It’s after two Cosmos, or to be more accurate a double served in a thin plastic cup for poolside, that I could start to breathe. This was not a vacation moment. This was the aftermath of a week of hospital visits and a stem cell transplant with a dysfunctional family. I was by the pool in my posh, past-its-heyday hotel with a rowdy bunch of over the hill potbellied sweaty guys ripping on each other across the way from where I sat and sipped. They did not discriminate; they ripped on any who got close. Sprawled near the pool/bar door they were not a deterrent. Boys like those rarely are a problem. Even their bark was hollow and that was without a flash of leg from the opponent. I could do no wrong.
In leaving the hospital I finished most of my exit, I was going to say visit but exit seems closer to how I felt: exit stage right. In thinking about the week in Florida and the tiny dark hospital room I was overwhelmed with how crowded it was, not just because it was filled with my mother and sisters, but rather because it was filled with our fear, boredom, humor and loads of anger. The last in that list was not a directed anger, though at times a verbal missal was readied. There were some small sarcastic sniping but the reason for fire, I believe, was misidentified. True, there is a past of hard feelings, betrayals and fresh ones too, to be honest. The ground is ripe for war but that may not be where this particular flavor of anger came from. It could be as simple as we are angry Amy is sick. We are angry at the capriciousness of this disease and it could be our children, partners or us in that bed. We are angry that someone good, kind, and quietly brilliant is in pain and there is nothing we can do.
Earlier that day Amy and I had stumbled across a documentary on Rasputin while it was just the two of us in her dark closet of a room in the bin. Bin is what she calls the hospital; she has more than earned the right to call it whatever she chooses and then hang up. Rasputin was a man of many talents, taking a good picture was not one of them. In every blessed photo that man took he looked like a crazy fucker, no other way to describe it. If you have not had the disturbing experience of coming across a photo or better yet a documentary by all means do. If nothing else it will make you feel good about every school picture and driver’s license photo you have ever taken.
Rasputin is a fascinating character in a car crash kind of way. We were stunned at first at the pure dichotomy in the pictures of the Royals all lined up proper and, well, normal looking, then whoa crazy fucker, or Puty (pronounced pewty) as we thought those closest to him might have called him behind his back, then normal folks again. You know there is always a family member blinking and ruining precious family photos. Well you can bet Puty’s folks just prayed for a blink to get a usable photo for a Christmas card. Needless to say we were howling at each piece of information and photo presented during the documentary and then building our own documentary. Our documentary included the jobs Rasputin would not be well suited for. The first on the list was of course, night nurse, and then came elementary school teacher, though we thought as a high school teacher he’d be great. We took our subject matter to great heights with our twisted wit and carved out a little time between the ugly to laugh hard. I only hope Puty’s family did the same, at least when he was out of earshot.
That night poolside with cold watery drink in hand I wanted my life back, not Amy’s, Amy’s is too hard. I was stumbling between extreme emotional states. Getting flipped at warp speed leaves me stupid with emotional muck, ineffectual in everything and never knowing what sets me off. I felt like the ball in the Dukes of Hazard Pinball machine with a pro at the flippers. I am not made of the type of metal that watching someone you love suffer and being able to bounce back calls for. I believe human frailty is inconvenient at times like this. I hate that.
I have been home for less than 24 hours and I feel like I am ill. Last night I took my temperature at least three or four times. I feel like I have a low grade fever. I want to write this but am having more trouble typing than ever in my life. It’s like nothing here belongs to me, not my hands, my head or my heart. I don’t want to be there but I don’t know where to be right now. It’s like an emotional hangover. It is like my whole body dragging, like something is sucking the life out of me. The slow drain of faith? Faith that goodness will win, that the best will happen, that all will be well? My reality is I pray for that, but have no stake to that claim.
All I gave were stems cells: not bone marrow, kidney, or lung, all of which I had offered up to the cancer teams for her use and would have gladly given. I offered everything because stem cells seemed not enough to save her life. Not enough to make a difference at least to me, the donor. They could have taken so much more; they could have taken most anything because she is the one. The one with the gift for stringing words together, making me laugh until it my stomach hurt, even making my mother seem sane. She is further up that metaphysical food chain if you will. She is also nice, very nice, me, not too much. I can be nice; I am just not by nature nice. I have to think that nice is a quality to preserve on this little blue-green planet.
Back at the pool that night there was a girl and a boy in the water. I could hear them in front of me splashing. The setting sun was in my eyes so sound led me to where my thoughts went. They were of the age of men and woman but I don’t believe people really progress much past junior high. The girl in the pool had Amy’s voice that is the point I wanted to get back to. As I sat there and sipped it was unsettling. I had just left her in the cancer/chemo/ get-the-light-sucked-out-of-you ward at the bin. I thought of parallel universes and what was real and what were things that I was sure of, things I knew to be true.
It is easier to look at the things I know to be true than not. I know I know about what matters in life: family and good friends, the kind of people who when you come home from a trip like this leave you chocolate covered strawberries and champagne in your refrigerator. I know it is important to try hard at being honest with myself and with my intent. With my actions my intent is to do no harm, it’s good to help, but rule one is Do No Harm; To honor my family and friends who can respect the wordlessness of me in the moment and are willing to celebrate my return, even though they don’t understand the reasons for my space. Then I turned to a much bigger palette of what I am not sure of, especially in this instance of stem cells and wellness. The first thing on my list is what will be enough. So there I sat sipping and listening to Amy’s voice play Marco Polo in the pool the irony not totally lost by my setting sun sightlessness and Cosmo soother.
Looking down while typing this I see the results of a blown vein which is a big ugly black/blue bruise and a small purpley spider like vein traceable through my pale thin skin like a mountain road from the air. When you give stem cells it is not a difficult thing: you lie in bed and be very still. Stillness can be hard for many folks, me naw, I’m good with the relaxing thing or being still and thinking. I live in my head so I can be most anywhere at any given time. On one arm they have a fixed steel needle which is where they take your output to spin in a spectra type machine where they traffic out your fat white blood cells for the patient and then in the other arm a more flexible needle stuck in to put the now stripped of the goodness blood back in you. You are stuck with the needle hopefully lower down the arm on the input side to give you some flexibility in eating and scratching your nose.
Overall warning for this activity is that it is a bedpan type of event with the no moving rule. You can bet I went light on the liquids that morning; no need to complicate matters with awkward introductions. You have limited movement on the input arm, the output arm none, both are propped on pillows and skewered. You just hang out. There I was after they put my first needle in, the fixed point steel one in my left arm, when they start preparing for the IV flexible type rig. They prepared me with the prerequisite ready or not here we come to jab ya and then they started to dig around in my arm. Yeow! I heard them muttering. Me being smarter than the average bag of saline I think, “uh oh.” I looked down and saw two small pinched faces studying my arm and a million miles of tubing. I started to focus on the exact mutter.
“I am still not getting any,” said the first pinched face.
“Let me see,” the more wrinkled pinched face said.
They started to prod tubing, my arm, and needle base to no avail, frowning all the while.
“Nothing still, I think we blew the vein,” I heard in an exasperated voice.
I have never been driving when a tire blew, but I have been in the car. I remember skidding around a little on the road; there were some white knuckle action, and swearing. Once pulled over I could see either a tire that had a jagged hole or had turned into a deflated used rubber. I was somewhat alarmed at this use of language in terms of my sub dermal blood-carrying path. In questioning my team they answered as they pulled out the needle and IV set up from my now throbbing arm.
“Ah it probably isn’t a good choice of words blown vein for what happens,” the point woman of the skewer team told me.
“What exactly does happen, are we talking tire mode?” I asked only moderately alarmed as the first pain killer oxycodone had kicked in a bit.
The point woman for the skewering team continued with confidence. “Well what happened is the vein we choose looked like a winner but can’t handle the volume, and uh blows. It’s not as bad as it sounds,” is what quickly followed as my eyes grew wider.
“Great ok then, can you get me my purse and dig out another oxycodone?” Not that I had a Judy Garland thing going on, the doctor had given me the oxy to mitigate the pain of the drugs they’d given me to grow extra stem cells in the days leading up to the procedure. Hey I didn’t even have a martini to toss it back with or anything. Though that would have been an excellent touch.
Lying there I knew it would be a long day and they’d hurt me inside the first 10 minutes so why hurt when there are pharmaceuticals to the rescue? I then planned on checking out just a little and taking the edge off. Why the hell not, I was sitting in a closet with machines all around me with people who could not be responsible with choosing their words, much less my veins carefully. They got me stuck easier and better the next time and I napped the rest of the day as best I could. As long as they got those lifesaving bastards out of me and into a bag for Amy I didn’t give a rat’s ass if they came for it with a rusty knife. God help them though, if they spilled a blessed drop.
What took me 8 hours in the damn bed to pump out, she sucked dry in 45 minutes; it looked like a frothy bag of strawberry colada. I can only hope her end of the recovery goes as easily, but I know that is fiction even as I write it. Will that frothy bag of goodness be enough for a cure? I don’t know. I know I brought what I could to the table. Rasputin, even as a crazy fucker brought game; at least he had the goods. So ugly, crazy or not, people could respect that. That day in Amy’s room watching the documentary on Puty our pseudo-fact filled rants were breathless, and the banter filled with peals of laughter. It was my best time ever with her during that week, maybe even one of our best moments ever. There in that dark, cramped god-awful room in the bin trying to make each other laugh at the ugly. It was like those weird pictures of the Royals with Rasputin: you have normal, normal, whoa crazy fucker, then normal. That is kind of what cancer does, it drops a crazy fucking ugly in the middle of your normal and you just have to find the small spaces when it is out of earshot, to laugh.
i have read this piece many times and always love it. Today in reading it however, there was a freshness to it that was somewhat of a surprise. Perhaps because of the date.
Thoughts of Amy today, and all our happy memories with her.