BMT Day 47: I Slept A Lot And Did Not Feel Well.
Wednesday July 01st 2015, 10:41 pm
Filed under: Family, Leukemia

…and that’s mostly it.  I met with my virtual cancer support group this evening.  Then I watched Mr. Robot  with my folks and, finally, took a shower.

In my cancer support group, I was told the anti-coagulant I was put on will take 3-10 days to kick in.  It doesn’t actually get rid of clots, it just tells the body to fight them.  Once the clot is gone, I’ll still have to get the shots twice a day for three months.

Now I’m going to sleep again.

Goodnight,

–Reid.



BMT Day 46: More Than A Migraine.
Tuesday June 30th 2015, 10:31 pm
Filed under: Family, Health (Not Cancer), Leukemia

I’ve been having bad headaches fairly continuously for the past several days.  I noticed that my headaches grew worse, the right side of my neck was getting tight and then tighter and tighter still.  It hurt to rotate my head up and down or from side to side.

At first I figured I must be sleeping on it weird, but as no positional changes seemed to fix it, I became suspicious that it was something more devious. I had a big lymph node on the back of my neck, basically connecting the right part of my neck with the base of my migraine headaches. 

My mom and I decided to be vigilant, so we called the outpatient BIC, who had us come in right away.  I was feeling dizzy, so my mom pushed me around in a wheelchair.

We met with the Nurse Practitioner, who was concerned that I might have a clot along my line, which goes through my heart and curls back up and goes through my subclavian artery, which delivers blood to my brain. (Please feel free to correct this if you’re a scientist.)

Luckily, we had just scanned this area with an ultrasound and a CAT scan last week.  So, when I got my ultrasound today, it was very easy to compare.  There’s nothing on the right side from last week that appears concerning. Today, however, the blood vessels in my neck look smaller.  

The thought is that I have a blood clot forming.  I was put on another shot that should help my body along in breaking down this blood clot.  It should get better after ten days, but I’ll need to use it for three months. 

The reason my head is hurting so much could definitely be that my brain’s not getting enough oxygen, because this newly formed clot is blocking the blood from its destination.   

In conclusion, while I may not be happy about receiving these painful shots every day, I’m very glad my mom and I acted on instinct and got into the BIC quickly. It may very well have saved my life. 

–Reid. 



BMT Day 44: Inside Out, Migraines, Stupid Migraines.
Sunday June 28th 2015, 11:07 pm
Filed under: Family, Leukemia, Sodapopcornculture

I had a migraine most of the day that prevented me from sleeping. I can only take Tylenol or one of two different narcotics to manage my pain.  While the Tylenol helps with headaches, it doesn’t touch migraines.  The narcotics don’t touch headaches of any kind.  That was less than ideal.

Luckily, before my migraine started, my dad took me to see an early matinée of Inside Out, Disney Pixar’s latest film.  It was great.  The animation was great, the casting was great, and most importantly, the story was great.  I have to agree with my friend Jason that Pete Docter is the best writer/director at Pixar.  Between this outing, Monsters, Inc. and Up, his portfolio is pretty amazing. 

And before you ask, I did get permission to go to restaurants and movie theaters with the understanding that the fewer people that are there, the better.  I even wore a mask so people would avoid me

We watched the first episode of the final season of Falling Skies tonight and then Last Week Tonight with John Oliver, both of which were good, but would’ve been better without a migraine. 

I think I’m going to try sleeping again and hope for the best.  Goodnight!

–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.



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.

–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.



Tweet: I’m Home.
Sunday April 19th 2015, 9:00 pm
Filed under: Family, Leukemia, Tweet Tweet

I think it’s safe to make this announcement. I’ve been home from the hospital for 24 hours and I’m doing fine. I get to sleep in my own bed!



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.



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.

–Reid.