Ups and Downs

The last day of work is today.  The student last day was yesterday.  I just realized that I made it!  I told the doctors that going back to work was the right thing for me, that my students would help to make it work.  They did and I'm better off for it.  

The last blog was full of darkness. As with most medical procedures, I assumed the recovery period would show steady improvement each day.  I didn’t expect the reality of so many high and lows followed by more high and lows.  I wasn’t ready for the challenge of having my intentional optimism crushed over and over by continued setbacks and disappointments.  It seems that each time the treatments are going well, something would go wrong.

There are still times when I feel like I stand at the edge of a bottomless pit of misery and stare into the blackness.  The pit didn’t just contain possible death.  It represents a near complete loss of hope along with the constant agony of pain and symptoms too numerous to mention.  The constant bombardment of sickness for so many previous months and then again months after arriving in Alaska, feels like weights pulling me toward that pit of darkness.  It is difficult to resist falling, to simply give up and become a victim.

The only rule I live by throughout this ordeal is to not give in. I haven't given up hope though at times I wonder if that would be easier. I have the deepest heartfelt sympathy for the poor souls who have fallen. They're were all around me at the SCCA. They served as a reminder that strength and a resolve to find complete health was my right.  Cancer would never take that from me.  That resolve gave me strength and more strength gave me that resolve.

Regardless of the poor prognosis of my current condition, I have found a way out and a path toward health. I can say with certainty, the GVHD and it's effect on my lungs will not reduce my optimism and will not take my fighting spirit. It's a new challenge to get through, that's all.

Darkness again

During my stay at the Seattle Cancer Care Alliance, I made an assumption.  I thought that when I left Seattle, my days of sickness would taper and complete health would gradually return.  Performing with the symphony in March and going back to work full time at the high school showed a resolve to be healthy but it's not quite working out that way.  While I was a patient at the SCCA, there were so many positive moments, usually followed by sickness and sometimes despair.  Three months later, little has changed.

I was wrong about my hope and belief that the end of day to day treatment meant I was basically done with sickness and occasional misery.  GVHD or Graft versus Host Disease is hitting my body with a vengeance right now.  I was warned repeatedly that GVHD can have a harsh and sometimes devastating effect but they didn't say it could build this late in the game.  I'm different from the normal patient (again).  I don't have the typical skin, eye, liver or GI problems.  I do have a less common effect of my immune system attacking my lungs.  Coughing is so severe at times, I have to vomit.  My back muscles have hurt for days from the effect of strenuous coughing.

I apologize for griping about my problems.  It's a lot more fun to write lighter, upbeat blog entries.  But I made a promise to myself and to some readers that I would tell the whole story.  I wrote earlier about the "Light at the end of the tunnel."  I entered that light when I returned to Alaska but apparently there are more tunnels ahead.  The darkness I'm experiencing now doesn't have a light, just an uncertain future and a less than great prognosis.  The light will eventually show itself and I know I'll get there.  I just don't know when.

Back to Seattle

My three month follow-up appointment in Seattle is coming up on June 6.  It's really more than three months but it was the soonest they could schedule an appoint from last February.  They sent my list of appointments yesterday.  It will be a full day of tests, ending with an hour and a half discussion with doctors.  The sad part is, there isn't a bone marrow aspiration. There won't be a test to see if the cancer is gone or has come back.  I don't understand why but they typically don't do that test for an entire year after the transplant.

GVHD (Graft versus Host Disease) is their real concern right now.  That's the disease from a new immune system fighting against a foreign body.  It's very real and I've had many aggravating symptoms for months.  It's their primary concern because it's a potential killer within the first year of a transplant. 

So we have conflicting concerns.  I wonder about the cancer, they worry about GVHD.  My first question for them will be "Why can't we check both?" 

Why me?

I was recently reminded of the sadness brought by cancer and the incredible support from my community, family and students.  It reminded me of a selfish thought that I had over and over for the past several months.  I'm not proud of it but writing it down for the first time helps to get it off my chest.  

 My journey through many sessions of chemotherapy, eating fist fulls of drugs and two transplants made me ask the age old question, why me.  Why do I have to suffer this way.  I didn’t deserve the pain, the agony and the depression.  I believe that I’m generally a good person, kind to others and I think I have a good heart, so why me?  Each time that fleeting thought would come to mind, I would think of my neighbors in the Pete Gross House.  Most were better off than I was but many were not.  They were struggling to just survive, to live another week or month or possibly another year.  They were hanging onto a fragile thread of life that could break at any moment.  

My condition was temporary, certain to recover and live my own life.  Self sympathy made me ask myself “Why me?  Why do I have to suffer?”  Reality of my surroundings made me ask, “Why them?”  They didn’t deserve to be terminally ill.  They didn’t ask for the pain and suffering at a far greater level than I could comprehend.  My shame of self pity would always end with asking the question in another way.  “Why me?  Why am I the lucky one?”

Graduated

Graduation is done!  The students played like champs.  Everyone was happy.  It's exciting to watch the graduates move on with their lives.  Some will make great choices and some won't but they will hopefully all live very long and happy lives.  They deserve it!

Graduation

Alaska graduates their students early.  It makes sense.  The tourism industry is hiring Summer workers now and our relatively few warm months will be pass quickly.  Today is the last day for my fifteen band seniors.  I've said it before but it's worth repeating.  They're an amazing group of young men and women.  All of them are bright, respectful of others and just all around "good people."  I'll miss them at school but it's great to see them go out into the world and flourish! 

Crackling

It's been too long between blogs.  For the past many months of blogging, the only times I have allowed more than three days to pass before another blog is due to sickness.  This lapse is no exception. 

My so-called optimism is real but I have to acknowledge another reality that is beyond my control.  When I started treatment at the Seattle Cancer Care Alliance a very informative doctor sat me down at a table and gave it to me straight.  She said 12% to 15% of allogeneic transplant patients don't survive the first year following the transplant.  Many others contract illnesses that alter their lives forever leading to immobilization or requiring supplemental oxygen twenty-four hours per day.  The leading cause of death is pneumonia, in part due to immune suppressant drugs and partly due to the infant nature of the donor immune system. 

I contracted a cold recently.  It sank into my lungs where I can hear a constant crackling and wheezing which are clear signs of pneumonia.  No worries though, I did go to a doctor this weekend and he was pretty certain I don't have pneumonia but it was enough of a scare to cause concern.  The most annoying part is the sound keeps me awake for all hours.  I've always had severe annoyance to certain sounds like chewing or typing.  This seems to fit in that category. 

My concern this weekend is just another of a thousand reminders that cancer and the treatment of cancer with all of it's residual side effects and potential threats on life itself is dangerous.  I still have no doubt that I'll get through my one year post-transplant without a serious illness.  But I have to concede that it's been tougher than expected.  I actually thought it would be a breeze by this point in the recovery.  The breeze will come, just later than I had hoped.

Summer is near

End of the year wrap-up in high school is always interesting.  Students (and teachers) are looking forward to the Summer.  Younger students are interested in auditioning for the upper groups so they are starting to practice for the first time this year.  Seniors have already mentally left the scene. The principal is  looking for new teachers for next year and the retiring teachers are so giddy, they can't contain themselves. 

In the music world, we're doing inventory, putting away music and rehearsing for the graduation ceremony.  On the medical front, I get to say goodbye to my port tomorrow.  It's a plastic device in my chest that makes it easier to take blood out and put medicine in.  From here on, it will be done through IV needles.  It's progress. 

Tears

The Spring Concert is over.  All bands performed extremely well.  There were lots of tears from the musicians during the final piece for the Symphonic Band.  For the seniors, it was their last performance in public school and for some it may have been the last music performance of their lives.  I encouraged them to keep up on their instruments.  They can play in college bands regardless of their major.

Most of the tears were due to the realization that high school band was coming to an end.  It's more than playing music.  Band is a community of friends, a safe place to spend all four years of high school.  It's where teenagers know they have a purpose and each individual plays a critical role in the larger group.  It's where they belong.

Spring Concert

My high school spring concert is this evening. I've done so many of these, it should be second nature by now but it's not. With so many details to cover, my concern is for the details that I've forgotten. 

Food, flowers, decorations and punch are all being covered by our orchestra teacher, Jean Lenoir.  The slideshow is mine to worry about as well as some thank you's, announcements and the senior recognition. I guess I also have to conduct through some music.

My personal goal is to stay upright throughout the evening and for my brain to stay on task. If not, the students will cover for me. I have no worries about their abilities or willingness to make it work.  This concert is for them and will hopefully turn into lasting memory, especially for the seniors. 

Dear Side Effects,

Dear Side Effects,

Please stop!!  You have been hammering me for almost a year, trying to wear me down, tear me down or bring me down.  For so many months, you would hit me with something new every week.  Remember the severe finger cramping, then a bad headache for days, then the shaking chills followed by the fever, then terrible GI symptoms, then pain in the kidney and on and on and on?  You would add a new ailment just as I was getting used to the previous one.  They overlapped, sometimes with two, three or even four symptoms going on at the same time.

Even though you have slowed your pace with a new side effect about every two weeks, it's still annoying and I'm done with it.  The latest attack of making me cough every two minutes and preventing communication with my students may be the final straw.  I've learned a lot about fighting GVHD and various illnesses caused by drugs.  From now on, I'm going to use that knowledge to beat you every time you show yourself.  I'm not going to wait for the usual two to three weeks for an official okay from the doctors in Seattle.  I have always waited before but they would just end up giving me the treatment that I already knew would fix the problem.  I haven't been wrong regarding treatment, not even once. 

I know the cough was caused by GVHD so I've increased the steroid, Prednisone and now the cough is gone.  I should have done so a week ago.  The doctors in Seattle are still talking about it and want me to do two more weeks of testing before they will believe it's GVHD.   So give up, it's not working.  I'll just put out any fire that you start and keep smiling.

Mike

Festival success

The big festival was Monday and Tuesday night of this week. Eight local bands played for each other and were judged by an expert who sat in the balcony.  This festival is the reason I went back to work early and has been my motivation and distraction from pain and sickness.

Our Chugiak musicians were fantastic. They played their hearts out, they focused and the result was as expected.  The audience loved them and all is is good.  Now for the Spring concert next week...

Summer

Spring is finally here in South Central Alaska.  The snow is gone, temperatures are hitting 50 degrees and the high school seniors are feeling that the end of their public school days are coming to an end.  It's not a pretty time of year with gravel still on the roads and dust flying everywhere.   The trees haven't started to blossom yet and lawns are still yellow from months of freezing temperatures.  The highway has a different set of traffic with RV's, boats on trailers and motorcycles all pretending it's Summer.  Like the everyone here, we simply can't wait for it come.

It will be a great Summer.  Dip netting salmon on the Kenai, kayaking out of Whittier and Summer work are all Summer activities that I look forward to.  This is also the Summer when I find out that the cancer is completely gone from my body.  Yes, it will be a great Summer!

Retirement!

Is it time to retire?

Here are some reasons why I should make this my last year in education:

• This is year thirty-four as a teacher or school administrator.
• Graft versus Host Disease is beating me up with no sign of retreat.
• Drug side effects make functioning at school difficult.
• The retirement pension would be virtually the same as my current paycheck.
• By the end of a school day, my muscles are so fatigued due to the transplants, it hurts to just walk.
• I may need a second winter job to pay medical bills.
• The doctors are telling me to not work.

Reasons to not retire:

• I'm not finished.

I'm not the best teacher, nor the best musician, nor the best conductor.  I could go on and on about my deficits.  But I do have a conscience, I care deeply about the well being of my students.  As they advance from 9th to 12th grade, they mature into adulthood as citizens who respect others, who have an understanding for beauty through music and they will all have a lifetime memory of huge accomplishment.

I'm not retiring.

Great Students

The doctors said "Don't go back to work for several months."  They repeated this line many times and I would shrink with guilt every time they said it.  The guilt was due to knowing that I had to go back to work.  As a high school band teacher, seeing the same students each day for years, I couldn't stand the thought of staying home while they are judged at a festival or while the seniors are honored at the Spring concert or while they walk through the graduation ceremony.

I pleaded with those doctors to understand that these students are special, they would respect my request to stay back to avoid transmission of germs.  They would help with the physical work that I'm not up to doing and they would support me as I've supported them for years.  The doctors were understandably skeptical.  High school students aren't always known for being respectful and for following rules.  

Now that I've been back to teaching for over a month, I can safely say my assertion was completely correct!  My students have stayed back and have stayed out of my office.  When a student does have a cold or cold symptoms, they stay as far away as possible.  After a gym performance on Monday evening, all of the instruments, stands and chairs magically appeared back in the band room without any instruction to move them.

The adjudicated festival is this Tuesday with performances by eight high school bands.  My band will have had fewer days of rehearsal for this festival than ever before but they won't do poorly.  If fact, I suspect they will rise to the occasion and perform with all the grace, beauty and precision the music deserves.  As for me, all of my personal health issues are greatly overshadowed by the pride I'll see on my student's faces when they know they performed well.  Their achievement will be great memory that will last a lifetime.

Bullies

In earlier blogs from Seattle, I referred to the light at the end of the tunnel.  Although the light kept moving further into the distance, the simple goal was to return home.  That was the light that nourished me for such a long time.  It was as if leaving Seattle meant I was done, cured and healthy again.  When that moment finally became a reality, it was an emotional journey, one of happiness, nervousness to see friends and students and some sadness to say goodbye to so many who cared for me.

Since I'm now realizing the tunnel of sickness is much longer than I ever imagined, I have to look forward to the many new lights that are in front of me.  Leaving Seattle was a singular goal.  In some ways, my focus was simple.  Now, the tunnel goes on for months with many lights along the way.  First, the symphony concert was this evening and another will be tomorrow.  I played with a fever tonight but it went just fine.  My band is performing in a festival this Monday evening.  The following week, my students perform in an adjudicated festival with several other schools.  The Spring concert is just a few days later.  All of these events represent future goals to check off as they go by.  They also represent a focus that has nothing to do with sickness and nothing to do with the evil that we call cancer.

My current state of mind reminds me of a story from my childhood, one that gave me confidence and courage.  As an eighth grader, I was a good student but not great.  I excelled in music and was nice to people.  I also had a severe hatred for bullies.  The middle school I attended had more than its share of bullies with violent fights every day and packs of students who just wanted to intimidate people.  At the time, I realized their power and control of others wasn't based on toughness or strength, it was all about fear and intimidation.  In other words, the bullies of the school relied on mental control out of fear of physical punishment.  The truth was, they were not stronger or tougher than others but many students were still afraid.  If their intended victims were not afraid, they had nothing.

In the Spring, I was selected along with about a dozen other eighth graders to deliver tea to parents and teachers at an event called "Parent Night."  It was an honor to be selected.  I had to wear a white shirt with dress pants as I carried a silver tray full of tea cups to various classrooms.  Suddenly, a middle school student in regular street clothes approached me and pointed at the main outside door to the school.  Standing in the doorway was the most infamous bully from the neighborhood.  His fists were to his side in a fighting stance.  He was at least three years older, a high school dropout whose daily routine seemed to be theft, selling drugs and intimidating everyone.  He stole a minibike from me three months earlier.  My brother and I discovered that he was the thief so I turned him into the police, retrieved my minibike and took him to small claims court for damages and won a settlement of $60, a very significant amount at the time.  The middle school student who was sent as a messenger said, "Bill wants to beat you up.   He'll be waiting for you outside."  This message was intended as a one way conversation.  It wasn't a question and Bill wasn't expecting a response other than me being frightened to leave the school.  For some reason, I wasn't afraid and replied, "Tell him it will be a while. I'm busy delivering tea."

This character had been trying to get in a confrontation for several days but after that evening, he gave up.  His routine of intimidation didn't work.  I was simply too busy to satisfy his attempt to frighten me.  That was the last time I ever saw him.

Cancer tries with all its might to control and intimidate.  It wants to take over our body and soul.  Under threat of physical punishment or death, it's standing in the doorway with fists at its side wanting its victim to surrender.  Cancer is the ultimate bully, full of hatred and dark intent.  As for me, for whatever cancer may be left in my body, I'm truly not afraid, never have been.  I'm saying to the cancer within me, "I don't have time to be intimidated.  I'm simply too busy."

Tremors

GVHD or Graft versus Host Disease is when the new donor blood and immune system attacks part of the host body.  It can go after the skin, liver, nervous system and the GI track among other areas.  It's very common for recipients of an allogeneic transplant.

I had a new experience at symphony rehearsal last night.  I've been experiencing symptoms of GVHD for over a month now but a new symptom showed up during the rehearsal.  I had hand and arm tremors.  This typically wouldn't be very disturbing or even noticeable to people around me if I kept my hands in my pockets but I was holding a tuba and sitting on a platform with the trombone section.  Before long my tuba was shaking, the platform was shaking and the trombones were playing with an unintended vibrato!  It felt like an earthquake for two hours.  One of the trombonists was getting sea sick.

As with most symptoms, there is a drug that helps.  I'm on that drug now and the tremors have stopped.  The concert is tonight.  Thank goodness for pharmaceuticals.

Not Normal

Symphony rehearsals until 10 pm followed by jazz band at 6:30 am was my schedule for years.  The new me (post transplant me) isn't able to keep up with that schedule.  I'm at home on sick leave, had a fever last night and slept for twelve hours. Once again I understand that my doctors weren't kidding when they told me I'd be extremely fatigued.  I just want to feel normal again.

Deception

Cancer can kill but the treatment to prevent death is much more miserable than I anticipated.  The tradeoff of taking the treatment versus the alternative is a no brainer.  Nearly everyone would prefer a time of misery over death.  In my hurry to get back to my former life of playing and teaching music, I've learned for the hundredth time that my doctors were right.  It takes a long time to feel normal, to have enough energy to get through a day or to just be awake for more than twelve hours at a time.  They say it will take about a year after the last transplant which happened on November 6, 2015.

Since starting work full time, the toll is significant.  By the end of the teaching day, I feel like collapsing.  My extra projects are all on hold due to a lack of energy and a need for sleep.  So far, I have been able to put on a happy face and force an energized appearance but I know it's not the real me.  It's a deception aimed at my students to keep the focus on the music, on the upcoming concerts and on graduating another outstanding senior class of musicians.  

Side effects

Medical science is amazing.  So many people (including me) are alive today due to recent advances but with each advance, there are negative reactions otherwise known as "side effects" that can wreak havoc on otherwise grateful patients.  Side effects are just a part of the whole package.  If you want to get better, you'll have to go through dozens of types of new sicknesses as a penalty for beating the major disease.  This is old news.  Everybody seems to understand and accept it.  

After having two transplants and given dozens of potent drugs every day, I knew I would experience negative side effects.  The part I didn't realize is the huge variation of those side effects from one patient to another.  Other patients and I would frequently compare symptoms.  One would have massive nausea, while another would have a severe skin reaction and another might have nothing, all from the same new drug.  This leaves the doctors chasing individual problems for each patient even though the cause may have been the same medication or procedure.  

My own most frequent side of effect from the past eight months is severe fatigue.  I took a day off today and slept for eighteen hours!  When healthy, I functioned just fine with about six hours each night.  While I was in Seattle, I would have normal energy one day, then be exhausted the next.  It was completely unpredictable.  The only change between two months ago and today is the days of being exhausted are less frequent.  Every now and then, I realize the team of doctors and nurses who repeatedly told me it takes about a year to get back to normal must be correct.  The length of time to heal seems to be the only aspect of side effects that's consistent for everyone.

Statistics Lie

After more than a year of having cancer, I just did the unthinkable.  I googled multiple myeloma statistics.  I have been telling people to NOT bother with statistics posted on the web.  The good doctor in Anchorage who was optimistic about my odds warned against reading those websites.  He said they’re outdated and primarily for patients in their 70’s and 80’s.  He also explained that there isn’t a statistic for me, a 56 year old, otherwise relatively healthy male.  

After finally breaking my own rule and reading the statistics, I can see the wisdom in the doctor’s warning.  They show a very depressing outlook on the effects of the disease.  First, it’s very rare.  1.6% of all cancers are multiple myeloma.  The most frightening statistic is that only 46.6% of patients survive five years after a diagnosis.  If you were to stop there, it’s time to be nervous.  The odds are, I won’t survive the next three years and about 7 months.

Reading more statistics however, shows that the median age of a diagnosis is 69.  The average death from the disease is 75.  The study ended in 2012.  These numbers would be relevant if I were 69 at the time of my diagnosis (I was 55) and if I contacted the disease at least five years before 2012.  Everything the doctor said was accurate.  This study is already outdated and does not apply to people who are younger than 69.  

At least now I understand why so many friends and family thought I was in serious trouble.  I certainly could have been but the odds for myeloma victims at my age in 2016 are simply not calculated.  I know my personal odds are 100% to live a very long life.

Boat for sale

I'm in Homer right now.  For the past ten years, I have spent the month of July fishing in Kachemak Bay.  It's called the Lower Cook Inlet, Salmon Purse Seine fishery.  Although seine boats are the largest commercial salmon vessels, the Lindy is only 32.5 feet long.  It's the smallest seiner I've ever seen.  It takes a crew of four, uses a skiff to stretch the 1200 foot net across they water.  Seining can be very lucrative but it usually isn't in Lower Cook Inlet.  Of about eighty permit holders, only eight to ten fish each year.  Some do well, some try to break even and some lose money due to the many expenses and lack of fish or low fish prices.  I've experienced all scenarios.

It's time to sell the Lindy with the skiff and permit.  I'm in Homer to fix a couple things and put it up for sale.  If it sells, it will go a long way to paying many of my new bills.  Even though it's being sold because of my recent illness, I have no regrets.  The month of July can now be free to do something else.  I will also be quietly saying goodbye to a culture of commercial fishermen.  They're a unique bunch.

The fishermen that I've worked along side for years are mostly friendly.  Now and then, they may show frustration by yelling at other boats or ramming a boat by "accident."  I saw one fist fight between two boat owners but they were also brothers.  Most seiners leave Homer on Monday at 6:00 a.m. and return late Friday evening.  For the most part, these boats don't have showers, the food is cooked by whoever knows how to cook on a diesel stove and the four bunks are squeezed into the bow of the vessel.  If two crewmen don't get along, they have to work through it because they're living, eating, working and sleeping together for five days at a time.

Every now and then, a boat will head back to Homer in the middle of the week.  One of two things just happened.  They may need a mechanical part like a new prop for the skiff or a new starter for the main engine or a crewman isn't working out and needs to go home.  Either way, that boat is loosing money by not fishing.

When a location is found where the fishing is hot, it's kept a secret for as long as possible.  Whenever I would cruise by another seiner and ask, "How's fishing?"  The reply was almost always, "Not very good!"  This could mean the fishing is truly not very good or it could mean it's fantastic so you should move on.  In other words, the answer is always meaningless.

I won't miss any of this.  The part I will miss is just being on the water for a month.  There is something calming and comforting about living on a boat, getting up in the night and watching a group of otters float by on their backs or watching the many bald eagles own the sky as they search for fish that swim too swallow in the bay.  It's a different world and a beautiful one.

Self diagnosis

For the past several months, I've resisted the temptation to think that I know what's best for me.  While surrounded by medical professionals, many with decades of experience regarding multiple myeloma, it seemed foolish to state my opinion or to diagnose myself regardless of my certainty.  Now that I'm more on my own, I'm free to make decisions about personal health, decisions that may determine how much activity to expend in a day or which optional drugs to take.  It's a very different direction from my Seattle day to day life and so far, I enjoy it very much.

The looming question is about activity.  Should I be working?  The doctors in Seattle strongly cautioned against it.  They didn't say with certainty to stay at home every day but the protocol is to not work for an entire year after an allogeneic transplant.  This is where I believe my case is different from others.  It is no doubt best for some patients to recuperate for a year before resuming activity.  Everyone responds to the treatment differently and most respond with more medical issues than I have.  In my case, the best treatment is to resume activity as soon as possible and I have rational reasons to make that diagnosis.

I've been in Alaska for two weeks now.  It's as if the medical side effects have been placed on a dusty shelf of my mind.  They're all there but they are not as noticeable.  When I think about it, I still have numbness and painful tingling in my feet, daily muscle cramping in the legs and fingers, various GI issues, extreme fatigue at times, frequent headaches, buckling at the knees, numbness in the fingertips, occasional nausea, pain in the shoulder from radiation and various, weird cognitive issues.  While I was in Seattle, I would have hours each day to focus on these side effects but now, my schedule of work and mental focus on the task at hand doesn't allow for time to think about it.  When a single medical issue flairs up, I notice, otherwise it's not an issue.

I have always believed that working through pain makes it hurt less.  In this case, working through these issues makes them much less noticeable.  However, I'm getting over a very serious disease and I'm still taking ridiculous amounts of strong drugs each day.  I understand that there is a danger in ignoring medical problems.   Without a doubt, certain small medical issues are signs of something that could be serious so I still call the medical team in Seattle with questions.  They are the true experts.

It's Almost Over

My fight with cancer isn't over yet.  That fight will be over within weeks or possibly months.  I will spread the word when I have won the battle once and for all.

I have called the past many months the most difficult time of my life.  That's an understatement.  With well over three hundred medical appointments, more than three weeks in the hospital, countless days of sickness and a relocation to Seattle for eight and a half months, this experience will be embedded in my mind for decades to come.  There were times of depression and sadness, loneliness and solitude.  With each passing day, new issues would surface causing pain, discomfort or sickness.

I noticed that a common question for cancer victims is "Why me?"  That didn't occur to me.  It happens to thousands of people each year.  A different question came to my mind frequently.  Whenever I would see a child at the clinic suffering from an evil that they can't understand, I was compelled to ask, "Why them?"

Not everything from this experience was difficult.  There were many times of overwhelming gratitude to friends and relatives for their concern, their prayers and help.  There were times of feeling healthy which stood out while living in the sea of sickness that surrounded me.  There were also countless moments of feeling lucky.  So many patients were not taking their treatments as well.  I was asked who I was taking care of dozens of times by others who didn't realize I was the sick one.  My side effects from medications and procedures were almost always less severe.  It may sound odd for a tandem transplant patient to feel lucky but while I was in Seattle, surrounded by a sea of suffering my feeling of "luck" was compelling.  It was very real while self-pity was not an option.

My most constant certainty was a determination to own my body and mind.  There wasn't a single day when the cancer didn't try to enter my soul, to become the primary occupant of myself.  Every sickness, fever, pain and discomfort felt like another attack, another attempt to enter my identity and convert me from a person with cancer to a cancer patient who used to be me.  That certainty to keep ownership of myself was my motivation to keep going, to push through to the next procedure, to endure whatever punishment the drugs could give me and to stay positive in an environment where enormous doubt hung over people like an unforgiving storm cloud.  Holding my own identity allowed me to dream of the future beyond cancer, to focus on life long projects that are meaningful and to treat cancer as a temporary bother rather than an all consuming evil that has already taken so many.

As with several other patients who remained positive,  I found it to be therapeutic to share that attitude with others who were not as fortunate.  Lifting a cancer patient's spirit with a story or a joke or just a smile became a personal mission that was probably more beneficial to me than those who I was attempting to help.  It gave me purpose beyond my own health and allowed me to forget that I actually had a worse case of Myeloma than virtually everyone around me.

All of this is in a past that I don't plan on repeating.  The focus now is to enter another medical phase called recovery.  My immune system is medically suppressed.  I'm constantly reminded by medical personnel that germs can kill.  As expected, I have chronic "Graft versus Host Disease" or "GvHD."  That's the disease caused by a fight between my body and the foreign bone marrow and blood within me.  As with so many possible side effects that surfaced, my symptoms were different and fortunately not as severe as others.  I've been warned that people still die from GvHD but my symptoms have been tamed by more drugs.  This new disease is not a daily issue for me.

Currently, I take about thirty pills each day, each prescribed by the doctors in Seattle and each with a long list of possible side effects.  I'm experiencing some of those side effects every day but my work, sharing music with high school students takes my focus away from health issues and gives me a positive outlook to life through the eyes of young people.  But as one great evil recedes, another comes forward.  Now that cancer is not bombarding me each day with attempts to take me, another version of cancer has emerged.  It's time to pay the ongoing and seemingly forever growing bills.  In this case, I do ask, "Why me?"

Now that I have been told countless times by doctors as recently as yesterday to relax and let the recovery happen over time, I've been hit with new medical bills over and over again.  I have been grateful to so many friends and family who have donated to cancer funds in my name to help with these bills but the stress of the constant financial strain makes it nearly impossible to "relax and recover."  I've been hit with countless examples of insurance denials for every reason imaginable.  They add tremendous stress to patients like me who are supposed to focus on physical recovery and wellness. 

One of my required medications is considered a chemotherapy.  It's extremely important to help kill the remaining cancer cells.  The small drug company who sells this drug has put a price tag on a single bottle of twenty-one pills at $14,000.  That's not a misprint.  That's more than I have ever spent on a car.  However, this company has a special program for lower income individuals to sell this bottle of pills for well under $100.  My doctor signed me up for this program without asking and I'm glad she did.  However, yesterday, I received a letter from the company saying they are auditing my finances.  Their concern is that I may earn too much to qualify for their special program.  Now, I'm forced to send a private drug company pay stubs and tax records to prove that I'm not one of them, just a high school teacher with thirty-three years experience and almost two Master Degrees who easily qualifies as a low income person in desperate need of their drug. 

A quick Google search of this company reveals that their top executive was paid twenty-four million dollars last year.  Their seventh ranked executive earns just three million.  I don't know how he gets by.  This is the company that wants my tax records to make sure I earn several hundred times less than they do.  You would think that of all of those multimillion dollar executives one of them could have figured out the price they are charging for each pill.  The answer is $666.  Somehow, that seems fitting.

If not for the forced kindness of friends through donations on GoFundMe and other fundraisers at school, I would be paying the medical bills with credit cards.  I plan to sell a fishing boat in Homer to help pay the bills and I just heard that more fundraisers are on the horizon.  When the fundraisers started, I was terribly embarrassed but the wisdom of one of my high school students described it in a way that I can deal with.  She asked what I thought of her starting another fundraising event.  I told her how difficult it was for me to accept the kindness and especially to accept charity.  She said "Everybody likes you and they really want to help."  At that point I realized it's not really about me.  It fills a need for students to do something for someone they know.  I know that need.  I have put on large fundraising events for music teachers in the past who had cancer.  I felt compelled to help and I realize now that the tables have turned and others feel compelled to help me. 

Writing these blog entries was very therapeutic while I was at the clinic.  I haven't read any of my blogs from the past and I probably never will.  Reading my previous entries would remind me of a pain that I would like to forget and an insight of my inner being that I have never previously revealed to anyone.  I'm more comfortable trying to ignore pain, working through it and going on with my day.

At this point, I'm considering stopping the blog and moving on with life but I'm still getting interest (34 people checked it today before this entry.)  I have also been asked to keep it going by a couple readers so I'll ask you.  Should I keep it going until the cancer is completely gone? My concern is the interest may wane as time goes on.  Please send me your thoughts.  I'm happy to go either way on this.  There will be at least one more blog entry and more if there is interest.


Blog Statistics as of March 9, 2016:

Total blog entries: 84
Total pages viewed:  16,508
Total comments received: 160 (also received more than double that number through standard email)

Top twenty blogs entries, viewed


978 views  “Summary of my treatment” (first blog in July)   
440 views “Two steps forward and one step backwards” - 7/14/15
285 views “Missing a Wedding” - 8/1/15 
184 views “Recovery Time” - 7/29/15 
169 views “Stem Cell Collection is Done!!” - 7/25/15 
162 views “Banjo Time!!” - 7/19/15
147 views “Feelin’ Good” - 7/15/15
120 views “Longer Treatment Plan” - 8/4/15 
119 views “Go Mustangs!” - 8/12/15
119 views “Back in the Saddle Again” -7/15/15
110 views “Misery” - 11/24/15
109 views “Time to Harvest!!” - 7/23/15  109
101 views  “The Cold, Hard Truth” - 11/1/15
101 views “Neutropenia” - 7/21/15 
98 views “North to Alaska!” - 9/19/15
90 views “Dark Times” - 8/26/15 
90 views “Cancer Takes and Takes” - 10/9/15
90 views “Music versus Cancer” - 11/19/15
90 views “Door Decorations” - 12/20/15
90 views “State of the Mike Address” - 1/14/16

Returning to teaching

I suppose the blog can keep moving forward until things settle down.  There have been a couple requests to keep it going.  As the readership falls, I suspect I'll announce a last blog soon.

I went back to work yesterday for a half day (three classes).  That left one Freshman band and a computer class with the substitute teacher.  Students in the left-over band class were apparently upset that my return didn't include them.  So today, I stretched my "half day" to four classes, seeing all of the bands.  It was also a stretch for my stamina but I made it through and I can't describe how good it feels to get back.

There is a phenomena that is occurring right now with my band students at the high school.  I've seen it before so it was completely predictable.  When a teacher is gone for a long period, their value from the student perspective gets highly elevated.  On the other hand, the substitute teacher, who has been fantastic is still labelled a "substitute" and will never measure up to the mystique of the missing, "wonderful" teacher.  This is especially true for the 9th graders who don't even know me yet!

Within a couple days, they will discover that I work hard, I have passion to make them sound like a great band, but I'm really not saying anything to them that they haven't heard from their substitute teacher.  The mystique will wear off soon and that's fine with me.  My high school bands have been extremely fortunate to have a substitute who was in it for the long haul to make it work for the students.  We couldn't have been more fortunate.