More Banjos

My sister, Cathy stopped by my little apartment for dinner tonight.  She helped me cook and she brought her banjo!  I discovered the one thing that sounds better than a 5-string banjo...two 5-string banjos!!!  She’s a very good player and she’s taking lessons.  I expect to see her on stage pretty soon.

In other news, I learned today that my stem cell donor can’t do the procedure.  For whatever reason, I’m without a donor right now but I should have someone lined within a few days.

Cancer is going down

Today is a big day for medical news.  I’ve been anxiously waiting for a report on how much cancer is left.  The last report was more than a couple months ago.  So the news is that the cancer has retreated to the lowest point since it was discovered.  My medical team is very pleased with these results!  My doctor said the chemotherapy that I received about a month ago will continue to reduce it for a couple more months.  

In just two weeks, I’ll receive the donor stem cells which should also fight the cancer cells and even possibly wipe them out for good.  Now that I’m switching from one transplant to another, I also have to switch teams.  My current team (for one more day) is made up of the brightest people I’ve ever met.  They will be missed.  But I’m already hearing about individuals on my next team and the reports are very much the same.  The Seattle Cancer Care Alliance is famous throughout the world for getting results.  I couldn’t be in better hands.

Steroids

Steroids are amazing.  A new drug was added to my long list of pills last week.  I took it for four days and broke out into an upper body rash.  It itches all the time, especially at night.  So yesterday, the doctor gave me a steroid injection, claiming it should get rid of the rash by tomorrow morning.  Well right now is tomorrow morning.  The rash is as bad as ever BUT after two hours of sleep, I’ve done two loads of wash (including ironing), made the bed, cleaned the kitchen, sorted all of my pills, etc.  I’ve done about three days of housework since I gave up trying to sleep at 4:00 am.

I feel like I’ve had twelve cups of coffee but I haven’t had one.  So the steroids didn’t help the rash but they certainly helped to clean things up around here.  I’m going back this morning for another dose.  

In other news, some of the tests that I took yesterday will show exactly how much cancer is left in me after the first stem cell transplant.  There will no doubt be at least some cancer cells in the form of tumors.  That’s why the second transplant is needed.  The results of those tests will be out on Monday.  Hopefully the number of cells will be minimal.

I had better stop writing.  It’s after eight so I can vacuum now without waking up my neighbors.  

Goodbye for now Alaska

Goodbye Alaska.  Hello Seattle.  I had a great week in at home in Alaska.  I visited my school and all band classes and I visited with some friends at an Anchorage Symphony rehearsal.  It was great to be back but now it’s back to business.  For the next four months, I’ll be in the Emerald City undergoing treatment.  I’ll be getting an Allogeneic Stem Cell Transplant.  

When I started treatment in June, I was completely unaware of the number of tests that I would have go through.  They want to make sure that I’m healthy enough to survive the transplant.  Here’s an example.  My actual schedule for tomorrow is:

7:00 am - Blood Draw

7:45 am - RN Assessment, bed 2 (prep for bone marrow procedure)

8:00 am - Bone Marrow Aspiration Procedure (without sedation)

11:30 am - University of Washington Medical Center, treadmill test (after fasting for 12 hours)

3:30 pm - Rose Team Clinic (with my nurse, physician’s assistant and doctor)

4:30 pm - Dressing change (for the hose coming out of my chest)

All of the morning schedule will be while fasting.  I have a date with a pizza at about 2:00.  The blood draw is almost a daily activity.  The bone marrow aspiration is usually under sedation but my schedule won’t allow that.  They drill a hole into my hip to take a sample of my bone marrow.  I’ve done it twice before.  It hurts.  The treadmill test is new for me.  They are going to take pictures of my heart at different levels of relaxation and exhaustion.  The clinic happens at least once each week and the dressing change is also a weekly event.

In other news, I was able to haul my small “F” tuba to Seattle.  I’ve been practicing a loaner from a tuba player in Bellingham.  My sister borrowed a small “Bb” tuba from a friend.  I don’t know the owner but loaning a tuba to me was one of the kindest things anyone has done since I’ve been here.  But now that I have my own tuba, I’ll be able to play loud and bold from the rooftop.  I plan to finish the grueling schedule tomorrow evening with a rooftop recital for the birds and anyone foolish enough to leave their windows open.

North to Alaska!

It’s been a long time since my last blog.  I have been keeping a secret for the past few days.  My doctors gave me a week off from medical visits to go back to Alaska.  I kept it a secret because I wanted to surprise my students with a visit to the advanced band.  I was expecting to say “Hi” and spend a few minutes giving words of encouragement.    Music classes are unique in that a typical student will take the class for four years in a row.  They get to know their teacher and their teacher knows them extremely well.  

I walked into the band room and it was indeed a surprise.  But I wasn’t expecting the spontaneous reception of cheers and applause.  There were some tears and emotional moments.  The reception was also a moving experience for me and it felt so good to see so many bright, smiling familiar faces.  My plan was to offer encouragement to my students but their kind and enthusiastic response made my intentions backfire.  I was the one who was encouraged to rid myself of disease and get back to work.  

I explained that I was done with one transplant and starting another.  We talked for a bit, took some pictures and had a great time just visiting.  But sadly my visit was both a hello and a goodbye.  I’m going back to Seattle for about four months for the next transplant.  Seeing my students was uplifting but saying goodbye again was very difficult.  This experience leaves me with two conclusions that have gone through my head over and over since my cancer was first discovered.

First, cancer is such an awful disease.  Second, even though I was somehow selected to have cancer, it could be a lot worse.  I have a good chance of experiencing long term remission.  As difficult as it is to be in treatment for several months, I’m one of the lucky ones.  And although I miss my students, I will go back to Seattle feeling inspired by their support and the support of all the wonderful people I work with at Chugiak. 

Transplant Number Two

Stage two:  The first transplant is almost complete.  Plans for the second transplant are starting to materialize.  The second transplant involves taking stem cells from a stranger and mixing them with my own.  The new stem cells will hopefully recognize my remaining cancer cells as bad guys and destroy them.  

The donor that has been selected and lives somewhere in Europe.  That’s all I know about him/her.  That person is going to a hospital around October 10/11 where they will have their stem cells extracted.  A courier will hand carry the fresh stem cells from Europe to Seattle where I’ll be waiting in the hospital to have them infused into my bone marrow.

After that, I’ll be on lots of new medication to try to reduce the possibility that my body will show resistance to the new stem cells.  The possible complications can be pretty serious but chances are, I’ll sail through without difficulty.  Who knows, if my donor is from Norway, I may be able to speak Norwegian when this is over.

I'm Back!

I’m back.  After the week long hospital stay and a few more days of recuperating, I feel like I’m finally rejoining the human race.  It was a little rough at times but I just kept reminding myself that the down times are temporary and the good times will be forever.  As I’ve regained my health, I start to notice things around me that had no meaning whatsoever while I was feeling sick.  First, I noticed my computer and realized I’ve been very negligent at keeping up with these blogs.  Then I could finally see the banjo in the corner, waiting to be picked up.  The do-it-yourself generator project is in another corner.  But I’ll know I’m in complete good health when the tuba calls out to be played.  It’s very difficult to play the tuba or at least play it well with any physical ailment.  I’m almost there.

My status for now is I’m on day 20 of my first transplant.  Twenty days ago, they put my own stem cells back into me after killing off all of my bone marrow.  The stem cells have rebuilt the bone marrow and the marrow has been manufacturing blood, including the all-important white blood cells.  I now have more white blood cells than the average person but they are new to the world.  They have no memory of previous illness and they are considered to be too new to be completely effective.  Only time can make those white blood cells stronger and more able to do their job.

So now it’s time to start looking at transplant number two.  This one will be using stem cells from a complete stranger.  The good news is that a letter showed up in my mailbox yesterday afternoon that was very reassuring.  I have “multiple 10/10 donor matches”.  That means there are multiple donors available who are a 100% perfect match to my genetic makeup.  Transplants are frequently done with less than perfect matches so I feel lucky that my genetic code is more common.  The next question is whether or not one of those individuals can come to Seattle for the next transplant.  

The doctors have told me that the donor stem cells need to be fresh.  They take them out of the donor and put them directly into the patient.  There is a high chance of some level of rejection which is why this transplant has a very long recuperation period.  At this point, I’m just waiting to find the perfect match and waiting to find out if they can come to Seattle and when.

Today will be a special day, hopefully in a good way.  I have a first cousin who is coming back to Seattle for treatment for a nasty version of leukemia.  I believe he’ll be staying in my apartment building which is specifically for transplant cancer patients.  As much as it hurts to see a close relative suffer with such a dreadful disease, it will still be great to see him.  He’s a retired teacher and a musician.  He even plays the banjo.  Who knows, there may be some rooftop banjo duets coming from the “Pete Gross House” apartment building in the near future.  I’ll keep you posted.

Engraftment Syndrome

They let me out of the hospital on Friday.  They still had no idea why I had been getting fevers and headaches and other symptoms.  So it’s been a rough couple days without having a solution.

The good news is, today (Sunday), my doctor decided that I have engraftment syndrome.  The symptoms fit perfectly with what I’m going through.  She gave me a steroid shot and I’m already doing much better.  Fevers are gone, headaches are almost gone.  But by tomorrow morning, I should be doing cartwheels.  

Will the Docs Let Me Go???

I’ve been in the hospital for a week now.  The doctors have been searching and searching for the source of my fevers but they can’t find one.  They did find one single medication that keeps my fever down and also erases the headaches and coughing.  Ibuprofen takes care of everything.  So now that we have a method of controlling everything, I’m hoping they will let me get out of here today.  

It’s been a rough week.  The severity of the headaches was pretty intense and the uncontrollable coughing and vomiting would keep me awake for entire nights.  But it’s finally over and now I just have to focus on leaving the hospital.  So how do I convince a team of doctors that I’m ready to check out?  I have a plan.

Normally a team of four doctors arrives in my room at 10:00 am.  That’s just 10 minutes from now.  I have to look and sound like a completely healthy person.  So before they arrive I plan to clean up my room, make my bed and comb my hair (just kidding).  I’ll be sitting on top of my bed with a smile and a greeting.  In my mind this is a foolproof plan.  They will have to let me go.