Month: April 2016

Seems I’ve found a pretty effective weight loss program but I can’t recommend it for you.  Doc is concerned with my downward trend and wants me to eat more. Haven’t gotten that advice from a doctor, like ever. Keith suggested an app called Lose It! which I’m now using to track my diet.  It lets you scan the bar code on food packaging to enter items and pulls from an extensive database.  I doubt the developers use case testing saw many who wanted to gain weight. I’ve used the WeightWatchers app before and tracking meals with Lose It! is an order of magnitude simpler.

Tracy and Judy steer me toward brussels sprouts and salads but I just can’t eat enough of that to get the necessary calories.   I tend to crave jelly donuts,  Hostess cherry pies and ice cream though the cold bothers me.  S0 I’m drinking protein shakes and eating pretty much anything I want. Thankfully, things still taste good, I’m not having the loss of appetite issues many patients experience.

Given my liver and kidneys are working overtime, I don’t drink at all now. Come to think of it, that might explain the bulk of the my weight loss right there.  Made our visit to Bend over the weekend a bit frustrating given the plethora of well renowned brew pubs we left untapped.

Post chemo round 3, feeling about the same as previously.  I experience some shakiness the day after and more of the cold sensitivity.  Outside in the wind at Smith Rock my face turned bright red and felt like a billion little needles were poking me but it goes away quickly when I warm up.

Blatantly stole this meme from someone’s Facebook post.  Takes me back; I’ve been to my share of potlucks.

 

Saw my oncologist today, prior to chemo round three.  Tracy and Keith are here from Virginia and they were with so I had my own entourage.  Doc asked lots of questions about how I was doing, then it was my turn.  I asked how aggressive my type of esophageal cancer is and what is the likelihood I’ll beat this.  He said the statistics would say most patients live 12 months after diagnosis.  It is not expected the chemo will cure my cancer, just keep it in check.  We’ll do another CT scan after my sixth round and if the tumor hasn’t grown or metastasized that would be success.  I hadn’t really realized that the CT scan I had prior to chemo provided the full “before” data, I’d thought it was just my lower abdomen.  So I’ve told some off you that the engineer in me wished we had before data for comparison and we will.  Either way, apparently I’ll start a second series of chemo as soon as the first is done if I can tolerate it.

The stark reality hit Judy pretty hard.  She Tracy and Keith are out on the deck drinking up my liquor.  Sharing today’s news with Katie and Peder wasn’t easy for me either.  Call it denial or faith but I believe I’ll beat this with prayer and chemo.  I feel better now than I have since October, rode my bike 25 miles last Sunday.  Statistics are meaningless to me, I’m a case of one and people DO beat this.  Why not me?  I asked if my riding Cycle Oregon was an insane idea.  Doc said not necessarily, my body will tell me what’s possible.  He told us we should do the things we want to do together, enjoy life as best we can and if need be, tweak the chemo schedule to accommodate some things.  We’re thinking that it’s time to make that Route 66 bucket list trip.

So, emotionally this was a shitty week.  Besides today’s news, on Monday we met with a lawyer to draft an irresponsibly long overdue will.   Friends, get your affairs in order for your family on your terms, not when facing something like this.  Then I find that after seven years as volunteer webmaster for Lutheran Men in Mission that they hired a developer to reformat my work to make it look more “modern” and essentially tossed me aside without any conversation or so much as a thank you.  Not nice.  Screwed over just like St. Matthew did to me after 8 years as webmaster for them.  Guess I’m done building sites for Lutheran organizations.

Our dear friends Susan and Gary had tee shirts made for us reading “Mark’s Pit Crew — savesparkplug.us” and delivered them with a basket of healthy goodies.  Thank you friends, I love them and you.

Time for some stupid movie therapy.  First up, Animal House, which we just finished.  “Bluto: Over? Did you say ‘over?’ Nothing is over until we decide it is!  Was it over when the Germans bombed Pearl Harbor?  Hell, no!”

That’s me, a bit confused but I won’t give up.

Here I am with Peder and Tom back in 2011 riding the original Deathmobile in Cottage Grove Oregon where the homecoming parade scene was filmed.  Love this movie!

As a kid growing up during the Cold War, I was enamored with the TV show The Man From U.N.C.L.E.   My grade school chums and I followed the weekly exploits of Napoleon Solo and Illya Kuryakin intently, even to the point of having a club named O.L.E. (“Organization for the Liberation of Eastmont”, our lily white, upscale subdivision).  Curiously, David McCallum who played Kuryakin FIFTY !!! years ago, is now medical examiner Ducky on Judy’s favorite show, NCIS.  But I digress …

On the show, the U.N.C.L.E. nemesis was called T.H.R.U.S.H, which is currently my nemesis too.  Thrush is a fungal infection of the mouth and throat, fairly common in kids and old guys with immune systems compromised by chemo.  I’ve got a really good case of it.  It makes for painful swallowing so it’s difficult to eat.  My tongue is coated with white goo and feels like it’s been belt sanded.  I have a couple of meds that are helping, Nystatin to battle the fungus and “Mary’s Magic Mouthwash”, a Lidocaine rinse that numbs the mouth and throat.  Ugly details here.

This morning I found a bunch of brown hair in the tub strainer; we all know where this is headed.  Probably won’t be long and I’ll be rocking that stereotypical, shaved head, evil genius style like one of those T.H.R.U.S.H. guys.  At least I know who will cut off my hair when it’s time.

Overall, I’m feeling well.  Still going to work, out and about as I wish and living my life.  Given the plethora of possible side effects, mine are fairly manageable.  I expected they might accumulate over time, and they have, but consider it all a minor inconvenience in my battle to kill this cancer.

Wake up Grandpa!  Our awesome son-in-law Scott pulled an all nighter, making a spur of the moment road trip to drive Katie and grandkids Simon and Cecily the 643 miles from San Leandro last night arriving 5:30 Am.

I’m reminded of two road trips of our own to Montana to say goodbye to my grandpa Myrvold and uncle Bud whose cancer battles did not end the way I wanted.  I’m praying Katie and family weren’t feeling that sense of finality on this trip. Had only my second good cry since this battle started thinking about this.  Kenny Chesney sings “Everybody wants to go to heaven, nobody wants to go now”.  That’s my story now too.

Katie went to my infusion pump disconnect appointment and we had time for a great conversation.  Made a detour to drive her past the former Bess Kaiser Hospital where she was born, now Adidas US headquarters.   Was fun to pull thru the same driveway in my ’12 Camaro as where we brought her home in the ’76 Camaro almost 34 years ago.

We watched the Lego movie today so I have that theme song ear worm stuck in my head, but an altogether good description of our day.

Everything IS awesome.

Began round two of chemo yesterday, so far feeling fine other than electric fingers this morning making it “interesting” to type.  My spring schedule will be three days of chemo (Thursday in clinic for four hours, then two days at home with pump) every other week.  My job is to chill out, a challenge for a guy whose wife says “doesn’t idle well” especially with Oregon 80+, blue sky days in April.  Started reading The Cold Dish, the first book in the Longmire series at the clinic.  About half way in, I’m already hooked.  Then an afternoon visit to my happy place for a post session cheeseburger and home for some binge watching of Top Gear on Netflix.

This afternoon calls for some Buffet tunes and likely a nap on the deck.  I assert cancer comes with a license to chill.

One month has elapsed since I was told I have esophageal cancer. Frankly, I’d never heard of it, so was quite surprised to learn April is Esophageal Cancer Awareness month.  See http://www.ecaware.org/ to learn more.

As you can imagine, it’s been a roller coaster of emotions and experiences these weeks.  We’ve gotten beyond the initial “Oh God, is he going to die in a few weeks?” to accepting the challenge of dealing with one day at a time.  Most overwhelming is the love and support from every quarter.  Many decades removed from worrying about what others think of me,  I really didn’t realize so many people care about me.

Judy’s twin Janet, acting as the family emissary from up north, presented me a beautiful quilt yesterday.  I know how much labor and love goes into a quilt.  With contributions from all four sister-in-laws and mother-in-law Mavis, they made mine in record time.  It’s a happy yellow and has made for a couple of great naps already.

Right now my thoughts and prayers are occupied with Gary Knipling, our son-in-law Keith’s dad who lives in Virginia.  Gary suffered a serious stroke this past week.  It’s still early, and he seems to be doing well but it will be a challenge to fully recover.

Another reminder of the tenuous hold we have on life and health.  Gary has been an utltra-marathoner since before it was a thing, an amazingly athletic guy.  I’ve been healthy and fairly active too.   One day we were fine, the next,  life is turned upside down.

Live every day and take nothing for granted my friends.

Mark and Gary, building Keith’s shed back in the summer of 2009