Thursday, 2015/9/3~Tuesday, 2015/9/15 – I’m a Wuss

Thursday, 9/3

20150903_PETscanThe PET scan was a humbling experience. I took an Ativan to help me deal with my claustrophobia, and the injection of radioactive sugar was not bad at all. The two technicians were warm, very competent and knowledgeable, and willing to explain things to me, so when I lay down on the table for the scan, I felt like it would be OK. The PET scan doesn’t use X-rays like a CT scan. Instead, it depends on a radioactive tracer compound, which in my case was FDG (fluorodeoxyglucose) Radioactive Fluorine is attached to the glucose the cancer cells love,  making them basically glow with gamma rays. The Fluorine 18 emits positrons, the antimatter versions of electrons. When a positron hits an electron, the annihilation of the antimatter and matter meeting releases a pair of gamma rays.  The  scanner has a ring of phosphors that glow when struck by the twin gamma rays.  The computer calculates the location of the collision by the times the gamma rays reach the phosphors. Check it out:

The donut around my head for CT scans has been only about a foot thick at most, but the PET machine was several feet thick, placing me in a noisy, confining tube, almost as bad as an MRI. I am used to CT scans being very quick, so finding out that the whole process of the scan would involve both a 5-minute CT scan and then a much longer PET scan, about 30 minutes total, was disappointing – but I had a very positive attitude. Even learning that the immobilizer used that evening would not be permanent, and I would have to have another one made the next day, did not upset me… much… Then the preliminary CT scan took several minutes, and my heart began to pound and breathing quicken, but I held still and did not fight the clamps or the strait-jacket wrapped around my arms and torso. By the time they had started me on the actual PET scan, I was hyperventilating and my mind was racing, bouncing against too many thoughts all at once. Luckily, there is an intercom in the scanner, so I was able to get them to stop and let me take another Ativan. I was ashamed of my cowardice and lack of self-discipline, embarrassed at delaying the use of that important system while others waited, and horrified that I might lose control whenever we resumed. Once the second Ativan began working, we started over. This time, instead of binding my arms tight against my sides, they let me just tuck my hands under my butt. I breathed as steadily as I was able, and tried to meditate on being relaxed and still, resting where I was, and letting things just proceed. After the initial CT scan, the PET scan went in nine two-minute segments. I had to hold as still as possible for about 25 minutes, and even avoid breathing too hard, because that would blur the image. To most people, that probably sounds like a nice, relaxing nap, but for me it was a nightmare. I am very thankful I had a very good friend to greet me afterward and take me home, because I was a lump of jelly by that time.

Friday, 9/4

The “radiation planning” was once again nothing like I had anticipated. Instead of sitting down with the radiation oncologist whose name was on the appointment, and making some plan, it was another immobilizer (this time molded to my face in a permanent cast)  and another CT scan, to map out the tumors so the Radiation Planner could design a program for the Linac to use, to hit the cancer and spare the healthy tissue… as much as possible. I almost lost it when I found that I did not have my dental fluoride trays with me. I had packed carefully the night before, putting the trays in the bag I would take with me to the appointment, because I knew they were required to make the m1441411283010ask and do the scan. After entering the scan room, I looked for the trays and they were not in the bag.   I feared I might have dropped them on the sidewalk when getting in the car, but hoped they would be at home. Charlotte patiently drove me the 80 miles of LA freeways back to Lancaster, and I discovered the trays in the medicine cabinet. I had remembered to take them out and use them at bedtime, but forgotten to put them back in the bag. An hour later, back in LA, they injected me with Iodine for contrast and made the mask, and did another CT scan with it on, and sweet, patient Charlotte took me back to Lancaster.

If all goes as planned, my first dose of Cisplatin and Gamma rays will be Wednesday, Sept. 16th, and the last radiation on Tuesday, November 3rd. Maybe I will glow in the dark for Halloween! I believe that my Kaiser Permanente cancer team is the best, and best equipped, in the Western US, if not the world. I am taking an active role in preparing myself, mentally and physically, for the battle, and I plan to be cured of cancer, permanently, by Tuesday, November 3rd.

Tuesday, 9/15

In order to be at the Sunset Oncology-Hematology Dept at 9AM Wednesday for my first dose of chemotherapy (to be followed as closely as possible by radiation nearby) I had to go down the day before and spend the night. The madhouse that is the Los Angeles Metroplex does not allow one to simply calculate drive time and go, but one must also add hours to allow for the all-too-frequent accidents and road work that snarl traffic and delay thousands of unfortunate commuters. At least Kaiser has done a great deal to ease the troubles of those who live far away from their Linacs in the belly of the beast. They provide shuttle service for those who can go get irradiated and return home daily, and for those who need it, even some pleasant apartments in case the travel proves to be too much, on top of the ravages of chemo and radiation.

If I am able to do so, I will use the shuttle for 32 of my 35 days of radiation, but 3 of those days must include 6 hours of chemotherapy by in IV (IntraVenous Infusion) immediately before the Radiation Therapy. As Murphy’s Law warned us, the first day of radiation must also be the first day of chemo, and a long, tedious, complex ordeal. Though they have made laudable efforts to ease the frenzy, it is tremendously stressful for almost every patient, and that proved eminently true for me – and by extension, my amazingly patient and flexible wife, Charlotte. She has secured FMLA (Family and Medical Leave Act) time off for the chemo days, but could not take me to Sunset the day before, in time to meet the apartment manager and get keys, so I rode the shuttle down at noon.

Waiting for the shuttle with Jim, another radiation lover:

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Seven of us piled into a stretch van, and bounced down to Sunset. The trip was not bad, though we ran out of topics for conversation within the first half hour, and each retreated to our own thoughts. I imagine I will be getting a lot of writing done, and maybe some napping too, during the approximately 90 hours I will be shuttling in the next seven weeks. I am hoping that they have this thing ticking along like the well-oiled, finely-tuned system it appears to be.

Once at the Lair of the Linacs on Sunset, my fellow pilgrims and I went down to the basement to get nuked, but afterward, I caught another shuttle up the street to the apartments.

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The manager showed me around, gave me a rapid and comprehensive talk about parking, trash disposal, etc, and sped off to other duties, leaving me alone in the silence of the apartment. I surveyed the place which I hope not to need more than once or twice more. My situation and prospects remained nebulous, though I read all the handouts and took notes. I was numb, grasping for clarity and surety that eluded me. The apartment was nicer than my own, except that it was NOT my own, and I was not going to make it my own.

Charlotte joined me later in the evening, and we endured the unfamiliar surroundings and woke unrested, to face a very LONG and harrowing day.

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