The Cancer Thing. Part I

So by now you may have ascertained that I am running (training for, blogging about, shopping for, etc) the Atacama Crossing 2020 to give thanks for being 5 years cancer free.  And that in the process I would love to raise a little money for people fighting their own cancer at the Seattle Cancer Care Alliance.

Full disclosure, when Atacama happens in September, I hope to be almost six years cancer free. But because Atacama is such a large undertaking, and hubris being what it is, I was afraid of signing up for last year’s race ahead of the 5 year mark and risking the wrath of the gods.

I haven’t written about the cancer thing, or even talked about it much. Cancer is something that is difficult to talk about. If you ever want to quiet down a party, just lead with “well, the last time I had chemotherapy….” And, speaking solely for myself, cancer is something that I would like to forget about, or at least put behind me. But, the human body being an imperfect conglomeration of cells, there is always a new lump, a little dizziness, or a new ache and suddenly cancer is back, sitting at the driver’s seat of your random thought wagon. So, in an effort to put some of these demons to rest, I’m going to set what I can remember of the story on paper. Warning, this may not be especially entertaining.

Nancy and I were driving home (we lived in Seattle then) from Whistler, British Columbia on or about March 28, 2014 and apparently the sun was coming through the window of the car at just the perfect angle, and Nancy said something like, “it looks like there’s a lump in your neck.”

(Thankfulness Note: I give thanks for Nancy, my beautiful and brilliant wife, who has saved my life on more than one occasion.)

And I said something stupid like, “I’ve had a sore throat, it’s probably just a lymph node.” And we forgot about it for a week or two until we were both brushing our teeth, and Nancy said, “Really, you have a lump in your neck.” So we did what doctors usually do and asked our colleagues, in this case the ENT guys, what we should do. The ENT guys said it was probably just a blocked salivary gland, but, if we were worried about it, I should get an ultrasound.

The radiologist read the ultrasound as normal, but Nancy insisted I keep the appointment she’d made with her ENT guy. By this time it was May. He spent practically all of the 20 minute visit cleaning the wax out of my ears while we talked about bicycle racing. He was on his way out of the room when I finally asked, “so, what do you think this lump is?”

“Probably just a blocked gland.”

“Wouldn’t that be painful? Wouldn’t that show up on ultrasound?” I countered.

“Well, if you want, we could do a CT scan.”

The radiologist read the CT scan as “an invasive mass” at the base of the right tongue, with a long list of possibles, but most likely lymphoma. Now it was June. A few days later I was under anesthesia getting an open biopsy of the thing in my neck. The ENT guys said it came out looking like chunks of cottage cheese. They were worried it might be tuberculosis.

I didn’t see the actual pictures of the CT scan until several weeks later. What impressed me the most was that this invasive mass thingie had effectively taken over more than half the space that air went through when I breathed. I should mention that while all of this was going on, I was in the thick of bicycle racing season. Despite training harder and shedding 10 pounds (which I had thought was from the added training, but in retrospect may have been from the cancer), I was having trouble matching my results from the previous season (my first). Looking at the CT scan, it was no wonder I felt like I wasn’t getting enough air.

Finishing a road race in Walla Walla in April of 2014

The stuff they took out of my neck had to be sent to the pathology lab at the University of Washington for special testing, and it was over a week before the diagnosis came back: NK cell lymphoma, nasal type. The NK stands for natural killer. (You know you’ve drawn the short straw when they tell you that your cancer has natural killer in the name.)

The second week in June, we met with the oncologists. The first oncologist had made the cover of the Best Doctors edition of Seattle magazine. He was very nice. He told us that NK cell lymphoma was so rare that there wasn’t really a set treatment protocol. He said there were a couple of different treatment plans we could try, but the two year survival was somewhere around 50%. And that didn’t seem to bother him.

One of Nancy’s colleagues at the UW had recommended a lymphoma specialist at the SCCA, but he explained that he was a B-cell lymphoma specialist, and that we really wanted to see Dr. Shustov, the T-cell specialist. At the time, Dr. Shustov, had the largest panel of NK cell patients in North America. On Friday, June 13th, we met with Dr. Shustov. He described the 2 most recent promising studies on the treatment of NK cell and then told us which one he recommended (the most unpleasant option, the one where they gave the chemo at the same time you got radiation). He looked on the computer at his calendar. He said we could start on Tuesday. They would put me in the hospital, put in the IV port and feeding tube, and then start the first round of chemotherapy.

I asked him if I could finish out my shifts at work for the month of June, so as not to inconvenience my colleagues. No. I told him that I was planning to race the Baker City stage race the end of June. No. Could I at least race the Northshore road race on Saturday? Yes.

On Saturday, June 14^th, Nancy and I drove to Bellingham for the Northshore race. It was a pretty good race for me. I went off the front briefly on the last big climb and splintered the peloton such that only 16 riders came to the line together. Given my complete lack of sprint legs, that meant I finished in 15^th, but it was still a pretty good day for me. After the race we drove up to Vancouver, BC for a weekend of calm and comfort before the storm. On Sunday night we hedonistically made our way through an amazing 12 course dinner with wine pairings at the Secret Location Restaurant (sadly now out of business). In the coming month, the chemotherapy and radiation would kill off my tastebuds, so, although I didn’t know it yet, this would be my last supper, of sorts.

And, on another sad and ironic note, during this time, our 12 year old yellow lab Bailey was having nose bleeds. Dogs don’t handle nose bleeds very well. It’s hard to teach them to pinch their nose and tilt their heads back. We would come home to blood spattered walls, and Bailey would be curled up apologetically by the door. The first week of June, Bailey went under anesthesia and they put a nasopharyngeal scope up his nose. My dog and I were both diagnosed with cancer the same week.

Bailey, in happier days.