Narcolepsy

It’s Sunday and I am half watching Tiger and Phil duke it out on the golf course, good stuff and certainly more worthy of our attention than Darfur. The chemo from Friday has settled into me and made me very lethargic, narcoleptic even. I woke up at 5:30 today, read the paper and knocked around, and was back asleep from 9:00-11:00. I think it must be the lack of steroids as much as the chemo inputs; the last dose of prednisone was Thursday. Last night I tried to watch tv from 6:00pm on, and I don’t think I lasted more than twenty minutes without a nap. I gave up at 10:30 and went to bed. Not like me to sleep much, but then I haven’t been on chemo that many times in the past. The gas bomb in my gut is kind of annoying, too.




















Trip to Stanford
On Friday, we left SLO (so insignificant I had to add it to the map, white block!) at 6:20am for Stanford (red star on map). An uneventful ride, traffic wasn’t too bad, and we arrived at 9:30, just enough time for a coffee and bite before the 10am appointment. See the map. We go into the coffee shop at the Stanford Cancer Center, and a girl comes in right behind me, and tells the girl behind the counter how horrible she feels, she has this terrible cold, probably the flu. She is on her way to work, and I think what an idiot, she comes in this place where they service all these susceptible people, and she doesn’t put on the paper mask let alone stay home. I should have said something, but I didn’t.

We go check into the Infusion Treatment Area (ITA), and are quickly brought into the back, where there are a number of rooms open to a central hallway. These are where people are given chemo and blood, and the nurse is about to put us in the most central room but I ask if there isn’t one with a window. What the heck, we are going to be here for maybe 5 hours. She gives us the end unit, much more private.

Nurse Linda (all ITA nurses are designated ‘Linda‘, as it turns out) comes in and goes over the day’s schedule, which is basically a blood test to see if hemoglobin is needed, steroids before Elspar to head off an allergic reaction, Vincristine and Elspar chemos, blood if needed. It turns out Dr. Majeti specifically didn’t order blood to correct the low hemoglobin count on Wednesday because he thought hemoglobin would come back on it’s own. He is a smart guy because that is exactly what has happened, meaning I am making red blood cells and have turned the corner on that too. Still low at 8.4, but workable. It means I will be light-headed, a cheap drunk, but I won’t have to sit here an extra four hours getting 2 units of blood.

The Elspar has given me a bigger rash each time they have given it to me, every 3 days, and Wednesday before I left nurses, doctors, pharmacists and students came in to see the rash. They measured it and photographed it, poked it and talked about it in hushed tones, so it wouldn’t hear. On Wednesday the rash was like the whole bottom and triceps area of my right arm, bright red and burning. Now it has faded a little but swollen more, and they are very interested again. So in comes the nurses and pharmacists to figure out where they are going to give me today’s shot.

They say they are only seeing this in the last 6 months, that they have to call the people that make Elspar and see what has changed in the process. I love that about Stanford, they are so intimate in all phases of the chemo process. At the same time I can picture the new guy working at the Elspar facility, flicking his cigarette ash into the batch, looking like one of the cooks at the Dutch Inn. They ask me where I think they could give me this shot, knowing that I will probably get this 10”x10” burn-like rash from it. I say, not the stomach, not the ass I have to drive and sit, how about the thigh. No, the thigh is out, how about the stomach. I hate it when they ask you but already know the answer. They give me the shot in the right side of the stomach, and now I have this big burning rash that hurts when my fat rolls roll over each other. Fortunately the gas bloat from the chemo has me expanded like a basketball, so I have no rolls, and it’s not too bad.

We get out of Stanford at 2:00, go over to F Ground to deliver a card and a modem to the 25 year old that will be my guinea pig for laptop library. The poor guy, I gave him an old Toshiba with Windows 95! If that works for email, anything will. It feels pretty odd walking up to F Ground without the HEPA. Dana and I are back on the road by 2:30, perfect timing for beating the traffic. Dana drives the first half, as I am totally wired and narcoleptic all at once, jazzed on all the steroids and slammed by all the benadryl and chemo. I am literally jabbering one minute and snoring the next, it is bizarre. An uneventful ride home. We stop in Salinas at Outback Steakhouse for a burger; I get mine well done, what a shame. I am still carrying neutropenic fears, even though my WBCs are at 3.6, almost in the normal range.

Yesterday was a regular old mundane day, except I have this tired thing going on. Went to Mike’s basketball game, always exciting. Took John out for some driver’s training, license by May, won’t that be liberating (for me).

Tough Guys
I wanted to explain why some people got WBCs named after them, and realize there are a few I should have included. Butch Cabral was the toughest guy in high school, really kind of psycho, indiscriminate in the beatings he laid on people. John Nelson was the other toughest guy in high school, much more discriminate with his beatings, and much tougher because he was a minority in a white city. He survived many years of very bad times and resurfaced as a survivor ten years ago. Mrs. Mullaney is a friend’s mom that was always on top of what was going on with a lot of kids. You couldn’t sneak anything past her. We would be in the kitchen plotting some illegal thing at 2:00 in the morning, and from behind some door Mrs. Mullaney’s voice would come, “I wouldn’t do that if I were you Fiore.” Always got me wide-eyed. It was like she never slept.

My mom went back to college and got her masters and became a teacher. She nursed twins when I was 2, my sister was 4 and my brother 5 and her mother was bed-ridden and dying. She always did whatever was required. Tough as nails. My sister Joanne was living the high life in Manhattan, but because she wanted to ride horses she joined the Central Park Mounted Corps or something like that, riding horses around and snagging muggers. When a guy tried to mug her she kicked the snot out of him, not noticing that he had sliced her with his straight edge razor. Don’t mess with Joanne. And Frank took on like half the Gardner family back in elementary. This was that family of Neanderthals that could kick anyone’s ass, and if one couldn’t do it there were 2, or 3, or 4, and each one bigger than the last. They decided they had to beat up my brother for some reason, but he told them he couldn’t fight in his St. Peter’s shirt, so they followed him home, he changed his shirt, told my mom he had to go fight these guys, went out and fought and got his shots in and that was that. And Frank wasn’t a fighter, he was a calm guy. He is a tough guy too for how he handles the physical crap life is handing him like arthritis and feet problems. Yanks up his whole life and moves from Maine to New Mexico, and thrives.

I should’ve thrown in a few more tough guys. Dana is a tough guy, for being able to go to a foreign country and just fitting right in, no anxiety. And for toughing out her Mom’s cancer. A couple of my friends out there that have dealt with depression and bipolar in family members are as tough as nails. You all know the extra tough people in your lives, and what makes them tough. Ontogeny recapitulates phylogeny, and those tough genes keep recycling.

Here is the first of the Lowbrow Eyebrow photos. Disconcerting. The color mismatch is too severe, I need gypsy moths, not tomato hornworms.



Here is a copy of the email I sent to cafeteria services, which they were thankful for:

Dear Sir or Madam,

I was a patient here at Stanford from 2/11 - 3/2, in room FG44, receiving treatment for leukemia. Let me start by saying when I arrived I weighed 170 pounds, 5’9”, 49 years old, surfer, golfer, in pretty good shape. I am leaving today, a week ahead of schedule.

When I arrived I assumed I would be getting sick and losing weight while on chemotherapy, so I ordered big meals from your menu. The food was quite good, and I gained eight pounds. I did not get sick on chemotherapy and I started walking the hospital corridors to maintain some strength and weight control. Still, I ate more than in the past because I wanted to be strong to fight this disease.

People love to complain about hospital food, but I found the food quite good. Bacon was good, eggs were good, oatmeal was good. I ordered enough food for breakfast at 8, leftovers at 9:30, lunch at 11:30, soup at 2:00, dinner at 5:00, soup at 8:00. I tried almost every lunch and dinner item you have, and everything was good. I almost always got everything I ordered, and always more than enough. I may be legendary for the day I experimented to see if I could order 2 of each meal; when they saw I only ordered 1 dinner, they added some rice.

In short, I left the hospital yesterday weighing one pound more than when I entered. I walked 4 miles a day or more while in the hospital, never got sick while on chemotherapy, and feel healthy as a horse. I attribute some of this to the good healthy food I was given while there. Congratulations on a job well done. Please share this letter with your staff.

John Fiore