BMT 74: My 32nd Birthday. My Second Relapse From Leukemia.
Monday July 27th 2015, 10:16 pm
Filed under: Denver, Family, Friends, Leukemia, Me, Myself, and Reid

As many of you may have heard, I have relapsed a second time with leukemia. Although I cannot remember a lot of what happened last week due to my leukemia treatment, I do remember that there were a lot of people here to support me, many of whom were from out of town: my cousins, friends from high school, awesome (no longer on-line) support group friends, family and the biggest surprise of all, my sisters, who decided to move here from Washington, D.C.

Hot Dog Go Now Awesome FIX forever

After I was unable to do anything for my big sister Rachel’s birthday, she brought me a hot dog the next day in honor of National Hot Dog Day.

Although I have not felt like myself much over the past couple of weeks, I receive my greatest strength from my friends and family. In the coming days and weeks, I hope to continue to see them (you!).

We are hoping that I will be accepted in a clinical study in Seattle. The doctors there are doing amazing genetic work with leukemia.

Tomorrow is my 32nd Birthday. Despite everything, I will be glad to reach this milestone and share it with family and friends.


BMT Day 60: Nothing Much To Say Tonight
Tuesday July 14th 2015, 9:37 pm
Filed under: Leukemia, Me, Myself, and Reid

I’ve just been feeling too sick to write today. I’ve got some good subjects to write about, I just need some good days on which to write about them.



Oh yeah, yesterday was Ferris Bueller (the dog)’s birthday (the day we adopted him, and he adopted us, not the day which he was born). He’s seven. There you go; a factoid!

(note: I’d originally mismarked this as “Day 61.”)

BMT Day 57: Pain, Lymph Nodes, and Milkshakes
Saturday July 11th 2015, 10:56 pm
Filed under: Family, Leukemia, Me, Myself, and Reid, Sodapopcornculture

I spent the day in bed and in pain. At least I wasn’t beating myself up. I think I was in too much pain for that.

My Aunt Cindy came over to visit while we had lunch, which was nice. It’s always great to have someone around I don’t get to see everyday.

After lunch, I slept off and on, which has basically been the story of the painful lymph nodes around my neck.

We watched some of “The Comedians” on FX on demand and the commercials that play over and over about getting half-priced shakes after 8PM at Sonic finally wore my dad down. He went to Sonic and bought us all shakes and we watched one more episode of “The Comedians,” before I stumbled off to bed.

I was so dizzy, I had to have my mom make sure I got in bed okay. Which is where I am now. Hopefully I’m going to fall asleep in a few minutes and feel all better tomorrow.

Here’s hoping!


BMT Day 53: Big, Spontaneous Bursts Of Momentary Energy For Small Thngs.
Tuesday July 07th 2015, 11:02 pm
Filed under: Leukemia, Me, Myself, and Reid, Sodapopcornculture

Although my neck is finally feeling better and turning at all angles without pain (not like an owl, like a normal human–and not like a human with owl powers, just a regular human), I’m still having headaches and stomach aches. Still, I think energy-wise, this was one of the best mornings I’ve had in a while.

I took advantage of the energy I had and I took care of some things I’ve had to get done for a while, which proceeded to knock the energy out of me like the Sun being thrown in the East River (why did those Spider-Man movies get a third sequel and the new ones don’t?)

Sorry… where was I?

Oh yeah. NOT nerding out, THAT’S for sure. So it was another day of realizing I’m not as strong as I want to be. It makes perfect sense, probably more so from looking in than looking out, but I’m constantly amazed at the energy I don’t have. Even to do little things.

We watched “Falling Skies” on TNT tonight and then some of the very funny “The Comedians” on FX.

I have a PT coming over in the morning, which I believe will sap all my strength for the rest of the day. So I should try to get ahead of that my by going to sleep.

Goodnight all,

Day 35-36: The Truth Is That I’m Finding This Very Difficult.
Tuesday June 23rd 2015, 6:32 pm
Filed under: Leukemia, Me, Myself, and Reid

Day 36. Tuesday, June 23.  I really thought that once chemotherapy and radiation ended, I would be in the clear.  I thought I could blog everyday about what happened that day and about something I hadn’t yet blogged about from the past several months.  There are a lot of leukemia, hospital, and explanation stories.  But it hasn’t worked out that way.

That kind of jokey thing I keep repeating, “Should I blog today?   I should blog today, but I’m too tired,” that’s really how I feel.  In fact, there are very few days I feel up to doing much at all.  I sleep a lot, way more than I remember being capable of sleeping.  When I’m not sleeping, I’m exhausted, and my body wants me to be sleeping.

I try to reject that the best I can by reading a comic book here, watching some TV there, playing some music, or, if I’m really feeling like a pissant, I try writing in my blog.  My problem is that I simply can’t write every day.  It takes way more energy than I ever knew.  Not to mention all that other stuff.  Most days I just sleep and get mad at myself for doing it.

My nurse in the BIC yesterday (Day 35, Monday, June 22.) said something that made me feel a lot better than I’ve been feeling about myself lately.  She said that, originally, I had ten months to develop my bone marrow in my mama’s belly.  Now, though, I’m only 35 days old.  All of a sudden, that “new birthday” thing made a lot of sense to me.  She told me no one was expecting me to do more than I could do and that this is how it’s expected to be.  I’ve been hearing that a lot, “You’re supposed to be exhausted, you’re supposed to be in pain.  It’s okay, that’s how you’re expected to be.”

Frankly, that got irritating.  But when my nurse yesterday explained it in terms of age, it made a whole lot of sense.  I was also told that BMT is harder than chemo and radiation.  No one had ever told me this before.  It was a refreshing–if not long overdue–revelation.

I’m going to stop trying to write news for every day I’ve missed for right now.  It just makes me feel guilty.  In a perfect world, I would be collecting notes every single day since Day 0, and in a really perfect world, since January.  But my body is dedicated to creating bone marrow and changing over to Rachel’s immune system right now.  That’s where all my body’s energy is right now, and there’s absolutely nothing I can do to help it, except to stop fighting it and do what it says.  Which means sleep a lot and not write so much.

Which sucks.  What is a writer who doesn’t write?  I keep asking myself that.  But the true answer is something much harder for me.  But it’s a better question: What is a BMT patient who overdoes everything for the sake of satisfaction?  The answer is “sick.”  So I’ll keep writing when I feel up to it.  I will try my hardest not to beat myself up about that.  In the meantime, here’s some recent stuff that’s happened:

1) I received a bone marrow aspirate on Day 26 (Wednesday, June 10), the results of which showed that Rachel’s cells have taken over 91% of all systems they’re supposed to, except for my t-cells, of which her cells have only taken over 65%.  T-cells are the memory cells that learn how to fight off viruses and bacteria and even leukemia.  I was taken off one anti-rejection medication (don’t worry, I’m still on two more) in the hopes that that will strengthen her stem cell army’s resolve.  At this time, it’s not considered a big deal.

2) Over this past week-and-a-half, I’ve had this growth in my neck, right under my chin.

2.a) My beard fell out on some day I feel I haven’t published.  So, anyway, I have a “chin” now.

Back to 2) This growth hurt a lot.  Between seeing several nurse practitioners, having two ultrasounds, four CAT scans, and a procedure to go into my neck and pull out whatever was in there, it turns out, it was “an infection.”  It wasn’t a swollen lymph node or a tumor or lymphoma, it was just “an infection.”  Luckily, one of the nurse practitioners had put me on a very strong antibiotic before running all of these tests, so by the time the tests were done, I was already feeling better.

3) Today,  I wrote some new music for a song Joe wrote.  That was fun.  I need to keep practicing.

I’m tired now so I’m going to sleep before I get woken up again for dinner.

BMT Days 15 – 22: “Should I be blogging? I should be blogging, but I’m too tired.”
Thursday June 04th 2015, 8:36 pm
Filed under: Attack Of The Internet!, Family, Friends, Leukemia, Me, Myself, and Reid, Sodapopcornculture

Every day since through the bone marrow transplant process begun, every day has had a number.  The day of the BMT, itself, was Day 0. The numbering of days climbs from there.

You may be wondering whatever happened to Part 2 of that last post, where I talked about the countdown to BMT.  I’m still working on it.  Days 1-14 are all coming together in a blog entry, but I’ve decided not to make it my primary concern right now, so that I can instead post more frequently about more recent days and their goings-on.  As predicted in my last post, I have been saying to myself, quite often,”I went to the outpatient BIC today and slept the rest of the day. Should I be blogging?  I should be blogging, but I’m too tired.”  Well, I am too tired right now, but please allow me to present last week through today, anyway, where we begin with last Saturday, Day 15:

Day 15. Saturday, May 30th.  Dad and I visit the outpatient Bone Marrow Infusion Center (BIC).  They drew blood like they normally do.  Dad and I both fell into a daze, then a doze, even though we’d both brought work to do.  I brought my iPad for blogging, but that sure didn’t happen.  Unfortunately, for just checking my blood counts and electrolytes, it takes much longer than anyone might expect.   After my blood is drawn, it’s sent down to the lab, which I gather only has one working machine, that is operated by a badger or maybe a ferret, because it can take up to two hours to get my results back so I can be released from the BIC.   And if something shows up way out of range, even though we’re looking for all the parts of my blood to be going down, I sometimes need to get a transfusion, which adds additional hours of BIC time.

But everything was just fine today.  Day and I awoke to the great news that I would no longer have to visit the BIC every day of the week and weekend.

I took a short nap when we got home.  I woke up for dinner with my maternal grandparents, Gigi and Papa (not their real names).  It’s always nice to see them and I think they appreciate seeing me and getting real-time updates about my health straight from the horse’s mouth.  Fun fact: my handlers put peanut butter in my mouth to make it look like I’m speaking.  I go in and do the voice overs later.  No wait, that’s how they did Mr. Ed.  I get us confused all the time.

As soon as Gigi and Papa left, it was time for more of the BBC’s Sherlock on Netflix.  We watched the final episode of the first season, “The Great Game,” which, like most season finales, was a big cliffhanger.  We couldn’t stand not knowing what happened, so we moved right on to the first episode of the second season,”A Scandal In Belgravia.”  I sense a particularly big problem with binge watching this show: there are only three episodes a season and there are only three seasons!  But man, this is just too great a show; we can’t slow down now!

Day 16. Sunday, May 31st.  My first day not attending the BIC since my BMT (discounting that stupid weekend I spent in the hospital).  Originally, I attended the BIC all seven days a week.  From now on, I’ll only be attending the BIC on Mondays, Wednesdays, and Fridays.  I still can’t travel anywhere besides doctors’ offices, the hospital, and home.  Since the BMT, I’ve been very fragile, like a fabergé egg.

I got to play my Star Wars RPG with my normal group of in-town nerd friends, but we played over the Internet because of my fabergéness.  They’re good friends for putting up with my schedule and fatigue and playing over video chat when I don’t feel well.  Yes, I just admitted to what is probably the nerdiest thing I do.
I took a nap and woke for dinner.  We took a break from watching Sherlock, because I was so exhausted and in pain, and I because I wanted to watch Last Week Tonight With John Oliver.  That show is so up-to-the-minute that I feel like I have to watch it live or I’ll be out-of-touch with all the jokes and the no-longer-surprisingly great journalism about things I previously had no clue about.  That last sentence sure was filled with lots of hyphens.
Day 17. Monday, June 1st.   I saw my psychologist in the morning and went to the BIC at 1:00.  At the BIC, they draw blood from my trifusion line, which, just to remind you, has three catheters suspended outside of my body, dangling on my chest.  Those free me from needing to get poked with a needle when they take my blood or infuse me with anything.  They’re looking at my blood to monitor two important things: first, my blood counts, things like my white cells, my hemoglobin, and my platelets.  They want all those things to go down, and that’s the way they’re going; I can literally feel it.  The other thing they’re looking at are my electrolytes, things like magnesium, potassium, and my ability to sweat in cool neon colors while dunking the ball, like in those Gatorade commercials.  Sometimes they need to supplement my electrolytes so that certain parts of my body–like, say, my heart–continue working.

I am being monitored as all my blood counts hit rock bottom which precedes–I’m told–my counts eventually going back up.  This whole “moving to three days a week” thing means that my doctor has confidence in my progress, even though I’m feeling so lousy.

I came home, where I tried to continue blogging, but fell asleep.  I woke up for dinner and an episode of Sherlock, called “The Hounds of Baskerville.”  I love how how so many things in this show–including this title–refer to original material by Sir Arthur Conan Doyle. Plus, I found out while Wikipediaing (a totally legitimate hobby), that there are references or allusions made to many of the early movies, which began in the silent film era (which quickly became the age of talkies because people really hate reading) (but please don’t stop reading this).

(Thanks, I just knew I could count on you!)

Day 18. Tuesday, June 2nd.  A day of rest.  Mom wasn’t feeling well and had to lie down on the couch.  That’s supposed to be my job.  I fell asleep in the armchair holding my iPad, which I intended to use for blogging, until  I received a screening call from a coordinator of an online cancer support group in which I’m going to take part this summer.  They already gave me a brand new iPad Air, on which I would video chat with other people that are going through something to beat cancer (chemo, radiation, BMT, etc.), if I did not already have a better iPad that my friends gave me.  I think I’ll probably sell this new one.  Oh, and as for the screening, I am apparently sane.

I eventually went to bed and fell sleep for a few hours.  When I got up, we ate dinner and watched the final episode of the second season of  Sherlock.  It’s called, “The Reichenbach Fall,” which is a great title, though a spoiler for anyone that’s read the books.  I can’t recommend this series enough.

Day 19. Wednesday, June 3rd.  Back to the BIC.  Today, we see a Nurse Practitioner (NP).  They’re generally in charge of everything both in the BIC and back in the inpatient cancer floor.  They talk to the doctors and carry out their will.  Every so often, I get a pre-planned visit in the BIC from an NP, my dietician, my oncology psychologist, or even my actual real BMT oncologist (a rare, but always informative event).

I’m feeling lousy.  Really lousy.  I’m assured that for Day 19, this is perfectly normal, and what they want to be seeing.  Why are they looking for my counts to hit rock bottom–to hit my “nadir” in sciency terms?  Because they want my cells so give Rachel’s cells free passage into where they need to be, and grow the way they need to grow, and they need Rachel’s healthy cells to clobber my previous immune system, which will be easier if my immune system doesn’t fight back.  I would never fight Rachel.  She would kick my ass.  Which really makes her my perfect donor.

So the reason I’ve been so extremely exhausted all of the time is because my body (well, except for my old immune system, which is hopefully off dying somewhere)is devoting all of its energy to the grafting process and building a new immune system with Rachie’s cells.  And I’m in constant pain because, I suspect, all of the stem cells are going into my bones, which is not the direction they normally go, and certainly not in such high volume.  So, while I’m feeling physically flat-out bad, I’m mentally and emotionally happy to know this process is working as planned.  Only narcotics and my bed can sooth me in any noticeable way.  I do not like narcotics and and I do not like spending all day in bed.   I try blogging, but I’m too tired.  I play the piano mindlessly for a while and then go to bed.

I wake up for dinner and an episode of Sherlock.  First, we watch the BBC mini-epidose interlude between seasons two and three, called “Many Happy Returns,” on the BBC YouTube channel,  Then watch the first episode of the third season on Netflix.  It’s called “The Empty Hearse.”  This is the first time having a smart TV has allowed us to do anything really cool to justify its existence, going between YouTube and Netflix on the TV.  I’m just happy for the extra bit of Sherlock.

Day 20. Thursday, June 4th.  I have noticed over the past few days that my beard is falling out.  Yesterday, I asked the NP about it, who told me that any follicle growth within six weeks of my chemo might not be stable.  Boy, was she ever right.  When I wash my face and put lotion on it, big handfuls of beard hair fill me with grief.  I think this was my best beard ever.  But it’s clearly going to have to go.  I get out the trimmer, chipping away at pieces of my beard so it looks funny, until finally… it’s gone.  I have a babyface once again.

My PT and friend of many years, Jackie, stops by to see me and my mom, and of course, Ferris.  She’s just one of those people that has a way of brightening our day whenever we see her.  That was great.

Worried that the calluses on my left hand are wearing away, I get out my guitar, put the strap over my shoulder and back around my neck.  I set my fingers to play a chord.  Suddenly, the guitar feels very heavy, so I set it down and open my computer to blog.  I’m seeing two of everything.  Time for a nap.  If there was dirt in here, I would kick it.  At this point, I’m really annoyed with myself for not blogging in such a long time.

No Sherlock tonight, because Dad’s out on official business.

Day 21. Friday, June 5th.  Mom takes me to the BIC.  I have decided that the best thing to do in regards to my blog is to forget about following the last entry up chronologically, and just write about the past few days, and eventually get back to filling in the days between my last entry and this one.   I brought my iPad to the hospital, took a painkiller and promptly fell asleep for the entirety of our time there.  Nothing noteworthy happened at the appointment except that my white cells have jumped up a bit (I believe this means the coup d’etat on my immune cells has been successful by Rachel’s forces).  After lunch, I slept.  I woke up for dinner with my Aunt Kadra and my Uncle Danny, who brought over Piccolo Pizza, which was delicious.  It’s always a joy to be around them, because they’re both really interested in finding out about my health and they amuse me so much by just being their normal selves.

After they left, we watched the second episode of the third season of Sherlock on Netflix.  This one was called “The Sign Of Three,” and like all the others have been, was spectacular.  My parents both wanted to watch the heretofore final episode of the series.  It will be the last one until a Christmas full-episode special the BBC is making right now and then season four will come out sometime in 2017.  However, none of this had to do with my hesitancy to watch the final episode.  I simply felt I couldn’t stay awake for it.  So I went to bed, confident we’d have something nice to watch tomorrow night.

Day 22. Saturday, June 6th.  Today.  I have not felt well all day.  I woke up, ate breakfast, took a dilaudid (narcotic painkiller) and went back to bed.  I got up for lunch and decided I was really going to hunker down on my blog.  Especially since I’d received a few messages today checking in on me.  While that was very nice, some people didn’t realize I was out of the hospital and some who did, didn’t understand that they could come visit me.  So I want to clear this up right now:  I haven’t been an inpatient in the hospital for two weeks, I’m at home and if you give me a call, we can plan out some time for a visit.  It would so awesome to see you!

Today may have been the only day I wrote about, because I wrote it and then went back to sleep.  But I couldn’t sleep well due to being I’m in so much pain.  So I got up, figured this would be a distraction from the pain, and I wrote back a full week, which sort of surprises the hell out of me.

I’m going to try to sleep now for a while, before I get up to eat dinner and watch the last episode of Sherlock (for now).

Forgive me if this entry is sort of jumbled–that is what my mind has been since BMT.  I feel like I’m in a fog and can’t think as clearly as I want to.  Certain words hover just out of my thought process which makes both conversation and writing slightly frustrating.  I think this could be the result of some good ol’ chemo brain, which I certainly had last time and even for a few years after treatment ended.

Oh well, I’m pleased I’m finally getting a blog posted!


P.S.  If it’s not clear by now, I highly recommend the BBC’s Sherlock, starring Benedict Cumberbatch and Martin Freeman.

Oncology, Numerology, Boredom.
Monday May 11th 2015, 10:18 pm
Filed under: Family, Leukemia, Me, Myself, and Reid, Who Knows?

The oncology floor called at 7:45 this morning and said they had a room ready for me. I checked into the hospital 10:30ish. I got an x-ray, labs taken, and an hour long dose of chemo at 6:05 this evening. I’m not complaining–I’ve been on chemo 24/7 before that made me sick as a sick dog–I’m just finding that there is, indeed, going to be a large boredom factor here.

I noticed something interesting (to bored me) this morning that I somehow missed before.

Wednesday will be my last day of chemo, hopefully forever. The date will be May 13, 2015.
I finished my last dose of chemo from my last fight with leukemia on May 12, 2011.

I was first diagnosed on December 6, 2007.
This time I was diagnosed on January 6, 2015.

When I was diagnosed this year, on January 6, it was the day before the seventh anniversary of my first remission.

I’m clearly not a numerologist, but if I was, I think I could find some crazy patterns to be crazy about here.

Tomorrow and Wednesday, I will do nothing but receive chemo at 6:05 PM. Thank you to everyone that kept me awake today.

Rachel received two shots in her stomach today. They tried to stick her in the fattiest part of her abdomen. Rachel doesn’t have any fat on her body. So she was in pain just from the shots. 24 hours after the shots, she’ll start to feel like she has the flu. Rachel’s actual suffering for me. I’m just bored.

I’m very lucky.


17% Body Weight Gone, The Mystery Of The 13.7%, Use Of Percentages In Title: Up 100%.
Thursday March 12th 2015, 9:38 pm
Filed under: Family, Leukemia, Me, Myself, and Reid

I just found out that I’ll be in the BIC for five more hours today, after waiting an hour for my labs to come back.  It seems I have low hemoglobin, which explains some of my dizziness over the past few days.  It’ll take five hours to type and screen me (make sure I’m getting compatible blood; very important) and get the replacement blood I need.

It seems like a good time to write.

Due to bizarre circumstances, I’ve found myself an outpatient in the BIC all week without chemo.

One day I came in to talk to JJ, the nutrition specialist. I’ve lost 17%(!) of my body weight since beginning chemo two months ago.  That’s over 50(!) pounds!   That’s over 22(?) kilograms!  While I’ve achieved my target body weight, it was by one of the most unhealthy means possible: cancer and toxins melting my muscles.

I don’t recommend this diet to even the most desperate of weight-loss-seekers.

I now have to eat 2,200 calories a day to just to maintain my body weight.  I’m not gaining much–if any weight–right now.  I’m also eating a lot of protein in attempt to get back some of that melted muscle.  I’m drinking a bunch of high protein drinks and eating a lot of high protein bars.  If I were exercising intensely every day, I think 2,200 calories a day would be easy to eat, but as it stands, it’s hard to get that much down.

I think my biggest motivator is that JJ has said that if I don’t stop losing weight, we’ll have to explore “alternative methods” of keeping my weight up. For me, this brings up bad memories of the last time I had leukemia, in which I had tubes up my nose, going down to my stomach, delivering liquid nutrition.  I don’t ever want to do that again.

Speaking of things I don’t like: bone marrow aspirates and inappropriately quick talks about important and/or surprising subjects regarding my health.

I reported in an earlier blog entry that I was down to 1.3% lymphoblasts according to my latest bone marrow aspirate.  Lymphoblasts are misbehaving white blood cells that cause leukemia.  When I first came into the hospital, 90% of my white cells were blasting.  After my first round of chemo, that number was down to 30%.

These numbers are gathered from the three things that are removed from the pelvis during a bone marrow aspirate: the marrow, the liquid around the marrow, and the core of bone.  Those things are then sent out of the hospital for examination. The first test that’s run is on the liquid around the bone.  It’s put on a slide and observed under a microscope, where the number of visible blasts are counted.  This takes about two days, including travel time.

It was after the slide from my last bone marrow aspirate was examined that I was informed that my blasting white cells were down to 1.3%.  Yippee!  This seemed to be well within the 3% to 4% range my doctors had talked about to go on to my bone marrow transplant.  However, my doctor decided that, because, a) I responded so well to the second round of chemo, and b) he was now worried about my special case (I can’t take anywhere the amount of steroids they normally give, because it could give me the dreaded pancreatitis) that I’d go through the exact same protocol I’d just been through with the hope of getting me down to 0% blasts.

In contrast to the slide, the core takes longer to examine, which I think has to do with it being sent to a specialty lab in Seattle.  After being sliced into many pieces, it, too, is observed under a microscope by expert pathologists.  The number of blasts identified in the core normally match those from the slide, or, in some cases, are lower.

During my last inpatient stay (two Wednesdays ago through last Saturday), through a series of questions and complaints, my mom and I were able to meet with my leukemia doctor.  This was only the second time since being admitted that we’d met with him, and under the same necessary questioning and complaining methods .  Normally, the doctors are invisible and can only be contacted through nurses.  However, we’ve been so concerned about not knowing what’s going on, who’s making decisions about my treatment, and how and why those decisions are being made that we made enough impact for my doctor to appear before us twice.

The doctor explained a lot of information to us that we should have known before.  He also nonchalantly dropped the fact that the pathology reports had come back for the core from my latest bone marrow aspirate and showed that I had 10% to 15% blasts in my blood.  He said he didn’t really believe this number was true–although he made a point of pointing out how good the pathologists in Seattle were–because it was very atypical for the core to be higher than the slide.

My mom and I were stunned and only managed to ask a few general questions, such as, “what does this mean?”  To which he responded that if my next bone marrow aspirate showed similar numbers, we might try a different therapy that was just approved by the FDA.  All I know about it is that during trials, it gave people seizures. That doesn’t mean it’s bad, it just means another doctor only told me the bad things it can do.

I don’t know what else I’d ask the doctor about the radical difference between the slide and the core (up to a 13.7%!), but I know I felt like I’d been punched in the stomach when he so clumsily gave me that news.  It hurt me and it stunned me.  Worst of all, if hadn’t been for my my mom and my constant questioning and complaining, I don’t believe anyone would have told us about this major discrepancy.

At this point, I’m not thinking about it much.  I’m certainly not ruminating on it.  After all, there’s nothing I can do about it.   I go in, I get chemo or blood, or whatever I’m told to do, and I hope the numbers from my bone marrow aspirate at the end of this month show that I can go into BMT.  It still pops into my head, that 13.7% descrepancy, and when it does, I still feel like I’m getting punched in the gut.  Not so much because of the uncertainty of what’s to come, so much as the feeling that “my doctor,” nor any of the others (a doctor does rounds every day inpatient) really didn’t see fit to tell me this important piece of information.

For the uncertainty, I have hope.  Nothing I do, as long as I’m following the (*sigh*) experts’ orders, will guarantee the numbers at the end of the month go down to where I want them.  But I hope they do.


It’s The December Solstice…
Sunday December 21st 2014, 11:22 pm
Filed under: Me, Myself, and Reid

Just remember, for the next six months, every day is a little brighter than the previous one.

7 Years Alive! Plus: I’m Afraid To Get Into My Bed, Which Is Where I Traditionally Sleep
Monday December 15th 2014, 4:29 pm
Filed under: Family, Friends, Health (Not Cancer), Leukemia, Me, Myself, and Reid

This is not at all how I intended to start this post, but check this out. I took a glance at the “At a Glance” section of all the numbers on my blog and noticed some kind of magical mathematical blog achievement (blogchievement) wherein the number of posts I’ve written and posted is almost exactly equal to the number of comments that have been made by the likes of you, if you use some very complicated and impressive math that I figured out how to do all by myself:

Posts *100=Comments

Very Complicated And Impressive Equation: Posts*100=Comments

Look, I realize that it’s a little off. The thing is that the number of comments would be exactly 100 times more than the number of my blog posts, but I didn’t notice this magical maths until after I responded to someone else’s comment with my own comment. Since that last comment was by me, it doesn’t really count. I’m fairly certain this is how Stephen Hawking justifies his complex calculations. “Sure, I filled up eight chalk boards, but something’s just not working… I’ll erase this part about E equaling MC². Eureka! I’ve done it again!” is what he probably exclaims to himself as he coughs on all that chalkdust.

Like I said, this is not all how I intended to start off this blog entry, but I noticed it and I was obviously caught up with it. That rarely happens with me and any sort of math.

However, that being said, I just celebrated Alive Day on December 6, which will lead to more math in just a minute. Stick with me while I remind and explain Alive Day. For those of you that don’t remember or never read any previous posts from this time of year, Alive Day is the anniversary of my diagnosis with leukemia. It may seem strange to celebrate the day I was diagnosed with cancer, but had I not been diagnosed that day, I may very well have died. I’d spent months visiting various doctors, trying to find out what was wrong with me. During all this time, the bad stuff that leukemia does to the blood in the body was done to a very advanced degree. So I was very lucky that I left New York, came to Denver, and was almost immediately diagnosed so that I could be treated.

There’s math associated with this particular Alive Day (I don’t lie) which is that I was on chemotherapy for exactly three-and-a-half years, which is the normal amount of time that a man has to be on chemo for leukemia (women do two-and-a-half years, because they don’t have all the dangly bits that men have in which leukemia likes to hide).(I should clarify: leukemia likes to hide in cerebrospinal fluid that surrounds the brain and spine, and women absolutely have CSF, brains, and spines that are just as good as men’s, but they don’t have testicles, in which leukemia also likes to hide in men).(See. spines are sort of dangly and so I didn’t want there to be any confusion.) (Phew, this is too much parenthetical notation, I gotta get out of here…)

SO, three-and-half years of chemo. For me, that meant a lot side adventures, including cranial radiation, hemorrhagic pancreatitis, two not-hemorrhagic bouts with pancreatitis, a psychotic break where I thought I was asleep for two-and-a-half days and everyone else thought my brain had up and broke, a ten day period of delirium that I can’t remember, because delirium is state in which one can’t form short-term memories, getting a big ulcerated radiation burn on my back that went all the way to my spine that didn’t get fixed for several years, paralyzed body parts, and being traked (not a word, but should be shorthand for getting a tracheostomy). It was all kinds of fun. If you weren’t around, you really missed out.

The math (finally, the math) is that, as of Alive Day 7, I’ve been recovering from chemotherapy for the same exact amount of time that I was on chemotherapy. Three-and-a-half years. On Alive Day, I was in a celebratory mood about being alive for seven years against a tremendous number of odds. I saw a movie with my dad and had lunch with my folks and my friend Matt. Math came up again on December 7, when I realized that every day I was recovering was now a day longer than I’d been on chemo and radiation. That sort of bummed me out. I mean, knowing that Alive Day 7 was coming bummed me out from time-to-time, especially over the summer. I never, ever, in my wildest dreams thought it’d take me longer to recover from chemotherapy than to finish a long course of chemotherapy.

In fact, the night I was diagnosed (December 6, 2007), I was told I’d probably spend 30 days receiving chemo in Denver and then I could probably return to New York, where I could receive chemo treatments while going about a slightly more chemoey version of what had been my semi-normal life. But then I got hemorrhagic pancreatitis, and New York was pretty much off the table. Another bummer. But, when I was told when the end-date for my treatment would be (May 11, 2010), I was naïvely confident that I would simply return to New York the following summer. Another reality check, another bummer.

I had to wean off medications, I had to lie in a hyperbaric oxygen chamber for a month so there would be enough blood flowing to my ulcerated radiation burn to get out all of the necrotic and radiated tissue so that a plastic surgeon could close up the hole in my back, I had to undergo tests to identify and work to get rid of my radiculopathies, diabetes from the anti-psychotic medication I take to keep my tactile hallucinations under control (read this),I had to wean off medications.

Wait, did I already mention having to wean off medications? Yes. It’s because the system is broken and it makes me mad. It turns out that when a doctor puts a patient on tons of medications, there’s not really anyone or anywhere to help get off those medications unless the medications are being abused. For people like me that followed all of my doctors’ orders but had become physically dependent on some of my meds (which is different from addiction because I wasn’t abusing those medications, I was following strict orders), after chemo, I was left adrift still on dozens of medications. I got off of most of them just with the help of my mom. But certain meds, especially methadone (read this) of which I’m still working to get off the successive pills for the successive pills that aren’t methadone (I’m sooooo close) require professional help.

A large part of them problem with recovering, I know now, is that I suffered brain and nervous system damage during chemo. I have a brain injury and my nervous system is in a state of disarray. I can say those things now because they’re true and I’ve accepted them. My nervous system, at least, is slowly repairing itself. The same can’t be said for my brain. In fact, it’s hard to say much about my brain. We know that repeatedly injecting toxic chemotherapy drugs into my CSF covered an entire hemisphere of my brain with a chemical burn. But we also suspect that the electrical signals that control certain brain functions are not firing right. And the reality check there is that science can’t fix that in 2014. Those electrical impulses are not even something we really understand. Which is kind of humbling and amazing at the same time.

As a result of my brain damage, I’ve suffered for a year-and-a-half now from tactile hallucinations. I saw myriad neurologists about the hallucinations, most all of whom said the hallucinations must be a psychiatric problem. I visited the Mayo Clinic in Minnesota (in February–not ideal) and they were completely unable to help me with my hallucinations. They’re so realistic that if I hadn’t been going through this for so long, I’d swear real people were touching me, torturing me, and molesting me. But I know now it’s a result of my brain damage. It took two years after chemo for them to start and while I’ve had some good nights where they don’t appear, I’ve had to live with them almost every night since last July.

Like I said up above, I’m extremely close to being off the narcotic that was used to replace another narcotic that was used to replace methadone in June. This weird tradeoff of narcotics is not how someone who hasn’t abused medications prescribed by a doctor normally gets off of whatever they were prescribed. It’s how heroin addicts are weaned off of heroin. I’ve worked with two separate drug addiction specialists since May and neither ever seemed to understand that I wasn’t abusing methadone–I just needed help getting off of it. I wanted off of it. And I was never on it because I took heroin. I was put on it for pain during my six month hospital stay in 2008 and I successfully weaned myself off of almost all of it during chemo. I just needed help and I never found a person that would have been more appropriate to help me.

Part of going off a narcotic is that the lower the amount being taken, the more the brain wants to hang on to the drug. Withdrawal for titrating down from large amounts is easy, but–at least to me–it’s oddly inverted for the smallest titrations. As of about two weeks ago, I’ve been taking one quarter of a pill every three days. Before that, I had been taking one quarter of a pill two days in a row, with one day off in between. This has definitely been the hardest part of the wean so far. I’ve been experiencing visual and audio hallucinations, sweats, chills, not knowing where I am, terrible headaches, intense dizzy spells, and a fierce comeback of my worst tactile hallucinations. It’s especially weird, but true, that I only experience hallucinations when I’m lying down in bed. So, naturally, I’ve been afraid to go to bed.

Between avoiding bed and laying in bed and feeling like I’m being haunted by demons all night, with an array of visual, audio, and tactile hallucinations, plus not knowing where I am, I’m not getting the sleep I need. That creates a huge problem. It makes it so I can’t do anything I want to do. Sleep deprivation keeps me from my friends, it keeps me from parties, it keeps me from cleaning my room, it keeps me from playing music, and it keeps me from writing. I started writing this on December 7, and it’s now December 15. I’m thrilled that I found the energy to finish it, but I’m again bummed that I couldn’t put this out on Alive Day and that I haven’t been able to write more blog entries. There’s a lot more I want to write about. Some of them are things I’ve wanted to write about for years. For some of those, I have drafts, and others, just ideas.

I’m mad and I’m bummed. Not with any one doctor or practice, but with our medical system. It just isn’t equipped to treat someone list me. And while I haven’t found anyone else experiencing tactile hallucinations (part of me expects I never will), there are tons of people just like me that are orphans of the medical system (a term coined by my psychiatrist). Not only do the medical resources to treat us simply not fully exist, but very few doctors have the courage to take on cases that they so completely don’t understand and say, “I don’t know how we’re going to treat you, but we’re going to try everything we can.”

In a way, it’s a result of living in 2014. One day, I’m sure all of my conditions will be understood and treatable. But they’re not right now and I’ve had too many doctors send me away because they’re scared of the unknown. The medical field moves fast, but medical mysteries move faster. I am certain that between me and my most trusted doctors, we will juryrig a way to make me better, to get rid of my tactile hallucinations once and for all. I’m also certain that one day, that won’t be necessary–science, the medical field, and especially the way doctors treat patients will be able to take on brain damage and nervous system damage like mine. I can’t wait.


P.S. (Update): I read through this post and realized I never mentioned that my radiation was cranial in nature, meaning it was shot directly into my brain. I guess brain damage can make me forget about how I got my brain damage. Oh well.