I hate to repeat myself, but I'm struggling over how to NOT turn this into a rant against insurance and the health care industry. So before I get started on the AH phase (after hospital), I want to share something infuriating that happened last week. I had a PET scan scheduled for Friday, May 5, then a follow up with the oncologist to review the results on the 9th. Insurance received the request a good 2 weeks in advance, and yet did not start the authorization process until Thursday the 4th. Now this test, on my end, requires some preparation mostly in the food I eat or don't eat. For the 24 hour period before, no carbs, no sugars, no fruits, no milk, no alcohol, pretty much nothing but meat. Now don't get me wrong, I love meat but when I saw the dietary restrictions, I really wanted a big bowl of Cheerios with a sliced banana and chocolate chips.
At or around 4:40 PM on Thursday, as I was munching on a raw hot dog, the phone rang. It was the Cancer Center telling me the insurance authorization had not come through and they were going to need to reschedule the scan. I asked why and he said "don't worry - the person on the phone told me they are going to approve it, it just won't be in time." Does anybody else find this completely ridiculously inefficient (not to mention STOOOOOPID)? I found out this week when I called to reschedule it that the authorization had come in just 10 minutes before the scan would have occurred. The thing about PET scans is they have to inject you with some nuclear concoction an hour before the actual scan is done. They take you in a room where soft music is playing and the lights are dim, inject you with the plutonium or whatever it is, then you sit for an hour until they peek back in and see that "yes, the patient is now glowing. Move her carefully to the procedure room, mindful of not jostling her because she is, after all, armed and dangerously nuclear."
That's pretty much all I have to say about that. I've already hijacked half this post to tell the above story, and you know you can't make this crap up.
Back to the story; I was released from the hospital on August 11, 2016 a mere 4 days after I was admitted. I'm going to recap everything I remember about that week in the hospital. First, they served me a turkey and Swiss sandwich capable of surviving longer than a cock roach. Second, they removed the tumor in my head and served me more incredible food (anyone ever notice how the word "incredible" contains the word "inedible"?). Third, they played this game where every time I started to doze off, they'd burst into the room and yell "surprise!". One time they actually woke me up to see if I needed a sleep aid. I can see why that 4 day stay cost almost a quarter of a million dollars. I mean, they have to think of reasons to wake you up, and they have to hire world class chefs who have been featured in Conde Nast publications. Given all these extenuating circumstances, I'll stop complaining about the bills and the food; at least long enough to finish this post. After all, it's not a Motel Six. It should cost more. They even turn the light off for you.
The first post-hospital doctor appointment was with the radiation oncologist. That occurred on August the 15th, 2016 and outlined the plan for alleviating my back pain. Remember I'd been suffering from chronic back pain for nearly 2 years. I think when Dr. W told me she could get rid of that pain, for just an instant I didn't care that I'd been diagnosed with cancer; I only heard "I can relieve your pain". I knew that would help with my attitude and ability to fight the disease. I can tell you that if my back hurt now as bad as it did then, I don't think I would be here penning this blog. This is also the doctor who had the task of getting rid of some smaller lesions on the brain. From what I've read, most brain cancer originates from lung cancer; rarely does it start in the brain. But the brain is smart enough to go looking around your body to see what it can find and claim as its own. Damn brain. So I had either dozens or hundreds of tiny lesions in the brain that needed to be eliminated. This was a little difficult for me to wrap my head around (tee hee), because I was more concerned with the cancer in my lungs. Then I realized if they didn't treat the head first, there would be no reason to fix the back and lungs because I'd be vegging out somewhere unable to do much of anything (except veg out). So the plan of attack for the radiation phase of the treatment was to start treatments immediately that same week - 10 on my back and 12 on my head. They gave me anti seizure meds so that I would not seize again, suspended my driving privileges for 12 months (assuming I didn't seize during that period), and also prescribed some steroids and pain meds. I had been having some serious cognitive issues after I was released from the hospital, and it turned out they were supposed to prescribe a steroid to reduce the swelling in my brain. It was really weird not being able to figure out how the tooth paste and tooth brush worked together, simple things like that which I'd been doing my whole life. When I got in the truck the first time to go to the Cancer Center for an appointment, Connie had to come and buckle my seat belt for me because I just could not make it work. Man, if only I was actively involved in a software development project at that time. It would have been fun coming up with requirements for how my screwed up brain envisioned the software should work.
In preparation for the radiation treatments on my head, they had to make me a mask. They heat the
plastic and then form it around your face while it is relatively hot still because it needs to be a snug fit over my
face, and then they snap it to the radiation table. Sort of reminded me of the table in Dr.Frankenstein's lab ("that's Fraankensteen"). They first make the mask and do a simulation of the radiation so they can carefully plan out which part of the brain needs more or less treatment. If they zap healthy areas, or over/under dose any areas, the consequences are pretty dire. So the "mapping" session took a lot longer than an actual radiation treatment. I don't usually get claustrophobic, but being attached to the table with a hot plastic mask is not fun. You can't really tell from the picture, but the plastic is only pliable while it is hot and so you have to lay there while they are fanning your head with magazines to get the plastic to set firmly. Once they have the mask and the mapping done, they can proceed with the treatments. They do the mapping session prior to any actual radiation, because the radiation oncologist has to get the opinion of a physicist to ensure he doesn't notice any inaccurate calibration of the machine.
The spine doesn't require any masking, and they can do the multiple treatments in a session . I had a total of
ten treatments on my brain and twelve on my spine. They occurred on consecutive business days, so I completed my last treatment during the week of Labor Day. The Cancer Center makes a big deal over your final radiation treatment (and I think actually this is common among radiology treatment centers as I've seen pictures of ship's bells in a lot of my travels around the web). I rang the bell loudly, they took pictures and I received a certificate. Made me feel like a college graduate again (okay, that's maybe over the top). Anyway, I know that's a horrible picture of me, but it reminded me to tell you that the minute I saw a tiny clump of hair on my pillow, I made an appointment the next day for Laura to shave my head. I'm also about 45 pounds lighter now. Some hair is growing back but it is coming in curly. The only time I had curly hair in my life was during the "perm years". What was I thinking?
Results are not available instantaneously, because the radiation continues to cook your brain or spine for as long as 4 weeks; they are not quick at scheduling the after scan. They decided a 2 week break before starting any new treatments on the chemo side. Radiation makes you sick, your hair falls out at the radiation spots, and you sleep at least 16 hours out of the 24 in a day. You just feel awful and you have zero energy. I was naive and thought that I could probably work 20-30 hours a week. I quickly learned how sick I really was when I would commit to non-achievable deadlines and then feel like I was inadequate because I couldn't work. It was the strength of my Info Tech family that got me over that feeling. Everyone told me to not worry about it; and so I stopped worrying about it and I started to get better, at least from a mental perspective.
Next up, I'll start discussing the Chemo Period - which actually is still ongoing at the date of this writing.
Take care until next time.
Jennifer
