The ugly, the bad and the good

Ugly:  Rash spots that refuse to leave; Cancer

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

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

Deception 2

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

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

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

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

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

GvHD keeps on giving

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

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

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

Past or Future?

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

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

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

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

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

Ups and downs

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

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

Draft: letter to donor

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

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

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

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

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

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

It's cold!!!

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

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

Memories

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

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

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

No Donor Exchange (yet)

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

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

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

Two Years

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

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

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

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

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

Don't be afraid

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

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

Worried Man Blues

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

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

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

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!"