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Saw the urologist yesterday, he’s a bit concerned about swelling of my right kidney.  Thinking it’s being irritated by swollen lymph nodes, the best option right now seems to be to wait and see how I respond to chemo.

Looking toward an upcoming week of procedures, I need spiffing up, so went for a haircut.  I’ve followed a number of barbers around lately; can’t seem to replicate the decade long relationships I’d once enjoyed.  I found “my” barber has moved to a different shop, so sat down in the first chair offered,  acceding to let some stranger have her way with my hair.  During the usual barber / customer small talk, she asked if I had any big plans for my summer.  What do I say? I don’t feel everyone I encounter needs to hear my story.  She asked a seemingly simple question.  After a long pause, I mumbled being unsure how to respond, eventually sharing I was starting chemo soon and didn’t know with any certainty what my summer held.

And then she changed my day.  Pointing at a family photo in her gear box, she said it was the Make-A-Wish trip they had enjoyed when her son was battling cancer.  Diagnosed with stage 4 cancer at 23 months (some blastoma type, the details didn’t stick with me), he is now 7 and doing great.  We talked about treatments and Kaiser and Doernbecher and life.  All I could imagine was the hell she’d experienced as Mom dealing with her little guy’s battle. She told me that in the end, it had been good for them, they were a stronger family for it.

And at the end of my haircut (excellent job too)  I was a little stronger for hearing her story.  Thanks Valerie, I was supposed to meet you today.

Barely out of the blocks on this marathon and I’ve had to make a spreadsheet to manage my meds.  Some are taken with food, some at specific time intervals, others before bed.  One prescription is for pain, the rest to deal with unpleasant side effects of the first.  As Grandpa used to say (though probably in a different context), “I’m stove up”, so need pharmaceuticals to get my wonky G.I. system processing regularly.   One of them is green and tastes like suspiciously like alfalfa; as close to a green beer as I’ll get on this St. Patrick’s Day.  And then there is the water.  A friend generously shared an ionized water machine with me.  Depending on what Internet site you read, ionized water is either a cancer curing miracle or modern day snake oil.  My doc says I need to stay hydrated and that it won’t hurt me, so I’m drinking it up. Soaking in our hot tub brings me more relief than any of the meds but I can’t stay in there 24 x 7.  The REAL life-saving water is in the brown ceramic bowl.  At Christmas, we were shopping in a Portland gallery for a beer growler for Peder.  Judy spotted this little bowl and asked me to buy it for a font, providing a daily reminder of our baptism.  And so it does.

Our bell choir this morning played this song.  Knowing the lyrics, they played in my head as I thought of these past few days.

The sun comes up
It’s a new day dawning
It’s time to sing Your song again
Whatever may pass
And whatever lies before me
Let me be singing
When the evening comes

Yes, we have a difficult road ahead and can’t be sure what lies before me, but all the love and support expressed for Judy and me these past few days will have me singing (You really don’t want to hear that though).

Thank you all.

Maybe listen to the songwriter instead:  Matt Redman — 10000 Reasons

I’m officially stage 4. Yes, just a number, but admittedly a scary one. Oncology Doc called today with that bit of news, though it was expected. We talked over my chemo plan; I’ll start on March 24th, two days after port install. Will be a two part cocktail, one delivered at the chemo center, then a wearable infusion pump that goes home with me and runs for another two days.  Skip a week, then rinse and repeat.  Can’t remember if he said for six weeks or six times; doesn’t matter I’m all in.

Judy and I visited school district headquarters today and filed paperwork generously granting her the rest of the year off (starting last Monday) to be my caregiver.  Those six months of sick days she thought would be left on the table at retirement look like a beautiful blessing today.  The angel benefits adviser gave me a chemo swag bag too, pillow, teddy bear, blanket, gloves and more.  Finally,  we stopped by school to pick up some of Judy’s personal stuff and were surrounded by the love and concern of her staff mates who have had her back since before we knew what was wrong with me.

 

Today I received this prayer shawl, knit by ladies of the St. Matthew Prayer Shawl Guild and delivered with an extra dose of love and prayer from Nita & Ron.  I expect it to keep me warm during chemo treatments when we get to that point.  The mail brought my first cards and neighbors Sue & George provided delicious home-made stew for dinner.  Had a good call with Pastor Jim and he helped me realize my situation can be a blessing in my interaction with family and friends.

And the Holy Spirit helps us in our distress.  For we don’t even know what we should pray for, nor how we should pray.  But the Holy Spirit prays for us with groaning that cannot be expressed in words.  — Romans 8:26

Met my Kaiser oncologist for the first time today.  Like him a lot; good thing, he will be our coach through this battle.  Compassionate but frank, he said my prognosis isn’t good (“not the kind of cancer you want to get”).   Officially esophageal junction cancer, the giant question now is whether the fluid drained from my chest cavity last Friday will show cancer.  If so, I’m labeled Stage 4.  If not, well you can see Stage 4 from here.  Next steps are plumbing me for a chemo port, a CT scan of my chest and coming to terms with what this all means.  And so we wait …

Another appointment, this time with a pulmonologist.  Doctors had seen something on my CT scan during diagnostic week they wanted to check out.  Turns out I had liquid in my chest cavity, impinging on the space my lung wanted to occupy.  She drilled a hole in my back and Shop-Vac’d a Big Gulp worth of liquid (1.1 L) from me.  Well, it was more refined than that but it’s my story.  A chest x-ray to ensure the procedure hadn’t punctured my lung and we headed home.  The fluid (looked like an nice IPA) will be sent for analysis, expect results next week.  I feel better already.

Today I had an EGD (upper endoscopy) and after six months of escalating G.I. issues we finally have root cause — esophageal junction cancer. Biopsies were taken, but the gastroenterologist that did the exam told us it was almost certainly cancer.  How do we share this news with our children, parents, extended family and friends?  All we can do is wait for the lab results and pray.

I have been blessed beyond measure my whole life.  My wife as my best friend, three awesome children and their equally awesome spouses, two perfect grandchildren, a loving, supportive, extended family, an interesting, fulfilling career doing what I enjoy and friends from all aspects of my life experience.   Seeing the trials some folks have endured, I  would sometimes ponder how I would respond to such a test.  I wonder no more, my turn is now.

After months of declining health, and a week of TLA (three letter acronym) diagnostics I’ve recently learned I have cancer.  CANCER.  Worst case scenario.  I’m an engineer and kind of contrarian guy so want to tell my story my way, not using some cookie cutter health site. This blog will be my journal to share my cancer journey with family and friends.
Be kind.