Epic day

Here is Day 21 (Wednesday) photo, things are looking rattier. Note the look of quiet planning, the t-shirt askance just like Chief Broom, the wry smile. I am pondering whether I'll blow my PICC line throwing a dialysis unit through the window and making my escape. Tonight.


Thursday morning - Woke up at 3:45 and had to pee, so I went into the bathroom and started the urinal they think they are measuring my output with. Of course I have to guesstimate the 10 pees I took in the woods, bushes, and bathrooms of Stanford for them, oh about 3000 ml from the still-fearful-of-red-death bladder. So I am standing there in my undies peeing into the urinal when it dawns on me that I am getting a shower on my legs and feet, as the thing is cracked and leaking all over me and the floor. Sheesh. I clean myself up, and get maintenance to clean the rest of the mess.

I hope I didn't disturb Brian in the other bed. I get a coffee, my blood drawn for testing, grab my backpack and head to the waiting room, where I type this. And that Brian guy, he was sharing the double next door, but his ex-roomie is going downhill, neutropenic and needs the single room, and I have the only one, so we swapped rooms and that is fine if they need it, and I hope I haven't bothered Brian with a urine-soaked dance party. Which by the way, you can purchase here http://nerdapproved.com/audio/toilet-tunes-a-urine-soaked-dance-party/.

There are days that just drag by, and then there are days that you struggle to describe in a word - epic, fantastic, emotional, painful, joyful, searing, long. So let me tell you about what we hope was the penultimate day, the last day of wandering aimlessly, before today's final chemo and a bone marrow biopsy, and afternoon trip home. A day early because they know I will be fine with vincristine and PEG and they do not need to see the biopsy results for me to leave Friday as planned. And because I have mustered every ounce of politicking with nurses and doctors, goodwill, karma, comedy, attittude, healthiness, gladhanding, gifting, overpowering logic, oddsmaking, pleading, backroom dealmaking, bribery, extortion, shakedown ID theft, and almost downright demanding that now that I have lost the Zen palace I created, the room that put the fun in feng shui, I should go home a day early.


Wednesday started well; I woke at 5, a good night sleep. Dana was dozing peacefully, so I got a coffee and the nurse to draw my blood, ate a yogurt, then grabbed my book and camera and headed out. I found a nice reading spot next to a brass fountain in a little bamboo garden, and read 'Bookseller of Kabul' for a while. I strolled out to the duck fountains, where a maintenance guy was cleaning the pond of bottom duck scum. I got the whole scoop from him on the floating alligator head (yes, meant to scare away the ducks, not working) and the politics of duck control and animal lovers vs. brown fountain water. When I returned at 7, Dana was up.





Breakfast soon arrived, and I had ordered everything. Bacon, scrambled eggs, potatoes, and cinnamon blueberry pancakes for starters, a blueberry scone, some oatmeal, an apple juice and a tea. You'd think I was a lumberjack. All the usual for later - bagel, cream cheese, yogurt and a gatorade. The hand cramping is always lingering, threatening, so if I drop the phone while I am talking to you, it's cramps and I need a gatorade and to stop using that hand. I eat, and eat, then eat.





My head is really getting itchy, and I find myself pulling out chunks of hair, which makes it even itchier. Dana and I decide we don't want to take the hair removal mess home, so out come the buzzers. Get your eyebrow/lowbrow eyebrows ready. Check the video, I hope it works.







And here is the net result:




Do-Rag, KMart, $1.99. One badass mofo on your side, priceless.

I do have a leukemia injury, and I was pretty hesitant to report it to my nurse. By noon on Monday my foot started hurting, and it was because I had this blister on my #4 toe. I was wearing the last pair of socks and they weren't good, and I did like 15,000 paces on the pedometer by noon, so I had to go back and self-doctor at noon. I didn't want to report this injury because, for one, I was afraid to be curtailed or worse sent to X-Ray or put on an antibiotic IV drip, and second, I was busted. So I cleaned it and put a bandage around it and walked all afternoon. That night I owned up to the nurse, who said to clean it and put a bandage around it, and by the way, how did I get a blister like that, how much was I walking, and I blamed the socks, threw them right under the bus.

Picture of blister deleted at Dana's request. She said nobody wanted to see my picture of a blister.

Of course that blister goes in the Fiore report, so when Dr. Gala comes in Tuesday morning for Dr. team rounds pre-check check, he asks to see the blister, asks the same questions, gets the same stories, grins, ha ha, clean it and put a bandage on it, no need for antibiotics.

Now I also ask him to check this thing I discovered a couple mornings earlier, this alien in my gut. When they shaved my belly for the gallbladder surgery, they left an ugly mess, 2/3rds of the lower half shaved, asymmetrical, and it is not growing back very fast. I used to work the abs a lot, about 25 years ago I think, but all the years riding a desk combined with the steroid swell and massive eating has left an ugly mess. So I have been pondering on that when I have to use a mirror, and thought I might try to get back some core tone with some crunches thrown into the daily yoga/exercise.

I am doing crunches and I mistakenly look at my stomach, and instead of a six-pack I have a large bologna from a Spanish bar stuffed from about my navel to my sternum, like the alien is in there forming up and getting ready to charge out. Criminy! What is that? Every crunch, up it pops, down it goes, the anti-muscle. I touch it, and it is soft, like an air bladder or a wineskin.

I ask Dr. Gala about this, and he says show me, and when I do he says it is either some type of hernia or restis somethingorother, meaning your stomach is so weak that that sausage-looking tube pops up when you do a crunch. He chuckles. Of course he is about 128 pounds of maybe Indian health, all wire and brains. We'll keep an eye on it, and try to eat that old sausage slowly; it has been hanging in a tapateria in Bilbao, next to the leg of jamon serrano, for twenty years, and it won't go fast. No pictures please.

Roger Robbins calls, and he is in the hood, so let's go, he has a day here from Florida. He comes over, the Dr. team rounds check-check team shows up and checks me, I am da man AGAIN, who can stop me, I am the get-out-da-wayin', backboard swayin', game-delaying chocolate thunder. I am Darryl Dawkins? No, wait, I am just DA MAN.





Roger, Dana and I go out and stroll. We visit a lot of the campus, the church, the tower, Boo-Qwilla, and we have a great visit. One thing about being here is many friends that are scattered come to this area for business on a regular basis, so we can catch up, and it is great to hear how the Robbins family is doing.
Dana and me in the Hoover Tower.


I have on some very discreet superhero pants, and look like a guido with a bad understanding of disco. Click to closeup, Ma.

OK, flash update, it is 10:30, the doctor team just left after telling me I was leaving today! Bone marrow biopsy at 11:30, chemo at 12:30, road at 1:30. And they are not tapering me off the prednisone, instead I crash (meaning Dana is driving and I am sleeping) in the Volvo on the way home. No prednisone this morning, it is day 22, the 21 days of screaming streaming are done.

OK, back to yesterday's walk. We went to lunch at this nice little Mexican bistro, very close by in Beckman, big burritos. There were no open tables so we sat with two guys, who at first seemed reticent (superhero pants reaction) to talk, but then one man started talking about how he had just finished a one-man sailing race to Hawaii, 17 days. He described this great adventure, and since I have always wanted to sail, he had my attention. Dana was watching me and getting nervous, something to do with the ten-year commitment not to mention the money. She may be right.

As we are walking back to the hospital, one of my first doctor team doctors (I am on team 2 now) comes walking down the path, sees the superhero pants, and says 'John, how are you?', and I am trying to hide, looking totally busted. She was fine with it, and knows I can take a hike no problem. It was funny to be finally caught out of bounds though.

Roger left and Dana and I had to scramble to get to a writing class that was going from 2-5 at Stanford Cancer Center. We get there, and this class is led by Sharon Bray of Wellspring Writers and it is 15 women and me. Sharon directs us in some writing exercises. The first was that cancer is an entitiy facing you, and it speaks to you, and then you speak to it. The next concept was writing autobiographically by writing short pieces on what you remember, and what you forget, and in another exercise you could either write a 5 paragraph autobiography, or write slices of your life in 6 word sentences. Now I have to tell you this all sounds simple, but there was more pain and suffering and misery and hope and sobbing, and 15 women pouring out their stories and trying to make me cry. And there I am dredging up all my fears and emotions, jangled out on steroids, hearing about lost loves and hopes, wracked bodies, betrayal, shattered lives, up close and personal. Scotts tissue is rich on cancer. These were 3 of the toughest hours I have been through, maybe ever. The only 6 word slice I will share now is 'Never should haved smoked that cigarette.'

Feeling wrung out, Dana and I head back to F Ground. We get in the Zen palace, and a nurse that I am not very familiar with comes in and says 'You have to move.' It turns out the patient in the double next door is getting neutropenic and needs the single room. Now I have been totally lucky to have kept this room while not really needing a single for health reasons. I know that some nurses have argued to keep me in the single, pointing out that I utilize the space to create a healing and active environment, and that has helped. I am glad for that luck, but at that moment they were telling me to move I was feeling pretty put out.

I sucked it up, we packed up the Zen room a couple of days early, and I shared a double room with Brian last night, no problem. Dana found a bad hotel room nearby, and I am sitting here waiting for my chemo and now a 1:30 bone marrow biopsy. We should be in SLO by 7 pm.



The view from the Zen room F030A