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