Self diagnosis

For the past several months, I've resisted the temptation to think that I know what's best for me.  While surrounded by medical professionals, many with decades of experience regarding multiple myeloma, it seemed foolish to state my opinion or to diagnose myself regardless of my certainty.  Now that I'm more on my own, I'm free to make decisions about personal health, decisions that may determine how much activity to expend in a day or which optional drugs to take.  It's a very different direction from my Seattle day to day life and so far, I enjoy it very much.

The looming question is about activity.  Should I be working?  The doctors in Seattle strongly cautioned against it.  They didn't say with certainty to stay at home every day but the protocol is to not work for an entire year after an allogeneic transplant.  This is where I believe my case is different from others.  It is no doubt best for some patients to recuperate for a year before resuming activity.  Everyone responds to the treatment differently and most respond with more medical issues than I have.  In my case, the best treatment is to resume activity as soon as possible and I have rational reasons to make that diagnosis.

I've been in Alaska for two weeks now.  It's as if the medical side effects have been placed on a dusty shelf of my mind.  They're all there but they are not as noticeable.  When I think about it, I still have numbness and painful tingling in my feet, daily muscle cramping in the legs and fingers, various GI issues, extreme fatigue at times, frequent headaches, buckling at the knees, numbness in the fingertips, occasional nausea, pain in the shoulder from radiation and various, weird cognitive issues.  While I was in Seattle, I would have hours each day to focus on these side effects but now, my schedule of work and mental focus on the task at hand doesn't allow for time to think about it.  When a single medical issue flairs up, I notice, otherwise it's not an issue.

I have always believed that working through pain makes it hurt less.  In this case, working through these issues makes them much less noticeable.  However, I'm getting over a very serious disease and I'm still taking ridiculous amounts of strong drugs each day.  I understand that there is a danger in ignoring medical problems.   Without a doubt, certain small medical issues are signs of something that could be serious so I still call the medical team in Seattle with questions.  They are the true experts.

It's Almost Over

My fight with cancer isn't over yet.  That fight will be over within weeks or possibly months.  I will spread the word when I have won the battle once and for all.

I have called the past many months the most difficult time of my life.  That's an understatement.  With well over three hundred medical appointments, more than three weeks in the hospital, countless days of sickness and a relocation to Seattle for eight and a half months, this experience will be embedded in my mind for decades to come.  There were times of depression and sadness, loneliness and solitude.  With each passing day, new issues would surface causing pain, discomfort or sickness.

I noticed that a common question for cancer victims is "Why me?"  That didn't occur to me.  It happens to thousands of people each year.  A different question came to my mind frequently.  Whenever I would see a child at the clinic suffering from an evil that they can't understand, I was compelled to ask, "Why them?"

Not everything from this experience was difficult.  There were many times of overwhelming gratitude to friends and relatives for their concern, their prayers and help.  There were times of feeling healthy which stood out while living in the sea of sickness that surrounded me.  There were also countless moments of feeling lucky.  So many patients were not taking their treatments as well.  I was asked who I was taking care of dozens of times by others who didn't realize I was the sick one.  My side effects from medications and procedures were almost always less severe.  It may sound odd for a tandem transplant patient to feel lucky but while I was in Seattle, surrounded by a sea of suffering my feeling of "luck" was compelling.  It was very real while self-pity was not an option.

My most constant certainty was a determination to own my body and mind.  There wasn't a single day when the cancer didn't try to enter my soul, to become the primary occupant of myself.  Every sickness, fever, pain and discomfort felt like another attack, another attempt to enter my identity and convert me from a person with cancer to a cancer patient who used to be me.  That certainty to keep ownership of myself was my motivation to keep going, to push through to the next procedure, to endure whatever punishment the drugs could give me and to stay positive in an environment where enormous doubt hung over people like an unforgiving storm cloud.  Holding my own identity allowed me to dream of the future beyond cancer, to focus on life long projects that are meaningful and to treat cancer as a temporary bother rather than an all consuming evil that has already taken so many.

As with several other patients who remained positive,  I found it to be therapeutic to share that attitude with others who were not as fortunate.  Lifting a cancer patient's spirit with a story or a joke or just a smile became a personal mission that was probably more beneficial to me than those who I was attempting to help.  It gave me purpose beyond my own health and allowed me to forget that I actually had a worse case of Myeloma than virtually everyone around me.

All of this is in a past that I don't plan on repeating.  The focus now is to enter another medical phase called recovery.  My immune system is medically suppressed.  I'm constantly reminded by medical personnel that germs can kill.  As expected, I have chronic "Graft versus Host Disease" or "GvHD."  That's the disease caused by a fight between my body and the foreign bone marrow and blood within me.  As with so many possible side effects that surfaced, my symptoms were different and fortunately not as severe as others.  I've been warned that people still die from GvHD but my symptoms have been tamed by more drugs.  This new disease is not a daily issue for me.

Currently, I take about thirty pills each day, each prescribed by the doctors in Seattle and each with a long list of possible side effects.  I'm experiencing some of those side effects every day but my work, sharing music with high school students takes my focus away from health issues and gives me a positive outlook to life through the eyes of young people.  But as one great evil recedes, another comes forward.  Now that cancer is not bombarding me each day with attempts to take me, another version of cancer has emerged.  It's time to pay the ongoing and seemingly forever growing bills.  In this case, I do ask, "Why me?"

Now that I have been told countless times by doctors as recently as yesterday to relax and let the recovery happen over time, I've been hit with new medical bills over and over again.  I have been grateful to so many friends and family who have donated to cancer funds in my name to help with these bills but the stress of the constant financial strain makes it nearly impossible to "relax and recover."  I've been hit with countless examples of insurance denials for every reason imaginable.  They add tremendous stress to patients like me who are supposed to focus on physical recovery and wellness. 

One of my required medications is considered a chemotherapy.  It's extremely important to help kill the remaining cancer cells.  The small drug company who sells this drug has put a price tag on a single bottle of twenty-one pills at $14,000.  That's not a misprint.  That's more than I have ever spent on a car.  However, this company has a special program for lower income individuals to sell this bottle of pills for well under $100.  My doctor signed me up for this program without asking and I'm glad she did.  However, yesterday, I received a letter from the company saying they are auditing my finances.  Their concern is that I may earn too much to qualify for their special program.  Now, I'm forced to send a private drug company pay stubs and tax records to prove that I'm not one of them, just a high school teacher with thirty-three years experience and almost two Master Degrees who easily qualifies as a low income person in desperate need of their drug. 

A quick Google search of this company reveals that their top executive was paid twenty-four million dollars last year.  Their seventh ranked executive earns just three million.  I don't know how he gets by.  This is the company that wants my tax records to make sure I earn several hundred times less than they do.  You would think that of all of those multimillion dollar executives one of them could have figured out the price they are charging for each pill.  The answer is $666.  Somehow, that seems fitting.

If not for the forced kindness of friends through donations on GoFundMe and other fundraisers at school, I would be paying the medical bills with credit cards.  I plan to sell a fishing boat in Homer to help pay the bills and I just heard that more fundraisers are on the horizon.  When the fundraisers started, I was terribly embarrassed but the wisdom of one of my high school students described it in a way that I can deal with.  She asked what I thought of her starting another fundraising event.  I told her how difficult it was for me to accept the kindness and especially to accept charity.  She said "Everybody likes you and they really want to help."  At that point I realized it's not really about me.  It fills a need for students to do something for someone they know.  I know that need.  I have put on large fundraising events for music teachers in the past who had cancer.  I felt compelled to help and I realize now that the tables have turned and others feel compelled to help me. 

Writing these blog entries was very therapeutic while I was at the clinic.  I haven't read any of my blogs from the past and I probably never will.  Reading my previous entries would remind me of a pain that I would like to forget and an insight of my inner being that I have never previously revealed to anyone.  I'm more comfortable trying to ignore pain, working through it and going on with my day.

At this point, I'm considering stopping the blog and moving on with life but I'm still getting interest (34 people checked it today before this entry.)  I have also been asked to keep it going by a couple readers so I'll ask you.  Should I keep it going until the cancer is completely gone? My concern is the interest may wane as time goes on.  Please send me your thoughts.  I'm happy to go either way on this.  There will be at least one more blog entry and more if there is interest.


Blog Statistics as of March 9, 2016:

Total blog entries: 84
Total pages viewed:  16,508
Total comments received: 160 (also received more than double that number through standard email)

Top twenty blogs entries, viewed


978 views  “Summary of my treatment” (first blog in July)   
440 views “Two steps forward and one step backwards” - 7/14/15
285 views “Missing a Wedding” - 8/1/15 
184 views “Recovery Time” - 7/29/15 
169 views “Stem Cell Collection is Done!!” - 7/25/15 
162 views “Banjo Time!!” - 7/19/15
147 views “Feelin’ Good” - 7/15/15
120 views “Longer Treatment Plan” - 8/4/15 
119 views “Go Mustangs!” - 8/12/15
119 views “Back in the Saddle Again” -7/15/15
110 views “Misery” - 11/24/15
109 views “Time to Harvest!!” - 7/23/15  109
101 views  “The Cold, Hard Truth” - 11/1/15
101 views “Neutropenia” - 7/21/15 
98 views “North to Alaska!” - 9/19/15
90 views “Dark Times” - 8/26/15 
90 views “Cancer Takes and Takes” - 10/9/15
90 views “Music versus Cancer” - 11/19/15
90 views “Door Decorations” - 12/20/15
90 views “State of the Mike Address” - 1/14/16

Returning to teaching

I suppose the blog can keep moving forward until things settle down.  There have been a couple requests to keep it going.  As the readership falls, I suspect I'll announce a last blog soon.

I went back to work yesterday for a half day (three classes).  That left one Freshman band and a computer class with the substitute teacher.  Students in the left-over band class were apparently upset that my return didn't include them.  So today, I stretched my "half day" to four classes, seeing all of the bands.  It was also a stretch for my stamina but I made it through and I can't describe how good it feels to get back.

There is a phenomena that is occurring right now with my band students at the high school.  I've seen it before so it was completely predictable.  When a teacher is gone for a long period, their value from the student perspective gets highly elevated.  On the other hand, the substitute teacher, who has been fantastic is still labelled a "substitute" and will never measure up to the mystique of the missing, "wonderful" teacher.  This is especially true for the 9th graders who don't even know me yet!

Within a couple days, they will discover that I work hard, I have passion to make them sound like a great band, but I'm really not saying anything to them that they haven't heard from their substitute teacher.  The mystique will wear off soon and that's fine with me.  My high school bands have been extremely fortunate to have a substitute who was in it for the long haul to make it work for the students.  We couldn't have been more fortunate. 

Back in Alaska

Yes, I did make it to Alaska without any issues.  It was an emotional journey to return, mostly healthy and financially broke.  Seattle is a beautiful city.  I'll miss walking without fear of falling on the ice but that's all.  I feel for my fellow cancer friends at the Seattle Cancer Care Alliance but I did my time, I'm still healing and now it's time to move on with life.

On the day I flew back, my jazz band performed for an event.  They were hoping I would be there so I was.  The next night (Friday) was a huge event.  The Improv Club did a fantastic performance as a fundraiser to hep pay my cancer bills.  It was humbling to see donations pouring in to help pay the medical bills.  Although the need is real, I had a difficult time dealing with it.  I've put on large fundraising events for other teachers in the past who had cancer.  I didn't realize that being on the receiving end of the fundraisers was so difficult.  The appreciation I felt when so many want to help is a bit overwhelming.

Some of my students also performed Saturday morning for the "Solo & Ensemble Festival" at the University.  I listened to a few of my older students.  As expected, they were fantastic.  It was great to see other teachers but I had to stay clear of close contact.  That was the busiest I've been in several months so I slept for fourteen hours last night.

Next, I'll meet with my Anchorage Oncologist on Monday and ask if I can start working half-time on Tuesday.  The students seem ready to have me back, the great substitute I've had all year is glad to have some time off and I need to start my old life again.

My last night in captivity

Today was a big day.  I met with my primary doctor this morning to go over the upcoming risks.  She told me to go easy, day by day and stay away from people.  She said I shouldn't work for several months, constantly use sanitizer and no matter what, avoid getting sick.  I admitted that I have a plan to slowly go back to work.  I'm certain people will work with me and understand that a common cold bug could be a serious event for me right now.  The doctor was VERY skeptical but I promised to take it easy, go slow and to keep a bubble of space around myself at all times.

She also told me the new diseases that I am more likely to obtain as a stem cell transplant recipient.  It took her about twenty minutes just to list those diseases.  The list included every possible problem that I could think of, heart problems, eye problems, joint problems, all sorts of organ problems and to top it off, I'm more likely to get another cancer!!  Oh well, one step at a time.

Next, I took my son, Benny to the airport.  He was a lifesaver for the past two weeks.  All of my caregivers have been the best of the best.

My next appointment was the "line pull."  The double hose catheter that has been sticking out of my chest for past many months is now gone.  After the pull, they told me not to lift anything over ten pounds for three days or I could have bleeding issues.  Then this new doctor asked me, "When are you leaving?  "Tomorrow morning by plane," I said.  "Do you have large luggage," she asked? 

I tried to avoid the subject by complimenting her green hospital gown.  It didn't work.  Before I new it, she found out that I'm carrying a forty pound plus suitcase to the airport with two carry-ons and I'm also planning to gate check a tuba!  She was about to cancel my flight for me but I came up with a plan.  I'll get some help.  A former high band friend is the Fire Marshall at Sea-Tac.  Mark has been a great help to me in Seattle.

My last two appointments will be tomorrow morning, then I race to my cousins house in Renton and she (Nan) will take me to the airport.  I'm looking forward to getting on with my life.  I'll try to continue the blog at least until I get back to Alaska.

Time to go to sleep

I'm not sure if my steroid is keeping me awake or the excitement of going home.  It's probably both.  Unless I get sick by tomorrow, I'm definitely leaving Seattle this Thursday.

The Seattle Cancer Care Alliance is an amazing place.  They have saved the lives of so many people who I've met recently, many of them from Alaska.  But there is still a long road to travel in cancer research.  Several patients are not nearly as fortunate as I have been.  I just learned of a fellow Alaskan who received the exact same treatment as I did, went home in December and passed away in January.  She was much worse off than I had imagined but she kept her strength and will to live.  I said goodbye to her in December, assuming she would be fine.

Her illness doesn't compare with mine.  My prognosis is extremely positive.  There is a slight trace amount of cancer cells left but they are diminishing every day.  It's almost unmeasurable at this point.  My new immune system is apparently doing its job by killing cancer cells while I sleep.  I expect that my next test in two or three months will show my bad numbers to be zero!

My good numbers are measured by the friends, family and supporters who have given me such hope and confidence to get through this.  It was by far the most difficult time of my life.  I didn't always share the bad times in part because I refused to accept sickness to become a part of myself and in part because I don't like to share pain with others.  I'll admit that it has been difficult.

Since this is close to my last blog, I'd like to clear up a misconception.  For months, I've received dozens of compliments about bravery, and positive attitude and that sort of thing.  While I deeply appreciate the kind words, it always made me scratch my head a little with confusion.  I'm no doubt stoically stubborn about not admitting when I'm sick but virtually all of my strength to get through this was fueled through others.

A day didn't go by without hearing from supporters who were praying for my health, wishing me health or simply sending a note to say hello.  I've had such overwhelming support, I had no choice but to remain positive.  It seemed like (and still does) the whole world was on my side.  That always gave me a tremendous feeling of strength and resolve to beat this thing.  It came from you, not me.  Thank you for that!!


It's almost 1:00 am.  This is probably poorly written and definitely a rambling blog.  Sorry for the mess.  I may delete it in the morning.

My wall of strength.  There are several hundred names on these cards and posters.  It was a sad to take them down but I plan to read them again and again.

This is the view from the 6th floor of the SCCA.  The 6th floor is the stem cell transplant unit.  This was my view while waiting for over three hundred medical appointments.

Going Home

So yesterday, I was told my release date would be in two weeks.  After, some negotiation, it looks like I get to return to Alaska later this week!!!  Now, I'm in a panic of finishing up appointments and packing everything for a flight as soon as Thursday.

As usual, I get exhausted after just a three or four hours of activity but I'm excited about getting home so I'll get through it.  Thanks again for so much support from so many of you.  There is no disease or or set back in my life that can match the overwhelming support I have received.

Steroids to the Rescue

I've been living on pain killers for the past two weeks. The doctors have been seaching for the cause of my abdomen pain but can't find anything. Just yesterday, they are finally moving on with the best guess that it's an unusual symptom of graft versus host disease.

They gave me steroids to combat the disease and after one day the pain is 50% decreased. I suspect by tomorrow it will be gone. I'll have a clinic on Friday where I'm hoping they will give me my marching orders to head back to Alaska. I'll keep my fingers crossed.

Until then I'm just enjoying feeling so good simply because the pain has lessened. 

Visitors!

I had some visitors yesterday.  One of my high school's best musicians of all time, sax player, David Stockhouse and his family stopped by for a few hours.

David is a perfect example of the type of student I have in band this year. They're polite, friendly, great musicians and ridiculously smart.  I'm baffled how they can say they miss me unless it's for my crazy ability to make group pancakes.  

David's family, like so many at Chugiak has shown me nothing but kindness and support throughout my ordeal with cancer.  Thanks Chugiak Band Family. I'll be back soon. 

Does Cancer Have a Soul?

Cancer doesn’t have a soul, it doesn’t have a goal or a master plan.  It is nothing more than a group of duplicating cells that have somehow become exempt from destruction from their host immune system.  I know that cancer doesn’t have a desire to hurt, in fact it has no desires whatsoever, but if you talk to someone who has had cancer, the chances are they look at cancer as an entity.  In my case, it’s easier to understand and fight if I give my cancer autonomy as a living being within myself.  It has a plan, it fights with strategy and it even has a very dark and ruthless soul.

My battle with cancer has lasted for over a year now.  Agony has been handed out on both sides.  Cancer and the side effects of the medications have inflicted countless hours of sickness and pain directed at me.  In return, I have killed millions of the cancer cells.  The last hold out for my adversary is the tumor in my right shoulder.  Now, that the tumor is receiving an aggressive dose of radiation, the only remaining cancer cells will soon be a small handful of random cells, trying to restart something while my new immune system is working to eliminate them.  At this stage, it would be incorrect to say that I am still “fighting cancer.”  It’s more like a clean-up phase, searching for remaining cancer cells and taking them out before they can duplicate and cause other problems.

Thinking of this disease as a single autonomous entity with an agenda for destruction just makes sense.  It allows me to focus on a foe that I can understand and despise.  It also helps to explain actions by my deadly adversary, actions that would otherwise be explained with scientific terminology that doesn’t have the same motivational effect of fighting an enemy with such an evil and darkened soul.

So now that my cancer is perceived as an enemy with a plan, the agenda for my cancer becomes very clear.  The past eight months of treatment in Seattle have included major attacks against the cancer.  The first transplant killed the majority of cancer cells, the second transplant helped to continue the fight for as long as is needed.  The cancer has been forced to retreat to a virtual defeat.  However, the cancer and medications have also inflicted pain with countless bouts of sickness, fever and weird side effects.  Both sides of this prolonged battle have tasted victory and defeat. 

After a few months of enduring pain caused by my evil adversary, I realized the plan for my cancer was no longer to just cause temporary sickness through various side effects and complications.  My cancer may have even abandoned the original goal of causing death or permanent debilitation.  The over-all agenda was much more elaborate and drawn out.  My cancer was trying to wear me down and eventually break my spirit. It was trying to destroy my soul, my inner strength, my self-identity. 

Now, I’m at the end of my treatment plan.  I survived two transplants, several evenings of shaking chills, episodes of vomiting, fevers, etc.  The list of successful attacks from my cancer goes on and on and on.  The accumulation of these episodes of illness gave me the worst sickness of all, temporary depression and moments of overwhelming loneliness.  But that would all end on February 15th at the latest.  That’s when I can go home and resume a normal, cancer free life.  At least, that’s what I was expecting.  My end date was my light at the end of the tunnel.  It gave me strength to know the end was in sight.  All I had to do was get through the sickness until then.

When I found out my end date was in jeopardy, I thought another end date would soon surface.  My departure would just be delayed by a certain number of days.  However, the genius of my disease was to inflict me with an “unknown” pain in my abdomen.  The fact that it is unknown means I can’t leave Seattle until the cause is “known”.  The end result is an indefinite delay in my departure.  I no longer have an end date.  My light at the end of the tunnel, the same light that has carried me for the past month has been sadly extinguished.

As depressing as this sounds, I am still the overwhelming winner here.  Fortunately, I’m a patient person and I care much more about the overall outcome than an artificial schedule.  I no longer need that light.  As I prepare to leave, whenever that happens, I’m as cheerful as always.  I came here to get rid of this disease and I’ll be leaving Seattle without it. 

Why I can't go home, yet...

Three mild setbacks came up recently.  They came at a time that I should be packing my bags to go home.  The first setback was the tumor that grew back in my right shoulder.  The solution has been to attack it with radiation.  I’ve had seven treatments with three to go.  The radiation doctor told me yesterday that the treatment would destroy the tumor and that it will be gone for good.  The last appointment is this Friday.  So why can’t I leave this weekend?

I still have to take a drug called Revlimid and my doctor wants me to stay for one week after the first dose so he can monitor and treat the possible side effects.   If they give me the drug on Friday, I’ll be able to leave the following Friday assuming all is well.  There is still no word on when that drug will be administered.

The third health issue, keeping me in Seattle is something the doctors claim is a mystery.  A couple weeks ago, my torso became very sensitive to light touch.  It felt like my nerve endings were exposed.  A shirt or bed sheet touching my stomach felt like a mild electric shock.  Then, just three days ago the entire torso (inside the skin) began to ache.  It’s been getting worse each day.  Now, I’m taking lots of pain meds just to function.  The the bottom line is, they won’t let me go home until they resolve this issue as well.  I’m getting a CT Scan on Thursday. 

As much as I’d like to go home, these setbacks may be a blessing in disguise.  If these issues have to be resolved at some point, I’m glad they are being analyzed here with an entire team of oncology doctors.  If I picked up the torso issue after flying to Alaska, there is a good chance I would have to repack my bags and go back to Seattle.  I only know one thing for sure, I’ll be home soon and at some point in the near future, the cancer will be completely eradicated from my body.

Radiation Works

The radiation is working!  They said it would take a couple weeks before I notice a difference but the pain has already decreased enormously.  These pictures are the radiation machine with me all hooked up.  I think they strap my feet together so I don't run away!

The discussion at the weekly clinic on Friday was about wrapping things up so I can go home but the doctor gave me some disappointing news.  He said I would need to stay about one week longer than expected.  They are planning to give me a drug called Revlimid but it's a very difficult drug to obtain since it can cause birth defects for pregnant women.  After they eventually get the drug, the doctor wants me to remain in Seattle for one week in case I have a negative reaction.  That puts my end date somewhere around the 20th.  Can't wait!!

Homeward Bound?

Is it time to come home?  That’s the sixty-four dollar question.  I think it’s close .

I had my first radiation appointment today.  After a lot of set up, they did two 30 second radiation shots through my shoulder, one from the top and one from the bottom.  The radiation schedule is for two weeks, ending on February 12.  After that, I don’t know why they would keep me here.  The regular clinic is alway on Tuesday but this week, it’s been moved to Friday so I won’t know about checking out of this place until then.

Friday will also be the date that I’ll hear the results of the bone marrow aspiration from last week.  They should be able to tell me if there are any cancer cells left in the bone marrow.  This time they did it twice, once in each hip.  I finally took a sedative to make it a little easier but something went wrong.  It didn’t feel one bit easier and I was completely alert until about an hour after the procedure.  At that point, I was stumbling around the apartment for two hours.   I tried to use the microwave as a refrigerator.  It didn’t work.  I’m still finding things in weird places.

New Tats!

Good news, my radiation will start on Monday.  I might make it back to Alaska by Valentine’s Day after all.  I think the medical staff is getting tired of scolding me so they’re finally getting me out of here pretty soon.

Tomorrow, I have another bone marrow aspiration.  That’s the one that hurts a lot when they pull a chunk of bone marrow out of my hip.  I’m going soft now, this will be my sixth aspiration but the first one with sedation.  They said they will give me a lollipop for the sedation.  I’m not sure if they thought I was coming from the pediatric wing but I’d love a lollipop.  I may ask if I can get a cool sticker for my lunchbox while they’re at it.

In other news, I just got some tats!  That’s right, my first tattoos and my insurance company is paying the bill.  How could it get any better than that??  The tats aren’t very artistic yet.  They consist of three tiny dots, one in the middle of my chest and one on each side of my chest.  It’s for radiation alignment.  As soon as I got the tattoos, I had a strong urge to write a rap song.  So far, it goes like this...

“Yo, yo, yo....”

The rest of it will come, I’m sure.  Maybe I need more tattoos first.

In Trouble Again

Don’t worry, the treatments are going great.  The cancer numbers are near zero and I’m not currently sick.  The trouble I’m in has to do with my Nurse and Physician’s Assistant.  They are both extremely competent and caring providers.  They know every aspect of my treatment and seem to care deeply that I make a full recovery.  But it seems that nearly every time I have a clinic, I get in trouble with them.  It’s always about the same thing, I don’t call in to triage with every little health issue.  This time, they asked me the usual thirty questions, “Have you had a fever, are your feet bloating, do you have a rash, have you had nausea,” etc.  I’m always mostly honest.  The answers are, “No, no, no with an occasional yes.”  This time I let them know about my vomiting marathon on Saturday.

I said “I did vomit on Saturday.”  “More than once?” asked the PA.  I replied a simple “Yes.”  “How many times?” she wanted to know.  “About fifteen,” I answered.  At this point I braced for what I knew would happen next but I was ready with the best comeback ever.  “Did you call triage?”  she asked sternly.  I proudly answered with a “Yes,” expecting to get praise for the first time when this question was asked.  But they’re smart, very smart and whenever I’m in their presence, I’m not so much.  

Her next question was simply “When?”  At this point, I knew I was beaten again.  The finger wagging would begin as soon as I answered that question, and did it ever.  My voice cracked like a first grader who just got caught with a frog in his pocket.  “Sunday,” I said.  

Yes, I called the day AFTER I was sick.  The scolding that followed was stronger than that of my three previous appointments.  If I had called during the sickness, they would have told me to go directly to the hospital.  Every time I’ve been to the hospital, they keep me there with their ridiculous hospital gowns for days and sometimes weeks.  Since I did make the call, even though it was late, I asked for half credit for at least calling at some point.  They were not willing to concede that I did anything right at all.  

The truth is, as they have explained over and over, as a transplant patient getting sick with a fever or vomiting can be a symptom of something very serious.  In some cases, the results could be fatal.  I promised to do better in the future and I will.  However, I’m certain they won’t believe me until it actually happens.

Cousins

I’m lucky to have a huge family.  With well over forty cousins, I never know when I meet a new person if they might be related to me.  As it turns out, there are three cousins living in the apartment that I’m staying in right now.  One is my first cousin on my dad’s side and the other is a Martinson by marriage to a cousin once removed.  This building is reserved for cancer patients who may be candidates for a stem cell transplant so the odds of three cousins in the same building in Seattle are still pretty remote.  What’s more is the first cousin also plays banjo so we may have to get together to harass my neighbors with some banjo music.

A cousin on my mom’s side, “Nan” lives in Renton and works as a registered nurse.  We were pretty close while growing up so it’s great to see her now that we’re adults.  Nan took me on a road trip yesterday to somewhere north.  I can’t say where we went since there is a rule about traveling more than 30 minutes away from the Cancer Center.  It might have or might not have been more than 30 minutes away.  

The bizarre thing about my current health is, I can’t predict how I will be from one moment to the next.  Nan picked me up in the morning.  I felt great, no sickness whatsoever.  We were driving on I-5 when I shouted to suddenly pull over!  Nan has a brand new car.  If you are ever a passenger in a beautiful, new car and you need to pull over, the driver will switch four lanes in heavy traffic and be on the shoulder in less than 8 seconds.  I leaped out of the car and said goodbye to my breakfast several times.  In less than a minute, we were driving again.  I was once again feeling completely healthy and even hungry so we stopped and ate.  I had fish and chips.

Off we went, back on I-5, talking about old times and having fun.  Then suddenly, I yelled, “Pull over!”  Again, she made an immediate stop on the side of the road and you can imagine what happened.  The fish and chips were not very good the first time I tasted them.  This time, they were definitely worse.  Then we were off and now I insisted I was completely healthy with no inclination to be sick again.  There were two more pull overs that day, all with the same pattern of “I’m not sick, now I’m sick, I’m not sick.”  Most importantly, her car is still clean but I’m pretty sure she’ll want me to drive my car next time

It was a bizarre day but we had a great time, or at least I did.  

Radiation Someday

I finally had my consultation with the radiation doctor today about zapping my tumor into oblivion.  My expectation was that they would put me on a table, point the radiation toward the tumor and kill it in about five days.  I was very wrong.  It’s about a hundred times more complicated.  The doctor explained the various ways he could radiate the tumor while avoiding other body parts.  His favorite is a new procedure called VMAT or “Volumetric Modulated Arc Therapy.”  It’s basically radiating in an arc around the curvature of the rib.  Since radiation doesn’t bend, he plans to do a series of straight line bursts from different locations and at different angles so that the result is in the shape of an arc.  He drew a bunch of lines that reminded me of a graphic toy called the “Spirograph.”

The frustrating part of this is I still don’t have a radiation schedule.  Today was a consultation and I consented to do the procedure.  Next Monday, he’s gong to do measurements of my upper body to make a cradle, then some day I’ll receive the actual radiation.  As far as I’m concerned the sooner, the better.  The radiation appointments will probably be every day for two weeks.

I’ve had so many week long delays and they are hard to deal with but when the doctor shows me the science, it’s understandable.  There is a lot of calculating to do and they want to get it right.  Who can argue with that?

Tumor Clarification

I have had so many nice emails with concern about my returning tumor.  I'd like to clarify a few things about that tumor.  The tumor is in my upper chest, surrounding the second rib on the right, it's kind of in my right shoulder. The rib is mostly gone but I'm told it should eventually heal. 

Over a year ago, this tumor was the first symptom and it alerted me to having multiple myeloma.  It was large enough that I eventually had a hard time conducting, couldn't lift my tuba and was in a lot of pain throughout the day. Eventually chemotherapy worked to bring down the size but we could never eliminate it.

Now that it has grown again, for the first time the doctors plan to target the tumor with radiation.  To me, this is fantastic news.  My other tumors are going away with standard chemo and the work of two transplants. Since this one is just too big, it needs targeted radiation.  I have no doubt this method will work.  My doctors know what they're doing. Once that tumor is gone or nearly gone my brand new immune system will handle it from there.

While I deeply appreciate the concern from everybody, I want you to know the rest of the cancer is quickly retreating.  My current pain level is very tolerable and I believe my new immune system is battling the cancer.  My body is just one tumor away from a near full recovery.  

State of the Mike Address

I met with a doctor and nurse today to go over my overall cancer levels.  The tumor in my right shoulder is growing.  As explained in an earlier blog, it's simply too big for my new and suppressed immune system to tackle.  However, the great news is none of the other tumors are growing, in fact they all seem to be shrinking.  The tumors are one area where myeloma shows itself but it's also present in the bone marrow.

One of the measurements of cancer strength is called a monoclonal spike or M Spike.  It measures myeloma protein.  When it was first measured in Anchorage, the M Spike was somewhere around 6.0 or 7.0.  After months of chemotherapy in Anchorage, my M Spike got as low as 2.3 but now after two transplants and a lot of therapy it comes in at 0.1.  That's almost non-existent.

I'm pretty sure this is positive news but the tumor still has to be taken care of.  The doctor explained a three pronged method of attacking the tumor.  Spot radiation, oral chemotherapy with a drug called Revlimid, and reducing the immune suppressant drugs so the new immune system can do its work.  The immune suppressant drugs will be reduced very gradually over the next few months.  The radiation and chemotherapy will start within the next week or two.

The medical team was very cautious and technical.  They didn't seem happy that the tumor is still growing but the way I look at it is I'm just one tumor away from almost beating these cancer cells to a pulp.  I know it's too early to know for sure but I have a good feeling about where this is going.  

Rough Road

Today is a good day.  After a clinic this afternoon, I’ll know exactly what’s going on with the cancer cells in my body.  The doctors will hopefully decide a course of action to treat it.  This is a backward step from my assumption that I was almost done with the cancer.  It’s extends my time of being sick and it means I’ll have more side effects from the radiation or chemotherapy.

The entire experience has been a long road of ups and downs.  Now that my Seattle experience is close to an end, I’ll admit that I haven’t reported many of the downs.  I can also admit that they have had an impact on my overall outlook.  For several months, I’ve been waking up at the mercy of the disease and the side effects from treatment.  Predicting my physical health even one day in advance is futile.  I have to wait until the morning to know if I’ll be sick and miserable or feel almost normal.  When I’m sick, I tend not to write about it.

Even with the down days, my outlook is still strong and my prediction of total recovery is certain.  Admitting that it’s been a difficult time doesn’t change any of that.  The path to recovery has been and still is rough but the outcome matters more.  If I keep looking to the future, I will endure the road to getting there.

Tumor Update

As promised, I’ll pass on the latest information regarding my shoulder pain and what could be a full blown tumor.  The results from the PET scan from yesterday have not been analyzed but I saw the graphics from the scan.  They do show a brightness at the spot of the pain in my right shoulder which almost certainly means there is a tumor at that location.  Because of the probable tumor, the medical team is doing a full cancer search by analyzing my blood as well as interpreting the PET scan.  So I have a new appointment this Thursday to hear more complete results of what’s going on with the cancer.  The doctor did make some informed guesses as to what he thinks is happening.

Apparently my new immune system is not yet fully functional.  It’s brand new and I’m taking drugs that suppress it to prevent something called Graft Versus Host Disease or GVHD.  (That’s the disease that kills people.)  My new immune system is probably killing cancer cells but simply can’t keep up with a fast growing tumor.  So the next question is how to give the immune system a boost and get rid of the tumor or tumors.  After more information is gathered on Thursday, they will probably decide to radiate the tumor or tumors to shrink them to a manageable size.  Chemotherapy may also be added to the mix.  They will also eventually reduce the immune suppressant drugs so the new blood cells can be more active in fighting the cancer.  This is still based on assumptions and will be confirmed or not this Thursday.

The bottom line is, it takes time.  I firmly believe my body is making progress in killing these wicked cancer cells but it doesn’t happen over night.  It may take a few more weeks or even months but there is a good chance that I will beat this thing before long.

In my last blog, I bragged about my hair.  Here is an update to that blog, complete with pictures:

                       "Willow Bushes"

The envy of the female members of my medical team at SCCA:  No kidding, they were teasing me about them again today!  I haven’t told them that I don’t care how long my eyelashes are, I’m not a woman.

And the long awaited hair.  I was bald for for way too long.

Tumor is Back?

Mystery is mounting. Although I have a spot in my bone marrow without cancer, for the first time in several months I feel pain in my right shoulder again.  This was the location of the tumor that alerted me to the cancer in the first place.  In the past, the amount of pain correlated with the size of the tumor.

Fortunately, I have a PET scan scheduled for Monday morning. They will give me the results of the scan on Tuesday morning. That scan identifies tumors. Good news or bad, I'll pass it on this coming Tuesday.  Otherwise, I feel great and anxious to come home.

In other pressing news, my hair is growing rapidly.  My eyebrows look like willow bushes, my eyelashes are the envy of the female medical staff and I may have to invest in a comb within a week or two. 

Zero is a Great Number!

Every 28 days, I get to lay on a table, on my side with my trousers down just three or four inches.  It’s not my proudest moment but at least I’m not at the business end of this medical procedure.  They shoot my hip full of lidocaine, then drill into my hip bone.  The nurse says "Take a deep breath, now exhale!"  I have no idea why I’m supposed to breathe then exhale, except it might keep me from shouting four letter words as she pulls a core sample of bone marrow from my hip.  It hurts...a lot.  But one core sample isn’t enough, so she repeats the procedure for a total of three pulls.  

Most people take a sedative but that would require a friend to be present to help me walk out the door afterwards.  The fewer people who have to see my plumber’s butt, the better so I do the procedure alone and without a sedative.  I’ve done this procedure five times and have just one more to go.  One of the tests on the core sample is to measure the amount of cancer cells within the marrow.  On day 28 after my second transplant, they found just a trace of cancer cells.  On day 56 (last Monday), they found zero, not one cancer cell in the bone marrow.  I was warned that it doesn’t mean I'm free of cancer, it’s just a sample of a small portion of marrow.  I could still have cancer cells elsewhere in the marrow and in the form of tumors but it’s a great sign and I’ll gladly take it as good news.  This is the first time in five procedures that the number hit zero.

A complete cancer workup will happen on day 84.  They will do a series of tests that will be more conclusive.  That’s when I’ll know exactly how much (if any) cancer is left.  Twenty percent of patients who receive a double transplant end up in long term remission.  However, fifteen percent die from the procedure.  

I’m pretty certain I haven’t died yet unless heaven or hell allows tuba and banjo music.  (My musical friends will all have a some strong opinions on this).  As far as the near cure, I’m hopeful to end up with the twenty percent but even if I’m not, the cancer is so minimal at this point, I can live with whatever the result.  The key words here are: “I can live.”

Good Behavior?

I just learned that there is a chance of going home early. My scheduled release date is February 15 if things are going well. According to my medical team, I'll be assessed two weeks before that date. They will decide my release date according to that assessment. It's like getting a reduced sentence for good behavior. 

I'm still in the planning stages to bust outta here. I have to appear completely healthy. You can bet that every time I meet with a doctor, I'll be sitting up straight with my hands folded on my lap and a big smile on my face.  

I'll let him know that I walk a mile up Capital Hill every day and I walk back which is also uphill. I'll also mention that I'm taking classes in Yoga, Jazzercise, Zumba, Tai Chi and Chai Tea.  Yesterday, I even swam four laps which was quite exhausting (around Lake Union).  So with any luck, I'll be home in a month. 

2015 in Song

So long 2015!!  I won’t miss you.  It’s not that I’m not grateful for the good things that happened but overall the bad things greatly outweighed the good.  

Sing to the melody of Auld Lang Syne

Goodbye to year two thousand, fifteen

I am glad to see you go

You brought me sickness, heartache too

You’re the worst year that I know

They filled me full of drugs all year,

They examined me every day

They poked and prodded everywhere

They made me sick in every way

My sickness goes on for many months

I pretend that all is fine

My doctors truly want to help

For a cure, I’m just on time

The bills have topped a million dollars

My share is one hundred grand

If I sell my children and my house

I can pay for most in hand

My car went dead this year for good

My house needs work done now

I’ll pitch a tent that’s close to school

And eat Ramen for my chow

But friends and family have reminded me

That I’m not in this alone

I’ve embraced the kindness bestowed on me

It’s sincere and brings me home

I spend a lot of time down here

Being lonely and sometimes sad

The outpouring of care toward me

Makes me feel the year's not bad

I’m stronger for the experience

The cure could be a month away

Two thousand, fifteen, I forgive

I’m getting better every day