Back to Seattle

It looks like a routine that will go on for the rest of my life.  Since multiple myeloma is officially incurable, the doctors at the Seattle Care Alliance want to see me every six months just to make sure things are going well.  That schedule assumes my symptoms of cancer are nonexistent and other problems are minimal.  The appointments (six so far) are for June 19 and 20 but my last visit was extended for a few more days as they discovered new symptoms to explore.

I'm looking forward to going back, knowing my visit will be short and knowing my blood scores show no sign of cancer whatsoever.  We'll certainly go over the cause of muscle pain and other annoying symptoms that could possibly be from Graft versus Host Disease but hopefully that will be the focus of my treatments.

As always, seeing new people who have been recently diagnosed with cancer will be difficult.   The most difficult part of attending daily appointments for months on end was to see the agony and shock of those who thought it would never happen to them.

Demons

The demon inside my consciousness is disappointed or even angry.  At one point, my belief was that the pain and symptoms of GvHD would be gone just months after the transplant.  That expectation stretched on to a year after transplant with GvHD still raging and showing itself in so many ways.  Now, it's a year and a half after the second transplant.  The symptoms are different but still painful in the form of muscle aches.  At times a powerful pain pill is the only thing that allows me to function.

The good news is the demon inside me isn't in charge.  The moment he complains, the more sensible me tosses his thoughts aside as selfish and even frivolous.  My more grateful consciousness realizes that others are hurting much worse and that my close call with mortality has a price to pay.  It's a small price of physical pain and about a dozen other annoying symptoms.  The payoff is in the form of life itself and it's up to me to make that life a happy one.

Time for happiness

The end is in sight.  Another beginning is just around the corner.  Now that retirement from teaching in Alaska is just a few days away, I'm starting to wonder what the future will bring.  It's exciting and invigorating to imagine life without the confines of a teaching schedule.

This weekend will be filled with helping my eighty-seven year old mother and seeing relatives while we say goodbye to my step-father who passed away in his sleep.  He was ninety-four and lived a very healthy life.  Seeing another person pass away reminds me of the value of life and the short time we have to enjoy each other's company.  It's time to live life to the fullest and cherish the memories of yesterday.

A bright future

All things considered, life has been pretty good.  From as early as I can remember, thinking about how to make the world a better place was as much a part of life as eating and sleeping.  As a child, I would hear my dad, uncles, cousins and brothers talk about ideas that would change everything.  It seemed like a male dominated sport that sparked no interest from the women in the family.  They would discuss better ways to burn fuel, create energy and make things more efficient.  Many of their suggestions would eventually be implemented into common practice but always by somebody else with the means to make it happen.

It was an optimistic and idealistic discussion with a mechanical and engineering twist.  That way of thinking has done well for me even decades later.  Trying new ideas is how progress is made.  It's how we move forward and it offers an optimism to look ahead with hope and even certainty that the world is evolving into something better.

If my body were a mechanical device, one would say it broke down and was unrepairable.  Some very smart people invented new ways to fix it and it's working.  Just as a group of people are sitting around a kitchen table, with ideas about how to improve the mechanical world, a group of doctors are also sitting in labs and working on new ideas to wipe out cancer.  As long as those men and women keep it up, the future couldn't be brighter.

As for me, the latest blood test results show the liver is improving and almost normal.  The muscle pain is at a peek but I think it will subside now that the liver is functioning again.

Acidosis

It's been a while since leaving a post.  Gearing up for the large group music festival, working with clinicians and absent students has taken up too much time.  The end of the year is always the busiest with concerts, festivals and grades.  It doesn't help that some seniors think they should check out of all responsibility months before school is over.  

All health issues are on track.  The cancer is undetectable.  GVHD is making an appearance wherever it can.  The latest is lactic acidosis caused by a somewhat failing liver.  If I ignore the symptoms, I'm hoping the disease will get frustrated and just go away.  It's like a battle of stubborn will.  The disease is persistent but so am I. 

So many teachers who retire focus on justifying their retirement.  I think that means they are not quite sure about leaving their work of a lifetime.  There is plenty of justification in Alaska right now.  The economy is bad and getting worse.  Funding for education is getting cut primarily due to poor oil prices and production.  Even if things were booming, I don't plan to look back.  It's time to shift gears and work on something else.  I'll miss the students but not the stress and the worry and focus on the job at all hours.  My next job will end at the end of the work day.

Spring results

The snow is going away!  Spring has finally arrived to South Central Alaska.  Spring concerts are in the works and my latest blood test results are in.  

Cancer is an evil.  Like war, it kills innocent people, including children without remorse and without purpose other than causing pain.  Whenever I have a minor victory over cancer, I'm emboldened with bravado.  I feel stronger and more confident.  The latest test results show no detectable cancer in my blood.  Since Multiple Myeloma resides in the bone marrow which produces blood, the first place to look is the blood for signs that it may have returned.  At this point, there is no detectable cancer.  The war isn't over, but I'll accept a victory for every battle, one after another.

Band trip done!!

Another band trip down...Nobody got hurt and everyone had fun.  I always tell the students that I want to hear compliments from strangers regarding their over the top, polite behavior.  It happened over and over, ending with a flight attendant on the trip home.  She said, "Your students are so polite, and usually there is at least one exception but I couldn't even find one."

Today, I have to get a blood test to see if my liver is still exploding.  I'm back on immune suppressant drugs due to the earlier GVHD symptoms.

What are the odds?

The Leukemia & Lymphoma Society has an ongoing support group.  They put out information and offer conference calls to ask question or talk with other myeloma patients about issues.  I haven't participated yet but I'm thinking about it.  

Some of the information they have published is interesting.

Myeloma is the second most frequently diagnosed blood cancer.  

•. Each year in the United States, there are more than 30,000 new cases.
•. Almost 13,000 people will die from myeloma (each year).
• Only 48.5 percent of patients diagnosed with myeloma will survive five years after diagnosis.

This is the most recent set of statistics but it's still old.  The 48.5% of patients who survive five years is based on actual cases, meaning the data is at least five years old.  Five years doesn't seem like much but it's huge in the cancer research field.

I sound like I'm searching for a silver lining to depressing news.  Maybe I am but, regardless, having around a 50% chance of survival after five years means I'll be here for another thirty years.  Am I math impaired, over confident, foolishly cocky or just too busy to worry about it?  The answer is yes!

My medical practice

The meeting of cancer doctors came up with a solution.  They said I do have GvHD and that I should go back on a drug called Sirolimus.  It's an immune suppressant drug.  With a suppressed immune system, my body and blood will get along a little better and the GvHD symptoms should diminish.  I will of course be more likely to pick up a cold or other bugs but that's the tradeoff.

As often is the case, this exactly what I thought they would say.  I wonder if I just diagnose myself from now on, could I bill the insurance company?  It would be a way to pay back some of the medical bills that have accrued over the past year.

Round Table

The Seattle Cancer Care Alliance does a lot of things right.  One of them is recognizing the fallibility of their own doctors.  This assumption based on a practice they implement every week. They have meetings with other physicians to discuss each patient and how to implement treatment.  Sometimes, they even have meetings with specialist doctors from across the country.

I was just reminded of this practice yesterday when a nurse from the SCCA said they were planning to discuss my latest liver problem with the group of doctors.  Today, I heard the result of that discussion which wasn't all that spectacular.  As I expected, I'll be going back on Sirolimus, a drug that reduces the effectiveness of my immune system.  It's an immune suppressant, taken so that my new immune system won't fight rest of me as a foreign entity.

Enzymes?

I'm trying to focus on the positive here.  With more energy and a path to normal health, I feel like I can see the end.  The two big battles are with cancer and Graft vs Host Disease.  Both can kill and both can make my life miserable.  I know I'll beat each disease.  With every setback, I look forward to a new victory as we figure out a way to fix the problem.

The doctor called me yesterday to let me know about a new setback.  My blood test showed a lack of cancer but extremely elevated liver enzymes.  A normal score is between 10 and 40.  My score was 463.  That means there has been damage to the liver.  The doctor asked me if I've been binge drinking, otherwise it's probably GVHD.  If I have been binge drinking, I don't remember it so we're pretty sure it's GVHD.  Now it's back to the drawing board again.  I may even get a trip to Seattle out of this little medical blip.

The school year is three quarters done.  I've taught music to young musicians for 139 school quarters or almost 35 years.  With just one more quarter to go, I'm looking forward to moving on.  If I look back, I'll miss the students, so I don't look that direction.  Forward and onward to a new career... and a cancer and GVHD free life!

Is cancer beaten?

Lately, my posts have been a bit on the dark side.  Looking back at my experience with cancer and seeing so many others suffering in so many ways gave me a different perspective.  I see cancer as a very dark entity and disease that fights basic humanity.  That being said, I feel that I am slowly winning battles, one small step at a time.

In my case the problems from the side effect are lessening.  I notice it as each week passes by.  I notice an ability to walk further, to lift more and even to have a little more energy.  My posts should reflect the present more than the depressing past.  I haven't beaten cancer yet but I feel like have.  Some side effect may serve as a reminder that it's not over but I can ignore those and focus the good.  I feel like I've beaten cancer.  That's really all that matters.

The Pit of Darkness

Several months ago, I talked about the pit of darkness.  While resting in my small apartment, in Seattle, drugs were racing through my body and mind.  I don't believe I had hallucinogenic episodes but extremely loud and visual dreams and daydreams were common.  I frequently visualized a huge, dark hole.  It was about twenty feet wide and appeared to be dug out solid rock.  There wasn't a bottom, just depth that represented further sickness and misery.  Falling into the darkness was death.  Several people, including myself were clinging to the sides.  Some were were just trying to avoid the inevitable fall and others were putting all of their focus into a real or sometimes futile attempt to climb out and stand on firm ground, left wishing they could help those left inside.

My misunderstanding was that climbing out the pit would happen sooner than later.  Leaving the SCCA would be the marker for climbing out and eventually standing on two feet without worry of falling.  The truth was and is that leaving Seattle was a huge step in the right direction.  After, thirty-four weeks of daily treatments, leaving that behind for a somewhat normal life was a huge leap toward being healthy.  But even though that step was taken one year ago, I know now that my vision of complete health was just a dream.  It's still a dream that I will achieve in real time, just not quite yet.

As for the dark, bottomless pit also known as cancer, I have more hatred for it than anything else.  The fact that I have or will conquer cancer makes me hate it even more.  I know the pain and the cost that it took for me to beat it.  Others have paid more and given more of themselves in pain and suffering and still slip away to the disease.  I struggle with accepting my own success with cancer.  I don't deserve it more but then I didn't deserve cancer in the first place.  For now, my hand is on the surface.  Before long, I will be able to pull myself out of the pit and walk away.

And yes, if you are wondering, I'm still taking a several drugs and yes they still give me vivid and weird visual daydreams that I can't extinguish.

The ugly, the bad and the good

Ugly:  Rash spots that refuse to leave; Cancer

Bad:  Neuropathy.  Renewed finger cramps.  This is especially bad when I'm playing my tuba in a group.  Suddenly, a finger will press down a valve that shouldn't be down!

Good:  Feeling pretty good.  I'm able to overlook the minor GVHD symptoms and pretend they don't exist.  Take that, cancer!!

Deception 2

For the past several months, starting with the initial discovery that I had cancer, to the worse discovery that it was a nasty version of myeloma, only one consistent belief has gotten me through the sickness and pain.  When things looked dim and odds of mortality were depressing, when a doctor told me to get my affairs in order and when sickness from treatments made me more sick than I could have imagined, my trick to get through it all was nothing more than a deception.  It was a lie that I told myself and others around me.

Tonight was the last parent conference of the year.  Like my students, the parents of my students are very kind and exceptional people.  They all asked how I was doing when our purpose was to talk about their children.  One parent happens to be a health care professional and is very aware of my medical situation.  She asked about my health and my answer made me aware that I have been dishonest with myself and everyone else for months.

I told her that I expected to be completely healthy by now, that having GVHD over fifteen months after the transplant wasn't what I expected.  The truth is, the doctors told me that I could have these symptoms for the rest of my life.  They truly don't know how long GVHD will last.  They said the best possibility is it could last just a year after transplant so I took that bit of information and ran with it.  I told everyone that complete hearth was around corner.  Within a short time, I would be as healthy as ever and this entire cancer thing would be nothing more than a bad memory.  I believed it and I shouted it to anyone who would listen.

I grabbed a sliver of a possibility and owned like it was guarantee, a promise to myself that a one year timer would eventually wind down and I wouldn't have any symptoms for the rest of my life.  The doctors just said it was a possibility, not a probability.  Now that I'm beyond that deadline of one year, and GVHD is still playing havoc with my body, I have no choice but to admit that I was wrong.  I was wrong to think a one year timer would bring complete health BUT I was also right to believe it.  Believing is hope and without hope, there isn't much to live for.

Nothing has really changed.  I'm getting much better and eventually the hope that may have been a deception at one time will turn into the truth.  I know that complete health is in the future.  I just don't know when.

GvHD keeps on giving

I guess it's not called "chronic" Graft vs Host Disease for nothing.  Fifteen months after the big transplant and it's still showing itself with mysterious symptoms.  This was a redo of the dozens of symptoms that used to happen at least twice per week.  I developed a pretty bad body rash about three weeks ago.  It looked like measles but didn't spread to the face, thank goodness.

First it was thought of as a drug reaction.  After a couple weeks off of the drug without getting better a biopsy showed that it's GVHD again.  The good news is just knowing.  Now I'm taking more steroids than I've ever taken and the red dots are jumping off of my skin.  I'm embarrassed to check but there is probably a trail of little red dots everywhere I go.

The side benefit is the energy picked up from the steroids.  It's like a constant flow of caffeine.  I can stay alert all day and the ultimate test was a staff meeting this afternoon.  I stayed awake for the entire meeting!

Past or Future?

This blog was started to keep people updated on the progress of fighting cancer while I was away last year.  The shocker is that the blog is still going on mostly due to encouragement from a few individuals.  My expectation was that there would be nothing to report at this point.  The cancer and symptoms would be long gone and my health would be as good or better as it was five years ago.  Foolish optimism kept me believing and support from people made me feel worthy of looking forward.

I looked forward because the present was miserable.  I looked to the past because the present was miserable.  The past taught me that happiness and health are reachable and the future was a dream to live in while the misery of the treatments were testing my strength.

Just yesterday, the doctor took a pound of flesh for a biopsy (maybe it was just a gram).  She said it looks like Graft vs Host Disease but she won't know for about a week.  In the meantime, I just deal with hundreds of red dots spreading down my legs and arms and hopefully not to the face.  My disappointment isn't that I still have multiple weird symptoms.  I just didn't think I would have them this late in the game.

When I was at my weakest, I used to dream about the future without health issues.  That future was today.  It's like getting a promise that happiness and health will be delivered to my door in January of 2017.  It didn't arrive.  The promise of happiness and health was a promise made by myself.  It kept me going.  Now that the problems are still going on, I feel tricked and cheated.

There are three selves, past present and future.  The past was hopeful but not often correct, the present is looking forward to a day when it can live in the present and the future still provides a sanctuary.  It's a sanctuary that I still believe in.  It allows me to smile and move on.

Ups and downs

It has been nearly fifteen months since the donor transplant, fifteen months of getting better on a path to normal health.  If the past fifteen months represented a steady incline to better health, I would have the powers of a superhero by now.  Instead, each month represents a series of peaks and valleys with slightly more peaks as time goes on.  It's back to the doctor again to figure things out.

The muscle pain everywhere and now the body rash which looks like measles must be caused by something but so far the doctor's first guess was a miss.  Going to work is the only thing that keeps my fingers from scratching and it also keeps me moving.  I have an honesty dilemma whenever somebody asks "How are you doing?"  It's a kind thing to say but believe me, there isn't time for the truth so I tell them what they want to hear.  "I'm doing great!  Thank you."

Draft: letter to donor

I've rewritten this letter about six times now and I haven't been happy with any version, including this one. It's difficult to tell someone that keeping me alive has improved the lives of others. It sounds very arrogant. I would like to think I have made a difference, teaching children for so long and I believe I have but it's just difficult to put that in words.

This letter will probably be translated into whatever language is needed. I haven't sent it yet so if you have suggestions, please let me know.

Hello.  I am the recipient of your stem cells from November, 2015.   Thank you for your sacrifice which ultimately saved my life.  

Just over two years ago, I was diagnosed with multiple myeloma or bone marrow cancer.  After some genetic testing, it was determined that I should have two stem cell transplants, one with my own stem cells and one with stem cells from a donor.  Without the second transplant of your stem cells, the doctors told me I would not survive more than two or three years. The treatment took almost nine months in Seattle, Washington, USA.  It’s remarkable to me that somebody like you would go through the painful donation process for a complete stranger but please know that you saved my life and I will continue to work to improve the lives of others.  

At this time, they can’t find any cancer cells in my bone marrow.  It isn’t a complete cure but I will probably live a healthy life for decades to come.  I’m not supposed to give you my name yet but allow me to tell you a little about myself.  I’m a 57 year old male, living in Alaska, USA.  I teach music at a high school and I perform with various orchestras.  In the Summer months, I commercial fish for salmon.  

As a teacher, I look at nearly everything as a learning experience.  I shared details about my cancer treatment with my students through a blog. Many of my students and of course my family and friends were very concerned about my health and survival and they all deeply appreciate what you have done. Thank you for your huge act of kindness.

It's cold!!!

It's cold outside and predictions are for even colder temperatures.  They say it cold reach minus 30 in a week or so.  That's cold by any standard but I've never dreaded the cold as much as I do now.  The science is beyond my understanding but for some reason, everything has felt colder since the transplant.  I often shiver at room temperature.  No matter what the temperature may be, it feels colder.  Lately, it's been around 0 degrees and it seems to me like it's 15 below.  We'll see how I do with seriously cold weather.

I'm still working on a letter to the donor.  The letter has been written and discarded at least three times.  There is so much to say yet I'm having trouble saying anything.  I'll post the letter as soon as I write one that works!

Memories

Thank you for the suggestions regarding the anonymous letter I'll be sending to my donor.  Some very thoughtful ideas were suggested.  It's Winter break from school right now so I'll write something to my donor and post it soon.

The latest treatment and cancer news is nothing more than scheduling booster immunity shots.  The fistful of medications are the same, the minor aches and fatigue are the same and hopefully the lack of cancer cells invading my body is also the same.

As time passes, memories of my concentrated treatment is fading.  There are people and procedures I'll never forget but the day to day detail is becoming a blurred memory of mostly pain, misery and emotional turmoil.  The one daily observation that will stick with me forever is the sadness and life changing agony of cancer patients and family.  Some were in a loosing battle, others were in constant state of shock that cancer had found them.  The fight against cancer is so real, many have devoted their lives to that fight and others have given their lives while their friends and family are left to ask why.

No Donor Exchange (yet)

The rules are, wait one year after the transplant and then a request can be sent to the transplant donor to exchange names.  I filled out the form on November 9th, making the request and I received the answer just the other day.  It said that the clinic where the donor gave the transplant has a different policy.  They require a two year waiting period before names can be exchanged.

This was disappointing to say the least.  After waiting an entire year, I was anxious to learn something about my donor.  Since all of my blood and bone marrow came from him, it seems like we have a personal connection.  But now, I'll have to wait another year.  They did throw me a bone in another way though.  They said I can write an anonymous letter to the donor.  I'll be working on that next.

Beside the obvious "Thank you saving my life" kind of letter, I'll try to come up with something.  Any ideas?

Two Years

Yesterday was a significant day.  It was exactly two years after finding out that I had cancer.  The doctor told me to get my affairs in order, that I had between one to three years left.  Just one year was probable.

Remembering the visit to the doctor and the following two years brings back so many good and bad memories.  But two vivid thoughts dominate my dreams, both day and night.  One is that time flies.  I remember that doctor visit like it was yesterday.  It was devastating news that would change my life in so many ways.  There was tremendous pain and sickness, there was soul searching and in the weakest of times, I questioned the value of life itself.  But after two years, I know I'm a better person for having gone through it.

The other overwhelming memory is about a huge battle, a fight that had more peeks and valleys than I could count.  It was much more than a fight for survival.  It was a day to day vow to defeat the constant and ever changing aches and pains and sickness.  When my body begged to stay down, I would get up.  When my legs became weak, I would try to walk.  When I felt miserable and depressed, I would write a humorous blog.  

I viewed every ounce of pain and every sickness as the work of my greatest enemy, cancer.  Most problems were caused by reactions to drugs but all of the drugs taken were due to cancer.  I thought of cancer as an evil entity who wanted me to hurt, wanted me to be sick and eventually wanted me dead.  I felt a need to show the disease that it's my body and soul.  If it were to eventually win, it wouldn't be easy.  I would resist every step of the way.

Reacting to cancer in this way may not have extended my life, it may not have even contributed to my relatively current good health.  It certainly wasn't the bravest approach nor was it a sign of any perceived toughness.  Reacting with a purposeful resistance was simply my way to get through each day without feeling defeated.  For the past two years and even to this day, I can sleep at night knowing that I did whatever I could to beat my greatest enemy.  

Don't be afraid

"Please don't be afraid of me."  That's a message that I heard from fellow cancer patients when they would display obvious signs of treatment.  Usually, women with scarves or anyone who looks weak, frail and bald are marked as a cancer patient and treated with sympathy as people would pretend to not notice that they are sick.  I can't speak from personal experience.  I was bald from chemo for a few months but I was bloated rather than frail and the sight of a bald man usually isn't a sign of cancer.

The usual reaction to a stranger meeting a cancer patient is avoidance, then an ultra polite and uncomfortable correspondence.  There is nothing wrong with asking, "How are you feeling?" or asking bluntly, "Are you a cancer patient?  My Uncle went through cancer treatment and he's doing great now."  You may be surprised.  Many cancer patients enjoy talking about their sickness.  Many more appreciate the honesty it takes to admit that you noticed the obvious. 

Worried Man Blues

It was two years ago on December 16 when a doctor told me to get my affairs in order.  He said I had one to three years left to live with three years being unlikely.  Knowing or believing that I was dying and that death would be relatively soon may have been the greatest lesson of my life.  As it turns out, that doctor was wrong.  Since then, I've notice that some of us look for things to worry about.  Many of those worries are for things that never happen.

Even with a diagnosis of death by an experienced doctor, my worrying was for nothing.  He gave his prognosis with certainty and conviction, yet he was wrong.  I heard someone say that worrying is suffering twice.  If it's just suffering once, there wasn't anything to worry about.

For the past two years, I've been told about dozens of possible health risks, many of them extremely serious, some of them fatal.  I weigh the options and make a decision to take a drug or treatment but I no longer worry.  It just isn't worth it.