By Gates (Pam) Johnson
It’s been a rough few months. In December, I had major back surgery that would hopefully help my foot neuropathy, but would take a year to heal. Okay. I can deal with that. Not fun, but chances are good that life will get better because of the surgery. A couple of months go by, then a check-up showed things were progressing nicely. Excellent. I could resume most normal activities.
Then in late February, the hammer dropped. I went to a new dentist because of some tooth pain. He checked me out and said he didn’t like what he saw, so was sending me off-Island for an extraction and biopsy. The results came back sooner than expected. Squamous cell carcinoma. Boom. The cancer journey started.
Once I got the diagnosis, the waiting game began. And the referral game. Dentist-oral surgeon-cancer surgeon-oncologist. I was referred to doctors at Swedish, which wasn’t my first choice as I had a bad experience with them before. The past is over and gone, so even though I was not looking forward to schlepping to Seattle’s Pill Hill, I followed up.
The cancer surgeon said I would need surgery, but first needed to see the oncologist. Surprisingly, they got me in pretty quickly. The oncologist said we would need to wait for a test on the biopsy that I had, to look for something called PD-L1. If I got a high percentage of PD-L1 on the test, I would qualify for an infusion protocol.
Hurry up and wait. It took about a week to get the test results. My oncologist called to say my percentage was 100% and that I am an over-achiever.
Next step was scheduling an infusion of a drug that adheres to the cancer cells and kills them. Sometimes it mistakes healthy cells for cancer cells and kills them too. Of course, there are many possible side effects that probably won’t happen, but just to cover their bases, they have to tell me. It took about a nanosecond for me to say, “Give me the infusion.”
The infusion nurse called me a bit later and asked if I could come in the next day. Less than 24 hours after being notified of the test results, I was getting infused! That’s what I call service.
I was not sure how I was going to get to the appointment the next day. My son was up to his ears in work. My daughter-in-law was in Spokane with her brother who was in the hospital. My daughter works and lives in Chehalis. My grand-daughter lives in Woodland and also works. My nephew and niece both work full-time. Time to start asking my friends. Thank heavens for family and good friends.
My cousin Glenn took me to the first cancer surgeon appointment. My good friend and old middle school co-worker Susan was very familiar with Seattle driving. She had a doctor’s appointment in Seattle. It worked out that I went with her to her appointment in Northgate, then we jetted to my appointment at Swedish. When asked if she could take me to the infusion appointment, she shuffled a few things and said “sure.”
Infusion day arrived. My appointment was at 10:50 a.m. The ferry line was backed halfway up the hill. It didn’t move for the longest time. The boat was late. My anxiety, already nearing the explosive point, ramped up the longer we waited without movement. I called the hospital and said we would probably be late, but they said it was okay.
They also sent me a priority load, but the ferry system won’t take an email, only a printed copy. Obviously, Susan does not keep a printer in her car, so that did no good right then. When we finally got on the boat, the ferry worked directed us to the upper deck. Susan grabbed my disabled parking pass (from my back surgery) and waved it at him. He let us park on the lower deck (to be closer to the deck restroom and elevator). Quick thinking, Susan!
We made it to the hospital only a few minutes late. Part one of the appointment was a blood draw. I’m a little needle-shy because my veins don’t always cooperate. They sat me down in a little cubicle and a tall young man with frosted blonde hair tips, Raul, came in to do the draw.
I told him my veins weren’t the best, but he had a calm demeanor and said it wouldn’t be a problem. He tied that thing around my arm and started feeling for a vein. Next thing I knew, he was filling up the tubes. I did not feel a thing! He filled up seven vials, then sent me on my way to the next stop.
Part two was meeting with a case manager and my oncologist. They were running behind, so Susan and I sat quite a while waiting. Finally, the case manager came in and gave me a bunch of information and forms and stuff. Good thing Susan was there to hear it, because I was in anxietyville and didn’t hear a lot.
The doctor came in, said a few more things and had me sign something (which I did not read), then sent me upstairs for the infusion.
Once upstairs, Susan and I were ushered into a nice, private little room. There were two comfortable chairs. Mine was a recliner and Susan had a chair with a footstool. Nurse Michael came in, asked if I was comfortable, and brought me a heated blanket.
I told him about my stupid vein problem. He wrapped my arm in heated towels, then went to get the IV supplies. Supplies in hand, Michael started searching for a suitable vein. Thought he found one, but it blew out so he had to find another. He left for a minute, then came back with this weird light thing on a rolling stand. A vein finder. Who knew such a thing existed? Susan came over for a closer look, which was fine because it was fascinating.
Michael turned it on and a green light showed on my arm. You could see big veins, little ones, crooked ones … it was crazy! He found what looked like a good choice. I closed my eyes, felt a tiny little poke, and we were in!
Once the IV was established, the medication was ordered and mixed. That took about half an hour. Two more nurses came in to hook up the saline and medication and set up the drip. The nurses were Joseph and Mary. That felt a little prophetic. Anyway, the med started to drip, I felt nothing, and we were set.
The nurses asked if we were hungry or thirsty. Michael brought me a ginger ale and a glass of ice. Susan went to the little kitchen area and got a vegetarian sandwich. There were various sandwiches, pudding cups, veggie sticks, crackers, and all kinds of beverages, all free. I have to say this place really takes good care of their patients!
The next step is another infusion on May 6th. Surgery on May 28th. It will be a big one, seven to eight hours, then three days in the ICU, followed by five to seven more days in the hospital. If everything is good after the surgery, I will have a year of infusions every six weeks. And, if all goes according to plan, I will be considered 99% cured.
