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.

Love,
–Reid.



BMT Day 62: Long Day At The Hospital; Longer Day Tomorrow!
Thursday July 16th 2015, 10:30 pm
Filed under: Family, Friends, Leukemia

Today was a longer day in the hospital than we’d imagined it was going to be. We knew we were were going in for BIC and meeting with a Nurse Practitioner (NP), but some unexpected things arose. My platelets have gone way down, so I’m only on a half dose of my anticoagulant medication. Unfortunately, I still need platelets to make sure I don’t bleed out during tomorrow’s procedure on my lymph nodes. I can’t take my anticoagulant the day of my procedure, for fear that I’ll bleed too much. In fact, I had a bag of platelets infused today, so there’s no question I’ll have enough for tomorrow when I get another bag infused.

There was a lot of talk with the NP, Kerry, who I really like, about how many things she’s tested my lymph nodes in general they might be and how many things she’s specifically checked to see what’s causing their infection. But she just can’t figure it out, which is why I’m having another lymph node biopsy tomorrow. Hopefully one of the lymph nodes in my neck with be especially revealing. I have a bigger one than I’ve ever had before, so hopefully it will be quite revealing. Also, I really don’t like needles stuck in my neck while I’m awake or even “consciously sedated,” meaning they don’t put me all the way out–they just aim to make me loopy. So I’m hoping this is the last biopsy.

I have to show up at 8:30AM tomorrow to get another platelet transfusion to make sure I’m over 50,000 platelets before the procedure tomorrow. If that works out, it should be a long morning of waiting, because I can’t eat before the procedure, and I still don’t feel very good at all. I’d say today was one of the worst days. Hopefully I can get some sleep in.

We’re due to check in at Noon at IR, where I’m supposed to go under the needles at 1:00. However, having been there before, I know things hardly run on time. We’ll cross our fingers.

The coolest thing is that, if the timing works out right, someone from my Online Cancer Group is going to come say hi while I’m recovering. That’ll make it all worth it. I’m very excited about that.

All right, I need to make sure to get up early and have my wits about me, so I’m going to sign off on that note.

Goodnight!

–Reid.



BMT Day 61: My Online Group Ended Tonight. And I’m Still Feeling Crappy.
Wednesday July 15th 2015, 10:34 pm
Filed under: Friends, Leukemia

It was great to talk to people my own age who knew what I was going through. I hope we’ll keep in touch. I think that’s the general idea amongst everyone in the group, so hopefully it won’t be too hard.

I’m not feeling any better, and I have a BIC appointment tomorrow. Friday, I’m getting a procedure done to see if they can figure out what’s in my big ol’ lymph nodes. At least we don’t think there’s a clot or occlusion to my brain anymore. But man, I’m feeling crappy. I can’t wait for someone to figure this out.

Goodnight,

–Reid.



BMT Day 56: Surprisingly Long Hospital Visit.
Friday July 10th 2015, 9:50 pm
Filed under: Family, Friends, Leukemia

I’m going to keep this short because I am in a lot of pain.

Today, my mom and I went to the outpatient BIC for six hours. Both simply being there and the longevity of just how many hours we ended up being there were pretty big surprises.

Last night, I did not sleep well, and when I finally woke up, the right side of my neck was swollen and my lymph nodes hurt terribly. Same thing as before: it hurts to turn my head in either direction, it hurts to chew, and it hurts to yawn. I also have a little lymph node on the left side of neck, under my chin.

I went for an ultrasound, which revealed that my lymph nodes are simply inflamed, they’re not causing any occlusion or clotting problems. In fact, the clot that had been forming two weeks ago seems to be gone, which is great. But I’m in so much pain from my lymph nodes and no one’s really A) found a good way to make it feel better, or B) figured out why I keep having this infection. I’m going on ten days of antibiotics to hopefully get my lymph nodes cleared out. It worked before!

Even though that clot is gone, I need to stay on the anticoagulant, Lovenox, for three months. Those shots really hurt, no matter if a 10+ year veteran nurse gives them or my parents do. Even stranger, they measured a chemical inside my body that changes based on whether I’m taking the right amount of Lovenox, which is based on weight. The NP said my number is too high, whereas she normally sees numbers too low. She got in touch with a hematologist (blood doctor) and we got a call back from another NP this evening that the hematologist had said to leave the Lovenox at the same level, which could lead me to be a bleeding risk.

I’m guessing they will change soon my level on this soon or explain why it’s not as big of a deal as it was made out to be.

Luckily, it doesn’t seem like any of this has to do with BMT.

Jeff Reiman and Joyce Rubin came over tonight for what seems for our ongoing tradition of having Chinese food together for dinner every couple of weeks. I always look forward to seeing them and have a great time when I do! They’re very supportive, and we always have interesting things to talk about.

Going to try to go get comfortable,

Goodnight,
–Reid.



BMT Day 54: Great Expectations.
Wednesday July 08th 2015, 11:44 pm
Filed under: Family, Friends, Leukemia

I started the day off by doing some physical therapy with my insurance company’s mandated physical therapist. I like her and she’s good at what she does, she’s just not the PT I’ve grown to like to work with over the past seven years. I have another PT, Jackie, whom I’ve been working with since the first time I had leukemia, that I get along with very well and it’s just weird not working with her. But as I get energy and can build up to more than one session of PT a week, I’ll do two days with the insurance company’s PT and one with Jackie. Or something like that.

To say that my first PT session since starting BMT (which now stands for stem-cell transplant, because “bone marrow transplant” is outdated and a misnomer and I keep having to explain it to people, which is fiiiine and everything, but… let’s get out of this parenthetical notation) was difficult or exhausting would be incorrect. Actually, I felt pretty good while we were working out. We did all kinds of leg lifts and stretches and then she left and I collapsed on the couch. And Ferris Bueller (the dog) crawled on to of me and we slept for a couple of hours. So maybe it was just the PT leaving that exhausted me so much. Yeeeeeah, that’s the ticket.

What I think–in not fake terms–is that I have the willingness and willpower to do things, but, as I suspected, and have been told many times, it’s the energy I lack. Ironically, I never seem to lose the energy to beat up on myself. Now that would be something to lose. I woke up because Ferris (the dog) jumped off me, sensing it was lunch time. He doesn’t get anything for lunch–he just gets breakfast and dinner. But the fact that Mom was making lunch was very interesting to his sense of smell and to his sense of being named after Ferris Bueller (that rapscallion character of the 1980s). He is a lovable dog. He is a loving dog that knows when to cuddle and when to play. But my grandmother was right when she said that whatever you name your dog gives it the personality for that which you named it. Ferris Bueller the dog would definitely take advantage of Cameron’s dad’s car if he could. But he cannot, as he is a dog. And being in cars freaks the hell out of him.

Right, so, anyway, I think there were three points in what I was trying to get to: A) I ate lunch, B) I didn’t feel anymore energetic after eating lunch and taking a morning-long nap, and C) except in the ability to beat myself up for not feeling more energetic. This was a big disappointment to me. Why? I don’t know. I just thought that with the extra sleep and lunch, I might feel a little different than I had on every other single day of my unfolding BMT. But, alas, this was not to be. I went down to bed and tried to sleep, but instead just beat up on myself for not getting all my teeny, tiny tasks taken care of, which I don’t do any day, anyway. But it just hurt more today, and was easier to hurt myself today, and I don’t know why. I got depressed, which hasn’t happened much during BMT, or even the round of leukemia I most recently finished.

I finally fell asleep and was woken by my mom, who told me that it was almost time for my online young adult iPad cancer support group. It’s kind of amazing that these people were all were all picked for a grant to be studied, but we were picked by oncologist psychologists who know us and picked a very a good group. Tonight was our penultimate meeting, and when one of the moderator psychologists reminded us of that, my heart sank. These have literally been the only people my age that I could could talk to about my disease that truly understood what I was talking about ever. Not just this year. Ever.

It’s not that my normal friends don’t get me or don’t ask big, hard questions to try to understand what’s going on, but they’ve just never been through any of it. And, as well as I can sketch it out for them–and really appreciate them checking up on me and asking how things are how things are going and what they can do for me–I’m not going to be able to give them what I want to give them. Which is my perspective. I don’t want them to have cancer (ever) or go through BMT, but I do think what I’m going through is somehow impossible to truly understand without going through one’s self.

Which takes me back to this group; they just get it, because they have it or had it. Not necessarily pre b-cell ALL, but other blood cancers and we can relate. Even if someone’s been affected by for a much longer time, or someone just got it, we all speak the same language. And I’m not sure what I’m going to do without that language. The most comforting thing I was told today, was when I asked about being on BMT Day 54 and having no energy, and getting a response from all the people that remembered being where I was, walking around the block, and sleeping the rest of the day.

I think I’m going to need to lean on my non-cancer friends a little harder. I’m just so good at beating myself up which I don’t really know how many people know. But what it gets bad, it gets really bad. Lying awake in bad doesn’t help that at all; it just gives me time and a void.

I think I need to tell my friends exactly when I need them, rather than leaving them to figure it out. I think that will do wonders. And I think I need to stay connectected to the people in my cancer group, because that would be wonderful.

Goodnight,
–Reid.



BMT Day 42: Marriage Equality! People Posting On My Blog! I Need A New WordPress Blog Theme!
Friday June 26th 2015, 6:25 pm
Filed under: Attack Of The Internet!, Friends, Leukemia, Liberty!

First off, I want to remember that today was the day we achieved marriage equality in the US.  What a wonderful feeling!  Now if we can just tackle racial and gender equality, we’ll be golden. 
Second, thank you for the overwhelming response to my last post.  I especially liked that so many people commented directly on my blog (on my blog not about my blog) instead of on Facebook.  Facebook comments are good, too.  But it’s nice to get comments at the bottom of what I’ve written.  I didn’t respond to everyone, but that doesn’t mean I didn’t read or consider everything. It’s just hard to respond to everyone.  Consider yourselves all thumbs-upped.

Which brings me to this. I think I need a new blog theme that lets folks respond in a hierarchical fashion and also lets people subscribe to either individual posts or my entire blog.  I switched to a new one earlier this year, but it turned out to have a lot of bad code in it.  So if anyone has a WordPress theme in mind or good theme libraries that’re more current than mine (not hard, mine’s over ten years old), please recommend away!

Finally, today, I was told by my psychiatrist today that I needed to write at least one sentence in my blog a day and publish it.  I thought I was just going to write, “very tired, can’t sleep… going to try again.”

Instead, that’s just what I’m going to do now. 

Thanks for reading!

–Reid.



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.



BMT Days -4 through 6 Summarized, Plus: BMT Day 7, In Which I Am Re-Admitted To The Hospital.  (Part One)
Wednesday May 20th 2015, 10:07 pm
Filed under: Family, Friends, Leukemia

Every day since I was admitted to the hospital last Monday to go through the bone marrow transplant process has a number.  The day of the BMT, itself, was Day 0.  The days beforehand were negatively numbered as a countdown to zero, and the days after Day 0 are obviously numbered using a random number generator, Avagadro’s number, and the quadratic equation.  Which has surprisingly led to every day’s number going up by one whole number.  Maths is (are?) weird like that.

Day -4.  Monday, May 11th.  We received a phone call at 7:45 AM that there was a room available for me.  We rolled in at about 10:30.  Nothing happened until 6:30, when I received my first dose of fludarabine.  The infusion took all of 20 minutes and seemed to have no side effects.  I thought back to the BMT Oncologist, Dr. Gutman, saying that this should really be an outpatient procedure, but that insurance wouldn’t allow it.  Stupid insurance.

Day -3.  Tuesday, May 12th.  Again, a lot of waiting around.  I received my fludarabine at 4:30, which evened out the day a bit more.  The long days are broken up by great friends and family texting, calling, and visiting. Thank you, great friends and family.

Day -2.  Wednesday, May 13.  I received my fludarabine at 3:30.  It is my last day of chemotherapy for the rest of my life.  Fun fact: Rebecca was with me this time and the last time I received the last chemotherapy with which I’d ever be infused in my life.  I play lots of guitar in gaps between texts, calls, and visits.  It occurs to me that I’m not blogging.  I can’t really think of anything to say, except [crane shot, zooming out slowly and spinning as I yell to the heavens], “Iiiiiiiiiinsuuuraaaance!!!!”  I think about all the many countries that had medical insurance figured out fifty or more years ago.

Day -1.  Thursday, May 14.  My “day of rest,” in which I ponder, but cannot figure out, why the hospital or insurance company would pay to keep me in the hospital for a day with no medical procedures.  This literally costs those two institutions upwards of $6,000 (okay, maybe not literally, but I think I remember hearing someone say that).

I may have my complaints (I do!), but there are always things for which to be grateful.  There’s Dr. Gutman putting me on a “light induction therapy,” only 1/6 of what many patients receive.  His justification? “I could put you on the normal induction, but there’s a 70-80% chance it’d kill you.  Honestly, I prefer that the disease kills you rather than any decision I make.”  I genuinely appreciate his frankness.

There’s Rachie, who’s been receiving two neupogen shots everyday at the hospital, so that her bone marrow will produce an excess of stem cells.  Every day, experiencing bone pain that makes her feel like Tin-Man (her words) and all fluey and stuff, just so she’ll hopefully be able to give me enough stem cells on Day 0.  She doesn’t get a day of rest, and she’s gracefully dealing with all that for me.

There were also a lot of friends and family that visited.  I really enjoy Krista stopping by with her bass guitar. We kind of jammed, but we both agree we need more practice.

Also, all week, the nurses have been wishing me happy birthday.  As my birthday is in July, I am befuddled by this.  Someone finally explains that Day 0 is my new birthday.  I even get to keep my old one, too!  Two birthdays!!

Day 0.  Friday, May 15.  Rachel and Rebecca head to the hospital at 7:00 AM.  Rachel is hooked up to the apheris machine, which is incredibly painful.  This machine takes her blood from one arm, spins out all those extra stem cells she’s been producing, and returns the other parts of her blood to her other arm.  Thank goodness for Rebecca, who stands by her all day providing comfort and support.  Rach was apparently asked several times during her seven-hour-long procedure if she’s in pain, to which she replied, “Yes, but don’t stop the machine!”

I am very lucky to have two such special sisters.

I was initially told that I could not leave the floor, even to go see my sister who was saving my life.  I finally talked to the biggest cheese I could find, who gave me permission to go see Rachel and Rebecca.  It was a big, fun surprise, but I only got to stay for a few minutes.  We rushed back to my room, from where I was eventually taken to radiology to receive full body irradiation.

The process of being irradiated was not bad–in fact, I think I fell asleep during it.  However, upon returning to my room, it really hit me.  Pain and fatigue.  I took some medication and a nap.  Before I knew it (4:30), it was time to infuse me with Rachel’s stem cells.  What took her seven hours to give took me 20 minutes to receive.  Rachel and Rebecca arrived in the room in time for the infusion, but even more importantly, for the call Rachel received: she had given enough stem cells to forgo giving anymore blood the next day.  All the stem cells I needed were given and received in one day!

I’m overwhelmed by the worldwide support shown by the wave of orange; people posting themselves in their Reid Strong shirts.  I’m shown some pictures and told about others.  I don’t have time to look at the pictures yet, because I’m too busy celebrating my birthday with my extended family (my room was bathed in orange).

I’m very lucky to have such a great family.

I owe a debt of gratitude to my friends for coming up with the initial Reid Strong t-shirt concept.

I’m very lucky to have such great friends.

There’s irony to the whole t-shirt drive.  My sisters, who ran the drive through booster.com (and raised $6,000 for the Leukemia & Lymphoma Society) had to send an end date for the campaign.  Whatever date they chose would lead to all shirts being delivered by May 15, so they told people to post pictures of themselves wearing their Reid Strong shirts specifically on the date they knew they’d all have arrived.  At that point–when they picked this random date–I wasn’t even in remission yet.  It was a total and complete coincidence that May 15 became Day 0. Thank you to everyone that took part in the campaign and who wore your shirts for Rachel and me.  It was amazing, even if it was mixed with a big coincidence.

All right, that’s the end of part one, frankly because I’m tired.  We’ll get to positive day numbers in Part Two.  Here’s a preview of most of the days: “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.”

Oh, also (spoiler alert): I got re- admitted to the hospital on Day 7.  Friday, May 22.  Today.

To be continued…

–Reid.



Bone Marrow Transplant Begins Monday, What That Entails, What I Need From You.
Friday May 08th 2015, 6:18 pm
Filed under: Family, Friends, Leukemia

Upon going into remission, the goal has always been to give me a bone marrow transplant (BMT). This is an extra layer of security to prevent against another relapse of leukemia. The BMT is basically me receiving someone else’s immune system to fight off any leukemia that’s still in my body or rears its ugly head down the line.

My BMT donor is my sister Rachel. Both of my sisters had registered in national BMT donor databases last summer before we had any idea that I was going to have a relapse in January or that I would go through BMT. This is a great thing to do because a lot of BMT patients don’t have sibling matches and need to find matches from databases somewhere around the world. Parents can’t donate to their children because their genetic makeup is each only half of what’s needed. I’m very lucky that one of my sisters was not only the required six-point genetic match, but a full, 100%, ten-point match and the same blood type (A Positive and we’re positive). This should, hopefully, make the process smoother and more successful. Interestingly, and through no fault of her own, our youngest sister Rebecca is a zero-point match with Rachel and me. We all came from the same two parents (no one was adopted); genetics is just weird like that, I guess.

So go register to be a bone marrow donor–it’s just a cheek swab!

Despite its name, there’s no actual transplantation of bone marrow involved. In the past and at a few remaining modern hospitals, it’s common practice to take a helluva lot of marrow from the donor’s pelvis and put into the recipient’s bones. However, there have been advances in science that make this painful procedure unnecessary. Instead, Rachel will give herself two shots a day of a drug called neupogen for four days, beginning Monday. The neupogen will stimulate her stem cells to overproduce. Stem cells are found in bone marrow, until they become a specific kind of cell and work their way out into the bloodstream. With the amount of overproduction Rachel’s stem cells will be doing, they themselves will spill out into her bloodstream, which is not a place stem cells are used to being.

At the same time that Rachel’s shooting up on neupogen at our parent’s house, I will be admitted to the hospital to receive three days of a chemo drug called fludarabine. I think this is a funny name. Not as funny as blinatumomab, but still funny. I will be receiving the drug for a not funny reason, which is to stun my immune system and bring down my white cell counts. On Friday, I will be receiving full body radiation to top off this process of making my immune system so stunned that it doesn’t fight Rachel’s cells when I get them infused.

On Friday, Rachel will come into the hospital and go through apheresis–the process of taking her blood out of one arm, spinning it really fast so all the different kinds of cells separate, having the stem cells that have spilled into her bloodstream plus her white blood cells removed, and then having the rest of her blood put back into her other arm. The goal is to produce five million stem cells for each kilogram that I weigh (sorry, Rachie). There’s no way to tell how many stem cells anyone will overproduce on the neupogen. She’s the healthiest person I know, but there’s still a chance she may produce far fewer than five million per kilogram, in which case she may have to go back for a second day. On the other hand, some elderly old man might produce more than ten million stem cells per kilogram. There’s just no way to tell until the blood is drawn, spun, stolen, and studied.

The fact that we share the same blood type is really good, because the lab won’t have to clean out her red blood cells from the stem cells and white cells I’ll be receiving. The hope is that within 28 days, it will be possible to measure her immune system having taken over mine. If it hasn’t, the issue is that my blood cells can’t kill leukemia, while hers should be able to beat the living crap out of it.

In surprisingly good news born of the many miscommunications and lack of continuity at University Hospital, I found out today that since I’m receiving what’s considered a “gentle stunning of the immune system” instead of a full-out beatdown of chemo and radiation, I will probably be released from the hospital next weekend. I had anticipated, based on all the information I had previously received, that I would have to stay in the hospital for weeks, possibly over a month. This is great news.

Again, though, don’t let this great news confuse you. Despite what a big deal BMT will be, it will be incredibly boring. I need all the human interaction I can get while going through this process. Text me, call me, visit me (if you’re over 12 and not sick). It makes such a difference with how my days go.

Rebecca will be coming into town tomorrow night to be helping out throughout the week, which I’m really looking forward to; all five of my family members will be together for the first time since last summer when my grandmother passed away. Not only will our family be all together, one of them of will be saving my life. I am lucky to be surrounded by four such special people that have my back at all times. Truly lucky. And truly loved.

–Reid.



Reid Strong Shirts For Sale To Benefit Leukemia & Lymphoma Society.
Thursday April 09th 2015, 5:25 pm
Filed under: Family, Friends, Leukemia

Reid Strong

From friends to family. My wonderful friends made these shirts in my honor, which was a huge, wonderful surprise. Now my sisters Rachel and Rebecca are selling them on a site that donates money to a charity of our choosing; in this case, the Leukemia & Lymphoma Society.

Their mission is as follows:

Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families… Our Key Priorities will ensure that: The Leukemia & Lymphoma Society helps blood cancer patients live better, longer lives.

Reid Strong Front

You’ve seen the shirt, now it’s time to get one for yourself!

–Reid.