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