Almost done with transplant #1

I’m back in the hospital again.  This entire procedure is set up as out-patient treatment.  But if anything goes wrong, they send the patient to the hospital. I had a mild fever two nights ago so off I went the the University of Washington hospital's stem cell transplant wing.

They’re trying to find a reason for the fever but so far all the tests are negative.  But the exciting news is my white blood cells are finally increasing.  They have turned the corner.  For the past two weeks, my white blood cells have been diminishing.  Three days ago, they were at absolute zero, yesterday 30 and today 140.  That’s still very minimal compared to normal white blood cell counts (3500 to 10500), but it means everything is working as it should.  I’m on the mend and things can only get better from here.

For the past 10 days, my newly inserted stem cells have been regrowing bone marrow.  As soon as some bone marrow is established, it starts to make blood cells, including the all important white blood cells.  From now on, my white cell counts should increase daily until they are somewhere in the normal range.  At that point, transplant number one will be essentially done.  Even though I’m in the hospital, this is the best news I’ve heard for a long time and the dark days of zero white cells are behind me.

Dark Times

It's been a while since my last blog.  I apologize for that.  Other than being tired and a bit sick, I don't really have a good excuse for not writing lately.  Usually a lack of writing reflects a lack of writing material and I suppose that will be my excuse this time as well.

This is day five of the transplant.  My medical team has been watching my white blood cell count drop each day and now they are almost completely gone.  Tomorrow should be the absolute lowest count and that's also when I'm most susceptible to catching something.  This dangerous time will go on for about six days until my new bone marrow starts creating new white blood cells.  

In the meantime, I'm eating a little and drinking whatever I can handle.  I'm still hooked up to a five hour bag of hydration each day.  It's pumped into my catheter with a little machine that I carry around in a backpack.  Apparently our bodies are not made to function without bone marrow and without white blood cells.  I feel exhausted after a walk of a mile or two.  But I have been told repeatedly that I look and seem extremely well compared to other transplant patients at my stage in the game.

Our activities for myself and my son David who is currently my caretaker have been just keeping track of the daily medicine changes and shopping for a car.  Both my son's Subaru and my Nissan died recently.  We thought finding a car in Seattle would be much easier than in Anchorage or Fairbanks (where he lives) but most cars down here don't have 4wd and many are extremely high mileage cars due to the mild climate. We're still looking on Craigslist every day.  If fact, if you know someone selling a used car, send me the details.  One of us might be interested!

I'll try to keep up more often.  There hasn't been lot of practicing and not a lot of activity.  For now, I'm just waiting out the dark times and waiting for the sun to come back up in about six days.

Countdown is Done!!

Well here I am on "Day minus 1" after receiving the massive chemo on day minus two.  My doctor says that day zero to day five or six will be the worst of it but by day 14, I should start to feel pretty good again.  That is unless something goes wrong on any day.  If that sounds confusing, I agree but that's how they talk here.

Tomorrow is called day zero because that's when I receive my stem cells.  That's the first day of the actual transplant and some say my second birthday.  They will put eleven million stem cells back where they came from...me.  The good news is by day thirty, I am officially done with transplant number one.

I've received a lot of comments about my banjo exploits.  I'm honestly not so good at the banjo.  I'd like to be but I have to keep up on my primary instrument first, the tuba.  So for the record and for any student musician who may read this, I'm keeping my chops up on the tuba first and foremost.  I may only be able to play tuba from the rooftop but it's critical that I keep it going.  

So what's it like to be completely neutropenic or without white blood cells?  Aside from being tired and a little nauseous, it not as bad as they say it is.  I just went for a two mile walk after letting my caretaker (son) demolish me on an old computer game.  

So at least after tomorrow, I can start counting with positive numbers.  I'm expecting the transplant itself to go well so I expect I'll write my next entry with the help of eleven million more stem cells.

Day Minus Three

Day minus three...That’s what my medical team is calling today.  It sounds like they are going to shoot me into space on Thursday.  But Thursday will be day zero, Friday is day one and so on.  It’s their way of counting based on the proximity to the infusion of stem cells which does happen on Thursday.

For now, I’m getting introduced to a pile of new drugs and a machine that will pump saline into my catheter for 40 consecutive hours.  I’ll hook up to the pump after taking the nastiest chemo drug tomorrow (Tuesday) morning called melphalan.  The list of side effects reads longer than most novels.

Other than that, it’s been a beautiful day in Seattle with sunshine and 80 degrees.  I’m trying to purchase supplies to make a generator and attempting to download an old computer game to help the time go by.  

Transplant Complications

I recently found out that a stem cell transplant causes a number of changes.  For one, I’ll have to renew all of my vaccinations.  I imagine I’ll have to sneak into a local elementary school and stand in line with first graders to repeat my early childhood shots.

But other changes may also occur such as my sense of taste.  As a person of Norwegian heritage, I enjoy at least one can of sardines each day while at work in my band room office, usually with cheese and mustard.  It not only tastes great, but it also keeps students out of my office.  They claim the smell is awful but I can’t smell anything so I decided to do an experiment.

I tested whether or not sardines smell by placing a mostly empty can in a trash can across the hall in the choir room.  To my surprise, they ran out of the room pretending to gag by the smell.  Just to be sure, I repeated the experiment at least 20 times last year with the same result.  They eventually banned me from the room.

Since the transplant may change my sense of taste, who knows what I’ll be eating when this is over.  Sweet potatoes, broccoli, even squash may be tolerable in my future.  I’ll know soon.  The transplant is still on for Tuesday.  It will start with an intense chemo and then on Thursday I'll receive an infusion of my currently frozen stem cells.

Go Mustangs!

To my surprise, tomorrow will be a difficult day for me.  For the past 33 years, I have gone to work in the Fall.  I’ve worked in many locations as I’ve taught music to kindergarteners through 12th graders. I also did an 11 year stint as the district wide music administrator and supervisor of teachers.  I’ve often said I’d like to retire soon.  But not returning to work due to cancer wasn’t in any plan.  I don’t like being forced into a decision.

This was going to be the best year for the Chugiak High School band, ever.  It still will be.  I just won’t be a part of it for a few months.  I’ve had the privilege of working with some students who will be the leaders of tomorrow and believe me, with these young men and women at the helm, the future looks promising.  They’re incredibly bright, kind to each other and they have a focus of doing good things in the world.

The staff at Chugiak High School are similarly focused.  They are truly there for the students.  For me, they are colleagues, friends and people I respect for their knowledge and commitment to young people.  They are truly second to none.  

Don’t take this wrong.  I will be back at Chugiak, hopefully this year.  For now, I’m just relaxing after an afternoon surgery and trying to persuade some stubborn cancer cells to submit to this treatment.  I’m not sending pictures of myself with hair loss this time so just picture a much tougher, "Breaking Bad" version of me in a recliner with a computer on my lap wishing I were somewhere else!

Go Mustangs!!!

Transplant is Soon

My doctors are bothered that the overall cancer count is still too high.  I have an aggressive version of multiple myeloma that will hopefully be taken care of by the  transplant process. But the data collection period is over for now.  I don’t have cancer cells in the spinal fluid, the number of cells has reduced and I’m not sick so the plan is to carry on with the transplant next week!  

This Tuesday, I’ll be receiving a high dose of chemotherapy called Melphalan.  It will destroy my battered bone marrow and all of the cancer cells within it.  It also destroys my white blood cells and a few other things.

I will be tired, not very hungry and feel kind of sick but it’s not a seriously dangerous time.  I’ll have to carefully watch out for bacteria or things that can make me sick but I’ll still be functioning just fine.  The only concern is from getting a laundry list of side effects that come with any chemotherapy.  Others who have gone through this say it’s really not that bad.

Two days after chemo treatment, my own stem cells will be injected and within a couple weeks, they will regrow the marrow, the immune system will reboot and I’ll be as good as new (almost).  That’s the summary of transplant number one, starting one week from yesterday.

As for transplant number two, using donor stem cells, I just received some news that my siblings do not match with me.  Also, my earlier report that I had 150 matches was not correct.  I have 137 near matches.  After further testing, it will be determined how many exact matches are out there for me.  The doctor said there is a very high probability that I will find an exact match.

Transplant number two won’t begin for at least 45 days after transplant number one has taken place so there will be a lot of time to find that perfect donor.

This morning, they plan to insert two lines that will access blood near my heart.  It's a minor surgical procedure.  Other than that, I'm just looking forward to transplant number one.

Rooftop Banjo Success!

The rooftop rehearsal was a success, sort of.  I went to the roof this afternoon and for the first time, there wasn’t anyone there enjoying the typical 90 degree heat that has become the norm for Seattle this Summer.  It was down to a chilly 70 degrees so it was empty.  (These folks are not Alaskans.)

The goal is always to practice without anyone listening.  If they’re listening, I feel like I can’t repeat the same lick 500 times.  In that case, I have to analyze who I’m playing for.  If they look like bluegrass musicians, I just play through the three tunes that I can play up to tempo, then leave before they ask me to gig with them.  For street musicians, I can play a lot more without concern for tempo.  If my audience members are music teachers, they will appreciate repetitive practice.  But if they are jazz or symphonic musicians, there isn’t anything that can be done on the banjo that won’t offend them.  

Nobody was on the roof but I forgot about the two buildings that are 20 feet away crawling with green and orange shirted construction workers.  I’ve worked in construction.  Their backgrounds vary widely from lifetime construction workers to disgruntled teachers looking for better pay.  I didn’t know how they would react.  Would they start dancing like chimney sweepers in Mary Poppins or would they get angry and throw chunks of cement at me?

As it turned out, they looked a bit startled.  They stopped what they were doing, smiled, put on their giant ear protectors and went on about their business.  I was completely fine with that.  I practiced the difficult passages a few hundred times until I got sick of it.  This may become a regular thing in coming months.  I’ll just let the construction workers see me first so they can be ready with protective gear ahead of time. 

Test, Test, Test

It’s a down time right now, meaning I don’t have a long list of appointments for the next four days.  This week, my doctors did an MRI, a spinal tap, an ultrasound and some other smaller tests.   They will meet with me on Monday for a "data review conference"  to determine if I am ready for the big plunge into neutropenia (no white blood cells) next Monday.  That’s when they will kill the bone marrow, then bring it back with my previously extracted stem cells two days later.

That’s the plan but things change rapidly.  Hopefully the data review will demonstrate that it will be okay to proceed as planned and that my treatment will not have to take some sort of detour.  Was the cancer killed off enough to proceed?  Did it get into my spinal fluid?  Those are the things I wonder these days.  I'll let you know on Monday.  

Until then I may indulge myself with a little roof top banjo playing.  I'll let you know how that works out.  Happy almost weekend.

Mike

Longer Treatment Plan

I took a picture of this cartoon from an exam room
in the Seattle Cancer Care Alliance

My regular and primary employment is to teach band at Chugiak High School within the Anchorage School District.  I work with the friendliest and brightest students that I have ever met in over 30 years in education.  They’re not only extremely capable but they have true pride in their community, their school and their band.  They impress me every day.  The plan was to miss about a month of school in the Fall, but due to the aggressiveness of the myeloma, my medical team has strongly recommended a much longer stay in Seattle.  I will have to miss at least one semester of school.  The good news is, we have a substitute teacher who is able and willing to take over for as long as needed.  They couldn’t be in better hands.

As far as news of my treatment, I’ll be receiving the first transplant of my own stem cells on August 18 or 19.  Then I have to recover for a few weeks before they can do the second stem cell transplant from a donor.  The first choice of a donor would be one of my three siblings.  If they don’t provide a match, there are 150 matches from a national register of stem cell donors.  That’s 150 complete strangers whose stem cells are a near identical match to my own.  I’m not sure if they all play the tuba or banjo.  Maybe they all like sardines with cheese and crackers like I do.  My doctors told me that 150 matches is a very high number.  Once again, I feel lucky compared to many of the other patients I see at the clinic every day.

Missing a Wedding

Today is a wedding day in Indiana.  My son, Benny is getting married to Greer Gerni.  The wedding was scheduled before I knew about my journey to Seattle.  Of course, there is disappointment that I can't be there, but I doubt anyone is bothered by it as much as I am.  I've known about the conflict for weeks.  Benny hired a videographer specifically for me.  He even offered to set up a video feed so I could view it live.  I told him to focus on the wedding, not my ability to watch it.

Benny and Greer would much rather I be in Seattle, getting treatment.  It's a sacrifice but a worthy one.  It will allow me to beat cancer and get back to work.  They will no doubt be married for the rest of my life so I'll just celebrate their 20th and 30th (at least) wedding anniversaries instead of their actual wedding.  

Congratulations Benny and Greer!!!!!!

Love, Dad