Thursday, July 28, 2011

Update - sort of

With the end of the Tour de France and my ongoing wait for a spot in the clinical trial, I thought I would take time to catch you up with a random collection of facts and observations I have not been able to tie into any narrative thread, but feel important to share.

•  I've recently adopted a very short haircut, in part to externalize my fighting spirit and partly to cover up the result of radiation therapy.  Thankfully, my hair did not fall out from the chemotherapy.  However, it did disappear along the side of my head where the radiation beam went through my eye socket and continued on to China.  So I wear my hair short these days waiting for the hair to return (fingers crossed).  If I let it grow, I look exactly like this guy from the toilet paper commercial.
•  My only other obvious sign of therapy has been my right eye.  The tumor there has ceased to cause blind spots but still limits my near vision significantly.  My left eye can read fine.  As the degree of this is still fluctuating I am hesitant to order another pair of soon-to-be useless glasses and have opted for store-bought reading glasses.  My recent solution is to buy a strong prescription strength pair and pop out the left lens.  It gives me an intellectual homeless look and helps keep the seat next to me empty on airplanes.
•  I have been shuttling between Ft. Lauderdale and Houston on Southwest Airlines, which has a couple direct flights a day and no change fees (important when you have those open-ended doctor appointments).  Last week I was elevated to their “A-list” category because of my frequent flying.  I now have the highest status on the cheapest, no-frills airline in the country.  Yeah!  Not exactly like George Clooney’s character in “Up in the Air”, but two bags of peanuts are always better than one.
•  Food tastes have largely bounced back from chemotherapy.  Before treatment I classified food into three categories – unacceptable, acceptable and enjoyable.  The split was roughly 15/60/25% and after treatment it was 15%/84%/1%.  My love of everything coffee related took a real hit, as I could not stomach it in any version.  This was especially painful after my significant purchase earlier this year of a gleaming chrome and black Swiss designed, Italian espresso machine.   I can now drink coffees and lungos and lattes, but the love has yet to return.  However, not having to wake up for anything seems to counterbalance this somewhat.  Ann and I have recently started eating raw vegan from previously eating a vegetarian diet.  This makes the food split about 98%/1%/1%.
•  Appetite is one of the common casualties of chemotherapy, which leads to inevitable weight loss.  This is so cruel as it is one point in your life that you want and need to gain weight but when you have lost any taste for food.  Note that cancer research has shown that the chemical marinol is one of the most effective anti-nausea appetite-building drugs available.  It occurs naturally in cannabis sativa (marijuana).  Just saying.
•  Those of you who know me know that only alcohol can beat out coffee in terms of most likely to be in my hand at any given time.  This went out the window during the first treatment, partially from recommendations of the medical team but mostly from taste.  Now I can stomach a hoppy wheat beer with a meal but no wine or other alcohol.  Besides the obvious physiological improvements that resulted I estimate this has saved me between $50 and $350 a week.  Who said cancer treatment does not have a positive side?
•  Other positives include the skin rejuvenation I received on my last round of chemotherapy.  My face peeled non-stop for almost three weeks.  As a result, I still have people telling me how much younger I look.   Laser skin resurfacing costs an average of $2,100 according to Dr. Oz.  In addition to significant costs savings from dry cleaning, hair products, commuting costs of gas and tolls, I think I may be in for a financial windfall.
•  Among the things I’ve been spending my new found wealth on are my own version of the LiveStrong yellow wristbands.  Yes, I sport the LiveStrong band and will get a LiveStrong tattoo once I kick this thing.  It is one of the most effective organizations to support patients and raise cancer awareness.  While I do not want to try to improve on perfection, the LiveStrong band is just a little polite for my own version of a campaign against the disease.  I wanted something that captures the magnitude of struggle and deep emotional connection that I feel to it.  So I have created my own wristband that me and my friends are sporting that is a little more on point.  Let me know if you want one.  Get one for grandma, too, but please note that they do not come in kid sizes.
My wife has used some of the money to pamper me in my time of need.  She does, however, get the least usable present award for buying me a gift certificate for a scalp massage after receiving a particularly fabulous one at a local spa.  A few days later we found out I had a skull lesion, basically a hole in my head that is probably best not massaged.  Awkward.  But this did not stop her from the requisite “hole in the head” comments.
Ann, of course, has been my champion through all of this.  We laugh, we cry – but mostly we laugh.  That’s why I love her and why I married her.  We know that many cancer books recommend latching onto a poem or a song that can help pull you through the tough times.  We could not get past a rewording of John Denver’s “Sunshine” where “sunshine on my shoulders makes me happy” becomes “sunshine on my shoulders gives me cancer”  (my first and second incidents of melanoma were on my left shoulder).  OK, you probably had to be there for that.
Another inside joke between us stemmed from the award winning biggest understatement of a nurse who, upon checking off my list of symptoms, stated that I was in “perfect health – well, except for the cancer.”  Now Ann I use this as our standard line when we so often have to go through these checklists.  We tell them “no nausea, no pain, no falling or injuries, etc., etc., – I’m in perfect health”, then - in unison - “except for the cancer!” [buh-bump].  Cracks me up everytime, but many nurses seem have no sense of humor.  I don’t think cancer has a sense of humor either.


  1. I think of you everytime I see the TP commercial. Not bad having the entire row to yourself on Southwest. Reserve the black bracelets for Don and I. We will wear them next to the yellow ones. We love you William.

  2. Just tell people that the bald streak on the side of your head is a racing stripe and it makes you more aerodynamic on the bike. Love the new wrist band.

  3. i would like a couple of bracelets, let me know the 411.

  4. Cancer cannot take away your sense of humor and how fabulous that you can laugh in the face of it! Like Carli said, Uncle Will's foot must hurt from kicking cancer's butt.

  5. Mein lieber Sohn,
    You must know that we pray for your continued strenght. You have what it takes to get through this battle. We read your blogs with interest and awe.
    Thinking of you ALL, always. Love and Hugs!!!!!
    Mom & Gene

  6. William--count me in for bracelets! Love it!! Also loving your sense of humor! I think you should publish this blog as a book for your next windfall of cash. I know it could hit the top 10 books. Then once you have a taste for coffee and wine again, you can really splurge! Love you guys, and praying for your spot to come available soon!

  7. William:
    I really admire you and your fight against cancer. Many people would just give up, but your determination is working in your favor. Your are eligible for the treatment coming up because of your attitude. What a great writer you are. The wrist bands are to the point and we would be happy to wear one. Best of luck on your upcoming treatment.

    Pam & Al