Willow Bushes"

The envy of the female members of my medical team at SCCA:  No kidding, they were teasing me about them again today!  I haven’t told them that I don’t care how long my eyelashes are, I’m not a woman.

And the long awaited hair.  I was bald for for way too long.

Tumor is Back?

Mystery is mounting. Although I have a spot in my bone marrow without cancer, for the first time in several months I feel pain in my right shoulder again.  This was the location of the tumor that alerted me to the cancer in the first place.  In the past, the amount of pain correlated with the size of the tumor.

Fortunately, I have a PET scan scheduled for Monday morning. They will give me the results of the scan on Tuesday morning. That scan identifies tumors. Good news or bad, I'll pass it on this coming Tuesday.  Otherwise, I feel great and anxious to come home.

In other pressing news, my hair is growing rapidly.  My eyebrows look like willow bushes, my eyelashes are the envy of the female medical staff and I may have to invest in a comb within a week or two. 

Zero is a Great Number!

Every 28 days, I get to lay on a table, on my side with my trousers down just three or four inches.  It’s not my proudest moment but at least I’m not at the business end of this medical procedure.  They shoot my hip full of lidocaine, then drill into my hip bone.  The nurse says "Take a deep breath, now exhale!"  I have no idea why I’m supposed to breathe then exhale, except it might keep me from shouting four letter words as she pulls a core sample of bone marrow from my hip.  It hurts...a lot.  But one core sample isn’t enough, so she repeats the procedure for a total of three pulls.  

Most people take a sedative but that would require a friend to be present to help me walk out the door afterwards.  The fewer people who have to see my plumber’s butt, the better so I do the procedure alone and without a sedative.  I’ve done this procedure five times and have just one more to go.  One of the tests on the core sample is to measure the amount of cancer cells within the marrow.  On day 28 after my second transplant, they found just a trace of cancer cells.  On day 56 (last Monday), they found zero, not one cancer cell in the bone marrow.  I was warned that it doesn’t mean I'm free of cancer, it’s just a sample of a small portion of marrow.  I could still have cancer cells elsewhere in the marrow and in the form of tumors but it’s a great sign and I’ll gladly take it as good news.  This is the first time in five procedures that the number hit zero.

A complete cancer workup will happen on day 84.  They will do a series of tests that will be more conclusive.  That’s when I’ll know exactly how much (if any) cancer is left.  Twenty percent of patients who receive a double transplant end up in long term remission.  However, fifteen percent die from the procedure.  

I’m pretty certain I haven’t died yet unless heaven or hell allows tuba and banjo music.  (My musical friends will all have a some strong opinions on this).  As far as the near cure, I’m hopeful to end up with the twenty percent but even if I’m not, the cancer is so minimal at this point, I can live with whatever the result.  The key words here are: “I can live.”

Good Behavior?

I just learned that there is a chance of going home early. My scheduled release date is February 15 if things are going well. According to my medical team, I'll be assessed two weeks before that date. They will decide my release date according to that assessment. It's like getting a reduced sentence for good behavior. 

I'm still in the planning stages to bust outta here. I have to appear completely healthy. You can bet that every time I meet with a doctor, I'll be sitting up straight with my hands folded on my lap and a big smile on my face.  

I'll let him know that I walk a mile up Capital Hill every day and I walk back which is also uphill. I'll also mention that I'm taking classes in Yoga, Jazzercise, Zumba, Tai Chi and Chai Tea.  Yesterday, I even swam four laps which was quite exhausting (around Lake Union).  So with any luck, I'll be home in a month. 

2015 in Song

So long 2015!!  I won’t miss you.  It’s not that I’m not grateful for the good things that happened but overall the bad things greatly outweighed the good.  

Sing to the melody of Auld Lang Syne

Goodbye to year two thousand, fifteen

I am glad to see you go

You brought me sickness, heartache too

You’re the worst year that I know

They filled me full of drugs all year,

They examined me every day

They poked and prodded everywhere

They made me sick in every way

My sickness goes on for many months

I pretend that all is fine

My doctors truly want to help

For a cure, I’m just on time

The bills have topped a million dollars

My share is one hundred grand

If I sell my children and my house

I can pay for most in hand

My car went dead this year for good

My house needs work done now

I’ll pitch a tent that’s close to school

And eat Ramen for my chow

But friends and family have reminded me

That I’m not in this alone

I’ve embraced the kindness bestowed on me

It’s sincere and brings me home

I spend a lot of time down here

Being lonely and sometimes sad

The outpouring of care toward me

Makes me feel the year's not bad

I’m stronger for the experience

The cure could be a month away

Two thousand, fifteen, I forgive

I’m getting better every day

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.