Facebook is having trouble importing my (and lots of other people’s) blog entries to “Notes.” By which I mean Facebook is not importing my (and lots of other people’s) blog entries to “Notes.”

All my hilarious and leukemic antics of the past month (and sporadically before that) are missing from Facebook, including, but not limited to:

-A trip to Washington, D.C. to spend Independence Day with my sisters that I slept through!

-Apple geniuses not only repairing my graphics card, but also going so far as to give my laptop a shiny new casing!

-Fun with foot-and-mouth disease, a very painful mouth and throat disease that only animals and very lucky humans like leukemia patients get!

-And who could forget my conviction as being a Russian spy?

Classic! And much of that stuff actually happened!

I changed some settings and am hoping this blog entry will automatically be posted on Facebook, rather than only linking back to reidlevin.net. We shall see. Oh yes, we shall.

–Reid.

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Now playing: Taranchula – Moving Very Slowly
via FoxyTunes

The radiation burn on my back is closer than ever to becoming one whole weird scar, which is what I’ve been referring to as “healed” for two-and-a-half years now. It seems to have had lots starting and stopping while healing. Sometimes it has healed so fast that it can be seen day to day, and sometimes so slow that it seemed to have stopped altogether. The chemo I’m given slows down all healing processes in my body. I fell on my knee and scraped it up at the beginning of the year, and it’s still trying to heal. Being on and off of chemo for two months-ish this year really energized the healing process on my back. When the wound first started it was the size of my hand with my fingers outstretched. In the past few months, we’ve been measuring it in fingernail sizes: it recently hit the size of my pinky fingernail.

Then it stopped. Or at least slowed back down to a crawl. At least it wasn’t hurting; earlier in its healing cycle, when the nerves were regenerating, I had tremendous pain. When it touched muscle, I had body jolting spasms. No hurting? That’s awesome, no complaint. It was so comfortable, in fact, that I was able to have it covered only when sleeping, and then only every few nights when sleeping. There had been a time when having it uncovered, even for a moment, would cause me searing pain. Someone had to wait outside the shower and delicately slap (hah) the covering onto the wound. I’m quite happy to say that’s in the past, too. But I just want to be done with the thing. I’ve just wanted to be done with it for what feels like a long time now.

Last week, I had a dermatologist appointment that we made months and months ago when I was worried about some moles. Though I will admit to having forgotten about my concerns about the moles until I was asked by a nurse what brought me in and I ventured, “acne?” and my mom just shook her head. What?! I’m a very anxious person! I have more pressing issues to be neurotic about! I can’t be expected to remember every little thing that panics me to the point of thinking I may have another cancer! Jeez! Anyway, the doctor said all my moles were fine, but then he spent several minutes studying the “radiological ulceration” on my back, as he called it. He looked at it from different angles, he measured different parts of it, and finally he looked up and offered one word:

“Honey.”

He looked at my mom, he looked at me, and as if answering an everyday question about an everyday scenario, he said, “We have a nurse here who swears by honey; we’ve seen it heal a number of these.” He called for the nurse and as he left the room, I had two thoughts: 1) If the nurse swears by the honey, what does the doctor swear by? and 2) Some crazy nurse is about to come into the room with a squeezy bear of honey and squeeze it in my wound.

There was not much time to build up the normal level of anxiety I encounter when trying something new, and trust me, I’m well rehearsed in building up anxiety. The nurse slides into the room with a flat packet that he cuts open, puts in my face, and says, “Smell it. Come on, smell it.” It smelled like honey. “That’s real honey,” he informed me, “you could put it on toast! Delicious!” As he showed me the previously sterile honey in the package, which was literally a thin but malleable honeycomb filled with honey, he started saying some things about mummies being unearthed and archaeologists finding honey in their sarcophagi. “And it lasts! Thousands of years, you could still put it on toast!” Yum.

We eventually moved beyond the fact that you could, if so desired, eat the delicious honey on toast (if that’s what you’re into) or in any of a number of other different ways that people ingest honey. We briefly touched on the fact that Silvadene, the ointment we’ve been dressing my burn with (and that the radiation oncologist prescribed) for the past year and a half, is full of silver. I never made this connection because… well, I don’t know why, but I had not previously known that silver was a healing agent. The tangent on silver only lasted a moment, during which I’m sure the nurse considered that silver does not taste good on toast, and then got back to talking about the natural wonders of honey. In England, he explained, they’ve officially been treating deep radiation burns with honey for quite awhile and the FDA just approved it for use here. There’s no downside, other than putting faith in it and it not working, so what the heck, I let him patch my back up with some honey and we took some samples of the sterile honeycomb with which to dress my burn at home.

When I woke up the next morning, I took off the dressings, and what do you know? I felt like having some honey on toast. But also, it was one of those day-to-day changes in the size of the wound. It was a little smaller. And for a wound the size of my pinky nail, “a little smaller” is a big deal! I don’t know how long it will take for this thing to close up, and I’ve long since given up on trying to guess. I do feel good that I’m trying something new though, and that it’s working right now. Stick around (…ahem) for further updates on the success of honey healing my burn! Delicious!

–Reid.

I feel superbly crappy, and as a result, I’ve taken a lot of pain pills today. There’s two groups of pain pills I must/can take on a daily basis. If I’m on a pill to fix something in my body, you can bet it also causes pain somewhere else in my body. For every curative pill or two that I take every day, I also take a pain pill in an attempt to balance out the pain causing to pain relieving ratio. Second, I have pain pills that I can take if the normal everyday pain pills aren’t cutting it. Even though I took all of them today, my being remains in a state of crap.

The first day we were in Miami after disembarking, I was diagnosed with Swimmer’s ear and a sinus infection at a CVS Pharmacy “Minute Clinic” ($25 well spent!), who then prescribed me antibiotics that I could get right there and then. The nurse practitioner even called me the next morning to see how I was feeling! How ’bout that?! Remind me again why health care was so hard to fix. CVS seems to have it all figured out–there wasn’t even a wait. I bet this is the future of surgery: “Come in on your lunch break to your friendly and convenient neighborhood CVS to get that gangrenous limb removed for only $25!”

When I got back home to Denver this week, I restarted chemo yet again. Normally for me, there’s a three day pattern of feeling bad, then worse, then better with this stuff. But I’m on day four and am still getting worse. I’m writing on what looks like a blurry laptop monitor while checkerboard-painted walls whiz by as the room spins (which is weird, ’cause I don’t have checkerboard-painted walls). My arm just spasmed! The right side of my brain is in the 396th round of a boxing match with the left side of my brain! My throat is raw!, my eyeballs are hot!, my toes have pins & needles in ‘em!, my knee is out of whack!, my skin itches all over!, I’ve got the creepy crawlies!, I’ve got bone pain!, it feels like the room is spinning the other way now!, I’ve got a cramp in my stomach!, and, WORST OF ALL, none of my complaining seem to be making any difference!!

I couldn’t nap during the day due to the unusual amount of pain. I watched a surprisingly large amount of TV, though, and came up with an important, possibly probably definitely world changing anthropological question:

Who do you think would be more impressed by a modern, 80″ flat screen, high definition color television with over 300 cable channels, 100 premium channels, the Playboy Channel, and a terabyte DVR?

• A. An American family from 1950
• B. A Neanderthal family from 33,000 years ago

Remember, this subjective poll does have one right answer. From the research I’ve looked into on the subject, the answer may just surprise you! Stay tuned!

–Reid.

Yesterday, I woke up feeling like a million bajillion bucks (cash, unmarked bills). I felt stronger and less fatigued than I’ve felt in two months. Yesterday, I held myself up taller than I have in a long time. Lots of people say it’s easy to tell how I’m feeling based on how tall I am–that I slouch lower and lower the worse I feel. I think, based on how many more bald spots, horns, and lines of latitude and longitude I can see when I’m feeling well, this is probably true.

Yesterday, I went to the Hem/Onc Clinic (legal disclaimer: The Hem/Onc Clinic is the Hematology and Oncology Clinic at TCH and bears no relation to He-Monc, a character from the “Masters of the Universe” franchise, owned by Mattel) for some scheduled blood work. The blood work’s two main purposes were:

1) To check my ferritin level. Ferritin, according to Wikipedia, “serves to store iron in a non-toxic form, to deposit it in a safe form, to transport it to areas that it is required, and to free the slaves.” I’m fairly sure that last thing was actually attributable to Lincoln’s Emancipation Proclamation, but hey, it’s Wikipedia, it happens. Ferritin also serves as an indicator of how much iron is in a person’s body. A normal male has 16 – 30 incredibly small measurements of mass (m) per teeny-tiny measurements of volume (v). I don’t remember the units of measurement we’re using here. It could be moles per liter or picomoles per deciliters, or any of hundreds of other measurements, but I’m just gonna say I don’t remember and use the m/v so I don’t make myself look like I have less than the very minor understanding I have of what I’m talking about. Also, don’t picomoles with Avogadro sauce sound delicious? Yeah they do.

Anyway, back to the thing I know so much about that’s been plaguing my body since at least January. Last Wednesday, I had a blood test that revealed I had 311 m/v of ferritin in my blood. I can tell you, as someone who knows about these things, that 311 is a much, much higher number than the 30 m/v that is the top of the range that healthy males should have. So all the stuff I wrote about last week is pretty likely to be almost certainly close to the cause of the proposed theory about how I was feeling fatigued and was losing my hair and–y’know what, you can go read that post for yourself. I don’t have time to summarize all my other posts just for you. I’m a guy who knows stuff about moles and hectoliters and iron, which is really the important thing here.

Right, so last Wednesday, I had 311 m/v of ferritin. I met with my new hematologist, who agreed that 311 is a much bigger number than 30, and since we’d already tried the vampire method (from that other post you totally just read), she said I should go on these pills that will help me out, but we can’t get them at a normal pharmacy, they have to be delivered, like pizza, to our house. Judging from how many times they get our pizza order wrong, I’m not sure I feel comfortable letting them deliver my medicine. But I guess I don’t really have a choice. Or do I?

Yes, well maybe. I don’t know. Yesterday’s blood work showed that I had 202 m/v of ferritin which, while still significantly more than 30 m/v, is a lot less than 311 m/v. This would seem to indicate that I am on a fast decline of ferritin, and therefore, reserves of iron. I still signed all the papers to get the pizza place to deliver my pills, but I think before I start taking the pills, I need to talk to my new hematologist, who was not at the clinic yesterday. Or today.

2) The second big purpose for the blood work yesterday was to check my ANC. Which is basically, a measure of a person’s (my) immune system, based on some wacky mathematical hoobajoob. Luckily, there are no units of measurement to forget. Last week, my ANC was 300ish and this week it was 1150. My cutoff for receiving chemotherapy is 500. I am officially back on the chemotherapy wagon! Hooray… kind of! They did not slowly ease me back in to the chemo, I think they decided to make up for lost time. They just sorta told me to close my eyes tight and climb, and then they said, “You can open your eyes,” and I was like, “Oh no!” but by that time, they had already pushed me from the high dive into the little backyard kiddie pool filled with big doses of chemotherapy drugs.

I should really take a moment to address the overuse and misuse of metaphors on the Internet, since I just dropped that excellently crafted one in the last paragraph that metaphored my going back on all those chemo drugs to be pushed off a high dive. So take note, all you Internet people (Interneople? Internipple? netizens? is that right? it’s some crappy portmanteau like that… whatever, any of those are good enough for Chief Justice of the Supreme Court of the United States of America John Roberts, so they’re good enough for me), I don’t want to hear any of your dumb metaphors for any reason, but I am free to to spout all the dumb metaphors I want.

Last night, I took all my chemo pills and said goodbye to feeling good. By this morning, I felt crappy and bitter. My one day of feeling really, really good and tall was but a distant memory. I feel intensely crappy; everything hurts. That really sums it up. I feel hopeful, though, that my body might be dealing with the iron overload on its own. Hopefully it will plunge another 100 points by next week, since I did not receive an injection of vincristine, the chemotherapy drug voted most likely to be the cause of all the problems I’ve had in 2010. Yes, including my run-in with the IRS and, of course that hunter shooting me with three tranq darts, ’cause he thought I was a moose roaming around downtown Denver–but those are stories for another day. I don’t know how likely it is to count on my body regulating iron correctly now, but I hope that’s what’s happening. Nobody has really indicated it was not happening, but I guess nobody’s really indicated anything at all, so for all I know, maybe this whole iron problem will be gone tomorrow. Maybe it’s gone now!

Yeah, that sounds good. Let’s go with that.

–Reid.

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Now playing: Barenaked Ladies – Watching the Northern Lights
via FoxyTunes

Quick recap: in 2008 when I was suffering from hemorrhagic pancreatitis, I was losing a tremendous amount of blood. I was receiving transfusions constantly, and the worse I got, the more of other people’s blood was put inside me. I’m definitely thankful for that and to all those people, but unfortunately, I’m now experiencing problems from all those transfusions.

I don’t have anything like hepatitis or other worse things one could get from transfusions (thank goodness). It’s not that I had a specific bad transfusion (in this particular instance), it’s that I got so many transfusions. One of the effects of losing a lot of blood and having new blood constantly pumped in like this is that the body starts hoarding all the iron it can. The body uses iron to move oxygen around, but only relatively small amounts are necessary for this. I have a huge, huge iron overload. Somewhere in the range of (relatively small normal amount) x 150,000. Huge!

I’ve been losing my hair (without any changes in medication, or growing older). I’ve been incredibly fatigued and weak for months. I’ve been Rip Van Winkle-level sleepy. From these symptoms, we were able to pinpoint this iron problem. I’ve got to give my mom a lot of credit for doing research and pushing all this iron business along. I certainly don’t mean to put any of my oncology doctors or nurses in any bad light, but my mom, through her researching CDC material, really pursued some alternate ideas of what was going on and she was right. Other possible effects of “heavy metal poisoning” or “iron toxification” or “iron overload” include the metal overloading the liver and kidneys, bad bacteria that eat iron building up, and all sorts of other crappy lethal things. For instance, as I posted recently, Magneto killing me dressed as a security guard.

There are really two ways to solve this problem (the iron, not Magneto). One is to drain some blood out of my body regularly (maybe even for several years with the amount of iron I have), the other is a medication called a chelator. When this was recognized as the problem, my oncologist chose to try the phlebotomy method of putting me in a dark room with vampires. The problem with this method, aside from the puncture wounds, intolerance to light, and sudden aversion to crosses, stakes, and holy water, is that it barely took out any iron from my blood, and instead dropped my ANC drastically.

ANC, which stands for “ay en sea” or “Absolute Neutrophil Count,” is a mathematical formula that determines the blood composition in a body (white cells, red cells, hemoglobin), based on a small sample of blood. A normal ANC is above 1,500 cells per microliter. If someone has an ANC less than 500 cells per microliter, they are “neutropenic” meaning they are just asking to get infected, as if they were flaunting it, “My immune system is barely working, come and infect me, aw yeah.” It is very, very rare that I would not be taken off of my normal chemotherapy regimen with an ANC lower than 500. My ANC’s been hovering around 350 since the phlebotomies, and as a result, I’ve been off chemo for over a month. As much as I dislike having to go through chemotherapy treatments, I’m starting to feel very anxious about being off it for so long.

You might think I should be dancing in the streets after being off chemo for so long, but unfortunately, you don’t know the whole story and thus your opinions on where and when I should do my dancing are totally useless. Okay, okay… wait! Come back, I didn’t mean it. Here, I’ll explain it more so you can be more informed. It’s not like this entry wasn’t already long enough, right? No wait, I was kidding! Really, I’ll explain it, come on!

Like I mentioned, a low ANC gets you sick, and due to a lack of cells, makes you tired, weak, and boring. The reason my oncologist tried the phlebotomy method first was that he didn’t want to put me on a new drug, due to my history of getting all the .01% chance side effects. So it made sense. However, after feeling super crappy for over a month and tiring of sleeping in a coffin, not being able to eat anything with garlic in it, and having these weird dreams about being a bat and… necking with a lot of people… maybe(?) (I can’t quite remember) it’s time to try the chelator. Basically, the chelator works like a magnet (I said like a magnet; stop throwing rocks through my windows, scientists!) and gathers up all the unnecessary metals in one’s body to be easily peed out.

Luckily, the oncology clinic at the hospital is actually officially the “oncology and hematology clinic.” That’s why I don’t know half the staff there. But, today, after talking to my oncologist and recommending to him that I go on all the pills the TV told me to tell my doctor about, he turned me over to Dr. Hayes, a hematologist who will be working with me for (hopefully) just the next year to get this heavy metal problem under control with an oral chelator. If I’m experiencing too many side effects from the oral chelator, I have to use the subcutaneous version, which involves sticking myself with a needle five times a week and a pump, which I assume pumps the chelator into my subcutaneousness. It has almost no side effects in this form.

I’m hoping the oral method works. I have to wait to get the pills, and I guess the FDA hasn’t approved them, so the company that makes them will deliver them to my house late next week or thereabouts. So, not only do I have to suffer through another week (or more) to get this started, I’m also clearly going to be at the mercy of a Mexican drug cartel. Sigh.

Again, since my ANC is so low, I am prone to get some pretty crappy things. I’m starting to get mouth sores. I know someone my age through a support group who said that when he went through chemotherapy, getting mouth sores was worse than getting his leg amputated as the result of being shot in Iraq. Now, I’ve never been to Iraq, so I can’t say I’ve been shot there, and I’ve never lost a limb anywhere. I’ve only had one case of mouth sores before, which sucked and hurt and was bad and awful, but I have to say, respectfully to the man who lost a limb for his country, that I’d prefer not losing a limb and having the damn things in my mouth. Hopefully, hopefully it will turn out to be a very light case.

Let’s see, I promised weather and sports… hmmmn. It’s been windy here, but very warm. 60′s to 70′s. That damn wind, though, it’s… windy.

And sports: The Avs are back in the playoffs at last (they just beat the Sharks tonight), and the Nuggets are gonna be in the playoffs against the Jazz, and the Rockies are doing good, at the beginning of their season, I guess. I can’t ever tell with baseball, because when people start talking about it, my mind wanders to more interesting topics, like how I’m annoyed by those ads promoting corn syrup as not the worst thing ever. Are board games sports? Well I don’t know, but tegardless, I hate the new Scrabble “rules.” Proper nouns? Spelling words backwards?! PLACING WORDS NOT CONNECTED TO OTHER WORDS?!?! It’s very hard playing games without rules. Don’t get me wrong, a good game of Baldertrapscrabopoly or Calvinball is fun every once in a while. But, without rules, we’re talking about sports anarchy.

Oh, also, this is sports related: Tiger Woods remains in the public interest enough that I will bet more people know who he is than know who won the Masters. I sure don’t know who won the Masters, but I’ll still bet those TV guys were psyched to have Tiger playing. Their ratings probably went up by 1,000%, so there were like… 1,000 people watching this year. I liked that ad with Tiger’s dad’s voice. I know a lot of people considered it wrong or creepy or dodging the issue to use his voice postmortem, but I thought it was effective as an acknowledgment that Tiger had done something wrong, and he wanted people to know that and hopefully we can stop hearing about him for two or three minutes. Oh, and I like those new ads were the Burger King breaks into McDonald’s headquarters and steals their breakfast menu, and then the voice over says “Hey, they may not be original, but they’re only a buck here.” I like it when public figures or companies acknowledge their problems, ’cause it seems rare that public figures ever do. Stupid lying corn syrup.

Okay, that’s it. Good night.

–Reid.

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Now playing: The Kinks – A Well Respected Man
via FoxyTunes

To make this particularly important announcement, I was going to subtitle a video of that very famous soundbite by George Herbert Walker Bush, I (that’s supposed to be a roman numeral indicating the number one, but this font’s got no serifs!). I figured out that, if I subtitled that clip, it would be really easy to make it seem like he said, “Read. My. Lips: No New Cancers!” because people cheered over him saying “taxes,” and the words “taxes” and “cancers” would basically look the same coming out of his mouth. Then I spent some time looking for a decent copy of this video from the 1988 Republican National Convention. Then I realized that, actually, George Herbert Walker Bush, One’s promise was broken and he had, in fact, introduced taxes and I didn’t really want to, y’know, hex myself by putting this particularly important announcement into the mouth of a liar as he was lying, even if it was a savvy use of my video editing prowess.

Then I remembered, “hold the phone, I am a total idiot.”

I totally forgot that this Bush, One Roman Numeral guy, he created one of the worst things ever! So what was I even thinking in the first place? And theeen I remembered that I had already commented about this extremely offensive thing he had created in a very not safe for work video (here’s a hint that might be important based on where this extraordinarily not safe for work, but rib tickling and sonically jazzifying, get up and dance comment loads for you: he didn’t create you, the world, feminism, or The Constitution) (here’s another hint: this thing I so supremely dislike with every fiber of my being, he created it with his balls), so I gave up on the whole thing and decided I should probably just announce this particularly important thing from my own mouth and/or keyboard:

Dr. Surgeo Lookieloo, who performed yesterday’s poke ‘n drain on my upper digestive areas, felt strongly, based on the evidence he observed and collected from inside my gut, that the best time to explain his findings was while I was still deeply asleep from the general anesthetic that my Dad kept reminding me killed Michael Jackson. The doctor told my parents that there is a very good chance that in my abdomen, I do not have any organs that are infected with a new, different cancer, or any cancerous tumors. The pathology from all the poking will hopefully confirm this within a few weeks. Even without the pathology, though, the doctor indicated that he saw enough nocancer to say with certainty that there was no new cancer growing inside my stomach, or on my pancreas, or in my pancreas, or in the pseudo-cysts near my pancreas, or in some weird floaty legions near my pancreas, and that’s all I was told about before my mom said to stop asking her about my pancreas. She said that the doctor had seemed pretty darn sure that my entire abdomen was free from a new cancer. I asked if she’d ever heard of anyone getting cancer of the diaphragm, and I’m pretty sure she heard me but just chose to ignore my question.

This seems like a good time to bring up The Incredibly Improbable Statistic Of The Day for yesterday. The Incredibly Improbable Statistic Of The Day for Monday, April 5 was that when I finally woke up after my investigatory gastrointestinal surgey, I found out that my post-operating room nurse was from Vernon, a Township in New Jersey, about which Wikipedia states that “nobody knows how it got its name!” Woah! Isn’t that wild?! But even more statistically astonishing than that astonishing fact is that Vernon is where Carlos Cabrera hails from, and my post operating room nurse not only knew him by name, but had grown up with his older sister! Take that, Math!

The news is very good, even if it doesn’t answer the looming question of what I do have that’s causing my abdominal pain. It’s really good to know that it’s not any new cancer. In all seriousness, my parents really looked out for me yesterday, and went to bat for me and my best interests when there were some questions raised. They deserve a helluva of a lot of credit for that and an equally large amount of love for sitting around for seven hours and not falling asleep.

I’m trying to stay positive, and I think we have some legitimate new leads on what might be affecting me. The high concentration of iron in my blood (the reason why Reiman recently reminded me to avoid Magneto) might just be causing the problem we’re investigating–and a few others. But that’s a story for another day. Until then, stay cool, fair reiders! And Jamba Juice: you will continue making a sizable fortune off of me and my tender, tender tummy.

Excelsior!

–Reid.

First off, I will reiterate that this post isn’t about the health bill. It’s simply some good, old fashioned complaining about my health with little to no regard for anyone else’s suffering.

That said, my stomach mystery pains continue. Sure, the exhaustion and weakness, the poor eating, and the pain throughout my body all persist. But at its heart (not my heart, of course, it’s already committed to a series of complaints this summer), this is really, more than anything else, the story of a battle between a boy and his abdomen. I was checked out by a GI specialist at the University Hospital last week. He sent me to get a CT scan at the end of last week, the results of which he called us about today. My insides look very, very peculiar and worrisome he said. Tell us something we don’t know, we laughed in response, albeit more diplomatically and without the laughter. We told him this had been explained to us by a number of other doctors before, the result of many different things and people wreaking havoc in there over the past few years.

Everything was first messed up when I had hemorrhagic pancreatitis. Basically, my pancreas took my liver hostage, named itself new warlord of my abdomen, and ordered every other major organ be reshaped to look more like him. It was an awful standoff, and even though I lived, I don’t know that there was a clear “winner.” Fixing my pancreas and all my other insides from that incident and the two other cases of pancreatitis I’ve had since then have also contributed to the “weird” look. The best worst description came from the surgeon who laparoscopically removed my gallbladder through my belly button in hopes of luring my pancreas into a more logistically sound location. She said my insides look like stalactites and stalagmites. She’s good people–she went down to Haiti and temporarily donated her hands and brain for much needed surgeries in the first weeks of the horrible mess in Port-au-Prince–and so I, for some reason, trust her silly description. Come to think of it, though, there are a lot of good people who I wouldn’t say “he’s a great guy, so I believe in his quirky way of describing my insides,” and, when you think about it, she could have donated those body parts permanently, but she chose to bring them home with her. What a typical American liberal elitist move. Hmn.

In the meantime, today was the worst day of this unidentified stomach problem. It’s been going back and forth between feeling slightly better and slightly worse, but today definitely ended worse (not definitely slightly worse–forget that “slightly” all together). I described it, if the pain continues getting worse at the same rate, as passing pain scale level number nine tomorrow. Since the whole system was redefined specifically for me (by me) I should explain. Basically, the standard pain scale asks people to identify their pain on a standard one to ten scale. I did not feel that this adequately left me a way to explain the pain of, say, hemorrhagic pancreatitis and all the things surrounding it, like emergency four hour awake surgery, as compared to, let’s see, how about… a major head wound.

(Sorry, if I explained before; I’m in lots of pain just from yawning, and am on a couple of different narcotics.)

I found that even when I was feeling very ill and found myself in a tremendous amount of pain, I would say I was at a five on the pain scale, because I knew whatever I had didn’t even compare to hemorrhagic pancreatitis. This just confused everyone. So I introduced a pain scale that still goes from one to ten, except it involves exponents. Aside from my original attack of pancreatitis, I have only ever described one other thing being as bad as a nine. That was the third time I had pancreatitis; I was adamant that it was a 9.5. That was before I left my body to zombie around without me for ten days in June 2009, and I just knew that I had some bad pancreatitis going on. I tried to explain the whole exponential pain scale in the ED (ER), and what 9.5 meant, as compared to, say, 9. But whatever happened as a result of me saying that sent me on a trip through the cosmos of which I have no memory. That 9.5 has been called “acute chronic pancreatitis,” “acute non hemorrhagic pancreatitis,” and by a steadily growing group of scientists, “Larry.”

I’ve since realized that if I was searching for an easier way to quickly explain how bad my pain is, having to explain the whole curved graph, and 10 representing some sort of “infinite pain” was the wrong way to do it. In fact, I think I’ve made the whole situation harder, especially for me, because math is one of those things I never really understood, and I realize now that exponents probably aren’t even what I thought they were (they involve a toaster oven and how fast plastic takes to burn in it, right?). Also, no one else has adopted this scale, including the doctors and nurses who should really probably be able to understand how good or 10 I feel. Oh well.

My stomach hurts a lot now. The pain has really spread. My head hurts a hell of a lot, and everything else, not satisfied with waiting on the sidelines this time, has entered the “ouch” game, where everything hurts! I’m scheduled to have an endoscopy next week, which seems quite a long time to wait as I judge my pain going from 9.0433299 to 9.04333. Hopefully that test, which I will supposedly be fully under for, will definitely have a chance to maybe finally reveal some answers. Until then, I’ve got pain leaking from my ears. I’m selling it at quite reasonable rates, so make sure to stop by before next week for one of these crazy, crazy deals! Someone said it was as if I was giving my left arm away! Yes… almost. This pain won’t last forever, so remember to come with lots and lots of pre-signed blank checks!

–Reid.

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Now playing: Chumbawamba – Amnesia
via FoxyTunes

rebeccalevin: I am proud to be an American tonight

reidlevin: @rebeccalevin I am thankful to be an American tonight!

As an American with cancer, it is very difficult to explain my jubilation with the vote tonight that reforms American health care. I am moved for so many different reasons.

All politics is personal indeed, Madam Speaker.

–Reid.

In an ironic twist, my mouth has been too sensitive to use Sensodyne toothpaste the past two nights. The toothpaste, marketed as the “dentist-recommended way to treat [my] sensitive teeth,” has left me with a distinct spicy-mouth-tingle, a please-please-please-make-the-fire-stop-burning-away-my-tongue sort of feeling, perhaps even a oh-why-won’t-you-just-stop-the-horrible-feeling-of-hell’s-fiery-wrath-in-my-teeth-you-sadist-bastard?! sensation, if you will. I am now at a loss: if Sensodyne, the #1 toothpaste to help sensitive teeth, is too strong for my teeth, what options does that leave me? Is dentin even the cause for sensitive teeth? What other lies have you told me, Sensodyne? My whole dental world is spinning. But why would four out of five dentists lead me astray? What possible reason could they have?

I think I taste a cover up.

I think we may be onto something big here, people. Something really big. And just a bit too sweet. Ouch.

–Reid.

I am home from the hospital, but still quite tired and weak.

I must again thank all my friends, whether you’re friends from my physical world or my virtual one, for your outpouring of support. I have been overwhelmed with your kindness and your naming of bar trivia teams after me.

Since my release from the hospital, I’ve actually seen more doctors than I saw in the hospital. There’re all sorts of things wrong with me–all of which, I am assured, will be fixable in some way. It may take quite a lot of time and pain, but it will all be fixed. I’m blaming cancer for all of this. That’s right, I’m calling you out, my Leukemia.

My doctors are still waiting for something to grow in some conclusive manner on one of the many Petrie dishes on which they spread my lung goo. Meanwhile, I still have that unidentified goo in my lungs. I’m getting a lot of much-needed sleep, which is still being interrupted by some really impressive coughing fits. I have not coughed up anymore blood, though, which is a good thing.

We had a great Better Than The Machine meeting this evening that I was able to attend via videoconferencing. We haven’t had a regular meeting in what feels like a long, long time. Everyone was there and we got some stuff sorted out that’s needed sorting out for quite some time. New producer? The newly re-carred Carlos. This is the dawning of The Age of Cabrera! It was a lot of fun getting to brainstorm as a group again and even approaching that level where our creative energy moves seamlessly between us; we’re a little rusty, but we’ll be back in top form in no time. I think we were all missing it, and everyone seemed to be genuinely excited that we’re going to be meeting to write and brainstorm regularly again. It was great just laughing with those guys. It always is (even when it makes me cough up a lung).

Finally, I would be remiss if I did not draw your attention to Matt Gallo’s memoirs, which have just been published. Tonight, he gave Better Than The Machine a world exclusive preview, indicating that his memoirs “might include punctuation.” No, that’s not right. I am lying. Matt wouldn’t give us any preview, so I made that up. He is a shrewd business man, that Matt Gallo. “No freebies,” that’s his motto… that I also just made up. You can–nay, must!–buy the book that includes Matt’s memoirs on Amazon.com right now (note: this is a real link to buy this real book on the real Amazon.com, not something I made up, nor another absolutely stunningly clever link to an image). Congrats on being published, Matt!

I think that’s everything I’m willing to say under oath right now.

–Reid.
Not necessarily as clever as advertised. Hospital playset sold separately.