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jedipartner1967
28 November 2016 @ 08:23 am

Here's a little conversation I had this morning at the gym. I was getting dressed and I heard two familiar voices talking about Trump, Clinton and the recount of the votes. The one guy was being quite logical about it all while the other guy was not. I just couldn't resist myself, so I dropped in to participate and it went something like this...

Me: I couldn't help but overhear your conversation about the recounts.

Guy: Hilary is showing just how power-hungry she is by asking for for the recount!

Me: I'm not Clinton's biggest fan, but she just said that she would aid in the already in-progress recount, which she didn't call for, by supplying some people from her team.

Guy: Well, she just wants to win.

Me: I guess... but Trump really could just send in a couple people in from his team to assist in the process rather than going on Twitter and being a whinging idiot about it.

Guy: Well, Middle America voted for him and that's all that matters. He won that.

Me: Wait, so you're saying that the only votes that matter are the ones from Middle Americans? 'Cos... he still lost the popular vote.

Guy: Well, those are the most morally just people!

Me: Hmmmm... OK.

Guy: (muttering)I wish California would just fall in the ocean.

Me: Really? You think it's OK for a state that really contributes quite a lot to our national and world economy should just fall into the ocean?

Guy: We can relocate and rebuild those businesses elsewhere!

Me: I think if we had the ability to grow avocadoes and oranges in Oklahoma, we would've by now. (meanwhile, I have been looking through my phone to find a picture of my friend's adorable 4-year old daughter)

Guy: Those people are freaks!

Me: (I hold my phone up to him) So, you are totally OK if the little girl in this photo dies?

Guy: I didn't say that!

Me: You kinda did, man. You said that you wish California would fall into the ocean. If it did, it would take this lovable child-- who lives in San Francisco, which is a part of California.

Guy: That's not what I meant.

Me: That's what would happen, though. So, let's circle back to this "Middle America thing". You feel that Middle Americans are morally righteous and that you identify with that and you feel they identify with you?

Guy: Yeah.

Me: (nods) OK... so morally just people feel it's OK to wish death on other people and that it is easy to replace our industries and natural resources that could be lost in a major catastrophe?

Guy: Well... no. That's not what I said!

Me: Again, you pretty much did. So, let's recap--Clinton is power-hungry even though she didn't call for the recounts, Trump sits on the sidelines and tweets like a deranged idiot rather than contributing to the process, you're OK with people dying and throwing off our national economy and that only Middle American opinions count.

Guy: ( stunned silence)

Me: Well... that's about it. My work here is done. You guys have a great day!

Guy #2: (grinning broadly) You too man. You too!

I think the thing that did him in was the fact that I stayed calm the whole time and never became emotional. That's the way to take 'em down kids. That's the way.

 
 
Current Mood: Triumphant
 
 
jedipartner1967
18 November 2016 @ 06:00 pm

I left work today and it was a beautiful 72°. The sun was shining and most of the leaves had fallen from the trees. There was a sweet smell that filled the air-- the smell that leaves which have turned colour have when the sun shines on them. I was immediately transported back to the age of nine and roaming the fields behind Allen K's apartment over the Novelty, Ohio post office. The fields occupied a vast parcel of land that would eventually become the neighbourhoods of Belle Vernon Drive, the Fox Hills Drive extension and Fox Den Drive. There were ponds, hills and little gulleys where we would set up forts out of discarded pieces of wood and other appropriated building materials to which we were granted access. We would have adventures against unseen enemies (usually alien) and we would hide from the older kids who would occasionally ride their dirtbikes through the area.

It was there that I discovered milkweeds and touch-me-nots for the first time. I got close to hawks, geese, ducks, deer, rabbits and foxes and came to appreciate the simple beauty of these animals. I felt safe as I walked through these fields with the tall, dry grasses that gently brushed against my arms and left burrs on my trouser legs. I took in that smell of the turning leaves and wondered if anyone else noticed it or if it was just I who had taken a moment to drink it all in.

These days felt like they would last forever, but the autumn turned into winter, which eventually became the spring and summer. I faced another October and the cycle would start again and again until the earth movers came and started carving out the new roads the summer before Allen K. moved away. I wouldn't have the occasion to play in those fields again. Even though there were other fields, they just didn't seem as magical as this one.

The memory of the land and the adventures lives in my heart and every now and then, on days like today when the weather is just right, I remember... and I am young again.
 
 
Current Mood: Nostalgic
 
 
jedipartner1967
I spent most of the night putting all of this together, so I hope you will read it. Yes, it’s really long, but I am thinking this is my final word on this.

“THE CAT CAME BACK IN”: A CODA FOR THIS INTERESTING WEEK
We have a new president and we need to make sure that we cooperate with him to make sure all our needs are met. Similarly, we need to be a giant pain in the ass to the government in general because this whole “Republicans in all three branches” thing doesn’t work. It also doesn’t work if it’s all Democrats in those branches, just so you know. We also need to make sure to keep on all our elected officials to do the right thing and not be obstructionists when it comes to getting legislation passed. We should also not be doormats and let the Republicans get their way. That nonsense is why things don’t work. I am going to be a massive pain in the ass for the next four years because I do want change. I get that we all needed a big change (and don’t start on Obama—he did a pretty admirable job considering the giant mess that Bush left behind and the fact that the Republicans kept blocking things). I don’t necessarily think that we went about it the right way.

A little history…
I’ve never liked Donald Trump and I’ve never had any respect for him. I haven’t liked him for 35 years, so he needs to earn my respect. Why? He’s conducted himself without any dignity and he’s spent those years coming off as a bully, an idiot and an asshole. I’m not apologising for that ‘cos he really does. I’m pretty sure the guys I know who supported Trump wouldn’t appreciate it if I spoke of their wives or mothers using some of the pearls from Trump’s phrasebook. Maybe I should try as an experiment… or not.

Like I said, we have a new president. While I don’t think that we should completely worry about President Trump at this particular moment, we need to be concerned about the stuff that he brought in with him. Not into the government per se, but what he brought in during his campaign and is now starting to take hold after his election.

I’d like to equate it to this scenario:
The family cat got out and the kids were worried that something bad happened to him. Mom and dad waited and waited for the cat to come to the door so they could let him back in and all would be right in the world. Unfortunately, mom and dad got tired and maybe weren’t thinking their plan through 100%. They left the door open all night so when the cat came back to the house, it would come back in and didn’t run away again. Hurrah! The next morning kitty cat was back in the house and everyone was happy. They were happy until they realised that the open door let in a skunk, a couple raccoons, a bunch of leaves and maybe some pieces of garbage. We are so lucky that it didn’t let in a thief or a murderer! Sure, we got something we wanted, but inadvertently we also got a few things we didn’t want so much. I hope we didn’t want those things.

President Trump is a wait-and-see situation and I am willing to wait and see what happens. I can be OK with that. What I can’t be OK with is the fact that his tone and his language managed to tap into the worst of the worst in our society and gave them an implied call to arms. The reason we marginalised people are afraid of this presidency is because of hateful groups that intend to do them harm if given the opportunity. This isn’t just speculation, you see. On Twitter, former Ku Klux Klan leader David Duke was simultaneously orgasming and losing control of his bowels because of the Trump win—saying that it was time to take America back. I don’t think that’s a good sign. Do you? This is kind of scary if you are not white. Or heterosexual. I was treated to some really neat words from a woman I identified in a conversation as “white”, “straight”, “married”, “having a husband and children”. She was offended by this and then said that I was pervert, an abomination and that my marriage was a joke. I didn't think that the things I said about her were name-calling, but simply a statement of fact. So, thank you for illustrating my point so beautifully. Really, “thank you.”

Another thing that troubles me is that there are a great number of Trump supporters who are calling Trump non-supporters “whiners.” I seem to recall a lot of “whining” when Obama was elected in 2008. They are also telling them to shut up and respect him and help him do his job. It doesn’t appear that a lot of people did that for President Obama was in office. Maybe they already forgot. You really cannot have it one way, kids.

Since I already went with a cat analogy, I have a one last thing to add in a roundabout way: One of the most startling things that I encountered this week are the large number of females who have referred to Trump non-supporters as “pussies” and that they are sick of the “pussification” of America. These women, who say that they are strong, independent and intelligent are using a gender identifying part of their anatomy to say that something / someone is weak. Does that seem like an empowering choice of words? I’m not answering that for them, but I’m just drawing your attention to it and asking the question.

OK… I think that’s it.

Let’s all make sure the cat doesn’t get out again and the family works to get rid of all the refuse and undesirable critters out of the house so that we can all have a bit of peace and happiness. There is a reason for sadness and there is a reason for fear—do not dismiss these things or try to minimise them; they exist and we need to make sure we address this correctly and with grace and sensitivity.
 
 
Current Mood: contemplativecontemplative
Current Music: Star Wars Oxygen , Volume 36
 
 
jedipartner1967
15 August 2016 @ 07:52 pm

Kenny Baker (August 24, 1934~August 13, 2016)


I was sad to learn of actor Kenny Baker's passing the other day. He died just short of his 83rd birthday after having been ill for quite some time. For those of you who don't know who he is, Mr. Baker was the man who quite literally brought life to Artoo-Detoo (R2-D2) in the original Star Wars films from 1977-1983. He did a little work in the prequels, but it was his contribution to the original films that made a lasting impression on me and many others.

Though I never knew him personally, our paths would cross every now and again at various convention centres around the United States. He was always friendly and we would wave at each other and exchange hellos as we made our respective ways down the concourses. Though standing only 3'8" tall, he had a personality so big that you could see and feel it despite the fact that he was completely sealed up inside that metal suit. His gift allowed you to understand just what that little robot was feeling or thinking even though it never spoke a lick of English or any other Earthly language. Because of this, I was inspired to find my own big personality and to let it shine.

Mr. Baker also inspired me through the character of Artoo-Detoo. While I think most people would consider their heroes to be of the more human sort, I loved Artoo's "can do" spirit and his desire to use his abilities to help in any way that he could. He succeeded in many cases, but occasionally, despite his best efforts, he was unable to save the day or successfully complete his task. Still, he tried and he never gave up and did it cheerfully and with appropriate levity. Through the years, as I worked at a variety of jobs, I never felt that there was much I couldn't accomplish if I put my mind to it. There might be limits to what I could do, but I never would stop trying. I often picture a little Artoo in me as things get stressful at work and when the tasks start mounting. It's always best to keep my cool, do what I can to get as much done as I can and to not give up or get derailed.

Mr. Baker was more than just an actor to me; he set a standard for me because he was a lovely human being and he created a character that continues to inspire me to be my best every day. I am grateful for that. I'm grateful that he was.


Goodbye, dear man.

 
 
Current Location: Lakewood, OH 44107
Current Mood: contemplativecontemplative
 
 
jedipartner1967
30 May 2016 @ 03:44 pm


This weekend, Memorial Day weekend 2016, was a pretty big one for me. I finally submitted myself to the needle and got tattooed. It wasn't a particularly easy decision. The decision was almost 30 years in the making. I had dabbled with the idea of getting one about once every 2-3 years since 1990. There really hadn't been anything that I wanted so badly put on me for forever, so the idea kept passing.

Last year, as I was approaching my stem cell transplant, I started to get that urge again and this time I had something to say about my life; something that completely represented who I am and who I will continue to be until I am gone. Anyone with a head knows I identify more with being a Star Wars geek more than I identify with being a gay man. Along my cancer adventure, I kept joking about how my cloned cells were attempting to kill me the way the clone troopers turned on their Jedi generals as they executed the Emperor's Order 66. This cancer seemingly came out of nowhere and tried to do me in.

Once I was in remission, I felt like I had survived Order 66. I felt that was an appropriate thing to put on myself and so I have.

I regard it as something that sums up a life... my life. It's not an epitaph on a tombstone. No, it's nothing that final; it's more like a declaration that there is still more for me to do, but that this is where I am at this place and time. It's a reminder of the days when it was physically difficult for me to get out of bed, but I did. It also calls to mind the days where I braced myself to not collapse onto the floor because the mere act of going to the bathroom set in motion a series of severe pains that knocked the wind out of me and felt like someone was stabbing me in the shoulder blade and trying to twist it out of me. It brings back the images of the mornings where Lou had to dress me because I was incapable of dressing myself before I boldly left the house and off to work in the dead of winter-- and the nights where the act of laying in bed was painful and brought no comfort. Despite all of this, I still made it and I didn't die. It didn't break me; it only showed me that I was a lot stronger than people probably would've guessed... or that I might've guessed.

So there it is-- right there on my right shoulder: "I survived Order 66" in Aurebesh. I considered a ton of designs, but the one that I ultimely went with was one where the words rested between a set of uneven brackets. The brackets represent the physical container of life and the uneven lines coming from them show how if is often out of balance. The words are my statement that I'm still here and there's more for me to do and I don't plan on stopping anytime soon; that I'm ready for the next battle because this cancer will come back and we will dance this dance again whether I like it or not. Also, I used the variant, rarely used capital "S", which symbolises me being a rare bird of sorts.

Some have joked about it being misspelt (because they were just being silly)-- and it's not. I checked it at least 50 times and even ran it past someone of some import in the Star Wars community before I committed it to my skin. Some have even asked why I would want to "destroy" my body with it. Honestly, if the Myeloma didn't destroy me, nothing will. And of course, I can appreciate the humour the friends were expressing, but I don't really feel that my statement of surviving something this huge is exactly something I am comfortable joking about. I hope they understand.

 
 
Current Location: Lakewood, OH
Current Mood: triumphant
Current Music: Teagan and Sara
 
 
 
jedipartner1967
02 May 2016 @ 08:35 pm
I attended our monthly Multiple Myeloma support meeting this evening and it was a good one. Our guest speaker was a guy named James Bond. No lie. He is a 24-year survivor of the disease and was one of the first people on whom they tested the drug that became Velcade. His doctor revealed to him, years later, that he was the seventh person who signed up for the Velcade trial and he coincidentally (and appropriately) given the test subject number "007". He's had several setbacks (including treatment-related leukemia and squamous cell cancers), but he's had a lot of successes and a really long life after diagnosis!

He confirmed the things that have felt since my diagnosis-- that excercise and motion is key (even on the worst days), a good attitude is your best defence, keeping things normal is important, and don't stop doing the things you love to do or quit making plans because you "might get sick again". I look at James as sort of the "Lewis and Clark" of my Myeloma journey: he was there in the early days of modern treatment and explored the frontier or new medicines and could tell us why to expect.

That leads me to my little story...

Back at our December meeting, one older gentleman and his wife were hoping for someone to give them information about the whole stem cell transplant procedure. He was going into the Cleveland Clinic and I, having recently gone through that process, was able to provide him with details about the blood cancer floor and so forth. He asked for any advice I could give him that might make the whole thing easier. I always have a lot to say, so they were in luck!

I told him that everyone there was super nice and they would do everything they could to make his stay as effortless as possible. I advised him to drink a lot of water and to bring Mio or some other flavouring to make the water less boring; that if they said to drink 8 mugs of water each day, he should drink 10 to 12 even though he might need to pee all the time. I said that he should stay on top of his nausea by getting the anti-nausea meds even if he wasn't really feeling neauseated because once you started to feel that way, it would be a while before the meds kicked in. I also urged him to take those walks and even better, get down to the exercise room and spend 15-30 minutes on the recumbent bike in the morning and in the evening.

Anyhow, he had his stem cell transplant in January and this was his first meeting post-treatment. He was hoping that I would be at the meeting because he and his wife wanted to thank me for all the advice and the support I gave them beforehand. I was grateful that it helped him. He told me that the staff said that he was doing all the right things to get through the ordeal. He mentioned that I had advised him on what to do and expect before he went in and let them know that I had been there at the end of the summer for my own transplant. As it turned out, the doctors and nurses all remembered me and nicknamed me "the overachiever". They said that I was always happy and welcoming and that they looked forward to doing vitals, blood draws and whatnot because I always made them laugh no matter what time of the day or night they came to see me. I was stunned that I had let such an impression on them, but was glad that I did.

And so it was a night that went from Bond to a Jedi as those who gave hope and encouragement to our fellow "Myelomans".
 
 
Current Location: Lakewood, OH
Current Mood: accomplished
 
 
jedipartner1967
23 March 2016 @ 11:43 am
The summer of 1986 was a bit of a turbulent one for me. There were a number of things that were going on in my life and in the world. I recorded some tracks with my first band at a real recording studio in Detroit, Michagan. I had taken a trip to Japan with my mother and I knew that it would probably be the last time I saw my grandfather. Upon returning home, I started rehearsals with the aforementioned band and my father announced that he was divorcing my mother. About a week later, I turned 19 and two weeks after that I was off to Europe with the band on my first tour.

During all of this personal stuff, the Libyans had decided to excercise their right to insanity by blowing stuff up all over Europe. For a while, I wasn't sure that leaving school after only one year under my belt was such a great idea-- not because I was leaving school after only one year, but because no soon Berlin. While we weren't going to Berlin, we were going to start things up in France, which is a lot closer to Berlin than Ohio is. The United States pointed the finger at the Libyans and despite the fact that it was actually some of their people who set off the bomb, they were pretty pissed off at us. These things happen.

Much to at least my mother's dismay, more things were being blown up around the continent and Americans were targeted for just being where the Libyans could get to them. So right then was a really good time for us to be flying off to France.

So we did.

There were tons of television appearances, radio interviews, club dates and festivals. It was all really pretty exciting despite the fact that my mother was still a mess from the recent divorce news and I was upset over how my mother was coping on her own back home. All in all, it was a good trip and I wish I had been able to keep my head focused, but there was a lot for a 19-year old to process. One of the concerns was "how do you deal with groupies?" No one prepared me for that.

During most of our time in Paris, we stayed at the apartment of Alain and Claudine Dupré and their young daughters, Aurelie and Caroline. There was always chaos going on in that place, so the commotion of multiple phone calls on that one October morning didn't really faze me. When I got to the dining room, I was grimly informed that the concert hall where we were headlining had received a bomb threat and the promoter was waiting for our decision on whether or not we should play that evening.

Call it "stupidity", "the bravado of youth" or "foolishness", but I immediately piped up and said, "I didn't come here to let some idiots prevent me from doing what I want to do. I think we should play tonight!" I was unwavering in my position and eventually everyone agreed to let the show go on. We played to a packed house and nothing happened to any of us. Nothing.

It was then that I learnt that most threats are idle threats and unfortunate events that happen usually aren't advertised in a big way. Mind you, I take all threats seriously, but I won't allow others to derail me or my desire to live my life as normally as possible. You still have to be aware of the things going on around you (you always should, really), but you just need to keep moving forward.

The attacks in Paris a few months ago and the attacks on Brussels really hit home because I was in these places. I walked on those streets and I was with those people. The idiocy of aggression and war hasn't changed in the past 30 years and none of this is remarkably new. Maybe the way that all of it is being reported is new, but that's about it. For as long as we regard ourselves as separate and different, we will have to expect these attacks.

I encourage everyone to keep the world in their thoughts and prayers. I especially encourage everyone to keep pushing forward and to stay defiant-- to risk enjoyment in the midst of danger. We don't get many spins on this planet and we need to make the most of the ones we get.
 
 
Current Location: Lakewood, OH
Current Mood: defiant
 
 
jedipartner1967
The most coveted toy in the 1978-1986 Kenner Star Wars range was the Death Star Space Station playset. The second most coveted toy was the Millennium Falcon Spaceship. I was the proud owner of both-- getting the Falcon after months of saving money from doing chores and the Death Star as a Christmas present. The playset was mentioned in an earlier post counting down the days to Celebration VI and my 45th birthday.


Let's just start by saying that I was not one of those kids who always got what he wanted. Neither was one of those kids who felt comfortable asking for special gifts. When I saw this playset in the toy catalogues, I immediately needed to have one-- in some fashion.

I was visiting with my father the other day and he was relating a story to my stepmother and my partner about how I used to make all of my own toys if I didn't have them. He remembered how I used to save cardboard boxes and those clear sheets of plastic that served as "windows" on various packages. He talked about how he used to see me carefully measuring things out and then cutting and taping or gluing these structures together before painting them with tempra paints. I would use the plastic sheets as windows for the canopies of my assorted X-Wings, TIE Fighters and even the Millennum Falcon.

Dad also spoke of how I made my own action figures out of wood by using an "inherited" jigsaw from one of our neighbours. He said that he marveled at the painstaking detail I would put into things that I saw from the various pictures of the toys that were advertised.

I remember doing these things, but I was amazed that my father recalled them with such fondness and enthusiasm.


My Death Star was entirely based on all of the parts that were described on the catalogue pages and I even had working parts, like the light-bridge, the elevator, the trash compactor and even the exploding cannon. Oh, the cannon was made using the connecting pieces from model kits since those were long and cylindrical and worked well as the barrels. I made my trash out of a couple sponges my mother let me have. While it was not the most amazing piece of construction, it served its purpose, gave me something to do and provided me with hours of fun.

I vaguely remember asking my parents for the Death Star Space Station for Christmas and didn't fully expect to get it. I was content playing with my friend Tim's X-Wing and Allen's Landspeeder, so I didn't really need the actual toys since I had already built my own. I think that my folks probably took note of how little I asked for and saw how much time I spent with my homemade playset and that's how the actual toy ended up underneath the Christmas tree on the morning of 25 December 1978. Needless to say, I was completely gobsmacked. I was so overwhelmed by this gift that I still have it today and it remains the centerpiece of my collection-- all pieces intact and accounted for... except for the "trash" foam, which disintegrated a couple decades ago.

I thought I would revisit this part of my past because it really meant a lot to me that my father remembered so much about this time in my life and in such great detail. He spoke of my little kid accomplishments with such pride and enthusiasm that I had to write it down here for myself-- even if no one else cares or reads about it. These were the humble beginnings of my passion to make my little display boxes which house my playsets or even serve as complete scenes for my action figures. I'm glad that my parents let me save all of those pieces of cardboard and plastic and let me have the chance to imagine, create and build.
 
 
Current Location: Lakewood, OH
Current Mood: nostalgicnostalgic
 
 
jedipartner1967
30 December 2015 @ 07:55 pm
I'm going to try to keep this brief and to the point. It's been a really intense year and I am not going to complain about it. For those of you who followed my exploits through diagnosis to radiation to chemo to stem cell transplant and recovery, you know know what I went through for the last 12 months and change. Again, I want to thank you for lending an ear or support in some way, shape or form.

At the moment, I am on my maintenance chemo plan, which is expected to last the next two years. After that, I guess we'll see what happens.

The holidays were good, but I managed to get the flu on Christmas Day. My fledgling immune system just couldn't ward off the bug and I went from feeling great to having aches and chills within 30 minutes. I'm still tired, but am feeling better, thank you.

My Aunt Linda, who happens to be a nurse, came up to me on Christmas Eve and told me that I was the bravest person she knows, having faced down Multiple Myeloma with a sense of humour, a smile and never losing myself to sadness, worry or having pity parties. I continued to support my friends as they needed it and continued to work and I kept things "normal". Anyhow, Aunt Linda's words made me blush and I felt a bit embarrassed because I don't feel that I did anything spectacular or brave. This is just... me.

Maybe I was able to get through this the way I did because of the one thing that I have always believed: No one made me any promises as I was being pushed out of my mother's womb and because of this, I never feel like anyone has taken anything away from me.

No one promised me 30, 40, 50-- 90 years of perfect health. No one promised me that my life would be easy. On the flip side, no one promised me that I would have such amazing people in my life, but I am fortunate that I do. You get the things you get and you incorporate them into your life and keep moving forward. As I said sometime in the last year: "Don't let the bad things win... ever."

I hope that the people I see on Facebook and Twitter who more often than not say they are feeling sad, depressed, brokenhearted or hopeless about their lives can take a moment to see the things that they do have. Now, I'm not talking about the folks who are medically diagnosed with depression or bipolar or anything; I'm talking about the folks who seem to linger in self pity for whatever reason. At the very least, I have more than enough friends and their love to let me know that I matter and that is more than I could ask for. No amount of illness, debt or even a thankless job should stop you from knowing that there is love. Your newsfeeds and walls are filled with it every day. Just look and you will find a friend who cares about you. The modern world has made it really easy to shut you off if they didn't-- and they haven't. If you still don't believe it, know that I care. I care about what happens to each and every wonderful life on this planet and I wish all of you happiness and the ability for you to recognise the love in your lives each day in the coming year. We all stand together. We are not alone.

HAPPY NEW YEAR... EVERYONE.
 
 
Current Mood: thankfulthankful
 
 
jedipartner1967
25 October 2015 @ 08:47 pm



part.

This Improvised Life - Sunday, 25 October 2015

Lakewood Library



I laid there in one of the beds in the Apheresis unit at Cleveland Clinic on a Tuesday morning. Ugh, it was too early. Just too, too early! There were five other people with me, but not all of us were having our stem cells harvested. Some of the people were there for plasma infusions and other exciting procedures that looked like, but were not oil changes. One of the people who was there with me was Gina, the lady from Toledo who would be admitted for stem cell transplantation at the same time as I the following week.


It was pretty quiet in that room and it was freezing, too. Some people slept while others occupied their time with books or the televisions that were part of their bed rigs. I chose to pass my time with my Chomebook and Amy Poehler’s Yes, Please! on Audible. On occasion, I might’ve laughed a little too loudly and for those around me, that probably sucked. This is supposed to be a somber zone, right? I mean, it is a hospital after all. Oh, I guess I could’ve been a little more sensitive to everyone else’s needs, but, by God, I think they should’ve been a little more sensitive to mine as well! I mean, I wanted it to seem more like a party and not something so completely sad or frightening. I wanted it to be like a day at summer camp, but with beds, and tubes, and sick people, and arctic temperatures.


Welcome to “Camp Frigiwanda”!


In some ways, I guess I probably made it fun. The nurses and the techs who were working in the unit all seemed to have a good time with me. And I’m pretty sure the adorable Asian toddler in the bed across from mine appreciated someone else who was playing and keeping things light. Gina was certainly having a great time as we rolled our eyes at each other or communicated silently in a game of hospital charades while the quiet, boring and chilly hours passed in that room. It probably helped that I engratiated myself to the staff because, as it turned out, I had to use the bathroom a number of times while I was there.


Let me explain: “using the bathroom” wasn’t just a matter of letting me get up and go use the bathroom, which was actually only about 12 feet away from me. I was hooked up to a machine and couldn’t be uncoupled from it for the entire duration of the process; a process which lasted almost seven hours. What happened was that they needed to bring me a jug to pee into and then they had to position me just right or the flow of blood going into the filtering machine would be interrupted and it would make an annoying beeping sound until someone came by to shut it off. Honestly, it didn’t matter if I was in or out of the bed, that machine just kept sounding its alarm that whole morning. I was special, apparently. Anyhow, after they gave me the jug and positioned me, they would have to close the wraparound curtain so I could go ahead and relieve myself. Looking back on that, it probably wasn’t a good idea to continue listening to Amy Poehler when all that was happening because I am pretty sure the giggling coming from behind the curtain caused people to wonder what was really going on back there while I was obviously touching myself.


After I completed my personal duties, I’d have to yell for a nurse and tell her I was finished. This is not something I have had to do since I was about three years old-- you know, yell for someone more responsible to let them know I had finished going to the bathroom. I digress-- the nurse would come by, open the curtain, smile politely and take the pee jug away. For some reason, my body felt the need to repeat this process about once an hour even though I barely had anything to drink in the morning or while I was there. I was like some sort of human dehumidifier that was pulling all the moisture out of the air and filtering it through my kidneys. It was a little embarrassing, but we all lived.


Before I realised, it was 2:30. It was the magical moment they determined the bag of pulpy orange stuff that had come from my blood was full enough for the day and told me it was time to go home. Great! I have to go to the bathroom again. This time I could wait until they unhooked me from the apheresis machine and sent me on my way with or without a lollipop.


When the nurse started to detach the tubes that were connected to the ones in my chest, she happened to look down at the floor. She screwed up her face, which made me look at the floor. Beneath the machine were little pools of red liquid that sort of looked like blood or something like blood. The nurse could tell that I knew something wasn’t quite right, so she just decided to open up the front hatch on the machine to have a look. What the two of us saw resembled a crime scene. The first words out of her mouth were, “This isn’t normal.”


We looked at each other, looked at the blood-splattered innards of the filtering device and looked at each other again. Her eyes grew wide and she said, “this has never happened before. I’m going to have to go get someone.” Of course this has never happened before-- these things only happen when I’m a part of the equation!!


I had to wait for a tech to come by and it was taking quite a while. By this time, I really had to pee again. Thankfully, I was unhooked from the machine so I could make it to the actual bathroom at long last. Relief for all parties involved! Waiting for the tech to arrive felt like waiting for the principal to arrive. I felt like I was going to get a stern talking-to for breaking the expensive device and my punishment would be that my insurance would be billed for it. Go ahead, I’ve already paid my deductible and met the out-of-pocket maximum, so I wasn’t responsible for anything else! The tech arrived about 10 minutes later and she just stared at the machine, not knowing what to make of it. Gina was still on her leash and silently kept gesticulating at me, asking what was going on. All I could do was shrug.


The tech got up from the machine. “This isn’t normal. This has never happened before.”


Is there a specific script for what to say when a machine blows up? Apparently, this actually hadn’t happened before. I was hooked up to a relatively new apheresis module and it shouldn’t have failed. My superhuman alien blood broke a part on the unit and they needed to notify the manufacturer. OK, that was pretty neat.


They sent me on my way and told me to wait for a call from the nurse who was assigned to me. She would tell me whether or not they were able to get the five million cells needed to perform the stem cell transplant. I was really hoping that they did because that would mean I wouldn’t have to go back. Well, I never got that call because this malfunction was such a big deal that the head of the department herself phoned me. I was told that they had collected well over the five million cells that they needed to perform my stem cell transplant. This was good news. I was then informed that they would need to run tests to see if the the draw had been compromised with bacteria. That was bad news. They tried to spin it by saying they didn’t think that it would be contaminated and that everything was probably alright, but just to be safe, they wanted me to come back the next day for another collection.


Are you freaking kidding me?! We have to do this again tomorrow? Is anyone really looking forward to this? If nothing else, I’m sure these folks will forever remember me as that giggling guy who peed a lot and broke their new apheresis machine.


Well honey, pack my bags-- I’m heading back to “Camp Frigiwanda”!

 
 
Current Location: Lakewood, Ohio USA
Current Mood: accomplished