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!

–Reid.

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


1 Comment so far
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Hi Reid, just wanted to let you know I was thinking about you. I just searched and saw a post by Rachel on Monday that things are going well. I’m sure “well” doesn’t necessarily feel good or anything, but I’m very glad to hear that things are moving in the right direction. I’m not very adept at social media, so I go around checking on you from various sites. ;) I have a lot of respect for you and your fight. I can’t believe you blogged in the middle of all of your exhaustion, pain, challenges. Thank you for sharing when you are able. I think we all do the best we can but your strength shines. I hope when you have more energy that the online cancer support group helps. I would think connecting with others who have a lot more understanding than the regular Joe would be a cherished comfort. I wish that for you Reid: Comfort, rest, and more energy to write when it is time. Thinking of you and your family.

Comment by Karen 06.18.15 @ 9:34 am



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