DAY 1331 - Day 1089 in Recovery Paradise

Glacier Trekking - Skagway, Alaska

Just finished the second half of my three year Tonsil Cancer treatment check-up.  


Got the good-so-far thumbs up from my Head & Neck Oncologist a couple of weeks ago.  My regular physician checked my large catalog of recent blood tests and declared me fit for duty.


My Glaucoma eye specialist says my eye-drop medications ($200 for a 30 day supply each and I have 2 a day) are sufficiently holding off the irreversible slow digression of my sight (which ultimately only means I will hopefully expire of old age before I go blind - ha).

Getting ready to 're-boot' my heart

My Cardiologist (what a fan club my body is building - eh?) performed the latest Cardioversion last week to get my heart beat regular and strong - upped my meds - and re-certified me to head back into the game.  Send me in, coach!

If I have learned anything from this life-changing experience is the ultimate judgement of my time on earth will not be how I started but, rather how I finished.  The value of my hour has increased ten-fold.  

I am not as willing to sell or trade away my hours so cheaply anymore.  Maybe an hour a week is traded to my TV.  Starting the day after my 64th birthday next Wednesday, I will sell fewer hours to my work.  I love my job and love what I do...but as Carl Sandburg said ... "I have miles to go before I sleep".  

Intentionally going part-time is an interesting process and I have been struggling with that decision for about a year.  For 50 years I have strived to get more work-hours and gladly traded my seemingly, unlimited time for more dollars and greater benefits.  To intentionally give up the benefits (quite a decision based on my health issues - but I am still covered with Lise's work) and the work-hour dollars is a result of my restructuring the value of my hour.  As my hours appear to be diminishing in volume, there are not many situations that can really afford me anymore.

Just some of those that can now afford me with my new updated pricing structure are:

*Practice my bass for 1 hour.

*Create a new recipe in the kitchen for 1 hour

*Write this blog for 1 hour

*Sit on one my decks next to the fountain in the recently finished back yard with a glass of Merlot and and Italian Opera wafting through my iPod ear pods for 1 hour.

I can assure you there is nothing imaginable, outside my family, that can afford to buy me away from a half-glass of decent Merlot and Gianni Schicchi - O mio babbino caro and  Luciano Pavarotti - Ave Maria.

This is an excerpt from an email I sent to an unfortunate new member of my Tonsil Cancer Club.  Being a Cancer survivor (technically not for another two years)  is not unlike Alcoholics Anonymous or the Mafia - once in you can only leave via your wake.

Bob from Ca. here.  I just had my 3 year 'all clear' exams from Tonsil Cancer treatment that ended in 2008.

Most people don't know it means when someone says "been to hell and back!", but we all do for sure.  I don't know if this a plus, but my doctors were very blunt and seemingly unsympathetic ... no sugar coating.  They however,were right and there were no surprises.  That said, it didn't make it any easier to know what was coming- one cannot read or hear the words and even begin to grasp the concept.  

There is no one you can talk to better than the unfortunate members of this club.  Family, friends, doctors, etc. KNOW the clinical issues you are experiencing. but NO ONE KNOWS how you really feel until they have personally been through it.

There will be a day very soon when things get better a tiny bit every day.  I also hated the mucus part.  I had 'spit' cups everywhere, car, upstairs, downstairs, every room of the house, next to a 1/2 litre of water.  I remember gagging myself trying to pull it out with my fingers, because it was too dry and thick to spit out.  Radiation to your head every day weekly for seven weeks takes its toll not only on your taste buds, mouth, tongue, but also to your mental state of mind.

Most of us say that hydration is absolutely critical (lots of water- not beers -ha) as the dryness will probably be with you forever. 2008 BC (before Tonsil Cancer) I could put away a 1 lb.box of 'See's Chocolates' (big brand here in California) by myself (always was sick after, of course), but after treatment, I couldn't even stand to have a dime-size piece in my mouth.  I would have to spit it out.  Over the past year, it has improved a bit but, I don't expect the sweet buds to ever return totally (probably one of the tiny weight loss gifts God provided as a result of this big test of my over-all sense of humor).

I started a blog the day I was diagnosed and put my thoughts there regularly all through the first year.  I still post (I will again today) occasionally as not much changes daily like it did in the beginning.

If you would like to see a fellow Tonsil Cancer club member's thoughts as you follow the daily path to recovery...I will post the link here.  Note- we all have different variations of treatment and recovery, but the similarities are mostly the same.

http://robertweltonanotherdayinparadise.blogspot.com/

 (much prefer the taste of beets...now that is a change from the old days) will most likely be an enduring reminder of this experience, lest I tend to forget.

All that said, I am a proponent of positive thinking and positive action.  In the 'half full-half empty' philosophical discussion, I am now happy if there is any damn water in the glass at all!...ha.

Your strength is that you survived it.  You came back from Hell and you will become a better, stronger person in an odd exchange of gifts for the pain you endured.

Every New Day is a Gift. 

Once the daily discomfort eases (AND IT WILL!) -  will all of us look at each new day and appreciate it more than others ... absolutely!  I would not wish this particular version of a 'Life's Wake Up Call' on anyone, but the the Cancer Diagnosis and ensuing treatment experience was just that for me...a tremendous wake up call.  

I just got back from a trip to Alaska, spending money I don't really have - but using the TIME I do have,  where I flew in a helicopter out to the middle of a glacier for a trek (unbelievable)...my 3 year anniversary of Cancer treatment gift.  

On my 1 year anniversary gift to myself,  my family and I took a hot air balloon ride over the Napa Valley (wine area in Ca)...a gift from my sister, who was the best friend, during the tough times, a person could ever have...she lived 200 miles away, but mailed me a funny humor card EVERY DAY for the entire seven weeks of my treatment.  She gave me a giant poster of about 100 beautiful hot air balloons taking off over the valley at dawn to put on my wall next to a gift certificate for me to personally go, when I was able.

Year 2, my wife and I went on a Class 4 whitewater raft trip down the South Fork of the American River.  When our raft upended and threw everyone out into the rapids...everyone was freaked out except me...I was the one laughing, because it wasn't even close to  the experiences I had just lived through).  

Not to be too morose, but a friend on this forum once said something to the effect that the surest way to beat Cancer was to live long enough to die of something else...like old age.

We all wish you well - with strength, courage and humor.  As much as you are able, as soon as you are able, put behind you what happened to you and focus on all the wonderful time you have ahead of you.

Ultimately, we will be judged not on how we started our life, but rather how we finished.  

So, what are you going to do with the next 40 years?

With much love and profound empathy,

Bob/CA

"God grant me the serenity to accept the things I cannot change, the courage to change the one thing I can, and the wisdom to know it's me.“ - Unattributed

DAY 1321 - Day 1079 in Recovery Paradise

Just had my 3 year post treatment update.  All is OK for now.  I have been dealing with a sore throat in the same part of my throat as 3 years ago for the past month and was dreading the visit. Note- it still has not gone away, so not always psychosomatic....

I have been assigned a new regimen of daily (up to 8 times a day in the beginning) saline nasal wash, heavy salt throat gargle and Vaseline in the nasal passages.  I am to use a humidifier and put 'Biotene' moisturizing gel in my mouth at night and use a 'Biotene' mouth spray.

Also got some sobering news from my Head & Neck oncologist:

         Although at 5 years, post treatment,  I can say I am a survivor of this type of Cancer, I am now 10 times more likely (vs. people that haven't had Cancer) to get another Cancer.

     She also said that in her experience (30 years), most new cancers (not a recurrence of first cancer) that occur, come in the 7-10 year post treatment time frame. Tick, Tick, Tick...

She does not advocate CT and Pet scans on a regular (every 6 months etc.} basis.  She says the additional exposure to radiation could be a significant factor in a new-cancer-later possibilities.  

A person that has had 5 CT scans has been exposed to the same amount of radiation as survivors of Hiroshima in WWII (survivors of the atomic bomb attacks at Nagasaki and Hiroshima who had significantly higher cancer risk were exposed to about 100 millisieverts of radiation. A CT scan delivers approximately 20 millisieverts – and since radiation accumulates in the body, a person who has had five CT scans in their life would have the same radiation exposure as an atomic bomb survivor.)

I have had 5 now, 2 in the beginning of 2008 and 3 more (1 week apart) last year when they thought the Cancer had spread to my liver.  It is like the good news now is the bad news.

Also in the news today:  There is now a 'cure for certain types of 'Leukemia' tumors.  Go here:  http://www.voanews.com/english/news/health/Serial-Killer-Cells-Demolish-Leukemia-Tumors-127727628.html

When I asked my oncologist what I could do to make myself less at risk for a recurrence of Cancer, after the obvious (no smoking, drinking, diets high in fat, poor health behaviors, etc.),  she said that there is very little knowledge of why people generally get cancer and her advice was to live a happy life, drink lots of water, and enjoy occasional comfort foods (vs. living on berries, etc.) as a happy, stress-free person is about as immune as a person can get in today's world.  She said that as we are organic beings like plants and animals, we are mortal and have a limited life cycle.  She said there is nothing she could advise me that would absolutely prevent me from getting Cancer again.

Dying from Oral Cancer is 45th on the list of major causes of death worldwide, with violence, measles, diarrhea, suicide and traffic accidents way ahead as possibilities.

Live as healthy of a lifestyle as you can, do the things that make you happy, try not to have any regrets. 

The number one cause of death, worldwide, is due to cardiovascular issues.  I have had issues for an irregular heartbeat for awhile and the meds have stopped doing their job, so in about 7.5 hours, I go in for my second Cardioversion (cardioversion uses a therapeutic dose of electric current to the heart, at a specific moment in the cardiac cycle.) in about six months.  So, why am I still more concerned about Cancer recurrence than my heart issues? 

I have an appointment the day after tomorrow with my ophthalmologist for a recurring eye infection and oh, yeah....my left hearing aid stopped working yesterday..wtf... ha...

 

.................so, I just got back from a  7 day cruise in Alaska, taking the time I do have and spending money I don't really have, to take a helicopter ride out to the fast receding, not so eternal, glacier for a trek...the one remaining thing on my list...note: I scheduled the Cardioversion for after the glacier walk, just in case...

rlw

"The years seem to rush by now, and I think of death as a fast approaching end of a journey - double and treble the reason for loving as well as working while it is day. - George Eliot 

Just about have this song down for my next performance...no puns intentionally intended...

"Spirit in the Sky" - Norman Greenbaum

DAY 1111 - Day 869 inRecovery Paradise

As I followed the dark Cancer path lit by others ONE THOUSAND ONE HUNDRED AND ELEVEN (DAY 1111) days ago, I have been honored by a fellow struggler, with his first foot on that same path, acknowledging the candles I left behind, as I moved towards the sunrise of a reclaimed life.

SUNRISE

I got this email today.

Hello Robert-

...been reading through your blog as I'm about to launch into the same treatment route you have described so lucidly, forewarned is forearmed!  We share a number of things in common, left tonsil cancer....left lymph node cancer, atrial fibrillation.....so your expose has been more than valuable, knowledge dispels fear. I start on chemo this Wed then another session 3 weeks later followed by 6 weeks of 5 days radio therapy - my diagnosis was confirmed on 10 Jan after an exploratory biopsy on 3 Jan.  Like yourself I am surrounded by professional medics in London and a good support group so I walk forward optimistic about my ability to see this through. What I do not easily appreciate is the extent to which the throat becomes an impediment - I will take the PEG route which I see you advocate.  I am up to day 64 of your blog and would just like to say thanks for having taken the trouble to write it up, it has been invaluable to my wife and I.  I am age 64 and have spent most of my life traveling the world - now semi retired living in Epping Forest close to London.

best regards, and thanks again

xxx

.......my return email - 

Thanks.  Writing was a good way for me to stay focused on the solution ahead.  Each day that I wrote about feeling a bit worse than the day before, I knew I had not hit bottom.  I remember the day 64 well.  I just about broke my butt falling down the stairs in the dark about then.  It actually took my mind off the big picture...ha.  When there was three days in a row where I blogged about feeling a bit better than the days before - signaled I had bottomed out and was starting a new climb out of the dark. 

Surround yourself with positive motivation and maintain your sense of humor and what you are grateful for.  Even with all this, you are so much better off than tons of people around the world;  memories of a well-lived life, travel, the means to secure treatment, a support system... think of entire families that were born, lived and died in the train station in New Delhi - living on a cardboard mat, etc.

Your appreciation of your "second turn"  will be magnificent.  The depths you go in your treatment and recovery is just an indication of how high you will go when you pop out the other side of the rainbow.

I am now at DAY 1111 (how cool is that - thanks for your email - you have inspired me to post again in a minute to commemorate the 1111 day) and Day 869 in Recovery Paradise. 

Still a bit of a dry throat (I think I will get to keep that forever as a slight reminder of my experience)...but all in all I have 100% of my strength back and 99.9% of my ability to eat anything.

Life is good (actually better, as my level of appreciation for the little things has accelerated) and it will be for you too.  This experience was actually a GIFT for me and I hope it will be for you too.  At my age, I have experienced the quantity and now I am experiencing a quality and gratitude level that is very different than I have had in the past.  I have traveled all around the world and didn't appreciate the places and things I saw and did as much as getting to watch yet another Sunrise, listening to my daughter play the cello tonight or noticing my wife's look, with love in her eyes.  I am a very lucky man.  I got a second turn.

I am glad my recounted posts are a help.  There is a light at the end of the tunnel.  It is the sun rising on a fantastic second part of your life.  Stay positive.  Remember always, at your darkest hour, you are still more fortunate than many, who would trade with you in a heartbeat.  You have a great life ahead of you.

Note: I loved traveling to London.  I could haunt the old bookstores and pubs forever.  That is where I secured my leather-bound Dickens and Original Strand Magazines with the Arthur Conan Doyle stories.

" For a long time it had seemed to me that life was about to begin - real life.  But there was always some obstacle in the way.  Something to be got through first, some unfinished business, time still to be served, a debt to be paid.  Then life would begin.  At last it dawned on me that these obstacles were my life". 

 ~Fr. Alfred D'Souz

Bob/CA

DAY 873.5 - Day 723.5 in Recovery Paradise

Happy to have awakened at the end

Happy to have arrived at the Party

Another small saga in my life is complete.  I arrived at the Cardio unit at Kaiser at 8am for my first of many birthday celebrations. 

I changed into a chic paper dress with matching paper shoes presented to me, just for the occasion.  It was very fashionable affair as all the other guests wore matching outfits, however,  I was surprised to discover it was also a costume ball, as they all wore masks.  

As I was the only guest from the 60's, I got all the drugs and the guests (hopefully) went without. 

Lots of wires and electrical hook-ups, as it turned out I was not only the birthday boy, but also the entertainment.  I was probably an electrically charged  marionette as the main attraction.  Having gotten up early and consumed my "legal meds" through a convenient IV hookup - I was a party pooper and slept through the whole show. 

I am hopeful that a home video of the party will show up on YouTube later tonight, as I am curious how I only got half my chest shaved.

Song of the Day:  Happy Birthday - Stevie Wonder

DAY 873 - Day723 in Recovery Paradise

Well, here we go de'ja' vu on the cardioversion procedure.  The cardiologist originally described the procedure (electric shocks to the heart) as "rebooting " my heart...but changed the description to "changing channels" IE. TV land.  People at my work made the clicking the channel changer motion as I left yesterday...ha.

Regardless of how it shakes out, I had time to get one more adventure in...Class IV Whitewater Raft Trip down the Middle Fork of the American River.  Run by W.E.T. River Trips out of Coloma, it was a total blast.  Lise and I went with some of her friends from work and some people from the Chamber.  Hit all the Class IV hard rapids with no problems and then caught a submerged rock on a milder Class III section and the raft flipped, dumping all, including guide, out.  Lucky me and two others were rescued post haste by another raft down river and shuttled back to our now righted boat.  All of us agreed that it was the best part of the adventure.

HAPPY BIRTHDAY TO ME..ta da - got to be 63 today.  I am not recommending jump starting your heart on your birthday, but if it buys me a few more, then good-on-me.

Song of the Day:  Magic Carpet Ride - Steppenwolf

DAY 867.5 - Day 717.5 in Recovery Paradise

...quick update.  Will not have my procedure today.  I had a 1/2 bowl of heart healthy bran flakes with antioxidant blueberries this morning and I was supposed to not have anything in my stomach 8 hours prior...

 So - checked out and off to work.  Actually this turns out be an interesting twist and probably, eventually,  a much better story (who doesn't love a good story), as the reschedule is for 8:00 am on the 31st of August...my birthday.

My Best Days Are Ahead Of Me

DAY 862 - Day 712 in Recovery Paradise

...Usually they make we sweat for 3 days for my CT results (great diet plan as I have no appetite), but oddly enough I got my two-year CTScan results back in 2 hours today....ALL CLEAN!  Below is the readout I just got from the radiologist.  I did see one glaring error that troubles me in the report - it says "visibile portions of the brain appear to be normal"...disappointing after all the hard work I have put in since the 60's to change that - has apparently not paid off...ha 

The pre-op carioversion meeting went well- the doctor revised the "rebooting your computer" analogy to "like changing the channels on your tv", so I feel a bit better going under for the procedure.  I don't have to give away all my cool stuff just yet.  8am next Wed for that op.  Have to have a driver and be baby-sat in recovery for 2 hours and then for another 4 hours at home...I hate that part...I am not an ideal patient...I will have to ask if decaf margaritas are prescribed.

Cardio Doc. says I am totally off all caffeine now...with me sitting there with a Double Latte from Starbucks...had to hand it over to Lise, sadly.  Told me I would have to take the heart meds for the rest of my life...which I took as an omen that there would be a long life left to invest in the pharmaceutical industry...

Use the precious time given to be an example for others..and then we will surely live forever.

CT result

  To:

Robert L Welton

Received:

8/20/10 9:57 AM

Hi Mr. Welton,

Below is your CT result from today. All looks good. Hope you're feeling well!

Radiation Oncology

CT NECK SOFT TISSUE WITH IV CONTRAST

** HISTORY **:
Clinical stage III squamous cell carcinoma of the oral pharynx
involving the left tonsil and base of tongue, status post
chemoradiation therapy

** FINDINGS **:
Comparison: 02/20/2010

Technique: Axial images from the skull base to the sternal notch
were obtained with the administration of 100 mL Visipaque.

There is no evidence of cervical mass or lymphadenopathy. Fat and
fascial planes are preserved. The salivary glands and thyroid
gland are normal. Vascular structures demonstrate normal contrast
filling. Visible portions of the brain and skull base are normal.
No significant osseous abnormalities are seen. Apices are clear.
There has been no significant change since the prior study.

** IMPRESSION **:
No evidence of residual/recurrent mass or lymphadenopathy

Bob/CA

"I'm still standing here." - Rocky

"Gonna Fly Now-theme from Rocky"

DAY 861 - Day 711 in Recovery Paradise

Even though it is not technically two years since the end of my Tonsil Cancer treatment, my "two-year post-op" CTScan is tomorrow at 7am. As always before a check-up, I awoke with a worrisome sore throat and a sore lump on my tongue. In the past, all symptoms disappeared when I later read the "all clear" results.

I have to take pre-op meds starting at 7pm tonight and another round at 5am - two hours before the scan. The threshold that Cancer patients look for first is the two-year survival mark. Your odds of survival jump dramatically if you can make it that far. At five years, you get to say you beat the devil.

The interesting irony of the test tomorrow is that it is followed 1/2 hour later with a consult with my cardiologist. Long before I was diagnosed with Tonsil Cancer, I had been diagnosed with Atrial Fibrillation and was taking a bunch of meds to slow down my heart rate and not have it jump around and use up my lifetime minutes prematurely (like sitting in your car in the driveway in neutral with the gas pedal pushed to the floor). Recently, I started having heart rate issues again and the Holter monitor results showed that the meds were no longer working and I was in "A-Fib" all the time again.

S0, I have been scheduled for a Cardioversion next Wednesday to "reboot" my heart with electric shock treatment. My doctor used the "like rebooting" your computer analogy. I asked him "doesn't that really mean turning it off and then back on again and hope that it starts?" He seemed to think that odds were good (99.5%) with a 70% chance of fixing the problem.

It seems that most of my body warranties have lapsed. I am thankful that my Glaucoma is under control, so I can read the results of the other tests....ha.

Still - much to be thankful for and still consider myself the luckiest guy around. Each of these "bumps" just serve me well in reminding me to preserve my "attitude of gratitude".

What if I was dirt poor with no medical insurance?

What if I was alone with no loved ones around?

What if it was 1810 or 1910 instead of 2010?

What if I didn't have a great life to look forward to?

What if I didn't have memories of an overly full lifetime of grand experiences already behind me?

What if I hadn't lived long enough to see my boys turn into men...with a very cool grandson to be proud of?

What if I hadn't asked Lise about her PGE bill nine times as a neighbor in a tiny 4-plex, to have an excuse to meet her?

What if I didn't live long enough to be the father of a beautiful, talented, young woman, who rightly so, was voted "2010 Renaissance Woman" at a recent summer camp?

What if I didn't live long enough to establish an wonderful adult relationship with my baby sister and come to the realization that she is one of my treasured best friends?

Regardless of the results of the next week's adventures, I feel I have already won the race to have a great life...I am in the icing phase now anyway.


Song for today:
Feeling Good....Adam Lambert