Thank You!!

After nearly a week off of just resting and stocking up on groceries, I have been given a schedule for the next two weeks.  It’s a ramp up to the actual transplant and the most dangerous time of the entire Summer.  The schedule includes fun activities like a “Lumbar Tap” and new “Hickman Line” placed into my chest, lots of new drugs to take and it finishes off with the most severe chemo concoction I’ve had to date.  

The truth is, I’m actually looking forward to it.  Any steps that help to put this cancer behind me are welcome, no matter how severe the drug or how painful the procedure.  I’m here to get better, not to have a vacation.

That being said, I’ll have a lot of days in the near future with nothing to do but stay in my small apartment and wait for my white blood cell count to grow.  I’m dreading that down time the most.  Practicing the banjo too much will give me tennis elbow and eventually make my neighbors angry.  So with suggestions from friends and musicians, I’m going to learn another instrument.  That’s right, I’m going to find a used, inexpensive upright bass and practice it while I’m recovering from the transplant.  As a tuba player, the bass is my closest string relative.  I usually sit next to them in the symphony.  We play a lot of the same music and I enjoy the sound of an acoustic bass.

I’ll try to keep up on the blog.  I can’t believe the number of people who read it.  I deeply appreciate the well wishes and short notes from people.  Either by email or comments in the blog or text messages, those messages go a long way to keep up my spirits.  Thank you for that!  For those who don’t write, don’t worry, I see how many read the blog and that’s also reassuring.  

Specifically, thanks to those who have supported my situation either through “positive thoughts”, prayer, cards and just not ridiculing my forced haircuts.  I feel extremely supported and it makes me realize that there are individuals who are much, much worse off than me but don’t have the support of dozens of friends and relatives.

Recovery Time

As promised, the doctors did let me out of the hospital on Sunday.  The fevers were gone, the stem cells were stored in a sub-zero freezer and my hair was starting to rapidly fall out.  It was a relief to wear pants again and a shirt with sleeves that didn’t extend below my fingertips.

After meeting with my team on Monday, they explained that the next couple weeks are reserved for recovery.  I have very few appointments and not a lot to do.  I mistakenly thought I had a mini-vacation.  But I now understand what they meant by "recovery time."  I'm constantly sleepy, I can't concentrate and I certainly don't feel like I'm on vacation.  I'm flat out exhausted all of the time.  

But with chemotherapy hair-loss, it was time to get a transitional haircut.  As soon as I left the hospital on Sunday, I asked the lady inside my phone to locate a haircut place that would be open.  She said there was a “Great Clips” just a few blocks away.  I was there within ten minutes.  A fifty year old Asian lady with a  very modern haircut herself took me back to her chair immediately.  I explained that I wanted about a 1/4 inch of hair left everywhere before it all fell out.  It’s a haircut I was familiar with as a child of four and five.  It served me well then, It could work one more time as my transition to baldness.

In my mind, this haircut would take about two minutes.  She set the length on her clippers and as predicted, two minutes later, I had a crewcut just like I did in 1964.  Quick, easy and not as bad to look at as I had expected.  But then, she got out the scissors.  She snipped individual hairs, straightened edges, looked over my nearly hairless scalp as if she were creating a work of art.  I was impressed with her intense focus and the obvious pride she had in her work.  And all of this effort for a haircut that would only last a few days before complete baldness.  She worked on the “simple buzz cut” for fifteen more minutes before pulling out the hand mirror so I could inspect the back of my head.

So, it was cashier time.  A regular haircut was $17.  I thought that was high for a "Great Clips" but I planned to tip her well.  I’d never had such careful and thoughtful attention directed at a simple haircut.  Then she said simply, “no charge.”  I didn’t know what to say or how to respond.  Like anyone stricken with cancer, I’m certainly concerned about how to pay the big bills but I’m not so needy to worry about a $20+ haircut.  She knew I was from Alaska and that my stay in Seattle was temporary.  She knew that she would in all likelihood, never see me again.  All of this flashed through my mind before I mumbled a simple “thank you” and left her a tip with the first bill I could find in my wallet.  I dropped a $10 bill on her table and quickly escaped.  Her simple act of kindness to a complete stranger was one I'll always remember and appreciate and hopefully pass on to others.

The next big event will be around August 14.  That could be the day they pump me full of a nasty chemo called Melphalan.  In high dosage, it kills all of the bone marrow and white blood cells.  On August 17, they will give my frozen stem cells back.  Those stem cells will regrow bone marrow and the first transplant will be complete.  

Stem Cell Collection is Done!!

So yesterday was the big day to collect stem cells.  The idea is they keep collecting for up to five days until they have enough.  In my case, they needed 10 million.  I'm very pleased to report, that they collected 46 million stem cells yesterday so I'm done with it.  I just met with the doctor about it.  He called me an overachiever and in this case a record breaker.  I call it lucky to be done with it.

30 year old centrifuge machine
This was after about an hour.  My stem cell
collection bag is the one that looks like tomato juice.

The actual procedure was a lot like I described in the last blog titled, "Time to Harvest."  But there were a couple variations worth sharing.  They had me lying in a hospital bed with mega IV needles going into each arm.  My right arm wasn't allowed to move at all and had a huge needle going half way through my elbow which provided all the encouragement needed to keep it still. 

My left arm was allowed to move but with restrictions.  So first comes the itching.  I could only reach  one side of my face with my left arm.  I believe that was the only portion of my body that didn't itch for the entire five hours.  I could ask for help with scratching but it seemed to only encourage other itches to surface.  I could have kept three people busy for five hours straight doing nothing but chasing down itches.  So I just mentally told each itch that it's not getting a scratch so it might as well go away.  It didn't work.  

They only other frustration was having to use the bathroom.  They were pumping in large volumes of fluid for the entire time so I was going to have to solve this problem quickly.  I had two options.  This first was to simply ask the nurse to take care of it.  She would handle the plastic thing and work on my clothes and finally have to handle other things to make it all work.  I guess I'm a little shy that way, so I went with option two.  

I had leg mobility, extremely limited use of one arm but my torso had to remain absolutely still.  I also had access to everything in the hospital room.  I asked for the plastic jug, two washcloths folded four times, an extra sock and two feet of dental floss. While alone, I worked it as if the clock was ticking on a bomb and I had to diffuse it.  But within a couple minutes, problem solved and life couldn't get any better.

As for the future, the doctor wants to hold me in the hospital for one more day to see if my fever goes up again.  He's almost certain I'll be released tomorrow (Sunday).

Mike

Time to Harvest!!

Current View From My New Room

I have to start with a disclaimer...I'm on drugs, a lot of drugs.  These drugs claim to fix dozens of ailments.  According to their claims I should feel like a super hero and fly out of my hospital room.  Instead, it takes me five minutes to hobble to the bathroom which is six feet away.  I got stuck on the way to the bathroom today because my 5XL hospital pants suddenly fell to the floor (like a classic clown routine).  It took another five minutes to bend over to pull them up.  (Before you visualize the wrong thing here, I was wearing appropriate fitting boxers.) The reason I'm laying out a disclaimer is, it's late and I don't want to ask anyone to proof read this late.  So please forgive me if I sound like a cranky, cancer patient who is too drugged up to make any sense.

Tomorrow morning, I will be hooked up to a centrifuge machine that cycles my blood in and out of me.  It also collects stem cells during this process, which is called apheresis.  Yesterday I was told that the earliest that they would collect my stem cells would be Saturday, but surprisingly, I have plenty of stem cells floating around in me now so Friday will be the day.  Like the salmon runs up the Kenai and the Copper, there's only a small window of opportunity for my stem cells to be caught, so they have to move fast.  

The bad news is they have to do an alternate method of extracting the stem cells.  Since I don't have a chest catheter any longer, they have to do it through an IV needle in each elbow.  I'm told the needles have to be wide enough to handle the large quantity of blood.  They also have to be very long.  I don't know why they have to be long other to appear more ominous.  One of the needles is rigid and goes through the bending part of my elbow so I cannot bend my arm for five hours.  In fact, they said I won't really be able to move that arm at all and the other arm is only slightly more flexible.  As they were describing it to me, I was picturing the prisoner on a table with arms strapped down for a lethal injection.  If the doctor comes out wearing a black hood, I'll know this cancer stuff was really just a dream and it will be "Good to Touch the Green, Green Grass of Home."  (How many of you got that reference?)

If they gather enough stem cells tomorrow, then I can look forward to no more growth factor shots and no more bone pain!  If they don't get enough tomorrow, then I will go back in for another session.

The picture you see is my view from my hospital window.  Yesterday I was moved from my room in Intensive Care (because they needed it for someone who actually needed intensive care) and put me into the new wing on the 8th floor.  It's a big, fancy modern room with a bed, recliner and a sofa.  The first thing my doctor said when he walked in was "Wow! This place is bigger than my house!"  He's a funny, super intelligent guy, someone you would like to go have a beer with sometime.  The head nurse is also amazing, very informative and I always feel like she is watching out for me.  And for the past two days and for tomorrow as well, my regular nurse is a young lady who is moving to Anchorage in September.  I told her that she would have no problem finding a job.

Thanks again for your support and well wishes,

Mike

Neutropenia

So last night, I started to pick up a fever which is no surprise considering the casserole of drugs that are currently floating around in my bloodstream.  Like a good little cancer patient, I called the nurse to report my fever of 102.0.  I thought surely, this will pass over.  She'll tell me to take a Tylenol and call her in the morning.  Instead, she told me to get to the hospital as soon as possible.  All this because I'm neutropenic.

I had no idea what "neutropenia" meant until last night.  It means my white blood cells are dangerously low and in my case becoming lower by the minute. This was completely expected and is a part of the overall transplant process.  It means things are progressing as they are supposed to.

So instead of practicing my banjo or carrying on with normal daily activity, I woke up this morning with a hospital gown that is literally 4 sizes too big and pants that go up to my armpits and still drag on the floor. The hospital must have gotten a deal on gowns for Sumo Wrestlers and Pro Basketball players.

But the view from my hospital room is of Husky Stadium with Lake Washington in the background.  The food is great and the staff is amazing (both kind and smart).   So I'm kind of on a vacation here.

Rough Schedule:
  (edited at 6:30 pm, Tuesday.  They changed my surgery date to Thursday)
Monday Night  - Admitted to the hospital
Tuesday - Just chillin' and feeling weak
Wednesday - Chillin' and felling weaker
Thursday - Most Neutropenic / Short surgery to install a new chest catheter
Next three days or so - Start to collect my stem cells
I'm pretty sure they release me from the hospital around here
Just days later - kill off all of my bone marrow - put the stem cells back in me
Recover

Thanks again for your interest.

Mike

Banjo Time!!

I've found that I sound best with still
photos of me playing the banjo.

It's Banjo Time!!

It's been a rough couple of days but the worst is over.  I got back from the hospital on Thursday, had a miserable night of side effects, nausea, rashes, coughing, fever, severe acid reflux.  But now, it's mostly back to normal and time to pull out the banjo!!  I love the banjo.  I know I'm not supposed to.  My degrees are in music (Bachelors and Masters) but I can't help it.  I still like the banjo.  

I'm pretty sure people around me also like it because they all seem so polite whenever I start playing.  If I'm in line at a barbecue and just pick up my banjo, everybody gets out of line and lets me go first.  When I practice it on the roof of my building (which is a very popular place) the other tenants must sense that I need alone time because they leave almost immediately.  When I play it in my apartment, tenants on all four sides bang on their walls.  I think they're trying to keep the beat but they're really bad at it.

As for the treatments, I'm receiving daily shots to boost the output of stem cells so they can be collected in just a few days.  That means my white blood cell count will be near zero next week and  I'll be avoiding human contact.  They say playing more banjo may also help with a self imposed quarantine.

Feelin' Good

I'm hoping this picture may answer a lot of your questions I've had via email.

I feel pretty good even though the bags of chemo behind me are currently flowing through my bloodstream.

The biggest benefit of being an oncology patient is they have to pump the drugs into the chest so the hospital gowns actually open in the front!!!!

Okay, it's not the most exciting news in the world but I'll take whatever I can get.

Back in the Saddle Again

Sing to the tune of “Back in the Saddle Again”.  (If you don't know the tune, look it up on YouTube)

Back getting Chemo again

Cause poison can be my friend

It kills all the bad cells and some good ones, too

Back getting Chemo again

So, after Monday night, with chemo medication leaking all over my clothes, they tore out my chest catheter.  Instead of using that piece of defective hardware, they’re putting chemo into me through a port that was inserted into my chest a few months ago.  

To be honest the worst of it is the bloating.  I weigh 13 pounds more than when I walked into the hospital on Saturday.  It’s all temporary bloating caused by steroids and tons of fluids that they are pumping into me.  If it gets any worse, I won’t fit through the hospital room door.  When they discharge me (hopefully tomorrow) they may have to just roll me sideways down the hall and to my car.  Then I’ll be visiting the bathroom every 10 minutes until 13 pounds of bloat is all gone.

If they do release me tomorrow (Thursday), the next step will be a series of blood tests to see how effective the chemo has been.  At some point, they will have to give me a new chest catheter before they can harvest my stem cells. Then they will move on to the actual transplant. 

Two steps forward and one step backwards

Just two hours ago, my chemo was abruptly stopped.  The actual chemo medication was leaking from the catheter in my chest.  So I'm now receiving an antidote to the chemo medication.  Otherwise the leaked chemo could kill the cells inside or on top of my chest.  This will just delay the entire process by at least three days.