Final Entry

I have good news and more good news.  I’ll pass on the good news first.  My stem cell donor from two years ago is a young German man named Martin Lucas.  He lives in Munich but is traveling to the United States, (Georgia) for an internship later in the Summer.  We have corresponded for just a bit through email in English.  He seems very bright and extremely kind.  Maybe I can pick up some of his intelligence through the transplant.  I still have some questions for him about allergic tendencies or other immune system specifics.  As it is now, all of my blood is produced from bone marrow that came from his stem cells.  We have identical blood.  

The other news:

After talking with the Seattle doctors following my last visit, it looks like the amount of cancer cells in my body is not measurable.  The new immune system provided by my new friend in Germany is doing the job and fighting off the reproduction of those cells.  There is some question about my lungs.  The oxygen in my blood is low due to GVHD.  But if I can beat an aggressive version of cancer, this mini-battle should be a walk in the park.  I’m gong back to Seattle in less than a month to see if they can figure out what to do next.  

And finally:

This blog has been a life saver for me.  I’ve never kept a diary or really written anything down before this.  I foolishly think I’ll remember things, that is until I forget.  Writing to my good friends and relatives has forced me to think about the struggle, the pain and hardship that cancer can bring.  But more importantly, it has also made me consider the reasons for fighting such an ugly disease.  It made me appreciate life and reasons for living. 

I’ll always hate cancer.  It causes pain to children and people who don’t deserve it.  But I’m actually, in some ways glad to have gone through the experience.  I was deeply humbled to be at the mercy of such a disease and I’m definitely stronger for having gone through it.  I also have deeper empathy for those who don’t make it through their battle with cancer. 

With that, I’d like to close this blog and look forward to a future where nobody will have cancer.  I may come back if sickness reoccurs and once again, people start wondering if I’m still alive.  But my plan is to move on, smell the roses, catch some fish, enjoy the music and to be with friends and relatives. The most overwhelming strength I experienced while being sick in Seattle was knowing that I was surrounded in spirit by so many people who fought by my side.  Knowing that people were reading this blog was a big part of that.  Thank you all for being there.

Mike

Lung diffusion

Still no word from the stem cell donor...

The results of eight SCCA appointments were nearly all positive.  There are still no signs of returning myeloma cells.  There is a question about how my lungs are diffusing air.  My score was very low this time.  It has to do with converting air to oxygen for the blood.  It does explain why I get winded so easily.  They will let me know tomorrow if I need to go back before flying home.

Back to SCCA again

The next SCCA appointment is tomorrow, the 8th of December.  It includes a full body scan, a pulmonary function test and four other appointments including the all important meeting with a physician and a medical team.  They will try to determine if the cancer shows any signs of returning.  I'll give an update after the appointments tomorrow.

On bigger news, I have heard from my donor.  I’m still waiting for his permission to mention his name but he is a 26 year old, living in Germany.  He may or may not want to have a dialog beyond the one email that he sent.  He seems like a wonderful person and was glad that his stem cell donation resulted in a successful procedure for someone.  I’ll send out more details if I receive permission to do so.

Requesting Donor Information

Tomorrow, (November 6) marks the two year anniversary of the allogeneic transplant.  Some patients call it their second birthday.  I've never been able to think of it that way.  It didn't feel like I was reborn, just given an extension on life.  The two year mark is also the day I can begin the contact procedure to my donor.

The donor volunteered to harvest his own stem cells to donate.  First, he took a drug that encouraged the  stem cells to move into the bloodstream.  Pain often accompanies the process.  It's a deep pain as the stem cells are forced out of the bone marrow.  The required number of cells needed is around ten million.  The donor volunteered to lay in a hospital bed from one to three days, motionless with needles stuck into both arms.  An aphaeresis machine circulated his blood out of one arm and into another while keeping and storing stem cells.  He did this for a complete stranger, somewhere in the world who happens to share several similarities within our blood.

It's my mission to at least find out who he is.  I'll send a request along with a letter of introduction tomorrow.   Hopefully, my next blog entry will shed some light on his identity.

Donor contact

On November 6, two years will have gone by since the big transplant from an unknown donor.  That's the mark when I will be allowed to contact the donor and ask if he would like to share information.  I'm already looking forward to knowing something about him.  At the time, I was only told that my donor was a twenty-four year old male from Europe.  Now, he would be a twenty-six year old male from Europe but that's not much to go on.  Since his stem cells were injected into my body, growing new bone marrow and therefore new blood, it's hard to deny that we have a connection.  Hopefully he will be as curious as I am.

I don't expect to become best friends and I may never meet him.  I just want to say thanks and promise to make his painful stem cell extraction worth while by doing two things; surviving and doing something good in the world.

The blog

Why do I keep writing this blog?  It started as a way of keeping friends and family informed.  Early on, after my diagnosis with Multiple Myeloma, I realized people were cautious about asking how things are going.  They were afraid of an uncomfortable answer.  My attitude at the time was to encourage people to ask or if they would rather, just catch up by reading the blog.  It was a self centered endeavor.  It may have even been a bit narcissistic to assume people wanted to read how "I" am doing in a fight with cancer.

One reason that I have continued to write is at the request of some very influential people in my life.  They have requested that I keep writing to inform them of the continued saga of a battle with an incurable disease.  Since I am well over a year beyond my intensive treatment in Seattle, it's too early to claim victory but I'll do it anyway.  If for no other reason, flaunting my relative good health is a slap in the face to one of mankind's greatest enemies, cancer.

To be completely honest with myself and a few readers, writing this blog is a message to myself.  It's the one place where I can vent about the disease that tried to take my life.  It's also the one area where I'm not afraid to express my fondness for life and reasons to go through extraordinary measures to keep living.  As an extension of this blog, I'm considering writing a longer version.  I wouldn't call it a book, since that requires publishing and an interested audience.  But I will label it as my own memories of this horrendous experience.  If I am the only person who ever reads my experience with cancer, it would be worth writing.  No doubt, everyone has life experiences that are worth remembering.  My own memories bring me happiness, sadness, joy and pain.  To me, that's what makes life worth living.

Reunion

It’s been forty years since I graduated from high school.  Nearly all of my Washington friends are those I met in school.  As expected, many drifted apart but some stayed close for the thirty-four years I’ve lived in Alaska.  When I decided to attend my forty year high school reunion, I was mainly concerned that I would see a bunch of old folks in attendance.  The truth was, everyone looked great and they seemed to be the same people as they were in high school.

As far as my time of being sick with myeloma, I certainly didn't bring it up but many heard about it and some were even surprised to see me, still breathing and relatively healthy.  There was a sad list of friends who didn't make it to the age of fifty-eight.  It was difficult to read those names, mostly because they died early and were wonderful people.  It was selfishly difficult because I knew that I could have and maybe should have been on that list.  I think having cancer and seeing people die around me doesn’t make me fear death but it certainly makes me cherish life.  I’ll fondly say goodbye to those who are gone but I’ll grasp the friendship of those who are living.  We’ll all cherish life together.

Goodbye to: Tommy, David, Ty, Dwight, Carrie, Richelle, Ann, Brett, Jim, Peter, Bill, Deanna, Charlie, Laurie, Ross, Greg, Kerry, Charles and Vernon.

Life moves on

As life moves on with more distance between switching out my old diseased blood with new blood from a total stranger, I'm beginning to see a more realistic view of multiple myeloma.  I am compelled to admit that I currently HAVE multiple myeloma. Even though I've told anyone who asks that it's pretty much gone from my body, the truth is, it's not curable.  Less than half of myeloma patients live more than five years after diagnosis.  The chances of a return of serious sickness is almost a certainty.

When people ask "How are you doing?" regarding the cancer, I'm not able to answer with the truth according to science.  I answer with my own truth, the way I want to live my life and the only way I know how to move on.  The daily pains don't really exist if I don't let them change my way of life.  Pain is nothing more than my body saying there is something wrong here.   I answer with "No kidding.  You just had a bone marrow transplant.  Your blood belongs to somebody else.  Now lets move on and do something fun!"

A myeloma support group sent me a link of well over a hundred shirts and mugs with sayings about myeloma.  Some are religious, some are in memory of a lost loved one.  Three of the phrases stuck me as being close to home.

https://m.facebook.com/photo.php?fbid=649988498475097&id=493615150779100&set=a.663122670495013.1073741831.493615150779100&source=54

I'm always scared to say
how I really feel
No one wants to hear
"It's getting worse."
Everyone wants to hear
"It's finally better."
But, what if it isn't?
What if I'm lying?

I may have Multiple Myeloma
But Multiple Myeloma does not have me

While in the clinic for several months, this last saying defined how I got through the sickness each day.  I remember forcing a smile whenever I saw others.

Just because you see a smile on my face
doesn't mean I'm not in pain
It means that I'm not willing to let my 
Multiple Myeloma steal my life.

Admitting that I still have the disease doesn't change anything.  I'll still tell you that I'm fine and there isn't anyone who can convince me otherwise.

Withdrawal

When the peripheral neuropathy started back in 2015, I was prescribed a drug called Gabapentin.  Neuropathy is a both a numbing and burning in the feet or hands, common with diabetes.  In my case the first chemo drug given at the start caused the neuropathy in my feet.  The doctor prescribed Gabapentin to sooth the pain and discomfort of the neuropathy.  I took that drug for a couple years but it didn't seem to help.  Finally, the dose was doubled to see if that would make a difference.  The burning was still keeping me awake at night so with consultation fro my doctor, it was decided that this drug was simply not helping.  So I quit.  I went from 1,200 mg each day to zero just a few months ago.

Just yesterday, I discovered that Gabapentin is not a drug that can be stopped suddenly.  Severe side effects occur as the body goes through withdrawal symptoms.  Anxiety, nausea, muscle pain, suicidal tendencies and many other withdrawn side effects.  I had no idea.

The only huge side effect that I noticed was muscle pain.  It was severe and even crippling at times.  It baffled myself and the doctors but I'm sure they didn't remember that I suddenly went off of Gabapentin.  They say this isn't an addictive drug but the body does become dependent on the effects.  The withdrawal is described as similar to withdrawal from opioids.  I have had too many new experiences due to having multiple myeloma.  Now that I went through a major drug withdrawal, I'm ready to stop going through weird medical crises and start living a normal life.

Old blood

Cancer patients have to give up parts of their former selves.  They lose heath, wealth, hair, strength, productivity, identity, the right to dream and the hope to stay alive.  I lost most of those two years ago and have been trying to regain them ever since.

One loss that just occurred is gone forever.  In July of 2015, my first transplant called an autologous transplant involved removing my own stem stem cells, killing my bone marrow and replacing the stem cells to grow new marrow.  They did this knowing that an allogeneic transplant (with cells from a donor) would be needed at later date.  The procedure of removing my own stem cells usually takes a few days to get the recommended eleven million cells.  For unknown reasons, my body "overachieved" as the doctor put it and produced forty-six million in just one day.  The result of having extra stem cells was an opportunity to freeze them in case they would be needed at a later date.  

So the last remnant of my former stem cells (thirty-five million of them) have been on ice for the past year and a half.  They offered to keep them for a payment of just under $500 for a year.  If they are discarded, the blood that got me through most of my life would be gone forever.  With advice from my medical team, I let them go.  It was a bit of a difficult decision since there is no going back.  But then again, I've only had one thing in mind for the past two years and that is to only move forward.

Appointments done

The results are in. The cancer is undetectable, the GvHD is bizarre and my next appointment won't be until December.  My last appointment for this visit was yesterday. It was with an eye doctor across town in Seattle.  There are a few GvHd symptoms that can occur in the eyes.  Although the nurse was friendly and the doctor seemed competent, it reminded me that the staff at the SCCA is world class.  They display a professionalism that just doesn’t occur in other medical offices.   

As far as my medical status, the news is that I am "perplexing."  That was the term the nurse and doctor used to describe my status.  This is nothing new.  Similar descriptions were used for my GvHD symptoms for several months.  I keep displaying symptoms that only occur to a tiny percent of transplant patients.  It's neither good or bad news.  The cancer is virtually gone and that's all that matters. 

Back in Seattle Again

To the tune of Gene Autry's "Back in the Saddle Again"

Back in Seattle again,
Back to getting treatment with my friends,
Where they're fighting a disease,
And putting patient's mind's at ease,
Back in Seattle again

The striking thing about attending the Seattle Cancer Care Alliance is to see the dozens of new patients.  I can't help comparing them to the hundreds patients I met during my own treatment.  They have new faces but they have the same disease.  Some will beat it and some will not but all of them are giving it their best, putting their lives in the hands of the latest technology and care offered by the SCCA.

Off to my appointments....

Memories

Retirement is going to be a treat.  My last day was two weeks ago but I worked eight more days just to set up the band room for the new teacher.  He's from out of state so everything will be new to him. At least he will have a good start with an organized room and notes about the classes.

In just six days, I'll be heading south again to the SCCA for a one and a half year follow-up from the allogeneic transplant.  That was the final stem cell transplant from a donor in Europe.  It occupies my thoughts almost constantly with memories of several months of treatment.  Some are positive memories but most are not.  Much of the time was spent trying to turn depression into happiness or using humor to distract from the reality of cancer.

Still, I look forward to going back.  I so much enjoyed the clinic staff with their positive and friendly attitude.  I admired their care for people as well as their hatred for the disease.  I am likely going to be told that everything is fine with no signs of cancer.  The medical staff will view my case as another victory in an ever growing list of survivors.

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.