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Haven’t posted for a while, we are nine days into our long time dream Route 66 trip.  Trying to wedge this trip in between chemo sessions. Didn’t want this forum to become a travel blog but thought you may want to know whats up.  We drove down to Santa Monica, stopping to see Katie, Scott and grandkids on the way.  Set out July 15 headed east from Santa Monica.  First night Needles CA, then Williams AZ, Winslow AZ, Albuquerque NW, Tucumcari NM and tonight Shamrock TX.  We’ve seen and done more than we imagined possible and more than I can describe here.  Today we reached the midpoint in Adrian TX.  Soon we will have to decide when to head for home.  We don’t have time enough to go all the way to Chicago as much as I wish we could.  Another trip for another time I hope.  I’ve been posting daily on Facebook.  If you do that and want to follow us,  friend me and I’ll hook you up.

The best part about our trip is that I feel terrific and have largely been able to ignore the entire cancer thing.

It has been a kick!!!

 

One of the reasons I ride Cycle Oregon is to test myself, both physically and mentally.  It gets harder as the years accumulate but this year will be especially challenging.  I’m feeling strong, still able to tackle most anything this 62 year old guy has any business doing.  A few weeks back I went out for a 32 mile ride with some decent hills.  4th of July weekend we did a moderate four mile hike to Tamanawas Falls and I got in a 52 mile ride out to Hagg Lake.  Felt great afterward, getting stronger after my winter layoff.

Other testing hasn’t gone as well.   Had three blood draws in five days hoping my count would be high enough for chemo but no cigar.  The delays were conflicting with our vacation plans as our summer is about scheduled out.  Yesterday morning the oncology staff encouraged us to take our vacation now, skipping a chemo session wasn’t a big deal, at least to them.

So, with 24 hours to get everything together, we hit the road headed for Santa Monica where we will pick up Route 66 heading east.  We’ve got a bit more than two weeks before we have to be home.  Today’s test was the 430 miles from home to Redding, CA.  I did fine and this will be one of our longest days so we are off to a good start.  The “mother road” isn’t the only historic highway, we got a “kick” from these Hwy 99 signs.  Ever the contrarian, we are doing 66 backwards so this is cleverly appropriate.

Stay tuned for more about our adventure, cruising with cancer.

Since my CT scan last Friday I’ve been waiting as anxiously as a student anticipates state testing or SAT results in revealing their future. Our schools don’t give letter grades anymore, they use terms more suited to a performance review like “meets expectations” or “exceeds expectations”. If Judy were to give my CT scan results a grade, it would be a solid B.

My oncologist is encouraged, maybe even a bit surprised.  The radiologist’s report of my scan is two dense pages of medical jargon but the most significant sentence to me was “No further evidence of metastatic disease within the chest, abdomen or pelvis.”    Basically, the primary tumor hasn’t grown any and the cancer hasn’t spread.  Doc told us when we started chemo that a result like this would be a win and this first scan is the most significant.  So, Mark 1, cancer 0 for this round. They did detect some spots in my spine which doc said were probably cancer before we started chemo but not visible on the first CT scan.  Now that the chemo has attacked the cancer, the bone is recovering which shows up on the scan.  He said it’s not a big deal, I have to go with his assessment.  The current plan is to continue with the same chemo regimen I’m currently on, same cocktail of drugs, once every two weeks and I got cycle 7 today.

I’ve said since day 0 that prayer and chemo will be what heals me.  A most excellent care giver, positive outlook, diet and maybe that magic water are helping too.  I could probably make a case that there are hundreds of people praying for me. While I doubt God treats prayers as a “Like” button, it boosts me to know people care about me and have been praying for the news we got today. Then again I know there are millions of cancer patients that were fervently prayed for whose story ended too soon. It’s all a mystery to me.

So today was a good day.  I got a paycheck today too but that’s another story.  On Father’s Day my brother-in-law Joe took me flying.  I’m flying even higher today.

Judy was able to take a deep breath and we both say,  Thank you God! and thanks to all of you too.

“It is one of the blessings of old friends that you can afford to be stupid with them.” — Ralph Waldo Emerson

Last weekend I was camping with four friends I’ve known for 35+ years. We share decades of work life together at Tektronix, Credence, even going back to my college days.  This particular outing dates to the 70s, I was a latecomer, joining them late 80s.  Back in the day we invaded a remote, little used  forest service campground on the Metolius arm of central Oregon’s Lake Billy Chinook.  Recent years we’ve been ensconced at a generous friend’s rustic resort place on the lake. We’ve experienced our share of stupid, somehow that tapered off with age.

Having a “normal” weekend with friends of our longevity was special and they had gone to a lot of trouble to schedule this weekend around my chemo regimen.  We shared some frank talk about my cancer, but mostly just great conversation about cars, giant trucks and RV’s, our common work lives, hobbies, health care costs and our various aliments.  I told them I’d be writing about my weekend, they told me what happens at Round Butte stays at Round Butte.

Tomorrow morning I have a CT scan to determine the state of my cancer. We meet with my oncologist on Thursday where we expect to hear the results.  I’m feeling great and believe the prayer and chemo combination is working but I’m scared too.   I learned today that while I was off camping, a co-worker at Summit passed away after a six month battle with pancreatic cancer.   He worked in another group and I barely knew him but I had no idea he was fighting cancer.   Cancer sucks.

Today is my 62nd birthday, another trip around the Sun complete.  Three months to the day since my DX (cancer speak for diagnosis).  Will I live to see 63?  No one knows.

I’ve heard someone say the reason they wanted to be married was so there would be someone to share their life story.  Judy tells me Broadway phenomenon Hamilton ends with a similar sentiment.  Judy and I have been inseparable since we were 18, after that April 10, 1973 Gordon Lightfoot concert first date.  Fully 71% of our lives spent together.  We have stories aplenty. Given my situation,  there’s been lots of reminiscing. We built a house together, raised a family, took long road trips, enjoyed family vacations, pursued two careers where we were blessed to do work we enjoyed, navigated unemployment and volunteered too much.   No Pulitzer or Nobel (though I do have a patent) but I’ve had a great life so far.  All shared with my best friend (who can tell you the REAL stories). The only real time we’ve been apart is those accumulated 25 weeks worth of Cycle Oregon.

This week we finalized our wills, the “stuff” now has a plan.
Our real legacy is three awesome kids, their perfect spouses and two grand kids, the joy of our hearts.  The world is a better place because of our three children and we did that.  Whatever else I’ve done, good or bad, will be forgotten eventually, but my story will continue to be written through them.

So where am I?  Tuesday I have my final chemo treatment in this series of 6. Then a scan to see if we are having any effect.  Anecdotal evidence suggests the chemo must be working.  The issues I had before starting treatment have disappeared and any discomfort I have is caused by the chemo itself. Doc has told me he doesn’t expect chemo can cure me, just prolong me.  I’m so hoping he is wrong, I don’t want my story to end just yet.

My first birthday, outside the parsonage on Vashon island.

I think Judy and I have done well over the years making the opportunity to travel, attend concerts, etc.   I especially enjoy surprising her or doing some spur of the moment thing.

Months ago friend Tom had invited us to see Billy Joel at Safeco Field in Seattle.  After my cancer diagnosis, my first reaction was to tell him, no I couldn’t make it.  Then I thought why not, I wanted to see Tom and Susan, knew I’d enjoy the concert and thought I could work it out with the chemo schedule.  Last Thursday my chemo was deferred due to low platelet count.  Initially I was bummed but then realized we could stay in Seattle the whole weekend and celebrate Judy’s birthday there.

And so we did, having a fantastic weekend.  Took the train to King Street Station and Tom was better than Uber, transporting us around.  We always enjoy Seattle, being my birthplace I somehow feel a connection. The concert was awesome, we shared a great visit with Tom and Susan, celebrated Judy’s birthday at Ivar’s, sailed the ferry to Bainbridge and got home about 11 PM Sunday.  Another great chapter in our memory book.

60 Minutes icon Morley Safer just died, barely a week after retirement. I’ve had friends and acquaintances that put off too many things till retirement and didn’t live to see the day.

I’ve shared with some of you that if I knew how long I have, would this be how I spend my time?  I have no crystal ball, no knowledge of the future. Neither do you.  So, cancer or not, I’d encourage you to seize the day and enjoy your life now.  Judy and I love the Disney series Phineas and Ferb, here is their take on Carpe Diem: Phineas and Freb Carpe Diem

Yesterday I had my 5th round of chemo.  They had to back off the dosage of my Oxaliplatin because my neutrophils (related to white blood cells) count was low.  I’m reluctant to change anything I hope will kill this dragon but Doc knows best. Just a part of the process.  I’m feeling fine on day 2, pretty much same as before, some tingling fingers, shakiness and a bit fatigued.  Most of that goes away by day 4 after treatment.

Today was to have been my fifth chemo treatment, unfortunately my platelet count from yesterday’s blood test was too low.   Another test today showed an increase but still below the threshold for treatment.
So, I’m deferred to early next week, assuming my count recovers as expected.

Met with my oncologist today and he is pleased with how I’ve been tolerating the chemo and my general condition.  I did a 40 mile bike ride Tuesday, he smiled about that.

Everything has been going per plan thus far and I’ve sort of scheduled my immediate life around the every other Thursday though Saturday regimen. In the grand scheme of things, this isn’t a big deal but I’m bummed about this little setback.  Apparently I need to be reminded, it’s not my plan.

Years ago while having dinner in the caboose at Pizza Caboose, one of our progeny emphatically stated “it’s not fair!”.  A woman dining in an adjacent booth chimed in “I’ve never been to a snot fair” thus minting an enduring family non sequitur.

This week at work the coffee station conversation turned to what is “fair”.  I think the brain trust concluded there is no “fair”, in health or life.

A friend at church recently lost a second wife to cancer. Snot fair. Little kids get cancer before they can read. Snot fair.  Hard working folks at Intel are laid off because the market changed. Snot fair.  A friend recently retired only to learn he has Parkinsons. Snot fair.  Why did Butch and Sundance die in a hail of Bolivian lead? Snot fair.

Why do I have cancer? Snot fair.

There are only questions, no answers, this side of heaven anyway.

My fourth chemo treatment went well, less side effects than 2 and 3.  Just small mouth sores, cold sensitivity and the tub looks like someone shaved a gorilla.  Round number 5 is scheduled for Thursday.

Although it’s Cinco de Mayo today, there are no tequila shots in my plans. Instead, it was round four of my chemo series.  Lounging in the recliner at the infusion clinic, I got to thinking of that country tune Ten Rounds with Jose’ Cuervo.   So with apologies to Tracy Byrd, here is my version:

But after one round with FOLFOX chemo
fingers tingle from cold but little else to report

And after two rounds with FOLFOX chemo
hair started to fall, thrush coated tongue hurt like hell when I’d eat

Then after three rounds with FOLFOX chemo
still strong in the spirit and Doc wants me to pig out so as not to lose weight???

And after four rounds with FOLFOX chemo
effects do accumulate, I’ll just have to wait …

Though dealing with some side effects, I’m better off than if I’d had four rounds of tequila.  Happy Cinco de Mayo everybody.

When I’m well again …

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.