Tuba Christmas Time

The Alaska Tuba Christmas started twenty-one years ago by yours truly and the then commander of the Air Force Band of the Pacific.  The two of us traveled around to various radio stations and played live duets on the radio.  At one radio station, we finished our promotion, then the D.J. asked me if I would play “Happy Birthday” on my tuba.  I didn’t think anything of it, played it and went on my way to the next radio station.  About fifteen years later, somebody asked if the recording of Happy Birthday, performed every day on the radio, was me.  I realized that my version of Happy Birthday was played every day for the past fifteen years as they would do daily birthday announcements.  That’s over five thousand broadcasts of Happy Birthday!!

We started the Anchorage Tuba Christmas with a different conductor each year. It was nice to work with a variety of conducting styles.  The first Tuba Christmas was rehearsed and performed just outside the Alaska Center for the Performing Arts.  That was a bad idea.  We forgot that Alaska in December can be a little cold for brass instruments.  Players were rotating in and out of the lobby to warm up their instruments and unfreeze their valves.  Now, it’s held in the lobby which is a fantastic performance venue.  This will be the first year that I will miss the Alaska Tuba Christmas since it started.

However, I’m now in the Seattle area where there are a lot more tuba players and more Tuba Christmas events.  I may get to play in three Tuba Christmas events this year.  Tacoma is first on December 1.  If I’m allowed to travel as far as Bellingham, the second performance will be in Bellingham (my home town) on December 5.  My college tuba professor is conducting that one.  The third is December 19 in Seattle.

The only unknown is my health during the performance days.  I’d like to attend all three unless I’m feeling weak at the time.  The doctors tell me that as time progresses, my good days will increase.  Hopefully, the 1st, 5th and 19th will be among those.

Misery

I'm not an authority on pain. I don't have vast experience of suffering. So many people are experiencing misery beyond my ability to comprehend. I just woke and cannot sleep due to some flu like symptoms and felt the urge to write down my thoughts with my phone.  Even though my level of suffering pales compared to so many around me I feel like I stood at the edge of the bottomless pit of misery and looked into the blackness.  It's not just death. It's complete loss of hope along with the constant agony of pain and symptoms too numerous to mention.

My glimpse at true misery occurred recently as my condition passed an entire year of treatment. The constant bombardment of sickness for so many months feels like weights pulling me toward that pit.

To be clear, I am not in constant agony though I've tasted it. I haven't given up hope though at times I've wondered if that would be easier. I looked into the pit without falling in. I've had the deepest heartfelt sympathy for the poor souls who have fallen. They're all around me. 

It's impossible to be here for so many months without feeling their pain. For my part at the clinic, the least I can do is offer hope. I use humor to try to make them smile. I tell transplant patients that I'm doing incredibly well which gives them hope for a similar outcome.  I do my best to care and assist when needed. Some people just need to have their pain acknowledged by another person.  I'm not a saint for helping others at the clinic. It would be impossible for anyone in my condition to ignore them and I'm not alone.  Encouragement and kindness are shared from many fellow cancer patients. 

The dominant symbol of encouragement comes from the clinic itself. Every day, hundreds of us flock to the clinic, knowing the drugs will make us more sick. We flock even though they take away our immune system and cause added misery. We flock because with each awful pill or infusion or radiation comes a glimmer of hope. Even in cases where that glimmer is faint, it's everything for some. It's their only chance at climbing out of that pit. The faint glimmer becomes a bright beacon of hope. The hope is not just for survival but for the dream of just feeling normal again. 

I'll read this tomorrow and probably delete it. Writing on a phone while heavily medicated with a headache in middle of the night will probably embarrass a clear minded, daytime self. I need to sleep. 

Missed Another Concert

The all state music groups were hosted at my school this year. The concert was Saturday night. Nine of my students made it into the all state band and two were first chair.  

I asked my doctors about traveling to Alaska for just one day to hear the concert.  They talked about the various infections and complications that could lead to death or lifetime disability if I did make such a trip. Since my immune system is currently compromised, it would be a very dangerous thing to do.  After a day of weighing my options, I decided to play it safe and remain in Seattle.  It was a difficult decision. 

My day to to day health is generally improving. I'll have one or two good days, then a couple bad days (including today). Hopefully the bad days will happen less frequently as the new cells slowly become a part of me.  

As for Thanksgiving, I've been invited to four different homes in the Seattle and Bellingham area.  My doctors have also warned about being around any cold or flu viruses this time of year. Apparently, it could have devastating effects to somebody in my condition.

For a neutropenic patient, I've been somewhat careless in the past so I'm trying to be better at preventing sickness. So many people have invested greatly into my health. It would seem a shame to blow it all for the sake of one evening of visiting friends. 

Music versus Cancer

Things are looking up. I just had a practice session on the rooftop. It's the first since the transplant but instead of actually practicing, I just performed for the birds and construction workers who are on the adjacent building.  

Playing beautiful music on a beautiful instrument is the best therapy ever. For those moments, all of my aches and misery were diminished.  It's seems like the ugliness of my disease can't compete with the beauty of music. 

Day Eleven

It's day eleven. That's eleven days after the second transplant.  There are so many ways to count those days. It's also eleven days of not touching a musical instrument (due to illness), eleven days of being ill in so many ways, eleven days poorer due to medical expenses and eleven days of being away from my home and my job.  That sounds depressing but there is a blinding bright light around the corner. 

The light is there. I can't quite see it yet but I know it's there. Since the transplant, I've noticed a slow but steady improvement.  I'm starting to at least think about practicing and how the world works. I'm imagining a return to a normal and healthy life without three or four medical appointments every day and I'm walking a few blocks without agony. 

All of this is a welcome shift from focusing on illness without a care about anything else.  My thoughts are becoming my own rather than just a reaction to various illnesses. The light around the corner is close, very close. 

Morning Thoughts

I remember waking up and going through my to-dos for the day. There would be a few thoughts about which pieces were to be rehearsed in band and why.  Motivating the students to practice would be most of the battle for the day. The symphony rehearsal that night would come to mind along with the difficult passage that needed some private practice time before the rehearsal. Other more wild thoughts were always there like how to create an extreme low gear linear generator or building a computer numeric controlled lathe. Some thoughts would come to mind about making conducting batons and selecting the most beautiful exotic wood for the handle. 

All of that is gone for now.  I just woke and realized my daily morning thoughts are just a list of questions.  Will I throw up this morning?  Will the almost daily changes in medication change make my nausea worse today?  Do I have a fever?  Is the pain level better or worse than the day before?

My questions are those of a victim. I no longer think about taking control of my own life.  I wait for bad things to happen and hope it's not as bad as yesterday. Knowing each day is a day closer to eventual health is the one positive thought that I force upon myself. It's a progression in time that keeps me motivated to going through another day of feeling miserable. 

I'm sorry for sharing such darkness. I just woke, grabbed my phone and started writing my morning thoughts while still in bed. On the positive side, this is temporary. I'll still smile when I meet other patients today. I'll still go out of the way to help those in walkers and wheelchairs. When asked how I'm doing by passers by, I'll still say "fantastic" as I race to the bathroom to be sick again. It's the truth. Compared to others who are much worse off, my outlook is fantastic. I'll be back. 

Rough Times

I'll admit it. The last four days have beaten me. Since the transplant on Friday, I've been sick in every way imaginable.  No practicing, no projects, no leaving the apartment except for one mad dash to a costume store to support the blog from yesterday.  

It's supposed to get better and I can already feel some improvement.  I'm not going to sign up for the Seattle marathon but I should be in good health within a week. 

Hair!

I was told my hair might come back differently. I guess they were right.....

Thanks Brian!

Done!!

I'm very cold, tired and have a headache.  The only serious thing that could've gone wrong so far didn't. Sometimes people get an initial and severe negative reaction.  So everything is going as well as can be expected.  It's great news. I just need to rest. Thanks again for your support.

So far, so good

 This will be something new. My transplant has another hour or so before it's finished. I'm sending this blog with my phone.  Since my thumbs can cover half the keyboard at a time, please forgive some inevitable typos.  I'm currently in a corner exam room on the fifth floor of the SCCA building.  It's already dark outside but there's lots of activity inside.

The infusion started at 4:20 which was about 50 minutes ago.  Things are going well. They check my blood pressure and temperature every 15 minutes. My son David is sitting at my side in case something goes wrong.  So far, there have been no bad reactions such as fevers, chills or shaking. It feels perfectly normal.  They will continue to monitor my status over the next few days, including the weekend.  I have appointments on both Saturday and Sunday. I was hoping to leave town for the weekend with a hope that they don't notice but I don't think I can get away with it this time.

So far, so good.

No Worries

It’s the night before my busiest day so far.  I have six medical appointments tomorrow, ending with an infusion of stem cells from an unrelated donor.  

I sincerely appreciate the overwhelming support that I received from so many people.  However, I am concerned that many are more worried about this transplant than I am.  Regardless of the statistics, tomorrow will be a busy but somewhat normal day and the days and weeks following will be routine recovery time.  There isn’t a need to worry.  

According to the doctors the most common symptom will be fatigue.  I’ll still do my best at keeping you informed through the blog.  Thanks again for the well wishes and support.

Two Days to Transplant

There are only two days until I receive stem cells from a stranger from somewhere in Europe.  It all happens on Friday and believe me Friday can't come soon enough.  

I'm currently in a dark room on the infusion floor of the Seattle Cancer Care Alliance building. I'm laying down on top of a hospital bed with the infusion pump right behind me, injecting another toxic drug called "Fludarabine". This is part of my preparation for the transplant on Friday. On Friday morning I am scheduled for full body radiation, then the transplant will happen in the afternoon or evening depending on when the cells arrive from Europe. 

All of the pre-transplant treatments are intended to prevent graft versus host disease or GVHD. These treatments reduce or suppress my immune system so my body is less likely to fight the new cells.  

The best I can expect is that I will get a little bit of GVHD. That way, the new stem cells create an immune system that will fight the cancer cells without me getting terribly ill.  The worst case scenario would be getting extremely sick from GVHD. The medical staff would have to drastically suppress my immune system which would open the door to pneumonia and a host of other serious ailments.

Unfortunately, we won’t know how much GVHD I’ll have until about two weeks after the transplant.  I tend to get along with people that I don’t know.  Hopefully my immune system will have the same tolerance while sharing my body with a new immune system from a stranger.

The Cold, Hard Truth

This is the week.  My son, David and I will have a training session today (Sunday) regarding the second transplant scheduled for this coming Friday.  I was asked months ago if I wanted to receive this transplant.  The doctor gave me the numbers or odds of success.  It was daunting to say the least.  Yes, some patients die from the transplant itself.  Others are nearly cured.  Most are somewhere in the middle.  Without it, life expectancy is around three years.

This transplant makes me feel like a game show participant deciding on which door to open, but a brand new car is not hiding behind any of the doors.  Instead, one door is a long term remission (20%), another is probable death within a year(15%), the third door offers a life changing disability, and still another offers life with cancer and further treatment down the road. 

Once I receive the stem cells from a 24 year old donor somewhere in Europe, there’s no going back.  His stem cells will become a part of my genetic makeup.  They will create white blood cells that will hopefully fight the cancer cells.  But they may also go to war with my own good cells and do what white blood cells do best, kill the enemy.  In this case the enemy is me.

So as the doctor was explaining the odds I certainly wasn’t excited or jumping around with anticipation of winning something that I don’t deserve. I would be a terrible (calm) game show participant.  Instead, I gave it a few seconds of thought, then signed several documents, agreeing to go through with it all.  It was literally a “life or death” decision but one that was easy to make.  I choose life.