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.

Lots of Care

LTFU.  That's the department name of the Seattle Cancer Care Alliance, Long Term Follow Up.  They keep track of transplant patients after we leave Seattle.  I talked with the charge nurse from LTFU today.  She wrote down all of my current symptoms and health details, then she will have a meeting with the doctor tomorrow morning to decide how to proceed with different medications or even a physical visit in Seattle.

The amount of care from this place isn't like any other that I have encountered.  How many doctors will keep track of their patients months after treatment and constantly monitor new treatment and medication options?  For the SCCA, LTFU, it's a matter of routine.  I may have had a deadly disease that could even return some day but with this type of care, I'm not a bit worried.  They will know if anything returns and they will take care of it if it does.

GVHD is Great!

GVHD is the enemy that doesn't know when to quit.  Graft versus Host Disease attacks nearly all parts of the body and shows itself in so many ways, it's hard to know when a particular health issue is GVHD or something else.  It's a rash, it's finger cramping, it's extreme dry eyes and blurred vision, it's a cough, it's mouth sores or just about any irritating and odd symptom one can think of.  So far I've had several of the common issues and of few uncommon symptoms as well.  I thought it was over or nearing an end.

The curse of GVHD is the unpredictability of it's attack.  What will be next?  Will it be a serious, life threatening problem or just a brief irritation for a few days?  Am I confusing a GVHD symptom with another illness?  These questions are asked and answered as each symptom comes and goes.  

The latest is joint pain.  It's been around for about three months but is getting worse by the day.  The medical books say GVHD joint pain imitates rheumatoid arthritis.  Getting up after sitting for thirty minutes is a chore.  Walking is painful.  But as irritating as it may be, I found a way to actually enjoy the pain.

GVHD is a the body reacting to foreign blood just as the body reacts to a kidney transplant or the transplant of another organ.  Doctors have explained that the best form of GVHD is to have "Chronic GVHD" that doesn't make the patient too sick.  They actually like to see a little of the disease.  It's a sign that the new blood cells will fight cancer rather than accept it.  My former blood didn't fight cancer cells.  If the new blood had the same attitude, I would surely have a relapse of multiple myeloma.  

The amount of sickness I've received from Graft versus Host Disease is annoying but according to the doctors, it's just right.  So whenever my joints hurt to move or walk around, I'm reminded that the cancer is being kept out of my blood.  It's a painful reminder that I'll be a survivor.  I need that reminder just to stay thankful for the technology and the medical care that saved my life.  It's a little bit of pain for the privilege of living.

Nutcracker

It's good to be back, or is it?  This is the time of year when performing musicians and music teachers are insanely busy.  Between symphony concerts, concert chorus concerts, the Nutcracker and a few brass quintet jobs, not to mention the high school Winter concert, getting a decent night sleep is a rare event.  Returning from a rehearsal at 10:30 pm and arriving at the school for a 6:30 am jazz band rehearsal is a way of life that several musicians face this time of year.  I did it for nearly thirty years but this year is very different.

Recovering from a transplant is more difficult than I expected, even though the doctors said it would take over a year from the time I left in late February.  I simply didn't believe them.  I thought those limitations were for others, not me.  Now that I'm fully immersed in a schedule that used to be just mildly difficult, I'm not sure I can be the alert musician that I strive to be at each performance.  Exhaustion is becoming the norm.

I still refuse to slow down a bit.  My problems are all because of a cancer that barely exists within me.  It's still trying to be dominate in my life and take credit for making me change my lifestyle.  I've had a handful of enemies in my life but cancer is worst, the most ruthless and the most deadly.  If I submit to the wishes of such an enemy, I'll hand it a victory and I'll sink further into it's grasp.  Instead, I'll do what I've always done.  I may yawn more but it's well worth it to be able to give the finger to cancer and live my life the way I choose.  Cancer won't change me.

Cured or not cured?

After almost two years of learning that I had cancer, my meeting with the doctor two days ago completely changed my way of thinking about the goal of life after cancer.  Apparently, the medical definition of the word "cure" is different from my way of thinking.  The doctor said multiple myeloma is incurable.  I've heard that many times but refused to accept it.  I've also heard doctors say that results for a few patients are "curative."  It gets confusing, wondering if the disease has ever been "cured."

The answer is awkward but simple.  To the medical establishment, a cure means all multiple myeloma cells are gone.  There is no sign of the cancerous cells left in the body.  Apparently, that hasn't been accomplished for this particular cancer.  So does that mean all myeloma patients are doomed to a shortened lifetime of cancer?  This is where she changed my way thinking entirely.  The answer is no.

There is an indication that a tiny amount of cancerous cells are still in my body, so few that samples of the bone marrow contain zero myeloma cells.  My new immune system and the small amount of a chemotherapy drug taken daily are enough to keep those cells from growing.  I don't have any signs of the disease, just a very few cells hiding somewhere in my bone marrow.  Seemingly healthy people may have the same thing, but their immune system is constantly keeping those bad cells at a low count so the body is not negatively effected.

The bottom line is, as the doctor said to me two days ago, "You don't have multiple myeloma any more."  She explained that having cancer is being sick or showing symptoms of the disease.  Although I contain some bad cells in my body, they are at such a low level, it doesn't effect my life or my way of life.  I can certainly live with that.  I may not be "cured" but I'll tell the world that I no longer have multiple myeloma.  I had cancer, now I don't have cancer.  That sounds sure sounds like a cure to me!

The results are in!

I'm sitting at the airport waiting to board a flight to Anchorage.

The meeting with the doctor this morning went for an hour and a half.  It was a very technical discussion about blood tests scores and the condition of my body, overall.  The short story is, everything is good, maybe even great considering the other possibilities or even probabilities.

The PET scan found nothing in the way of a tumor or any other additional growth.  The bone marrow pull resulted in a score of zero, meaning they couldn't find a single cancer cell in the small core sample of bone marrow.  The only score that needed explaining was the blood test, called the M-Spike or monoclonal spike. This test is an indicator that there are myeloma cells somewhere.  The score was 0.1 which is such a small amount, they can't actually find any cells in the bone marrow.  The doctor explained that some patients will come back after twenty years and still have a trace amount of cells.  The important part is, it's easy to live with it and allow the body and immune system to keep it at bay.  Some people have this amount of cancer cells and don't know even know it.  It's such a small amount, there isn't anything to worry about.

The doctor was extremely pleased with the results and so am I.  They're starting to board, so off I go.  I always miss Seattle.  Everything I came for is done.  I saw people who cared for me.  There were hugs and happiness due to my health.  I have to go back in six months to receive another clean bill of health.  I'm looking forward to it.

Day 2-4

The second day (Tuesday) seemed like a typical day from a year ago.  I spent some time walking while observed by a research worker.  Research of active patients is constant.  Since the Fred Hutchinson Cancer Research Center is a partner to the SCCA, they study my progress nearly as much as they treat it.  Next, I went to the oral medication department, known to the rest of the world as the dentist.  GVHD is very common in the mouth.  My cheek lining showed subtle signs of GVHD but nothing to worry about.

The last test of the day was a pulmonary function test.  After climbing into a glass cage and putting a hose in my mouth, the technician would tell me to blow, then inhale repeatedly at different intervals.   Another sigh of GVHD is respiratory difficulty.  Like before, there were signs but nothing to worry about.

Day three was a radiation day starting with a twelve hour fast.  First was a full body "Dexa Axial Skeleton" x-ray, then I went on the much more intense full body PET/CT scan.  It involved sitting for an hour as they pump a radioactive substance into my veins and then had me drink 900 ml of a sugary drink.  Once I made it to the giant scanning machine, it was just a matter holding still for over two hours from inside a tube.  The space is small with about four inches from the tip of my nose to the top of the tube.

The last day is this morning.  I haven't gone yet but it will start with my childhood immunity shots.  Shots for polio, measles and a bunch of other vaccines with be pumped into my arm.  At the end, I'll finally get to talk through everything with the doctor.  Hopefully, she'll tell me that the cancer is still gone and send me on my way.  I have a list of other question for her but as soon as that meeting is over, I'm rushing to the airport to get to Anchorage on time for the evening symphony rehearsal.  I'll pass on the news from the meeting today if I have time to post from the airport.

Day one of treatments

So yesterday was my one year anniversary of the donor transplant.  I arrived at the SCCA for a one-year follow-up set of appointments.  They will look for signs of cancer using three methods.  A bone marrow pull, a blood test and a PET scan.  Two of the tests began today but I won't know the results for a couple days.  The PET scan is on Wednesday.  I already received a score of "0" for all three tests once.  The question is, was that a fluke or will the transplant hold off the cancer cells from regrowing for longer (or forever)?  No worries, I have a feeling the news will be good.  If not, they will attack it again.

November 6, 2015 at the infusion center receiving the donor transplant.  

My oldest son, David was my caregiver at that time.

As far as the visit today, it started with fasting, then they took a record, sixteen vials of blood.  Not kidding.  The nurse joked that she would leave me with just enough blood to get to my next appointment, which was located in the famous torture chamber known as the bone marrow aspiration room.

It started, as always with some soft music in the background.  This time it was classical guitar.  It's very easy to ignore classical guitar.  It all sounds the same and I know the player has spent his or her lifetime trying to convince everyone that it's a legitimate classical instrument.  I just can't appreciate an instrument that requires a specialized, adjustable foot stool.  But back to the treatment.

An extremely kind nurse and a bone marrow lab technician were in the room.  The nurse had me lay on my side and hug a pillow.  That's their version of biting a piece of leather for the excruciating pain that is about to come.  She pulled my trousers down just a bit so she had a clear view of my hip area.  She shot some lidocaine into the skin and even explained that she shot some lidocaine onto the surface of the bone.  Then came the fun part.  

She drilled into my hip by hand, sounding like door creaking with each turn.  Her comment that my bone is very dense should be a good thing but it just meant that she had a harder time inserting the tool through my hip bone and into my bone marrow.  "Can you feel that?" she asked.  That's like dragging somebody down the street with a rope tied to the back of your car and asking, "Does it hurt?"  Still, I politely answered, trying to sound tough.  "Just a little."  That was biggest lie I told for months.

Next she had to pull out the core of bone marrow.  This was the part that always hurts the most.  The problem was my bones are dense so she had to flip me on my stomach and stand on top of the bed with her foot on my backside.  With all her might, she pulled and pulled until it finally popped out.  After I regained consciousnes, I lied again and said "That wasn't so bad."

Okay, some of this might be a slight exaggeration but the real news is the bone marrow aspiration happened and I'll have the results in a couple days.

GVHD Fading Fast

I've been dealing with GVHD symptoms for several months.  Headaches for days, muscle cramping, swelling glands, GI issues, vision problems and above all, overwhelming fatigue.  It started soon after being released from the clinic last February.  The symptoms kept plaguing me for months until about recently.  About two months ago, they actual started to attack less frequently.  Now the only lingering symptom is fatigue.  There are moments when my legs simply won't travel and my body screams for rest.

The doctors said it usually takes about a year for the body to get used to the new blood.  It will be a year on Sunday so it looks like they were right.  This Sunday will be one year since my allogeneic transplant.  The people at the SCCA call a birthday since my bone marrow and blood will be one year old.  I already have too many birthdays but I'll still celebrate by traveling to Seattle on Sunday for four days of medical testing.

Now that I have essentially outlived GVHD, the question for next week is, will I outlive the cancer?  I keep you posted.

Nervous?

Should I be nervous?  My follow up appointments start one week from today.  They're going to do an aggressive search for cancer throughout my body.  They will also check on Graft versus Host Disease and a bunch of other symptoms that could be signs of something terrible.  The results of those tests will no doubt determine how I'll be for the next year or so.  They will most likely determine how long I'll live.

When I look at the possibilities, I know that I should be worried.  I should be nervous of what they might say or at least anxious of what they may find lurking inside my bone marrow.  Instead, I'm content with whatever they throw at me.  If it's great news, I'll celebrate.  If it's bad news, I'll move on to attack it.  Either way, I'll be fine.  

I don't really understand my genuine lack of concern.  It may a blessing or it may a curse but so far I haven't lost any sleep over what they "might" say.  Maybe it's faith in myself or faith in my doctors ability to keep me alive.  It may even be foolish confidence.  Whatever the reason, I'll cross that bridge next week and I will share the news with whoever may be curious.

Nostalgia

Nostalgia, fear, warmth, anger...

Those are some of the very mixed emotions and feelings that I have while preparing to go back to the Seattle Cancer Care Alliance for a one year follow-up appointment.  I'll spend four days reliving the appointments, the blood draws the painful tests and the hundreds of questions regarding my health.  They will ask me to participate in research.  They will make me fast, they will collect bodily waste, they will pull one or two pieces of bone marrow from my hip, they will give me several shots and who knows how many other tests and procedures that they can fit into four days.

My return stirs feelings of nostalgia for a place that was about healing and about life.  Returning also reminds me of the emotions from other patients, particularly the fear of death and the sadness of knowing death is near.  The entire clinic was also about warmth and comfort for those in need.  The medical staff cared deeply about the well being of their patients.  I felt that warmth every day.  And finally, returning to the SCCA reminds me of the constant anger that I felt toward the evil disease that was changing so many lives without mercy and without remorse.

I'm happy return, regardless of the emotional good and the bad.  I should always feel the anger and the sense of fear from other cancer patients.  As I have started a normal life after the treatments, those feelings have unfortunately faded.  I want those feelings to be with me for the rest of my life.  I owe it to other patients and to those who have devoted their lives to fight cancer.  I'll always remember, always allow my body and disease to be studied and I'll always ask, "What can I do to help wipe out this disease?"

Step by step

New discoveries and research of cancer treatments are being constantly introduced.  A question that must run through every cancer patient's mind is, "What new medicines are being introduced?  Is there a cure around the corner."  I certainly asked this of my doctors and so did others who were being treated last Summer.  The answer was always disappointing.  The doctors would list a handful of new treatments and drugs but the results of testing revealed that the improvements were minuscule. 

Three new drugs have recently been released for treatment of multiple myeloma.  The most promising is a drug called ixazomib.  It was tested on patients who have had a relapse after one prior treatment.  But the results of testing show that this drug increases life expectancy for myeloma patients from just 14.7 months to 20.6 months.  

Don't get me wrong, an additional six months of life is a wonderful improvement.  The research and development of this drug probably took years.  Any advancement is a good thing and the people searching for drugs to fight cancer are heroes.  But short of a cure, it's not good enough.  There will some day be a cure for multiple myeloma and all of the other cancers.  That cure exists today.  We just don't yet know what it is.  Until then, people will die, others will suffer.  Cancer will keep devastating families with fear and destruction.  We have to find a cure.  But as my doctors said over and over, it takes time, lots of time.

Who is my donor?

What do you say to someone, a complete stranger from another country, who volunteered to save your life?  My allogeneic transplant happened one year ago on November 6th.  On that date, one year after the transplant, I can send a message to that individual, offering to exchange names and contact information.  If he agrees, it will open the channel for me to contact him and thank him for saving my life.

I know all too well what he went through because I went through it as well.  The first transplant was called an autologous transplant.  It was a reboot of my bone marrow and blood with my own stem cells.  That transplant happen a bit earlier on August 20.  Before I received the transplant, they had to extract stem cells from my blood which is the same procedure my donor volunteered to go through in early November.

The process involves taking a drug that increases the amount of stem cells in the blood.  The drug causes pain in the bones as the stem cells are pulled from the bone marrow.  For some, the pain can be excruciating.  Most of the time, it's a mild pain from the pelvis and areas of high bone density.  The next and final step is to lay in a hospital bed with an full time attendant in the room.  Two IV's, one in each arm circulate blood into a centrifuge machine which extracts the stem cells and return the blood through the other arm.  The patient is required to be completely still for several hours each day and the entire process can take up to four days.

That's what a twenty-four year old male from Europe did to donate stem cells to a fifty-six year old male in the United States.  The two who were selected as donors before this individual either backed out were not compatible for some reason.  I am forever grateful to my medical staff, friends and family and several strangers who offered support in so many ways.  This individual somewhere in Europe donated a part of his body to be a part of mine.  It's an odd feeling that my bone marrow and blood came from another person.  But it's even more remarkable that somebody had enough compassion to give so much to a person they may never meet.  If either of us doesn't want to know the name of the other, we'll remain strangers forever.  My hope is to find out his contact information and start with a simple "Thank you" or "Danke" or "Merci" or "Gracias" or even "Takk."  I'll find out which language to use in less than a month.

I Concede (just a little)

I have to admit it.  Getting back to full health has been a much more difficult road than I ever imagined.  Telling myself and others that I'm "Nearly 100% healthy," doesn't help when I have trouble walking more than a hundred yards, or when my legs decide to buckle after standing for fifteen minutes.  My optimism doesn't correct my vision when I can't read music due to a common eye problem cause by GVHD.  It doesn't help that getting over a simple cold that lasts for nearly a month due to a weak immune system.

I cherish my own resolve to beat cancer.  It has given me strength to fight, confidence to move on and the certainty of eventual health.  Admitting that it has been a tougher road than expected is as far as I'll go in conceding to cancer.  The day I concede more to this disease is the day my life will start a downward slide toward an end.  That will never happen.

By the way, I'm "Nearly 100% healthy!"

Brokaw

Tom Brokaw recently published an Op-Ed article in the New York Times, " Learning to Live With Cancer."

http://www.nytimes.com/2016/10/02/opinion/sunday/tom-brokaw-learning-to-live-with-cancer.html

Mr. Brokaw was diagnosed with multiple myeloma at the age of 73.  He wrote a book about his experience and has been a champion of cancer related charities ever since.  Every version of multiple myeloma is different but much of what he is still going through three years later is similar to the symptoms of others diagnosed with multiple myeloma and even those diagnosed with different versions of cancer.

The only part of his dialog that I can't accept is calling multiple myeloma incurable.  He also said the disease has a current patient lifespan of five years.  No doubt, his information is based on real data but I would argue that all data is old.  There are no statistics for individuals who were just diagnosed with this disease.  The statistics are not even out for those who picked up the disease three years ago. Simply put, they haven't died yet.  Those statistics are based on measuring death rates.

I respect Mr. Brokaw's writing.  He shared something deeply personal which can only result in more public awareness and hopefully help to advance a cure.  He has lived a life of truth and integrity.  He may be one of the most respected individuals in the country.

Mr. Brokaw said he is tempted to identify himself as a "Cancer Patient" as well a "Journalist."  I understand his changing identity but if I were to see him some day, I would encourage him to identify himself as a journalist and someone who may very well beat cancer.  Decades from now, when Mr. Brokaw eventually passes away, his part in the medical statistics will be that of a cured multiple myeloma patient.  I know that will be my role as well.

Another sad day

I noticed another Anchorage teacher just recently passed away due to cancer.  I didn't know her but she was very young, a teacher of high school students for just two or three years.  I noticed my reaction to this sort of tragedy has changed dramatically over the past two years.  We all mourn at the passing of someone, especially somebody so young who should be looking forward to a long and wonderful life.  Everyone is saddened by such a tragedy.  Everyone asks why?

I've met cancer face to face, spent day after day, week after week and even worse, minute by minute suffering due to this filthy disease.  I tried to match each minute of pain with my own minute of adamant defiance and a vow to beat my cancer and take back my body and my life.  At times, my struggle seemed to go on without an end in sight.  The attacks were relentless without any sign of weakness in my enemy.  My battle was and still is deeply personal.

When a young, beautiful person is taken, I feel a visceral hatred and even anger to an enemy that I know all too well.  For all of us, it's a very sad day.  For me, it's also a loss to an adversary who represents an unmerciful evil, an evil against all of us.  Someday, we'll beat cancer completely.  Until then, it will hurt as many of us as possible, young and old, no mercy.  My dream is to grab cancer by the throat, and put an end to it's miserable life.  It will happen, just not soon enough.

Lollipop?

The details for the next Seattle Cancer Care Alliance appointment are beginning to fall in place.  Since I had two transplants and the second was the big one, the date of that transplant is a very important day to remember.  The next appointment is meant to fall on the first year anniversary of that date.  They call it a birthday.  It's the day I took on the stem cells of a total stranger and eventually accepted his bone marrow and blood as well.  November 6, 2015 was the day of my allogeneic transplant.

The follow-up appointment will last four days starting on November 7.  I know they will pull some more bone marrow from my hip.  This will be the eighth time for that procedure.  They will poke around, looking for problems and hopefully not finding anything.  On the last day, before I race back to Alaska for an evening symphony rehearsal, they plan to give me a redo of my immunization shots.  Since I have new blood, all immunity shots went away with my former blood.  The last time I received those shots, I remember receiving  a sugar cube and a lollipop.  I may be setting my hopes too high but I firmly believe going through a stem cell transplant and getting sick for several month due of the transplant deserves another lollipop.  We'll see.

Good News!

The oncologist appointment on Monday was in part intended to reveal the MRI results.  Specifically, is there a tumor on a rib in my back?  For some reason, the MRI didn't take pictures of the ribs in my back.  Instead, it did a full scan of my spine, which I'm glad to say doesn't have a tumor.  Regardless of the lack of information, I'm not worried.  The pain has finally reduced this week and tumors only get bigger and cause more pain so I don't have a tumor.

In other news, the doctor also gave me results of a monoclonal spike test.  It measures cancer in the blood.  When I started this process almost two years ago, the score was about 7.8 which is pretty high.   A few months of chemotherapy in Anchorage brought it down to 2.6 but it would not go down any further.  The first stem cell transplant reduced it to 0.2.  Last June, it was 0.1 and now, it's 0.0!!

Getting zero on a test score has been something I have feared for all of my life.  Getting zero on this test is best news I've had in months.

Dreams

I just woke up, dreaming of living in the small apartment in Seattle again.  The foggy dream was full of despair and even fear.  It was about sickness, misery and finally, hope.  The dream showed people passing away from the same illness as mine.  I once again felt the pressure of the dark side of cancer, insisting that I give in and allow it to completely take over my body and soul.  

Then, as before, I also felt the same comforting hope with an absolute certainty that I would survive.  That hope was my security during treatment.  It kept me positive and it may have kept me alive.  I viewed all of the sickness, all of the pain and all of the relentless nausea as a temporary delay to achieving full health.

I understand why these dreams are coming back.  My temporary sickness is just a cold or flu but for some reason, it seems much worse than it used to feel.  It involves shaking from extreme chills, followed by a high fever, popping in the chest and other standard symptoms.  This isn't really worth reporting but for some reason, the cancer doctors would send me to the hospital if they knew of my current condition.  I'm also faced with the question of a possible tumor on a rib in my back.  That explains the "fear" part of the dream.  I'll see the MRI results on Monday.

I suppose that my current high fever makes me somewhat delirious and therefore not responsible for my own actions or words.  I should take advantage of that by emailing people to tell them what I really think.  But it's almost 4:00 am.  I'll let the security of hope and the positive energy of my own resilience put me back to sleep like a warm quilt and a hot tea on a cold evening.

Retirement?

I believe this will be my last year of teaching.  

After thirty-five years in a field where perfection or even true mastery is just an imaginary and unobtainable goal, it may be time to try something else.  I thought I would have it down by now and retirement would happen after it becomes old hat.  The truth is, I'll never be satisfied with my own job as a teacher and I'll never reach a level where I can't improve.  Those who think they have reached that level are wrong.

Energy is still an issue for me.  Fatigue after a day of working with students and trying to connect in a way that is meaningful is still my greatest health issue.  They say my body is still getting used to having new blood from a stranger.  It is supposed to sap energy and cause all kinds of illness.  The illnesses are fading but the energy issue is something that I can't seem to beat.  

In spite of these depressing thoughts, I feel extremely lucky to be alive.  I'm still looking forward to the certainty that I will be completely cured of myeloma.  I've worried about sickness for too long. 

Steiner Celebration of Life

The celebration of life for Carl Steiner was just posted.  It will be Friday, October 21 at the Deming Log Show.  I will hopefully be able to attend and combine my trip with appointments at the Seattle Cancer Care Alliance.

My Cousin Carl

Today was a terrible day.  I heard the news that my cousin, Carl Steiner passed away yesterday.  He had Acute Myeloid Leukemia.  

Several months ago, I ran into Carl at the clinic of the Seattle Cancer Care Alliance.  Over the past year, I heard about the passing of several fellow cancer patients.  Each time the news came, it seemed to hurt a little more.  This time, well, he's my cousin.  It's not right.  

Carl was a high school teacher, a banjo player and an absolutely nice guy.  When I think of his fight against this miserable disease, he won every part of it.  When I would see him at the clinic, even though he was in pain, he would smile.  His story with cancer was heartbreaking but he seemed more concerned with my condition.  Cancer may have eventually taken his life but it didn't break him.  He was a beacon of positive hope, surrounded by people who were in despair and felt hopeless.  He was my hero.

(Cousins)  Carl Steiner and Mike Martinson at the SCCA

Stayin' Alive

Two school days with students so far...one hundred, eighty some to go.

The difference between this year and the end of last year is huge.  I can work the full day without exhaustion, confusion or a feeling of bewilderment.  I had gotten used to being weak and tired and have forgotten what it feels like to work with more energy.  The last time I felt this normal was in the fall of 2014.  I can safely say that for now (knock on wood), I'm almost back to the pre-cancer level of fitness.  

Looking back makes me appreciate health like never before.   Now, I can more clearly see the difference between sickness and wellness.  The extreme fog has lifted from my head and my body no longer complains with each movement.   Now I can finally start to focus on life rather than just staying alive.

Goodbye GVHD (again)

It's been nine months since the allogeneic transplant.  That's when I received the stem cells of a stranger.  His blood, is now mine.  My former blood no longer exists. After nine months, my body is still resisting the new blood, still showing a stubborn dislike for the blood that has no doubt saved my life.  One after another, symptoms of Graft versus Host Disease take a turn at playing havoc with my body.  They sometimes cause pain or just inhibit daily life.  Every time the symptom would fade after a month or more of dominance, I would make an assumption that it was the last symptom, that I was finally done with this stage of the treatment and full health was within sight.  I would make declarations of being done with GVHD and ready to move on.  Then the next symptom would surface and the saga continues.

Looking back on the past nine months at over twenty different manifestations of GVHD and believing it was over after each symptom faded, I feel a bit foolish for continuing to think it will be eventually finished.  On the other hand, being foolish has never been a great personal concern.  I refuse to expect more sickness, more misery and more pain.  My latest two GVHD symptoms are fading at the same time and I still believe, in fact, I'm certain that it's over.  That chapter in my treatment of Multiple Myeloma is closed.   The next chapter is about strength, not sickness.

Getting Better

There are two battles for cancer patients who have gone through months or years of treatment.  This is something I picked up through observation of others and by trying to watch myself as a third person observer.  The first battle is physical.  That's the struggle that everyone thinks about.  It's a confrontation between the body and a disease that can result in life or death or a compromise of life with a new disability.  That battle is won or lost in a large part by doctors and nurses.  The patient plays a role but it's a submissive one to the professionals who are practicing medicine.

The second struggle is within the mind and soul.  The patient has complete control of this one.  To win this battle, the patient must be adamantly certain of recovery.  The demons of cancer will constantly search for cracks within the shield of optimism.  They reach into the soul and offer an easier path of simply giving up and allowing the cancer and medicine to run their course.  Those demons take advantage of the constant pain and agonizing sickness brought on by disease and drugs. They attack when the patient is weak.  They discourage resistance.  They see patients as victims rather than adversaries.  Their desperate goal is to get patients to live with the mentality of victims who have given up hope.  "Just let it happen," they would say.  "Don't fight it."

As for me, things are settling down in time to go back to work.  The swollen legs and feet are slowly getting smaller and less painful and energy is getting better each day.  I forgot what it feels like to just feel normal.  I realize I'm not completely back yet but my standards of feeling good are so much lower than they used to be.  As things improve, I feel like superman on certain days even though I'm still weak and tired and trying to ignore pain.  My goal is to have the energy and strength that I had two years ago.  I'll get there.

The mental side of things is also improving.  My cancer demons make their appearance less often.  They still check on me now and then to see if there is a new weakness.  They are looking for any sign that I may give up.  As always, they are relentless and unmerciful but still unsuccessful.  They went after me when I was at my lowest point and they ironiclaly gave me strength by resisting.  It may have been strength to simply get out of a chair or to walk down the block or to just fake a smile as if I was feeling great.  Fighting my own demons was a battle to be won by myself not the doctors.  I'll be fine.

Doctor Mike

I have a doctor appointment tomorrow in Anchorage so I've been preparing by writing details of my edema in the legs, including measurements and a timeline.  I also have a treatment plan in mind.  It occurred to me that treatment for the past two months has been based on my suggestions and ideas.  I would tell the doctors what I believe is wrong and why, then I would suggest a drug or treatment plan to fix the problem.  Their role has been to say "Sure, that sounds good."  They would write a prescription based on my suggestions.  

I don't pretend to share their medical knowledge of cancer and they are much smarter than I'll ever be but I do know my own situation pretty well by now.  I've been dealing with this illness for so long, it's becoming easy to figure out what's wrong and why.  Next, I have to figure out how to bill the insurance companies for my diagnosis.  The doctors earn over four hundred dollars each time they see me for about ten minutes.  I spend a couple hours preparing for each appointment.  That comes out to $4,800 for my time.  I'll send a bill to myself and submit it to the insurance company for $28,000 for my last five appointments.  They will no doubt, gladly pay me for my time and expertise.  I'll let you know how it turns out.

Back home (again)

The saga goes on.  My current SCCA doctor called to say that my leg problems are probably not a result of GVHD.  The swelling is a side effect of a drug so I quit the drug and am waiting to see if it gets better.  She also said I can return to Alaska and let my local oncologist worry about it.

Since the reunions and doctor visits are over for now, my focus will to shift to one more year of teaching and one more year of encouraging teenagers to work as a group.  They each work on their own instrument and practice their own parts.  Each instrument supports the others, resulting in beautiful music by the group.  Their accomplishment is based on a group effort but the result is overwhelming individual pride.

My goal will be not allowing personal health issues to enter the classroom.  As I approach a point when I can say "I'm healthy," it will become easier each day to pretend there are no health issues, no pains, no sickness and no more side effects.  I look forward to the day of no more pretending.  That day is definitely approaching.  The present will become the past and the recent past will become ancient history.  This difficult part of my life will fade to a distant memory, one that doesn't define me but instead reminds me of the good in life.  I get to encourage teenagers to work hard to be a part of something great, to bring smiles, tears, laughter and pride to their audience and to their parents and most importantly to themselves.

Doctor's Choice

I've gone through two doctor appointment and two family reunions since my recent visit to Washington State.  I'll call the doctor tomorrow to see if I can go home.  Since my condition is unchanged and they thought the GVHD problems would be gone by now, I fear they will want to see me again.  I guess I'll know tomorrow.

Great friends, great relatives, pretty good health...

Dignity

I've been to the Seattle Cancer Care Alliance a few times over the past two weeks.  They're trying to stop the Graft versus Host Disease that seems to be advancing. Visiting that building again brought back memories of being terribly sick, of facing dark demons and forcing myself to fight with every once of strength I could muster.  The victory was not without loss.

The strange thing is, I felt great walking into the blood draw waiting room.  Seeng the other patients brought back feelings of the tremendous care that is passed around from the staff as well as from other patients. 

I was especially struck by one lady who walked up to the front desk to check in. She was bald but wore a cap. She had all the signs of a cancer patient who was in pain. Her step was slow with determination. She had every right to wonder why she was struck with such a miserable disease and to believe her suffering was an unfair attack on her soul.  Seeing her made me selfishly think of my own agony a few months earlier.  Then she blew my mind as she approached the desk. 

She raised her head, gave a big smile and said "Hi Robert. How was your weekend?"  She pushed him to tell her all about it.  Not once did she dwell on herself or mention how she was doing.  She kept the smile going throughout the conversation, then with the utmost dignity, she painfully walked to her seat and waited for her turn.  That's the spirit of a healthy person, illness or not.

Leg Explosion

It has been a while since the last blog.  I attended a family reunion for the past three days at Maple Falls, Washington, near the foothills of Mt. Baker.  It was a great event, seeing and visiting with cousins and relatives from my mother's side.  It was a reunion for the German family who grew up in Maple Falls on a small ranch between Black Mountain and Red Mountain.  There was no cell phone coverage in the area so I was unable to send a blog earlier than today.

As far as health issues from the cancer treatment, there is some news.  As reported earlier, my lower legs and feet have been swelling.  A week ago the doctor moved some drugs around and said it would get a lot better.  It's getting much worse.  If my skin stretches any further, I imagine it will explode like the Frenchman in the Monty Python movie.  I have to go back to the Seattle Cancer Care Alliance this week.  Who knows what the new treatment will be.  I'll post it as it happens.

"Get your affairs in order"

After a full week of trying to get an appointment at the SCCA, they finally committed to a day and time. It's not that they don't want to see me, they are just very full and having trouble finding a time to meet on relatively short notice.  As it turns out, they will check on my leg and feet issue this Monday.  

Since my time with myeloma is pretty much finished, I have enjoyed writing down some memories of the experience.  Over the past year and a half, I have kept notes about the good times and difficult moments.  The blog has also been revealing as a record of the ordeal.  As I read through my notes, I found that the most frightening moment throughout the entire sickness was the initial discovery of cancer.  The diagnosis was correct but the details regarding the odds of survival were incorrect.  It was an attack on my physical and emotional self.  I was unprepared.  My usual arsenal of optimism and certainty of survival was not ready for use.  I was ambushed while unarmed. 

As I wrote the details of the initial diagnosis, the story plays out like an essay for a high school English class.  I apologize for that.  It's just the way I write, probably due to instruction from a high school English teacher.


These are my notes and memories of that day...

The rehearsal was just twelve miles away on a snowy highway, a drive that thousands of commuters took every day to arrive in downtown Anchorage, Alaska.  I drove into town to practice for the annual “Holiday Pops” concert by the Anchorage Concert Chorus.  As the tuba player for the Holiday Pops Orchestra as well as the Anchorage Symphony, hauling my tuba around is a curse of playing such a large instrument, but I wouldn’t trade it for any other.  It’s simply the most beautiful sounding instrument in the world and getting a little exercise by transporting it is well worth the effort.  But this time, it was different.  

The pain in my right shoulder was growing each day.  Weeks earlier, lifting the tuba out of my car and into the concert hall was becoming painful.  Now, it wasn’t just painful, it was nearly impossible.  Asking for help should not have been an issue but I was ashamed that I could no longer lift my own instrument.  I was forced to ask a trumpet player friend to lift my instrument out of my car.  While on stage, I managed to get the tuba on my lap but it wouldn’t be long before that would also become too difficult.

I had been to a doctor a month earlier and she believed the pain was from a blood clot that had since vanished.  “The pain should go away with time,” she said.  At the time, I felt silly seeing a doctor without good reason, so I waited another month before admitting to myself that whatever was wrong wasn’t going away.  I knew I couldn’t go on like this.  The shoulder pain was excruciating.  I had to go back.

The appointment was set up with a different doctor at the same clinic.  After a short exam he said he suspects he knows what is going on but would need to do an X-ray first.  After a simple chest X-ray, he came into the room with a long face and sympathetic eyes.  He didn’t delay, he simply told me that I had a large tumor surrounding my third rib in my right shoulder.  After inviting me into his office where I could see the x-ray on his computer, I was baffled by the image.  There seemed to be a piece of bone missing from the middle of my third rib on the right side. The tumor had eaten away much of the bone.  

Having an active tumor caused considerable concern but more than anything, this new medical issue brought up several questions.  I wondered, would the treatment involve radiation?  Would it be a treatment that would interfere with my daily routine or could it be taken care of within a short time frame?  Would the damaged rib eventually heal?  My concerns were serious but I was still certain there was a solution that would eventually end well.  My brief optimism and curiosity about treatment was obliterated by the doctor's next statement.  His words would remain, echoing in my head for the rest of my life.  “I believe you have multiple myeloma or bone marrow cancer.  You should get your affairs in order. You probably have one to three years...three years, maximum."  

I went to the doctor with a pain in my shoulder.  I left his office with terminal cancer.  I was in no way prepared for the shock of knowing I was dying.  The pain in the shoulder was serious but cancer, let alone, terminal cancer wasn’t on my radar.  I was bewildered and saddened by the news.  I didn’t know how to react or how to respond.  I have always been an optimist for all things.  There has always been a way to beat the odds or to overcome obstacles.  This time, it was different.  The doctor said it was terminal.  He didn’t offer hope or even a remote chance of beating this cancer.  I was completely stripped of my usual positive outlook.  There was no hope.  I was going to die from a disease that I knew nothing about.

The next Holiday Concert Chorus rehearsal was just three hours later.  The same friend had to lift my tuba out of the car and up the stairs for me.  The doctor's words kept replaying in my mind. "One to three years..."  I didn't tell anyone.  I was still numb, "One to three years..."

While sitting in the rehearsal and listening to the string section go over a difficult part, my thoughts raced back and forth without focus or purpose.  I thought about my childhood and the wonderful life that I had taken for granted.  Even though I was the youngest of four children, it looked like I would be the first to leave, the first to die.  My dad passed away a few years ago but my mother who was 86 would be completely devastated.  I was afraid she would fade quickly when she finds out that her youngest was dying.  

I also worried about preparing for death so that my family would not be burdened by the tasks that lie ahead.  I again thought about my childhood.  I was lucky to have lived such a diverse and interesting life.  Maybe it was time and I should just accept it.  If I could fight it, I would with all my might but the doctor’s prognosis was that of terminal cancer.  Three years would be my maximum life expectancy, probably less.  I was confused and a dark sadness gently took over my entire being.  During a prolonged section rehearsal with the singers, I tried to remember some of my fondest memories as a young boy.  It was a feeling of being cared for and belonging to a group of loggers who I worshipped more than any superhero.  It was a feeling of being completely free and happy.  I remembered when I could fly.

Back at the SCCA

LTFU
That's the name of my current group at the SCCA.  I started with the "Rose" team for the first transplant.  The "Yellow" team was next for transplant number two.  Now I visit the "Long Term Follow Up" team or group.  They deal with previous patients who have undergone transplants of any sort.  It's still an impressive group of doctors and nurses.  They rotate from LTFU to one of the other current treatment teams every few months.

My current health is fantastic but I probably have another GVHD symptom.  My legs and feet are swollen and sore.  They say it's probably due to the immune system fighting with my body.  Treatment will likely be increasing the immune suppressant drugs or maybe taking a steroid again.  Although I feel great, I don't want this to continue to the point where I become immobile.  I enjoy popping wheelies in a wheelchair but I would rather not be forced to use one for the rest of my life.

Seattle is great this year.  Unlike last year, with scorching temperatures and virtually no rain for the entire Summer, this year is more typical for Seattle.  It's usually about 70 degrees with occasional rain.  I like the rain and I enjoy Seattle but I'd rather go through a third transplant than drive in this traffic every day.

For now I'm just waiting to hear from the doctor.  Maybe I'll walk to one of the four Starbucks that are all within two blocks from my hotel.

Setback? Not today!

The freezer is full of fish.  The smoker has been going for six days straight.  My cancer scores are very near zero.  Muscular strength is building with each day.  A long fight with a dreadful disease is very near an end.  An eventual cure is still a certainty.

Dr. Google says the latest development of swollen and sore ankles and legs could be a sign of something serious for a post-transplant patient.  I say, the cancer was a bump on the road.  This symptom is just a pebble on that bump.  I won't ignore it but it's certainly not going to change my outlook.  I plan to end this journey with better health than I've had for several years.

Dipnetting the Copper River

We made it to the Copper River.  My son, David and I drove for five hours, planning to camp for the night.  Instead of camping, the charter boat offered to take us out at 5:30 pm to spend the night dipnetting so we went for it.  We fished until 5:30 the next morning, did okay with sixty-five sockeye.  David also netted three kings but he had to return them to the river since they are no longer in season.

The area we fished was a slippery rock bluff so we tied ourselves to a tree for much of the time.  At about 1:00 am, the natural light diminished to a feeling that dusk had just set in.  Within a couple hours, the sun had started to light the area and our exhaustion would vanish with each new catch.  Since my strength is reduced due to the transplants, David eventually did all of the catching and I just transported each fish from his location to a set of stringers a few feet away.  The challenge was climbing around the rocks without feeling in my feet due to neuropathy.  I had to look at each rock ledge and watch each foot placement.  A simple slip on the wet rock would have meant a tumble into the river.  In the past, many people have fallen and almost none have survived.

Moving around was a challenge but well worth it.  Sixty-five salmon will make a lot of meals.  It's the one activity that I will truly miss if I ever move out of Alaska.

David at the Copper River

Gone fishing

Commercial fishing season has started in the Lower Cook Inlet.  It should be a a very strong season with a return of tons of hatchery fish.  For me, missing the season due to my past illness is just another setback or another reminder that cancer takes everything it can from its victims.

I'll settle for dipnetting this year.  The Copper River dipnet season has started so I'll try it out this Thursday.  It will be two days away from cell phone coverage and one night of sleeping next to the river in a small tent hoping the bears don't visit us during the night.  My oldest son, David will be with me.  It will hopefully be a positive moment to remember.  I'll let you know when we return.

Fading problems

A month ago, I was experiencing tumors, muscle cramps, fatigue, vision problems, dizziness, cognitive impairment and other problems that I'd rather forget.  For the past two weeks, it's down to fatigue and cognitive loss.  That's it, no cramping or tremors.

I can deal with both of my current side effects.  The fatigue can be extreme so I just have to rest after a couple hours of manual labor.  The cognitive loss is mostly noticed by myself.  I've never been accused of being the sharpest tool in the shed so other people don't really notice when I can't remember their name.  People aren't too surprised when I ask for the date, even though I'm asking for the day, month AND the year.

These problems are minuscule compared to previous side effects so I'll cross my fingers, knock on wood and hope that it's a sign of the future.  If this is all that's left, I can deal with it.

Mike,

Date: sometime in the Summer in the year after the transplants (I think)

Time to rebuild

One of the many symptoms for a tandem transplant patient is weight loss with much of the weight coming from muscle.  Each time the doctors would tell me about symptoms that were present for all patients, I tended to be the rare exception.  For several months, I maintained my weight within a couple pounds.  The medical team said my lack of weight loss was very unusual.  They didn't know why I was so different from the norm.  

After the worst treatments were over and most people would start to gain weight, my body finally started to lose weight, including muscle.  The symptom hit me about three months after the allogeneic transplant and about three months later than normal.  The good news is I had some weight to lose and it didn't go too far as it does with many patients.  Some end up looking far too thin with massive muscle loss, needing assistance to walk or to complete ordinary tasks.  The result of my weight loss was not nearly as severe.  I'm at the correct weight for a person of my height but much of the muscle is gone, making it difficult to lift heavy objects or to walk for a long distance. 

It's time to rebuild my strength.  They say it comes back in about a year.  I'll start working to rebuild and continue to feel grateful that my current concern is simply muscle loss.  It could be so much worse.

All results!

All of the results are in for the recent tests in Seattle.  Now I can admit that these were cause for concern.  Since my version of myeloma was so aggressive, I did have a slight worry that the cancer could have grown over the past three months.  Instead it's all good news or even great news!

Blood test:  This test looks for something called M-spike or monoclonal spike. It's an indicator of the amount of cancer cells in the blood stream.  The results of this test were the same as in January.  There is a trace amount of cancer cells still in my bloodstream.   The score I received was 0.1.  It's about 700% lower than scores from several months ago.

PET scan:  Positron emission tomography is used with a radio active tracer to find active tumors.  The PET scan found no active tumors.  The large tumor in my right shoulder is completely gone.

Bone marrow aspiration:  A core sample of bone marrow is pulled out of the hip.  The sample is studied to determine the amount of cancer cells within the marrow.  This was the last procedure.  They did the aspiration on Monday of this week.  The call came in this morning.  The results were a big zero!  They didn't find ANY cancer cells in my bone marrow.

The doctors are extremely pleased with these results.  So am I.  It has been an incredibly long journey.  It's still not over but I feel that the end of sickness is near.  I have always been certain of an eventual cure.  My optimism was and still is supported by so many great friends and family who have constantly been there, regardless of my poor health and occasional depression.  When I am completely cured, I will have so many people to thank because I could not have gotten through this alone.  

More Results and a Woodpecker

The PET scan results are great.  There are no active tumors in by body.  The shoulder tumor is completely gone.  It's great news and I'll take it as a sign of a path to a cure.  I haven't always done this well on tests.  My college exams usually scored high but not always.  I was explaining my worst college test to a cousin a couple days ago.  She said I should add it to the blog.  It has nothing to do with cancer but it did hurt more than any cancer test I've ever experienced.

I was walking through the woods, on my way to a music history final exam.  There would be questions like "Who is this composer and what information brings you to that conclusion?"  The professor, a Hungarian music professor with a thick accent would drop the needle on an obscure piece of music and give us three minutes to complete the answer.  She would also ask us about various forms of instrumental music, then vocal music and every combination of solo or ensemble works.  It was a difficult test but I felt ready and confident.  Getting an "A" on the final would assure and "A" for the class.

The next thing to happen, as I was walking along brought great joy to the college medical clinic.  It was such a rare occurrence that the word spread throughout the college as a bizarre joke.  As I was strolling along with huge Douglas Fir and Cedar trees all around me, my focus was on symphonic forms and the idiosyncrasies of various composers.  My thoughts were all consuming, unaware of my surroundings and anxious to get this test over with.  Then suddenly a rhythmic tapping could be heard directly over my head.  It was the common sound of a woodpecker.  I did what I believe anyone would do when a woodpecker knocks on the tree just two feet away.  I looked up.  The bird's timing and aim could not have been more perfect.  I didn't see the woodpecker.  As my head pointed upward, the bird poop landed directly in my left eye.

The immediate pain was excruciating.  It was a sharp burning pain unlike anything I had experienced.  I put a hand over the eye and immediately started an all out sprint to the campus, passed the gym, the math building, the science building, the library all while pushing my palm against my face as if I were holding the eye inside its socket.  As I finally reached the medical clinic on the far side of campus, about a mile away, I wondered if I would be blind from the intense burning.  Opening the eye just revealed a dark blur and even more pain.  I had never set foot into the clinic but I thought they would they would surely help and maybe give a prognosis of what I could expect.  Most of all,  I had to find relief from the pain.

When I arrived at the clinic, I explained what had happened to the receptionist.  I'll never forget her reaction.  She laughed.  I was in terrible pain and she just laughed.  She picked up the phone and told somebody that a patient just walked in saying a bird pooped in his eye.  I knew that students would come up with a lot of medical complaints during finals week.  Sometimes it was due to stress from the finals and some would look for a medical excuse to not take a final.  Her reaction to my complaint indicated that she thought I had staged the whole thing to get out a test.

They brought me back to an exam room where a physician was smiling, with an assumption that I was faking the whole thing.  He said, "I've been here eight years and if a bird did what you're saying, it would be a first."  He looked at my eye and while still chucking admitted that yes, there was in fact a large amount of bird poop under my lids that were closed for the previous twenty minutes.  Within a couple minutes, three clinic workers were in my room just to watch (and giggle) as the physician pulled long strings of poop from my eye.  The pain was still intense.  It wasn't one bit humorous to me, especially since the doctor didn't appreciate my level of discomfort.  He eventually gave me some eye drops and sent me on my way with a note to give to the music history professor.  It said "Please excuse this student from the final.  A bird pooped in his eye."

By the time I reached the music building, the final was over. The professor was leaving the room when I caught up with her.  The left side of my face was bright red and my left eye was also red.  I gave her the note and explained what had happened.  I'm still not sure if she believed my story but she gave me credit to be the first person in her teaching career to come up with such a unique excuse.  I was allowed to take the final the following day.  I did get an "A."

Results are in

The first of three results are in. All three tests are checking for the level of cancer cells left over.

Blood test:  checks for something called M-spike or monoclonal spike. It's an indicator of the amount of cancer cells in the blood stream. 

PET scan:  Positron emission tomography is used with a radio active tracer to find active tumors. 

Bone marrow aspiration:  A core sample of bone marrow is pulled out of the hip.  The sample is studied to determine the amount of cancer cells within the marrow. It hurts!

So far, the blood test results show my m-spike at 0.1. That's a very low score. I'd prefer a score of zero but I have no complaints. It used to be many times greater. 

I'm in an easy chair right now with an IV in my arm, waiting for the radioactive substance to be injected.  The PET scan will start in a few minutes.  I'll be laying in a tube, unable to scratch my nose or any other body parts for a couple hours.  

The bone marrow aspiration is scheduled for Monday.  As usual, I have to go through it without sedation. 

This follow-up group of appointments is a reminder lof iving here for so many months. I had hundreds of tests and treatments during the thirty-four weeks as a full time cancer patient. This short group of tests is nothing compared to last year. 

Unfortunately, visiting the SCCA does remind me of the true ugliness of this disease.  The faces of the other patients are new but their expressions and circumstances are the same. Many are looking for a cure but others are just hoping to add some time to their life. They don't want to die, not yet.  Why them?  Those of us with good relative (and I do include myself) should be grateful and sympathize with less fortunate cancer victims.  Cancer needs to be defeated!

Seattle Results? (not yet)

The followup appointments at the SCCA are not over.  It was set up as one day of tests and clinics but the doctors decided to extend my stay for more testing.  They are going to check the cancer to see if it has advance or receded.  I’ll have a Pet Scan on Friday and a bone marrow aspiration on Monday.  

This is great news.  They have pretty much cleared me of having GVHD.  I had several signs of it earlier but the symptoms have faded.  The only question left is how the cancer is doing.  I’ll get a call sometime today or tomorrow with results from a blood test.  The more detailed news will come sometime next week.

As far as my current state of being, I don’t have time to worry.  I’ll either be nearly cured or the cancer may have advanced.  Either way, I’m planning to eventually find complete health.  As I’ve said before, cancer takes so much.  It brings misery to so many good people.  As long as I feel healthy, I’m not going to waste time worrying about what potential bad news.  I won't give cancer the gift of my misery based on what "could" happen.  The good things in life are keeping me far too busy.

To Seattle!

It's off to Seattle and the Seattle Cancer Care Alliance.  Since the SCCA was a huge part of my life for several months, I have some predictions regarding what will happen. 

After a 12 hour fast, they will check my blood, then X-ray my chest. My bloodwork will show nothing significant except a warning to drink more water based on a high creatinine score. The X-ray will not show any alarming news regarding my lungs. Next, they'll put me in a sealed glass booth and have me breathe through a hose. She'll say "Blow!  Empty your lungs."  I will, then she will direct me to not inhale for 15 seconds. I'll pass out. Then she'll make me do it all over again. 

The results of the Pulminary Function Test will show that my lungs are just fine or probably more than fine. I do play the tuba now and then.  I may have one or two unknown tests before the clinic. The clinic is schedule for an hour and a half with a nurse, physicians assistant and a doctor. They will go over my test results, poke me and ask a thousand questions. 

When it's over, they will me tell I'm doing great. Compared to so many others I know they're right.  We will see how close my predictions will be. The jet engines are warming up.  Thanks for reading. 

Unremarkable

All of my test results are in.  There was a rash of tests last week with some extra test thrown in at end of the week.  They all came up as "unremarkable."  I'm used to getting that type of comment on a test.  High school and college math scores were certainly unremarkable.  To be honest, my English, science, social studies, foreign language, health and art grades were all unremarkable.

But in medical speak, unremarkable is either a good thing or it just means the doctors don't have a clue why certain symptoms keep reoccurring.  That's all fine with me.  My symptoms are slowly becoming less annoying and I'm able to climb a flight of stairs without stopping to catch my breath.

I've always looked at myeloma as a playground bully, trying to intimidate victims into submission.  With modern medicine on my side, I'd have to evaluate my cancer's efforts as, well....unremarkable.

This is only a test

Health update:  It's not mumps.  The blood tests came back and that's about all they could tell me.  The face swelling was either a very fast reacting virus or more likely an allergy to something.

Doctors keep asking me about which allergies I may have.  I tell them that I have no idea.  My immune system is less than seven months old.  I started over on November 6th with new bone marrow, new blood and a new immune system.  It's anybodies guess at this point.  The tests this week included a swab to check for viruses, a pulmonary function test and a chest CT scan.  Sometimes I think doctors look at the dozens of pokes, prods and tests I've taken and say,  "It's been a while since we've done this one.  Let's do it again."

I'm pretty sure I've been tested for everything at least five times.  The bad news is the tests always come up negative so they don't really know what's wrong with me.  On the 6th, I'll spend a day at my old stomping grounds at the SCCA.  They have scheduled several appointments for, guess what...more testing!

Smaller Face

The previous blog stirred up some concern.  Sorry about that.  I mentioned I was laying in a hospital bed but I'm not checked into the hospital.  I was in the emergency room.

So today, the Seattle Cancer Care Alliance was also worked up about my balloon face from Saturday and Sunday.  They gave me two bottles of antibiotics but they have no idea what's going on.  It doesn't matter at this point.  Other than a huge, sagging double chin that wobbles when I turn my head, my face is looking more normal each day.  

Each day is a mystery.

Mumps??

One doctor thinks I have mumps!  Another says its a viral infection that looks like mumps. A blood test will give us the final answer. 

Either way, I'm laying in a hospital bed and my face looks like I stuffed a corn cobb in each cheek.  What's next? Measles?

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?"