Quirk and Circumstances...

In Sickness and in ...

Life & Death | July 17, 2011

It’s after two Cosmos or to be more accurate a double served in a thin plastic cup for poolside. This is not a vacation moment this is the aftermath of a week of hospital visits and a stem cell transplant with a dysfunctional family. As dysfunctional family is redundant I hope the editor will address that at some later point. I am 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. They are not discriminate; they rip on any who get close. Sprawled near the pool/bar door they are not a deterrent. Boys like these rarely are a problem. Even their bark is hollow and that is without a flash of leg from the opponent, then I can do no wrong. Tonight in leaving the hospital I finished most of my exit, I was going to say visit but exit seems closer to how I feel, exit stage right. In thinking about the week here and that tiny dark hospital room I am overwhelmed with how crowded it was, not just because it was filled with my mother and sisters. 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 here was misidentified. There is a past of hard feelings, betrayals and fresh ones too to be honest. This ground is ripe for war but that may not be where this particular flavor of anger comes from I think. 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.

Amy and I stumbled across a documentary on Rasputin while it was just the two of us in her dark closet of a room in the bin. Which is what she calls the hospital as she should, 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, driver’s license photo you have ever taken. He 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, then whoa crazy fucker (Rasputin) or as I think those closest to him called him Puty pronounced pewty), then normal folks again. You know there is always a family member blinking and ruining those precious family photos. Well you can bet Putys folks just prayed for a blink to get a usable photo for a Christmas card. Needless to say we were howling by each piece of information and photos presented to us and then building our own documentary. A section of our documentary we worked hard on was what 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. Amy tossed out MTV Vejay, I said VH1 no he couldn’t do that but MTV, MTV2 oh yea he’d be spot on. She conceded. We took our subject matter to great heights with our twisted wit and had 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 ear shot.

That night poolside with cold watery drink in hand I wanted my life back, not hers, Amy’s, it’s too hard. I stumbled 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 feel 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 this calls for, that things can bounce off. I believe human frailty is inconvenient at times like this. I hate that. I now have been home for less than 24hrs and I feel like I am ill, last night I took my temperature at least 3-4 times. It is like a low grade fever, I want to type this but am having more trouble typing than ever in my life. It’s like that nothing here belongs to me, not my hands, my head or heart. I don’t want to be there but I don’t know where to be anywhere right now. It’s like an emotional hangover. I get them like this after spending time with the boy; those are due to another whole spectrum of emotion. After those encounters the bottom drops out at the airport and I am bereft for weeks. It is like that type impact but different, physical yes but in a different way. No anvil on my chest like with him more of a whole body dragging, like something is sucking the life out of me. The slow drain of faith? Faith that goodness will win, the best will happen, that all will be well? Our reality is we pray for that, but have no stake to that claim. Yea I know a lot of really great dead people to pray to in times like these but fate will do what it will do. That is all there is, you then deal with the fallout when it comes, if you have lived and remained sane for the ride.

All I gave were stems cells not bone marrow, kidney, lung, all of which I would have gladly given and had offered up to the cancer teams for her use. I offered them all 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 this stringing words together and so many, many things. I am not opting out. I know my strengths in my work and what my purpose is. I know I am nowhere near done with them. She however; 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 think. Back at the pool that night there is a girl and a boy in the water. I can hear them in front of me splashing. The setting sun was in my eyes so sound leads me to where I go. They are of the age of men and woman but I don’t believe people really progress much past junior high so for me it is all boys and girls. I think folks polish up and PC themselves but in reality we are all about 13 or 14 and are playing at adults rather than being genuine. Maybe because someone a long time ago told us that who we are is not enough so out comes the pretenses and adulthood is born. I digress, which I am apt to do when emotion is involved. So the girl in the pool has Amy’s voice that is the point I wanted to get back to. As I sat there and sipped it was unsettling as 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, 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 it 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 turn 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 that list is what will be enough. So there I sip and listen 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 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 lay in bed and be very still. Which 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. 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 hopefully lower down the arm on this side to give you some flexibility in eating and scratching your nose. Overall warning on 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 the morning of no need to complicate matters and awkward introductions. So you have limited movement on one arm, the other arm none, both are propped on pillows and skewered. Then you just hang out. There I am after they put my first needle in, the fixed point steel one in my left arm they start preparing for the IV flexible type rig. They prepare me with the prerequisite ready or not here we come to jab ya and they start digging around in my arm. Yeow, then I hear them muttering. Me being smarter than the average bag of saline think uh oh, I look down and see two small pinched faces studying my arm and a million miles of tubing. I start to focus on the exact mutter

“I am still am not getting any”

“Let me see “

They start prodding tubing, my arm, and needle bases to no avail frowning all the while.


“Nothing still, I think we blew the vein”

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 way not good. 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 tells 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 happens 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 follows as my eye grow wider.

“Great ok then, can you get me my purse and dig out another oxycodone.”

I know it will be a long day and they have hurt me inside the first 10 minutes so why hurt when there are pharmaceuticals to the rescue. I then plan on checking out just a little and taking the edge off. Why the fuck not, I am sitting in a closet with machines all around me with people who cannot be responsible with choosing their words, much less my veins carefully. Why fret over something I have no control over, time to sit back and think of Vegas. Something like that can take me down a notch and make smile through this whole debacle. They get me stuck easier and better the next time and I nap the rest of the day as best I can. As long as they get those lifesaving bastards out of me and into a bag for Amy I don’t give a rat’s ass if they come for it with a rusty knife. God help them though, if they spill a blessed drop.

What took me 8 hours in the damn bed she sucked dry in 45 minutes; it was a frothy bag of strawberry colada. I can only hope her end of recovery goes as easy as that 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, for me maybe 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 crazy fucking 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 in there when it is out of ear shot, to laugh.

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About Kyra Freeburg

I am a former Readiness Engineer, Project/Program Manager, Sign Master, Special Investigator and current School Counselor and Life Coach.
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