Exploding patients

First the big news from the docs, which is essentially don’t ever forget you are human, you are stuck in this system, you aren’t going home Tuesday and we really can’t tell you when, your WBC is same as yesterday but everything is going great, we can only tell you the very day or maybe day before. The key count is not WBC anyway, it is this variant called neutrophil count, and that did go up but has more to go. If WBC is less than 1.0, it lowers neutrophil count because it is a multiplier in the formula; if it is 1.0 or higher it raises neutrophil count. Got it? My WBC is 0.8, so during yoga and walking today I told the bone marrow to make WBCs. It is written on the white board, Make More WBCs, Make More Platelets, Lose Hair. Things to do to go home.

OK. Lesson being don’t be a fool and set yourself up to be let down, which I kind of have. I also resolve to have some more talks with my bone marrow, let it know how important it is that it GET TO WORK. The trick is to remind myself I am way ahead of schedule, things are going great and this too will pass. As it shall. And lose the hair here, because what a mess it is making! Won’t stick to me, but damn if I can get it off my shirt. And is it those annoying tufty hairs on the top of my head, no, it’s the thick stuff on the side covering the giant moles. I don’t think it’s going to be selective for long though.

Hair Loss
It occurred to me today that I can start offering a new service for chemo patients that will undergo hair loss. It will be called Your Hair Was Warning You But Now It Won‘t. I have essentially been preparing for this for years, and know that the single largest problem with hair loss is you lose the head’s early warning system. No AWACS = many head smacks. What I mean is, and you don’t know this if you have a lot of hair, hair gives you this sensory signal to duck, and it saves your bean a lot of damage.

I know this because I didn’t get the message many times. Every time I did the laundry in the 5’ basement in that little house in New Jersey I clocked myself. My son Mike once saw me do the most awesome tae kwon do kick to a shelf I was just finishing installing in his room. Not sure how I forgot the shelf was there, since I was in the act of putting it up, but I gashed the heck out of my forehead, all my Irish and Italian came charging up and I took the shelf back out with a high kick.

Most embarrassing of all was the time I was on the throne, doing the crossword, taking my time. I was finishing up and I bent over to pick up the newspaper, and as I stood I was too close to the wall and gashed my head open on the freaking light switch, I mean blood pouring out gashed open. Again. Happens like once a week, one way or another, if I don’t wear a hat. Bald people don’t wear hats for the look, they wear them for the protection, from the sun and from their own faulty Advanced Warning And Control System.

New Invention idea - make a hat that has small metal sensors sticking out a couple inches, say 50-100 sensors, to enhance the hat’s early warning capabilities.

Balding kids
I took a long stroll today with the father of a 25 year old Acute Myeloid Leukemia patient down the hall. I don’t want to say much about another patient, but I wonder how I would’ve taken news like this at different points in my life. He is getting over being stunned and has a good prognosis, but hasn’t engaged in the battle. It is kind of like knowing you are going to be in a bad fight sometime soon, but you aren’t sure how to prepare, so you lay about and ponder. So I took his Dad around, real nice guy not much older than me, and showed him all the places you can go, places for putting (golf) practice not as confining as your room (forgot to ask Dana for my putter), and all important for that age, good places for girl watching, not that I use them but in case anyone asked.

We went all over the place, and in Children’s Hospital ran into a number of kids balding or bald from chemo, and looking really ill. This always gets to me in retrospect, and it was bothering Frank too as he mentioned how tough that would be, to have a kid that sick. Almost every time I go through Children’s, and that’s at least twice a day, I hear someone praising God, and I see some heart wrenching scene of sadness. I know from the moment young John the Larger was born the fear began, the fear that some day I would have to bury a child, and you have to live with that fear until you die and the kid hasn’t.

It all seems so random. So do I fear dying? My understanding is that the beyond is going to be so fantastic as to allow me to perceive the universe and God at all moments, truly at one with the Universe, and how could it be any other way? God is everywhere, omniscient, resides within us. Energy can neither be created nor destroyed. So this means my energy lives on and God is in it and it is in God. Cool. Profound. The universe is so vast as to be truly incomprehensible. It can only be this way, so there is nothing to fear. Or, there is nothing beyond, when we die our perception is done, in which case there is nothing to fear. What I don’t like about dying is not finishing what I started, meaning my family, and that‘s not really fear it‘s regret. That would be a regret I would have as I visited the other sentient beings in parts of the universe human beings will never get to.

I just asked the nurse her opinion on the bald/head smacking relationship, and after hearing my logic she says I am just a klutz. It’s possible.

The White Hat Rides Again
I have a new nurse today, Sandy; I have had maybe fifteen different nurses. Let’s see who I can list:
Bettina - Croatia, Danarubicin chemo
Kathy from London
Al from the Philippines
Lauren from Ohio
Michelle - Premed RN, Kittery Maine
Kelly the traveler from Nova Scotia
Kelly the traveler from ?
Susie from Cork, Ireland
Esther from ?
Chonn from Philippines -PICC line
Rebekah the traveler from Wichita Kansas
Aracely from El Salvador - The White Hat Rides
Kamikila from Hawaii
Aidella from the Philippines
Marissa from the Philippines
Lily from Denmark
Mendy from the Philippines
Sandy from Arizona
Rosalee from the Philippines
Richmond from the Philippines
Jose from the Philippines

There has to be at least ten I am not listing. Some of them have taken care of me a lot, like Lauren, Lily, Michelle, Esther and Marissa, and some just one night. They work twelve hour shifts, have real tough jobs here in oncology and must suffer some serious burnout. Some times when I go get ice or coffee it smells like someone exploded, and that is through the HEPA mask. I peek into the other rooms outside the isolation ward (double rooms) and there are very sick people in them, almost all sleeping. Signs on the doors say ’Fall Precaution’, or the toxic symbol meaning they are on heavy chemo.

So Sandy comes in this morning, checks me out, gets my story then regrets asking, and says those dreaded words. Today we ride. Another white hat day. And, save me some pee too. I instantly protest, as it happens to be double meal day experiment.

Double Meal Day Experiment
First of all let me say I have never really been a food focused person, I eat to live. I have often said if I could have my sustenance in a pill that would be OK, Dana will back me up on this. Aging has changed that and I appreciate food more, but it is not my focus. Now, remember the photo of my menu from yesterday’s log? The menu where I wanted to see how much I could get away with ordering from the menu? Tomorrow I am calling down to the cafeteria to congratulate them on actually causing a patient to physically explode, I mean to actually burst in the chair. Because the combination of double meal experiment day and the Fear the White Hat Syndrome was nearly lethal.

Breakfast came. Scrambled eggs, bacon, 2 English muffins, jelly, oatmeal, cream of wheat, apple juice, cheese, a banana, ketchup, peanut butter, salsa and whole milk (for nurse station coffee). Thankfully they didn’t deliver the hard candy I asked for. I made 2 sandwiches with the muffins, eggs, bacon and cheese. I saved the banana, oatmeal and cream of wheat for 9sies. Now in comes Sandy and gives me the white hat news, and I know I better start walking it out and off. So Frank and I go but we don’t get back until 11:00, and now lunch will be here in a half hour, too late for 9sies. The white hat waits.

Check the menu pic - for lunch I get the soup, Italian pasta with meat sauce, make-your-tuna sandwich kit, green beans, 2 bags of potato chips, a dinner roll, margarine, cheese packet, strawberry ice cream, canned pears, iced tea and chocolate milk. They left out the fruit cocktail, mixed vegetables and chocolate chip cookie. Girl said it was the heaviest tray she had ever carried. It turns out they had to leave stuff off the tray because the tray weight exceeded the union’s 40 pound weight limit! I save the tuna kit and cheese for 2sies, and hoard the chips to avoid vending nightmares. I do yoga after lunch, and that isn’t easy because there is not much stretch in the frame, it’s pretty damn stretched already.

I actually cause a minor leak in my PICC line pumping the 8 lb. weights. I wasn’t pumping hard, but felt this slight twinge and sure enough had squeezed a little blood into the dressing. Sandy checks it out and says What the heck are you doing, no more weights with the left arm. Great. First I have tennis elbow for ten months in the left arm, and now a PICC line for two years. Imagine what my arms are going to look like by 2007? That’s Arnie on the right, Ernie on the left. Sandy willl change the dressing at 4:00, she has patients scheduled to explode and crawl the floor and run 104 fevers, do I mind? Heck no, I am going for a walk, the white hat waits.

Off I go, usual route plus I throw in an exterior circuit, nice day, 1 ½ hour walk, topped off by a Starbucks mocha. I am throwing everything I have at the white hat, because I sense the dilemma I am in with the convergence of double meal day experiment and white hat day. I end up back in the room, drinking the mocha and jumping up and down trying to aid gravity and nature. I say what the hell, and make a tuna and cheese sandwich, we are going to force the system or die trying. In the end, of course, Sandy gets what she wants - I left the message at the desk this time, Please tell Sandy there is a Mr. Brown in a white hat waiting for her in 44.

For dinner they actually sent everything I ordered, only 1 meal but they thought I must’ve forgot something so they threw in rice with my bread and baked potato, pot roast, broccoli, soup, gelatin, 2 more bags of chips, peaches, ice cream, brownie, herb tea, milk and chocolate milk. I am saving the soup, potato and roll for later, but I don’t know, the nurses often eat a baked potato for dinner, I may seek a volunteer. What a day.