service, I began to get a sore throat and felt a lump on the right side of my neck. I figured I was getting a swollen lymph gland. By morning it was a bit bigger and (to me) definitely noticeable. I was having a bit of trouble swallowing as well. At our lunch, I definitely was having problems and could barely get my clam chowder down, delicious as it was. I have to tell you, it was one miserable trip home down I-5 that night as I could barely get a sip of water down without lurching my head to the left and forcing a painful swallow. The lump was feeling grotesque. Got home at about 9:45 and Loni thought it was ER time. The thing bulged out the size of half a large apple. On my skinny neck, that's something. I stayed home that night, but went off to the ER at Santa Monica-UCLA Med Center on Sunday morning. They CAT-scanned me, poked, prodded, puzzled, and told me I would be their guest for a while. By now I'm looking like half-goiter boy. I spent the rest of Sunday, Monday, and until 4:00 Tuesday afternoon on IV drips of antibiotics, steroids, and something to protect the stomach from the first two, with the usual every-two-hours vital signs check. My lovely roommate (many tats, wild eyes) mumble-sang "American Pie" in his sleep, used his call button a lot to summon the nurses to untangle his lines (resulting in loudspeaker responses), used the t.v. as a night light, and had a diarrhea problem where he had to scream for the nurses to unhook him from his lines so he could get to the bathroom "NOW or by GOD I'm going to shit right here in the bed!" The fleet-footed nurses managed to spare me the consequences. It was a fun few days. At that time, they didn't know if it was just infection or if there was some tumor base, and were analyzing the biopsy, etc. Meanwhile, the post-hospital oral antibiotics took the lump down to about one small egg size. Then came Black Monday, November 19.We were getting ready to leave the next day for San Francisco to spend Thanksgiving with the boys. Got a call from my family doc who started with the dread words, "I'm sorry." Gulp. These are not the words you want to hear from any medical practitioner. The biopsy results showed "large number of malignant cells consistent with squamous cell carcinoma." The more defined description is "Right Oropharyngeal Tumor." This proved to be a stage 3 (local, but advanced) cancer. Seems to be centered at the right base of the tongue and right tonsil. This is not, as I would find later, a great place to have a tumor.
I met that same day with the oral surgeon who had seen me in the hospital, who cheerily pronounced both that we would "grow old together" (wonder how HIS health is) and that this was not a candidate for surgery due to its location and involvement with other structures. Yikes. In short order I collected a medical oncologist (for chemo) and a radiation oncologist for the zapper. Since the holiday was coming up, there weren't any appointments available for another week, so we went off to S.F. for Thanksgiving. No reason to spoil the fun, so we just left it as an "infected gland" and had a great time with the boys, eating, and touring the City.
Back home again, the next step was to get a CT scan and a PET scan to determine whether there
was any metastasis. These proved negative for any remote spreading, so there was some positive in all of this. We can concentrate on the one spot. Much planning goes into attacking these things. First, the medical and the radiation oncologists have to agree on a course of action. Traditionally, one gets a course of chemo, followed by a course of radiation. However, studies are showing better results if these are done concurrently. That's more effective on the tumor, but a more severe assault on the body. Of course, my guys disagreed, so there was some anxiety while they,
ah, "discussed" it. Concurrent won out. The radiation is all computer-controlled these days (at least at UCLA, where I'm having this all done). For head-and-neck cancers, they have to fit you with a plastic mesh full-head mask. Once they fit you with one of these (like draping warm limp plastic all over your face), it hardens into a replica of your noggin. They use this, in conjunction with the head scans that they took, to establish where to aim the xray beams. They mark the loci on the mask. Then when you go in for the actual treatment, you lie on your back, they fit the mask over your face, latch
it down to the table so you can't move (for 35 minutes each time), set the computer, and fire away (after scampering for safety to the adjacent control room). The zapper is a huge beast that rotates 360 degrees around your head, whirring and buzzing as it does its thing. Fortunately, they have a nice boom box in the room and you can bring your own CD's to pass the time. As I write this, I've just completed the fourth week of daily (M-F) zap sessions, with three weeks to go.I've also completed five weeks of chemo (every Wednesday), with one to go. For the chemo, they
have to install a port-a-cath in your chest. This is a subcutaneous catheter port that has a line extending up into the jugular. That was another operation, done under local. Very weird feeling. The purpose of the thing is to avoid having to use smaller vessels in the arms: the catheter here goes right into a major-flow vessel, so the drugs get dispersed much better. The first time I got the chemo was a doozy. I had a reaction to the drugs almost immediately, consisting of extreme lower back pain (has it crowned yet?) which had me utilizing the Lamaze methods that I practiced with Loni so many
years ago. The nurse was right on it, got more pain drugs into me, slowed down the flow rate, and we were good to go. A nasty fifteen minutes, though, which I don't care to repeat. The second time, we adusted the pain meds up, the flow rate down, and all I got was a twitchy left leg that had me kicking every minute or so for about a half hour. We've now got that down to just feeling like it wants to twitch, but doesn't. Fun and games at the chemo center.The chemo effects (nausea, listlessness) kick in for me on the third day after the treatment, and last for three days. Your mileage may vary. The chemo also boosts the effects of the radiation, so the weekends are not much fun. The radiation and chemo have destroyed my taste buds. Everything has this metallic cardboard taste, and eating is a chore, not a pleasure. On the days when the radiation fry is worst, I'm down to drinking Ensure and the like as the mouth and throat are so sore that I can't swallow anything else. I am definitely looking forward to the last of the chemo, in the hope that some of these effects will lessen as I complete the radiation.
The goal, of course, is to get a PET scan at the end of the month that says, "It's gone." I am avoiding all thought of having to go through another round of treatment. "OUT, DAMN SPOT!"
Relatively speaking, I have it good. I can only wish that poor Mike had gotten a timely diagnosis and then decent treatment. My infected lump was my warning bell. But Mike and I are not the only of the Modesto gang to engage this disease. Some of you might know, but others not, that Jim G has been battling a much worse diagnosis since last Fall. He had stage 4 non-small-cell bronchogenic lung cancer. He had immediate chemotherapy, and a PET scan in November showed no evidence of cancer, so he's classified as in remission. The average length for this remission is six months, but could be much longer. Let's hope it's forever. Jim has been providing me with the support of a fellow traveler, comparing symptoms and light-at-the-end-of-the-tunnel encouragement, for which I am grateful. I'm sending every good thought his way. Perhaps a 50th Motown reunion in Seattle?
Most important to this process is Loni. She is an absolute rock. She puts up with all the moaning and groaning, makes me homemade soups to swallow when the throat is painful, keeps me positive, and has taken on all the chores that I no longer have the energy to do. In good times and bad. Amen.
1 comment:
Holicow, Jon! What a terrible thing to have happen. Your narrative is powerful, if scary. May your treatments be successful.
I'm sure you'll keep us posted.
My very best wishes,
Osea
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