I was diagnosed
with Stage IV HPV+Squamous
Throat and tongue cancer early May, 2016 and the tumor board recommended Chemo
+ Radiation. I am a lifelong advanced level avocational symphonic choir
singer with important concerts imminent and elected to forgo radiation as
damage to the vocal instrument was certain and rehab to singing level was
unlikely.
I have
lived a "healthy lifestyle" of the non-weirdo variety all my life,
conventional (little fast food few sodas) diet, lots of exercise, plenty of
sleep, etc. But living long enough puts you in the high cancer risk category no
matter how you live as I have found out. Cancer is nature's way of telling you
it is time to let the kids take over. Modern medicine is pretty good at dealing
with cancer, and aside from cosmetic horrors most people who are otherwise
healthy generally can deal with it easily. The cancer scare tactics are medical
and alt fact marketing that can be ignored. But
most important I didn't buy into the belief unfortunately promoted by the
medical profession that Cancer is a terrible monster that must be eradicated
from the patient at whatever cost.
IT.
IS. NOT.
Cancer
like heart disease, strokes, and many other infirmities of age, are things that
need medical attention and may affect life style, but if they are not fatal are
issues that must be dealt with in the context of doing things that are
important to the patient, even if lifestyle choices may affect the treatment
and even the outcome of the disease.
These
diseases of age are analogous to joint damage, broken bones even spinal
injuries and concussions. They may kill you outright, we all die someday,
but if not life style changes to fix the problem should not be the primary form
of treatment. A friend of mine was paraplegic as a result of a ski
accident on KT-22. Instead of gently learning to use a wheelchair to
avoid further damage to his injury he was organizing wheelie races in the rehab
center. Skiing might have killed him but it wasn't about to change his
life style dead legs notwithstanding.
The tumor
board was not happy with my decision to skip radiation, but accepted it and suggested a very aggressive and dangerous Perfusion Chemo as an
alternative to standard Chemo and Radiation with the warning that it was
potentially life threatening but would not damage the vocal instrument.
For me the risk/benefit equation of certain loss of singing ability vs a
dangerous regimen
of Chemo made the Chemo the best choice. As a singer friend noted
priorities are 1. Don't die if possible. 2. Keep singing, 3. Manage the
cancer. I was in excellent health, with an athlete's level of fitness,
and decided I could deal with the aggressive Chemo and live through it to deal
with any remaining cancer at a later date if necessary. The tumor board
assumed that later meant radiation and more Chemo. I did not. See 2
above. One thing cancer treatment does is that it forces management of
priorities to accommodate
the extra sleep, and immune system degradation associated with any cancer treatment regimen.
Two important
events I chose to accommodate were coordinating a convention blood drive early
in the treatment, and singing a concert at the end of the treatment. The
blood drive was relatively easy. An aggressive medical face mask to deal with
the crowd and instead of commuting I stayed at the convention hotel to provide
frequent rest breaks, and longer sleep at night. The concert preparation
was more difficult as the extra evening rehearsals could not be missed, nor
could the vocal exercises be ignored as the Chemo affected the vocal
instrument, and had to be compensated for. I had to assume the chorus was
basically healthy as a face mask could not be worn while singing.
Non-essential time sucks like Facebook and Email got minimal attention, and
other social activities were eliminated as possible. But I did sing the
concert with my voice in good shape right after the end of the Chemo.
It is
important for the patient to understand all of the side effects of the chosen
procedures and be prepared to enlist the help of the procedure specialists
ahead of time in dealing with ER and attending physicians that may not be aware
of some of the less common side effects. One that I found out the hard
way was that perfusion can totally shut down the GI system so that no food is
processed even if it can be forced down. Another is the tongue can be
totally disabled by sores and thrush so that even liquid nutrition ingestion is
difficult without aggressive treatment of the thrush. A popular Chinese folk
medicine called Watermelon Frost in English was helpful once the GI system was
able to process food. It is unknown to most physicians as it is not an
officially recognized treatment of tongue sores. Ask a Chinese friend who
will probably have it at home or can get it for you at a Chinese ethnic
market. Professionals on the Oncology staff should know about this folk
healer and suggest it as "maybe helpful." They have suggested Culturelle
and L-Glutamine
as "maybe helpful" and they have been "maybe very helpful."
The
aggressive treatment as advertised nearly killed me after each Chemo session
not helped by some "going through the motions" inpatient attendings,
but I actively managed my treatment and made it through the rough spots.
It was all worth it as the cancer was undetectable at the end of the treatment
much to the surprise of the tumor board.
A routine
checkup nine months later showed a recurrence of tumor and a new round of the
aggressive Chemo was tried. That one had to be terminated half way
through because of a new side effect that caused a cardiologist to discontinue
the chemo. The tumor was half gone but that was not good enough so it
looked like I would have to bite the bullet and go ahead with radiation.
I eliminated all the other options after thorough investigation with the help
of the radiologist who in his investigations found a procedure that would
minimize radiation exposure to the vocal chords while providing therapeutic
radiation to the cancer. As he explained it the chords would be minimally affected but there were no guarantees on the rest of the instrument.
Again I had an important concert at the end of the procedure and decided that
if I exercised the instrument diligently I might even be able to sing the
concert. A different chemo and the radiation was benign enough that
singing daily was no issue, and the voice survived the treatment in better
shape than before the treatment. I sang my part of the concert and even got a few unsolicited comments on my vocal quality.
I don't assume that I am done with cancer even though the latest scans are clear, but pushing the specialists to find alternatives to the standard and very effective treatment of Cisplatin plus aggressive radiation, has resulted in a treatment protocol that I can live with that has minimum inpact on the important lifestyle choices that are necessary to happiness. I assume it does not comply with the cancer industry's paradigm of kill the cancer at whatever cost to the patient, but it works for me.
The Kaiser Foundation's Northern California HMO worked just as advertised. They put my lifestyle needs first throughout the treatment protocols, and once I refused the "No problem, the cancer is above the clavicle we can cure that for sure with Chemo and Radiation." they put the whole Northern California Cancer team on working out an acceptable solution to my treatment. Specialists as far away as Sacramento were involved to rule out a new hi-tech surgical procedure to deal with the residual cancer, and the pros and cons of Proton radiation therapy were explored with an associated facility at Scripps Institute.
They certainly lived their motto of "Thrive" according to the patient's lifestyle standards.
Superman music
20 hours ago
