Pressing Forward

It’s been a blogless week.  I apologize to those who try to keep up with my blogs.  I won’t allow another pause to go for this long.  I have two bits of news from Seattle Cancer Land.  First of all, I’m growing hair!!  That may not seem too significant but I’m getting tired of covering my head with a baseball cap.  They say the new hair can come in completely different.  It could be curly, a different color or a different texture.  It’s too early to know if I’ll be a red head or sporting curly hair but it’s starting and that’s what matters.

In other news, I had my clinic yesterday.  The past three clinics have brought bad news that my donor had gone away which delays the entire process.  But yesterday was an exception.  The donor (24 year old male from Europe) is still on board so my transplant is still scheduled for November 6.  Chemotherapy and a couple dozen other treatments will start next Monday on the 2nd.  The treatments won’t be a lot of fun but knowing I’m closer to returning to Alaska will make them all worthwhile.  The sooner the treatments and transplant occur, the sooner I’ll get rid of this goofy disease and go on about my life.

As I mentioned before, my time off from medical treatments has been very busy with projects and practicing.  Starting on the 2nd, I’ll be focusing on my treatments again and will be looking forward to putting this all in the past.

Slow times...busy times

My next transplant is scheduled for November 6 so for now, I have very few medical appointments.  They even let the required caregiver (my son) go home so I’m completely alone for a couple of weeks.  Appointments will start again around November 2nd.  My medical team will keep me very busy with a multitude of tests, preparatory chemo and radiation. But until then, I have several projects that are screaming for attention.

These include converting dozens of old cassette tapes to digital.  These are tapes that were at some point converted from reel to reel tape to cassettes.  They are recordings of relatives and friends telling their stories from long ago.  Many of those recorded have since passed on so they are extremely valuable.  I’m also cleaning up old videos and digitizing everything.

As a musician, I enjoy practicing.  I have to keep up my tuba and also practice string bass and banjo. My goal is to become proficient at the banjo and functional at the bass.  I have a long way to travel on both instruments.  

Then there are other projects that tax my brain sometimes too much.  The linear generator project and some others receive attention as often as possible.  When I’m not at the clinic, I spend my day rotating from project to project.  I’ll work on one until I’m sick of it, then practice for a while and move on to another.  I almost look forward to the return of frequent medical treatments so I won’t be so busy.  (Well, almost.)

Lost a Donor - Found Anorher

Well, it happened again.  My second donor went away.  I’ll never know why but my doctors told me it’s either a decision by the donor or he may have not passed a part of the physical.  Whatever the reason, receiving a transplant on October 22nd isn’t going to happen.  That means I’ll be stuck in Seattle for a little longer than expected.

The doctors told me this at the same time they told me that I already have a third donor lined up.  He’s a 24 year old male from Europe.  The new infusion date is set for November 6.  Now my other tests and preparation appointments begin, including another bone marrow pull.  That’s when they drill into my hip bone and pull out core samples of marrow and bone to check on the cancer.  It’s pretty painful but the information obtained is well worth it.  Other big appointments include full body radiation and more chemotherapy.  

My fingers are crossed this time, hoping that this donor will work out.  He’s a perfect match in every way.  One person asked in the comments section if my perfect matches play the tuba.  Even though that wasn’t part of the medical check for compatibility, I will assume that they do.  Since I have hundreds of potential perfect matches, I may be a match with every tuba player in Europe.  Imagine how much beer they drink as a combined group!

Found a Donor

Another donor has been found.  My second transplant was put on hold due to some sort of change from the first donor.  He/she backed out or was found unsuitable after further testing.  Now, another donor has been found and a schedule is in place.  I should receive their stem cells on October 22nd.

Before I receive the new stem cells, there will be a handful of tests and conditioning appointments.  The medical team will further suppress my already weak immune system through chemotherapy and full body radiation.  They do this so my own immune system will not resist the new stem cells.  After time, they will slowly allow my immune system to gain strength, depending on the reaction to the new cells.

The good news is the new donor is a perfect match and I have lots of other potential perfect matches if this one backs out.  In fact, the medical team was amazed that I have hundreds of perfect matches.  Initially, they said there was only an 80% chance of finding a single match.  They didn’t know there would be an entire community with my exact genetic markers.  I still don’t know anything about the donor.  They could be male or female from anywhere in the world.  But the chances are it’s a young male from central or northern Europe.  They look for young males first and Europe has many more registered donors than the U.S.

Eventually, I’ll have a decision to make.  After one year, I can send a message to the donor, asking him/her if they would like to be contacted.  If they agree, I will receive their contact information.  A simple thank you would be the least I could do.  Donors receive nothing for spending a day in the hospital.  They simply agree to help a random person somewhere in the world.  If they are from Europe, they don’t pay anything but if they are from the U.S. it actually costs the donor to sign up for the registry.  For now, I’ll focus on getting healthy.  A decision about contacting my donor can and must wait for a later date.

Cancer Takes and Takes

I’ve been living with cancer for over a year now.  I’ve also been living around cancer patients for the past four months.  I share an apartment building with them.  I go to multiple medical appointments every day where we sit, waiting in the lobby for our appointments to begin.  We talk and share stories.  The first discussion is always about each individual’s experience since arriving at the the Seattle Cancer Care Alliance.  For some, it’s a relatively short story, a little chemotherapy, maybe some radiation and continued maintenance at home. For others, it’s a matter of months to receive a stem cell transplant.  An autologous transplant (using one’s own stem cells) takes about three months.  An allogeneic transplant (using stem cells from a donor) takes about four months.  Most patients are given one or the other of these transplants.

For those with more aggressive cancer, both transplants are warranted.  They require treatment for a full seven months.  Unfortunately, I’m in the seven months treatment plan due to a highly aggressive form of myeloma.  Regardless of the illness or treatment plan, the effect on each patient seems to be radically different.  Some are in wheelchairs, some are with walkers, many use canes to get around and others seem completely mobile.

The most striking difference between cancer patients is how the cancer changes the self-identity of some victims but not of others.  Cancer can be so much more than a biological error of reproducing cells.  It forces each victim to deal with their own perception of self. When we have a cold, we say “I have a cold.”  It doesn’t change who we are.  Cancer patients often say “I AM a cancer victim.”  The sickness can become who we are; a permanent part of our being.  Our identity has changed.  Cancer seems to want everything from its victims.  Side effects from medications are usually a long list of terrible ailments from nasty rashes to diarrhea, nausea, and a lot of just feeling miserable.  The financial cost of cancer is huge.  Even with strong health insurance,  the out of pocket expenses are unreasonable for a middle income patient.  Co-pay for pharmacy expenses alone can be several hundred dollars each month.  Just one of my required twelve daily medications cost $300 per month.   The bills just keep coming.  And to make things worse, most cancer patients are marked with the universal cancer sign for all to see, complete baldness, including eyebrows and eyelashes.  It’s a ruthless disease that will chip away at its victims until there nothing left but an ugly cancer inside a defeated host.

As for me, I feel lucky to have a cancer with a treatment plan with a possible path toward long term remission.  Many are not so fortunate.  I’m also lucky to have so many friends and family who support my every move.  That makes a huge (I can’t emphasize enough how huge) difference.  My attitude of optimism and my sense of humor were not something I invented for myself.  It’s in my genes, thanks to my parents.

So when asked for my story in the waiting room, I let them know that my cancer is a very wicked version of myeloma, that I’m on the ultimate treatment plan for the most severe version of the disease.  But thanks to all of the luck and fortune described in the previous paragraph, I’m able to start my introduction with: “My name is Mike and I HAVE cancer....for now.  I’m on a path toward a cure.”

Missing a Concert

The Chugiak High School Fall Band Concert is tonight.  It feels strange not to be there.  It’s another reminder that this disease takes away a lot more than physical health.  It can easily chip away at one’s identity until it feels as though there's nothing left  but a person with cancer.  I see it all around me.  But I’ll write more on that at a later date.  As for me, I’m still the same person even if the concerts are going on without me.  I’ll return with more life experience and more appreciation of my job, grateful to be teaching young people to make beautiful music.  I know they’ll do well tonight.  Go Mustangs!

Transplant #2 - The Numbers

I met with my new team for the allogeneic stem cell transplant.  That’s a transplant with stem cells from a donor.  As expected at the Seattle Cancer Care Alliance or SCCA, the physician and the rest of the team are top professionals in their field.  The doctor spent over an hour explaining the process of the transplant.  It’s complicated and somewhat dangerous but definitely my best option. 

It’s a game of numbers.  20% of people enjoy long term remission, 15% have severe complications and everyone else falls into the middle of more or less complications following the transplant.  It’s a question of how strongly my own stem cells will resist the new cells from a donor.  Until the transplant has taken place, nobody will know how I will accept the new cells.  

The good news is my potential donors are perfect matches so the odds of resisting the new cells is reduced.  My team is still searching for the best of the potential donors.  The date of the transplant used to be set for October 13.  Now, a new date will be set after a donor is confirmed.  

My plan is to be in the upper 20% and get rid of this awful disease for good.  I’ve been ahead of the curve for all of my treatments so far.  That’s probably because of the dozens of friends who are sending me their positive thoughts and prayers.  Please know that I deeply appreciate the support from so many good friends and family.