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.