This One’s For You, 2011.
Friday December 31st 2010, 11:00 pm
Filed under: Me, Myself, and Reid

2011, there were days I never thought I’d live to see you
and There were days I didn’t believe in you

2011, there were days I thought you couldn’t be here fast enough
and There were days I told myself I wasn’t strong enough

2011, there were days I felt too much pain to care
but There were days I laughed too hard too much to care

I see you’re finally coming in
but I’m going to bed so come in quietly, 2011

–Reid ’11.



Of Ethiopian Food, Intellectual Conversations With Cousins and The Fountain of Youth
Thursday December 30th 2010, 11:47 pm
Filed under: Denver, Family

I slept well last night and well into the late morning. This was a nice change of pace.

Cousins Adam, Amy, Kristina, Ivan and I went out for an extended lunch at Abyssinia Market Cafe Ethiopian Restaurant, one of Adam and Amy’s old haunts. Adam and Amy had taken Roo and I to Abyssinia before they skipped town twoish years ago, but despite liking it a lot, I haven’t been back since. Due to Kristina’s extensive food allergies, there was a lot of worrying on her behalf about whether or not Ethiopian food would be okay for her to eat or if we were just taking her somewhere where the food would make her sick. She assured all of us that she’d be okay and, of course, she was right.

The chef came out of the kitchen several times to discuss with Kristina what she could or couldn’t eat. Instead of vegetable oil (which contains soy, one of her worst allergies), he told us he would prepare our large shared meal with olive oil and he recommend several dishes that would not only taste good but would not make Kristina sick. This was all definitely going that extra mile for a customer. The chef also told Kristina not to eat any of the cooked vegetables because those were prepared in vegetable oil. While she reiterated several times that this was no problem, he went a second extra mile and brought out a salad prepared just for her. Needless to say, we all thought Abyssinia had very impressive service.

The food was just like I remembered it: delicious. Everyone agreed the food was great. It was also cheap, at $15 per person, considering the appetizers and teas and dessert we ordered in addition to our main course. All five of us were very happy we had gone out for Ethiopian food, and specifically to Abyssinia. Highly recommended!

As Adam pointed out, beyond the food, the service, and the cost, there’s something else very alluring about eating at an Ethiopian restaurant: it is slow paced. This isn’t to say the service was slow, rather that in this restaurant, the atmosphere is one of savoring everything, from one’s food to one’s company. We were there for two and a half hours, during which we enjoyed a game of Rummy and lots of stimulating conversation. This laid back atmosphere was probably helped by the snow falling outside. It was warm inside the restaurant, and I’m confident that not wanting to go out into the cold factored into our long conversations–though, the snow was ultimately why we left when we did; there was a lot of it and as much as we liked the place, we didn’t want to get snowed into Abyssinia.

In the hours before we left, though, we talked about religion, about our own experiences with religion and raising kids with religion. We discussed our beliefs and how they factor into our lives. This lead to a fascinating discussion about research recently released about reversing the age of mice. This certainly seems like it has the possibility of becoming the fabled Fountain of Youth, or in this case, the Injection of Youth. People could still die–this drug wouldn’t make anyone immune to cancer or getting hit by a truck–it would just keep people perpetually young. I remember reading an article when I was much younger that speculated that within my lifetime, dying (at least of old age) would become a decision.

We all conceded that society would have to change significantly if there was a drug that could return people to–and keep us at–our age of peak physical and mental fitness. It was interesting to hear everyone’s answer as to whether or not they would take this hypothetical drug if they had the opportunity. My view is that one of the best things about living to old age is acquiring wisdom and perspective. Of course young people have energy and knowledge, but wisdom and perspective can only be gained by experiencing as many things as possible. To be able to combine the energy of youth and the wisdom of age seems, to me, to be the realization of one of the ultimate dreams of mankind. I would love to be able to spend lifetimes just learning everything and then lifetimes just traveling everywhere and lifetimes doing everything. Eventually, I’m sure I’d tire of this mortal coil, but it sure would be neat to extend that eventuality indefinitely.

Everyone made their own good points, such as tiring of having to work for hundreds of years, who would be able to get such a drug, whether we’d still have children and how odd it would seem to have our great-great-grandparents and our great-great grandchildren all alive and all 30 years old. There were ecological, theological, technological and fiscal issues raised. For a hypothetical drug in a hypothetical scenario, people had quite a lot of concerns. I find the whole idea intriguing.

Eventually, we ventured out into the snow, piled into the car, and drove back home.

I’m going to miss these guys.

–Reid.

—————-
Now playing: Hypnotic – Balicky Bon
via FoxyTunes



Sometimes I Imagine The Battle Inside
Thursday December 30th 2010, 12:17 am
Filed under: Leukemia, Who Knows?

THE MICRO WORLD
MARROW BASE 7, SOMEWHERE IN THE LEFT SCAPULA.

(GENERAL WHITECELL is looking over battle plans. CORPORAL 6MP is attending his weapons station. COLONEL PLATELET enters precipitously and hands GENERAL WHITECELL a neuron.)

PLATELET: News from the top, General! Command says Oncol has removed Sergeant Oral Methotrexate from duty due to causing extraordinary pain.

6MP: First Intrathecal, now his kid brother Oral? Without him, there’s nothing to stop L.E.U.K.E.M.I.A. from replicating!

WHITECELL: Calm yourself, chemo! This ain’t a tear duct, this is bone!

6MP: Cell, yes cell!

PLATELET (quietly): General, Oncol believes Operation: Maintenance is far enough along that Sergeant Methotrexate’s absence will not affect the war.

GENERAL (examining the neuron): Thank you, Colonel. Corporal 6MP, get to work inhibiting purine nucleotide synthesis and then move on to metabolism!

6MP: Aye, aye cell, but it won’t have the same effect as Sergeant Methotrexate stopping rapidly splitting blood cells. That was his specialty.

WHITECELL: I understand that, Corporal, and so does Command, even with the current technical problems going on up there. They’ve decided to submit the entire R.E.I.D. to undergo testing in hopes of finding different painkillers to control Methotrexate. Until then, he ain’t coming back, son, and you’ve got the distinction of being the very last chemo Oncol’s left on duty.

6MP: What about Maj. Vincristine?

PLATELET: She could be back in a month or maybe even sooner if we can show some improvement on the Internal Organ Paralysis Front.

*ALARM SOUNDS*

WHITECELL: We’re moving out! Corporal 6MP, lay down some interference with nucleotide interconversion and glycoprotein synthesis!

6MP: Now that’s something I can do!

——————————————–

MEANWHILE, IN THE MACRO WORLD…

REID: So wait, why can’t I eat within two hours of taking 6-mercaptopurine?

TARGET EMPLOYEE: I don’t know, sir. This is the ladies undergarments department–the pharmacy is over there.

REID: The pharmawhat?

——————————————–

TO BE CONTINUED… MAYBE!

–r.

——————————————–

CHEMOTHERAPY DRUGS REMAINING IN MAINTENANCE ARSENAL

Prednisone: X [6/6/09]
Methotrexate (intrathecal): X [9/23/10]
Methotrexate (oral): X [12/29/10]
Vincristine: O*
6-mercaptopurine: O



Family, Trivia and Time Travel!
Wednesday December 29th 2010, 1:40 am
Filed under: Family, Friends, Leukemia, Who Knows?

(updated 12-31-10: see end of entry)

Today most of my mom’s family who are in town got together for breakfast to bid my mom’s brother’s family a fond farewell before they flew home to Florida. David, Trish, Lauren and Victoria, we don’t often get a chance to see you, so this was very special for all of us. I personally hope that we take advantage of the tools of our modern age, such as Facebook, to continue keeping in touch. It was great to see you all. Uncle David, I’m sorry we never ended up sitting next to each other and catching up at any of our massive family events, but there will be a next time. In the meantime, there’s always email. What an age we live in!

After breakfast, my mom and I went over all the health issues I’ve been having lately so that we’re prepared for tomorrow, when we will discuss my future with chemotherapy. Depending on how that future looks, I may also get an infusion of vincristine, which, for once, I am actually hoping for. I do not want to be taken off of chemotherapy, however with recent and recently revealed issues like my pain level, my need for more frequent use of my pain-wounding narcotics due to my pain level, my constant need for sleep, my stupid brain, some weird allergies, my paralyzed internal organs and heaps of other stuff, I would not be surprised if I am taken off at least one chemo drug no matter how well I might grimace.

I slept for a few hours in the afternoon.

My folks and I played trivia tonight. We were happy to have our fairly reigular team back together with the reiturn of the Reiparents (Reitriarchs? Reiyal Family? Reifecta? Joyce and Jeff?) to America from the Dominican Reipublic. We won the big monies after a hard fought comeback in the second round. It was a lot of fun.

After trivia, for reasons I will keep private, I wasted a bunch of time using math (mathing?) to arrive at the conclusion that when it is 12:00 AM on January 1, 2011 on Kiritimati, or “Christmas Island” as it is sometimes known, (which is “+14 GMT,” 14 hours ahead of Greenwich Mean Time), it will be 7:00 AM on December 31, 2010 in Colorado (GMT -7). Furthermore!, I also computed with my brain that when it is 12:00 AM on January 1, 2011 on Kiritimati, it will be 12:00 AM December 31, 2010 in Hawaii. Hawaii will exist exactly one day behind Kiritimati–and I have reason to suspect that it probably does that fairly often–which has enormous time travel ramifications! Think of the practical applications of being able to time travel exactly one day backwards or forwards! Man, this year they’re gonna have to give me the Nobel Prize in Flyness (named after Marty Mc, naturally).

Now the one thing here that might seem strange here is that I mentioned that I used math to figure this whole thing out. I know you must be thinking to yourself, “Self, Reid does not know how to use math correctly. In fact, if he got ahold of it, he might poke his eye out.” Which is a totally reasonable thing to think to yourself.

So what I’ve done is handed over all of my research to a (real) professional mathematician (seriously), who will be doing math at these numbers and determining if I am right or not. If I am wrong, which, honestly, is fairly likely, I will have to start wearing a Medical Math Alert Bracelet that indicates, in big bold letters, that if I have come into contact with math, please seek out immediate assistance. If I am right, you’d better get under your desk and duck and cover… the apocalypse is upon us.

I’ll let you know how that turns out… maybe even from THE FUTURE! Weeeelll… if I’m on Kiritimati and you wouldn’t mind going to Hawaii, that is. I think it would really add to the dramatic effect of this pointless endeavor.

UPDATE (12-31-10): The professional mathematician mathed my numbers, and I scored one right answer and one wrong answer (as they say in the pros, I got 2/3) we can all rest easy now knowing that the end of the world is not nigh. And I’m happy to say that it seems I can still use math as long as I’m wearing a helmet.

–Reid.



Casa Bonita!
Tuesday December 28th 2010, 1:01 am
Filed under: Denver, Family, Friends, Me, Myself, and Reid

I slept until five o’clock in the sunless afternoon today. I got up, responded to one or two emails, ate dinner and then laid on the couch and talked with my mom and my cousins Kristina and Ivan, who are staying with us this week.

Kristina and Ivan had just returned to our house after having dinner with Kristina’s mom, my Aunt Stacie, at a Mexican restaurant. Kristina laughed as she told us that one of the Mexican places proposed for dinner was Casa Bonita. They did not end up eating at Casa Bonita. Oh well, their loss.

Casa Bonita is both a real Mexican restaurant in Denver depicted with surprising accuracy on South Park and a spectacular destination for anthropologists who come to Denver to study 100% real, genuine, authentic 1970’s depictions of 19th century Mexico.

I guess when Casa Bonita came up, my cousin Kerri (Kristina’s younger sister) reminded her family that when my friend Christina [Reynolds] rolled into town looking for a wheelwright to repair a wheel on one of the wagons in her wagon train which was headed out west in search of gold, I took Christina, her boyfriend Alex, Boo and Andrew to Casa Bonita and everyone got sick from eating the food. (Well, Kerri said some of that stuff, anyway. Probably just the real stuff.) At almost the exact moment Kristina was describing Kerri’s well reasoned anti-Casa Bonita feelings, Christina Reynolds called my cellphone. She said she had sensed someone considering going to Casa Bonita to eat dinner and so she had to call and warn them not to eat dinner at Casa Bonita, but to still go there and eat dessert: Casa Bonita’s delicious sopapillas. Those things are delicious!

That was my day. I think I felt a little bit better than the day before. Which is good, even if it’s not saying much. It’s better than nothing.

In other news, I have not made a single phone call yet. As tempting as it is, I won’t count Christina as my first call since, y’know, she called me. Hopefully I will reach a point this week when I feel well enough to get started making those phone calls. If you want a call, just email me your phone number. I also do birthday parties, bar mitzvahs and corporate events.

–Reid.



Fourth Straight Day Of Waking Up And Partying! Wooo! College! Wait… no, that’s not it at all.
Sunday December 26th 2010, 11:59 pm
Filed under: Family, Friends, Health (Not Cancer), Leukemia, Who Knows?

This evening, we had a third straight night of family reunion partying, and it was my fourth night in a row of being at a party. When I say “party” here, I mean friendly people getting together, catching up, eating dinner and just sitting and enjoying each other’s company. Which I like.

Tonight’s party was a birthday party. We hosted my mom’s whole family (give or take) for my grandmother’s day-after-Christmas-birthday. There was birthday cake. It was carrot. It was good.

I slept all day. I’ve been doing that a lot recently. I’ve also had this body pain thing on top of my normal chemo pain for what feels like weeks (I haven’t the faintest clue of how long it’s actually been… stupid chemobrain timeline). Maybe the two are connected somehow. I wake up feeling bad and–pffft. That reads really dumb. Stop the presses! Have I got a scoop for you, Chief! Oh, the revelations! Amazing insights! Chemo makes people feel bad! Good grief. What I mean is that I feel sick and disoriented.

This evening, my mom woke me up at about six o’clock and told me people would be arriving soon. It was dark outside and I asked, groggily, why people were coming over so early. I thought it was six o’clock in the morning. These stupid short days in which the Sun rises at quarter to noon and is completely gone by quarter past noon, where dawn and dusk now overlap and nocturnal animals are only getting a few minutes of sleep, my brain feels like it’s spinning around in my head. I feel super disoriented. Super.

I don’t know what I need. I was going to say private awake time or at least a very small group of regulars when I wake up, but I don’t really know. I don’t mind these dinners at all. They’ve been with my family and friends, and I like everybody, I like being around them and I like talking to them. I like catching up with my cousins. I like talking to my aunts and uncle and my grandpa. I like admiring everything my three year old cousin does. Even still, I feel upside inside out disoriented.

Maybe I’m just anxious about chemo. I can’t wait to be off chemo, but at the same time, in a weird way I’m scared of the freedom I’ll have when I’m of it. Maybe chemo’s making my days and my health wildly erratic (maybe it’s not), but I want to stay on it until the end of the course in May. I know that I feel super disoriented and that I don’t like it. But I may just have to be disoriented.

I guess I just want to be oriented. Whatever that is. Whatever that should be now, four and a half months from the end of chemo. I think I’ll sleep on it.

That’s kind of my thing now.

–Reid.



Merry Christmas, Sorry I Missed Yas! I Just Want This All-Over Pain To Be All-Over.
Saturday December 25th 2010, 11:33 pm
Filed under: Family, Friends, Leukemia

(updated 12-26-10: see end of entry)

Sorry You Missed My Call: I never made it.

At some point during my time in college, I started making it a habit to call family and friends on major holidays. Some years it was a great way to talk to a lot of people from back home. Other years it was a great way to hear how everyone had updated their outgoing voicemail messages. Today, unfortunately, I continued to feel sick and so I took my painkillers, tried to sleep and didn’t make any of my intended phone calls (the narcotics bottles specifically say not to operate heavy machinery).

So I’ve set a new goal for myself: by New Year’s Day, I will call at least 25 people I don’t talk to on the phone much, if at all. I’ll also call people I talk to on the phone more frequently. If you want a call, but are worried I might not remember to call you, or that I might not have your phone number (or know I don’t have your phone number), just email me your phone number and I will give you a call. Even if I don’t know you, I will call you back. I will dub these seven days “The Ten Days of Calling.”

(12-26-10: email address added to the end of this entry)

Sorry My Brain Missed Your Call: It was out to lunch.

The day was not a total bust for talking to friends. Matt McDole and Elan Lipson stopped by our house separately today for a while. They probably both got to see me trying to keep my eyelids open by holding them up with my eyebrows. Due to pain meds, not conversation, of course. Thanks for coming by, guys, it meant a lot to me!

All-Over Pain: It’s all-over me, but it won’t be all-over for me until May 12, 2011.

It has been suggested that this all-over pain I’ve been feeling lately could be my body saying, “That’s it! You’ve forced way more than a lifetime’s worth of toxins, poisons and off-brand generic hospital sodas into me for the past three years; I’m outta here, let’s bounce.” But me and my brain are staying put. We want to ride this thing out to the bitter end. Even if that bitter end turns out to be exactly the way it’s been heading: very bitter.

Don’t get me wrong, I want to be done with chemo like crazy; I just want to finish it like we set out to finish it.

When I’m done with chemo on May 12, I think knowing I did everything I could do during the final months of treatment will give me a comfort I will need. Knowing that I did everything I could, I will not have to lead a constantly paranoid and self doubting life, constantly suspicious of whether I have leukemia again from totally unrelated ailments and thinking, “Welp, this is it! 89 years old and leukemia’s back! If only I’d made it through those last few months of treatment to the incredibly bitter end back in ’11, maybe this toe stubbing wouldn’t have such dire consequences!”

Also, if I end up having a recurrence of leukemia (c’mon body, let’s make sure that doesn’t happen; we can work… together), I will at least know that I did everything I could, even in the difficult final months. I wouldn’t be happy about it, but at least I wouldn’t be mad at myself for the rest of my life (until my untimely death in 2073, when I die due to complications from a stubbed toe) for doing three years and two months of treatment only to bail in the last few months.

Merry Christmas Dinner And Dessert: I feel like holly, jolly crap, but I’ll go say “hi” to everyone at least.

We went to Christmas dinner in my aunt and uncle’s neighborhood clubhouse. It’s basically a big space any of the people who live in the neighborhood can reserve for big events. And man alive, we needed that big space. Between our family and my uncle’s family, there were 40-some-odd people there. Roo and Boo weren’t there. Roo’s going to Israel in a few days and Boo went with Andrew’s family to Arizona for Christmas. But even without hiding behind my sisters, it was fun to spend time talking with my cousins, and really just to be around them. Many of my cousins who came into town for this Christmas reunion, grew up in Colorado and were here even through my being in the hospital back in 2008. I miss Kristina and Ivan, who are living out in Florida working, in different functions, in medicine. Kristina’s working to rehabilitate brain damaged veterans and Ivan is working towards his nursing degree. They’re great.

I also really miss Adam and Amy and their wonderful three year old daughter Noa, all three of whom are also great. They now live in Las Vegas, where Amy’s dad bribed them to live. He is putting Adam and Amy through college at UNLV so he can be around his granddaughter Noa all the time and take her to Disneyland and just otherwise bask in her majestic presence. Honestly, if I had the money, there might have to be a bidding war. Upon first seeing me tonight, Noa looked at me sternly and with genuine concern, told me, “I missed you–I didn’t know where you were.” There’s just no beating that.

It was great to just hang out with my cousins, and as an extra bonus, our cousins who’ve lived in Florida their whole lives that we rarely get a chance to see in person, fit right in to our group of cousins, husbands, wives and three year old Noas. (Okay, I’ll say it, Lauren and Vik are great, too.) I was also able to talk to some of my uncle’s family, specifically one of his sons, who is himself battling cancer and has been a huge inspiration to me these past few years. So ultimately, I’m quite glad I decided to push through my pain and attend.

Pickles The Puppy: Seriously, I need to go to bed—awlookatthatlittleface. Just loook at it! How could you not just fall right in wuv wif that cute widdle face?!! And so on.

I decided I need to head home and go to bed, but then I heard Aunt Stacie was bringing Pickles, her new puppy dog, to our house. Again I decided to push through my growing pain with my reserve battery powered energy, so I could meet Pickles. Pickles is a Cavachon, a Cavalier King Charles/Bichon Frise mix. She’s pretty adorable and she and Ferris were pretty funny together. Ferris is our dog, who we think is a full Bichon Frise (we don’t know for sure about either; they’re both from animal rescues).

Ferris wasn’t quite sure what to think of Pickles. She’s a puppy, so she’d let out this tiny bark letting Ferris know she wanted to play, but when he answered with his much louder bark, she would get scared and jump back into my aunt’s lap.
Pickles & Ferris

Oh Ferris, you sly dog.
Pickles & Ferris 2

At this point, I can do no more pushing through pain. I’m hurting all over and just need to crawl into bed. Good night, and have a very happy rest of Decemberween!

UPDATE (12-26-10): Whoops! I said to email me if you wanted a call, but I forgot to give my email address. It is reidlevin@gmail.com.

–Reid.

—————-
Now playing: Red Hot Chili Peppers – Wet Sand
via FoxyTunes



The Christmas Parade of Glass
Friday December 24th 2010, 11:14 pm
Filed under: Denver, Family

Lured in by the prospect of an all-family Christmas and/or sweet confections as far as the eye can see, there are currently more members of Mom’s side of the family (the Glasses er… Glass’) in our house than have been together under one roof since Boo’s Bat Mitzvah nearly ten years ago (July 14, 2001). All the cousins are here, save for Roo, Jeff and Brad. Oh, plus Jeff’s girlfriend Laura, who is fairly well integrated into the family whether she wants to be or not. The four of you are all missed by the rest of the family! Well, except probably not by those family members who are trying to hoard all the sweet confections for themselves.

I retired to the basement early because I’m still feeling crummy, but it sure sounded like they were having more fun up there without me, so I don’t feel all that bad. It’s really neat to have everyone around, and I’m looking forward to clumping together with my cousins (and not just because Boo and Andrew are going to Phoenix) tomorrow at Aunt Lise and Unkey Dick’s 40+ guest Christmas dinner. It should be a blast!

I realized tonight that between being sick, cleaning out my closet and writing a blog everyday, my calendar and my anticalendar have fallen behind. Those are all lame excuses–I just need to make sure I add upcoming events and note things that come up during the day. Seems easy, I just need to hold myself to it. It’s worked so far with my blog!

But if you want to maintain my schedule and my logbook for me, please respond to this post with your résumé. This is an internship so I don’t gotta pay you nothing. You need to be a college student, but not because you need to be able to receive college credit, rather so that I can be mostly confident in your ability to know what year it is. Dweebs need not apply.

Okay, dweebs, in the spirit of the holidays, you can apply too.

Merry Christmas!

–Reid.
Reid Levin, known dweeb.

—————-
Now playing: Barenaked Ladies – Maybe You’re Right
via FoxyTunes



Demon Horse, More On Morphine and… A Possible Flaw In The Curative Powers of Friendship!?
Thursday December 23rd 2010, 11:59 pm
Filed under: Friends, Leukemia, Who Knows?

Denver International Airport’s Demon Horse: At last, someone gives this horse the attention it deserves.

Tonight on CNN.com, there was a story about “Denver’s infamous airport horse.” I tried to turn this into an elaborate Broncos/Tebow joke, but it just didn’t compare to the actual information about the horse.

For instance, this statue fell on the artist who had just completed it and killed him. And how about the fact that this horse statue isn’t really a statue at all, but rather an actual horse–a demon horse no less–tasked with guarding the entrance to another dimension called Haz’hou”ta’hou”tek, a hell dimension of incomprehensible horrors, insufferable pain and other bad stuff like constant door-to-door salesman who keep ringing your doorbell over and over and over until you answer the door and they start talking and talking and talking and they just can’t take a hint, and after an hour, when you’re finally able to push them out the door, they give you their card and tell you they’ll be back later after you’ve had time to think about their product. Or about them. *shudder*

It’s also just one scary looking demon horse if you ask me.

Morphine: A to-the-point and frank conclusion to yesterday’s entry.

My oncologist prescribed me three different narcotic drugs to be used as painkillers when I am in enough pain to merit using them. For me, each has been useful for different kinds of pain. One of these drugs is morphine. I do not take it often, but there are times when I know it is the only drug that will give me any relief from my pain. And sometimes, if I have too few platelets in my blood, I’m not allowed to take anything but these three narcotics. “Body aches? Don’t take Advil, take morphine!”

The Pain Management Clinic at the hospital reviews what drugs have been prescribed for my pain since I am a long-term patient and they want to make sure that a) I’m getting the drugs I need to be comfortable and that b) I’m using the drugs I have responsibly in the way they are intended to be used. I have consistently been okayed by the Pain Clinic and have even been told that in certain circumstances, I should be taking my narcotics or more narcotics when I’m not normally inclined to do so.

Inevitably, however, the next time I go in to see my oncologist, he will ask if I’m off any of the narcotics he prescribed me. This is confusing and frustrating for a number of reasons. Among them, it is not as if, somehow, all of a sudden I’m going to start experiencing less pain from the same exact chemotherapy pills, pushes and infusions that I’ve been receiving since May 12, 2008. I know that chemotherapy does weird, random things I can almost never plan for. But there is almost always one constant: pain. Despite the pain, I keep pushing ahead because I must keep pushing to the end. I can’t stop early. I’m four and a half months from being done and I have every intention of crossing that finish line.

Unfortunately, I feel like a pariah when I take morphine, despite years and years of being told if I need it, there’s no reason to remain in pain. Sometimes my pain gets too big to handle because I don’t want to say, even to my parents or honestly, to myself, “I am in pain, I need to take morphine.”

My doctor’s questions reveal more that there is a lack of communication between the different clinics within the same hospital than a lack of concern–which is certainly not a problem; everyone clearly cares and wants what’s best for the patients. That lack of communication leads to a lot of uncertainty, though. What am I hearing? Opinions? Hopes? Orders? I don’t know, and it all gets mixed around in my brain, which is already overloaded with confusion, fear and anxiety and I don’t know what I should be doing. Well, except for right now.

I am in pain all over so I need to take morphine, which will take away enough pain to enable me to go to sleep.

Annual McDole Christmas Dinner/Reunion: Great to see friends, though my high expectations for this wonderdrug were probably a bit over the top.

Every year since our group of friends split up and traveled to the four corners of the earth to attend college, Matt McDole and his exceptionally gracious parents have hosted a Christmas dinner for our group to come together for a night to rekindle some of that magic we have when we’re together. I’ve only been attending this dinner for a few years since, before I had cancer, I celebrated Christmas with Amy’s family in Connecticut for many years, which was a different kind of tradition, but one I was quite fond of.

I may have been to one of Matt’s dinners in the past ten years before I had cancer, but there are many years of photographs missing that might offer some clue. The only photos currently on Facebook (the be-all, end-all source) confirm my attendance at the McDoles’ in 2008 (I’m bald in the pictures because I was undergoing radiation at the time), 2009 (last year; my hair had grown back) and now 2010 (tonight; and I’ve needed a haircut for a while now).

In all honesty, I felt horrible all day today. This intense pain all over my body is just terrible. A full on attack of every knuckle, every nail and every hair is really wearing thin. I slept, or tried to, all day. I planned on going to the Christmas dinner with almost full certainty, even if I was still laden with pain. Many personal experiences over the past few years told me that being with a group of close friends would go a long way in making me feel better.

Of course, I wanted to see my friends to catch up with them as well, not just to take advantage of the healing effect they posses. Although only a few friends were in town for tonight’s celebration, everyone seemed to enjoy the more intimate conversations the smaller group allowed for. Unfortunately, for whatever reason, the magic spark I was counting on to make me feel better just didn’t turn into a flame. Out of desperation, I even tried my backup way to feel better. It’s worked a couple of times here and there: smile big, act healthy and happy, and ultimately try to fool my own body into thinking it’s actually feeling great. That didn’t work either. The amount of pain was just too much for magic tonight.

That said, it was really great to spend some time with Matt, the de Mahy sisters, the Sullivans, Heidi and Millman. In fact, I even got to say hello to some of Roo’s friends who were in the other room for Matt’s sister Tiffany’s own Christmas dinner which was running concurrently to ours. Again, a big round of thank yous is clearly owed to the Parents McDole, who not only allowed two separate Christmas dinners to go on at the same time in different parts of their house, but who also cooked and cleaned for both groups. Thank you very much, Sandy and Matt Sr.!

As for the magical restorative powers of friendship, I’m not giving up on them by any means. I was just too sick to rely on magic tonight to make me feel any better physically. However, spending even the too-short-a-time I spent with my friends tonight lifted my spirits. I may have left in an enormous amount of pain, but I had a real smile on my face.

–Reid.

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Now playing: Coldplay – Death and All His Friends
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Pain, Morphine, Steroids and Baseball, plus… Don’t Ask, Don’t Tell and Other Lame Duck Accomplishments!
Wednesday December 22nd 2010, 11:47 pm
Filed under: Leukemia, Liberty!, Sodapopcornculture

Another day, another day of feeling like I was hit by a truck. Well, I’ve never actually been hit by a truck and I don’t mean to offend anyone who has been hit by any sort of vehicle; this is just what I imagine being hit by a truck might feel like. What I know it feels like and can accurately explain from personal experience is being on steroids used to treat leukemia (not the kind of steroids baseball players are given with their hats and uniforms).

I remember the first dose of steroids I took as a chemotherapy drug. I had taken steroids before for sinus infections, but the amount I was taking to fight leukemia made the amount I was taking to fight sinus infections seem like SweeTarts. I remember being at home in bed when I first felt the effects of taking such a high dose of a glucocorticoid steroid (as opposed to anabolic steroids like the ones baseball players are given every time they’re “on deck”) I woke up and felt like I couldn’t move. I had taken dexamethasone (or maybe it was prednisone, a corticosteroid) the night before, had slept through the night but woke up feeling like I was bound with heavy chains to my bed. I called for help. My body just hurt too much to move and so my brain was saying, “don’t move!” It was scary.

I haven’t been on steroids since June 2009, when I had my third and final case of pancreatitis. I had been in maintenance for just over a year, and had been taking prednisone on a regular schedule that whole time. These steroids are particularly good at suppressing the immune system and they play a huge role in stopping leukemia, whose modus operandi is to take over white blood cells and replicate over and over. After that last case of pancreatitis, when I left my body to cruise around the universe for ten days, however, someone decided the risk vs. reward was too heavily weighted on the risk side.

As relieved as I was to be free from the pain, I was actually quite afraid to go off the steroids. They were the first maintenance drug I went off and I was scared, just as I was when I went off IT methotrexate even though it nearly gave me a stroke, that we were letting my defenses down. Frankly that still scares me. I try not to think about a sleeper cell of leukemia hiding in wait for all chemo to end and then repopulating my body because the defenses have been so compromised.

I got a bit off topic here. I’m tired and my eyelids are heavy, so I’ll try to pull this back to where I wanted to be. My intention in mentioning steroids was to explain how they made me feel and how I’ve felt that way several times in the past few months despite not having been on steroids for a year and a half. I am surrounded by, and filled with pain. Every joint, every bone, every muscle and sinew is crying out in agony. Once again, just like two weeks ago, Mom called the docs, who said to hold the oral methotrexate tonight since I’m in so much pain.

Pro: I won’t have that three to six day methotrexated feeling.

Con: Three maintenance drugs down mean that imaginary sleeper cell I fear gets another bye week.

I guess I should note that no doctor has ever indicated that they are worried about my lowered defenses allowing leukemia to create a plan, bide its time, and strike when my defenses are at their weakest. In fact, as I’ve mentioned in other entries, my oncologist has suggested (on more than one occasion) going off one or two other maintenance drugs, too. It’s been a very difficult run for me and I feel the more that can be done to make sure there’s not a recurrance, the better.

I really wanted this entry to be about morphine, but it keeps getting away from me and I really want to go to sleep. Here’s what I have to say about morphine tonight: when I feel like I do right now, like I’ve been hit by a truck carrying immunosuppressive steroids (as opposed to a truck carrying the kinds of steroids famous baseball players advertise on Nickelodeon, Cartoon Network and the Disney Channel), the only thing that gives me any relief is usually morphine. I have been prescribed several narcotics for use when I feel I need them. Each helps in different circumstances, and in this particular circumstance, morphine is the only one that helps.

I don’t like taking it. Taking it makes me feel like a pariah. It makes me feels like I’m doing something bad. It feels like my oncologist wants me off of it. It feels like it’s associated with recreational and unnecessary drug use. It feels like giving a patient three kinds of narcotics to manage their pain at home where one bottle contains 90 pills, one contains 60 pills and one contains 30 pills creates the impression that taking three of one drug is the same as taking one of another. There are more reasons and things I want to say about morphine, but, quite honestly, I took some over an hour ago and it’s made me too sleepy to keep typing.

I’ll follow up with more thoughts about morphine and other narcotics at some point down the line. For now, I’ll just say goodnight.

Goodnight.

Oh… wait… I’m adding this to the entry:

I should also mention how truly happy I am about the vote to phase out the discriminatory “Don’t Ask, Don’t Tell” policy from the United States’ military, the vote to support ratifying the START nuclear arms reduction treaty with Russia, and the vote (that should have been a no brainer all along) to adopt the Zadroga bill to help the surviving first responders of 9/11 by giving them money to pay for things like chemotherapy and radiation to fight off three different kinds of cancer in a single body. Great work, Mr. President and everyone else who positively contributed to making these things happen. I finally feel like some of the most important things to me have at least been heard. Not all the things, but it’s a good start, better late than never. If only net neutrality hadn’t been–

HA HA HA >> WE I wAS JUSt K!dDING Ab0Ut NEt NEUtRaLITY >>>> WHA7eVER tHaT 1S > IT S0uNDs DUMB >>>

>>>>>> _

C0McASt & AT&T ARe 0UR >>>> NEW CYBER-OVERLoRDS AND ! WeLComE THeM W1TH AN 0PEN H3ART ANd AN >> OpEn WALLET >>>> 1000100011101011001 >>>> transmission complete… Ω

–Reid.01

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Now playing: CAKE – Let Me Go
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