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my first PT session since starting BMT (which now stands for stem-cell transplant, because “bone marrow transplant” is outdated and a misnomer and I keep having to explain it to people, which is fiiiine and everything, but… let’s get out of this parenthetical notation) was difficult or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.


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

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

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

Sorry… where was I?

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

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

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

Goodnight all,

BMT Day 52: I Was Sick Today, Nothing To Report.
Monday July 06th 2015, 10:38 pm
Filed under: Leukemia

I was sick today beyond what I’ve been feeling. I took it easy, other than going to a pre-planned BIC appointment. Pretty boring.


BMT Day 51: American Women Win World Cup! AND Movie Adaptations By Apostles.
Sunday July 05th 2015, 10:34 pm
Filed under: Family, Sodapopcornculture

If I’m still this sick tomorrow, I’ll bring it up in the BIC.

Two non-sleep things happened in my world today today. Sorry Greece, you didn’t make the cut.

A) The American women won the World Cup over Japan. We invited my aunt over to watch it, and by the time she got there, the USA was already up 4-0. I think that sums up the game. It was a pleasure to watch; especially all the good sportsmanship between the two teams during the game. And the five American goals. Both were good. It ended with a hockey-like score. it was fun to watch and at which to yell.

B) My dad and I finally watched the movie version of Ender’s Game, which is one of our favorite books. We thought it was pretty good. I’m not usually a person that thinks a book is better than a movie just ’cause. I always think of them as different tellings of the same story, ether in book form, comic book form, audio. To me it’s life if the apostles read the same book, they’d probably highlight different things and make considerably different movies. That’s usually how I feel about adapted literature. It was an pretty cool movie, but one that I probably won’t have to see again.



BMT Day 50: Happy Independence Day!
Saturday July 04th 2015, 11:27 pm
Filed under: Family, Leukemia

This Independence Day, I cant’t tell if I felt a strong lack of independence or if I just didn’t get to do what I wanted to do.

I had trouble sleeping during the night and was in an unpleasant half-awake-fog, half-dreaming-state until I finally dragged myself out of bed at 11:00.  My mom entered just as I was getting up and told me that she and my dad were concerned with the lateness of the hour and had decided one of them should check on me.  I appreciated the thought.

Once I was up, I realized my neck was still stiff and my head was still hurting. I know what’s going on inside my body.  It’s building this new immune system and it’s also fighting this clot that’s causing a lesser amount of oxygen to get to my brain than should be. Both are very important.  I just wish I could catch a small break, like the Lovenox kicking in making it so I can turn to the right and look up without being in extreme pain.

I know there are people going through BMT with far worse problems.  I’d just like to think about myself for a while. Like why does Lovenox have to give such big welts?  And why do some bleed after the fact?  That’s just stuff I don’t want to be dealing with.

I had three goals for the day: shower, shave, and BBQ. it wasn’t a big BBQ, just my wonderful aunt and uncle coming over.  But I like BBQing and don’t get to do it often.

I took another nap before showering because I felt very dizzy. When I got up, I felt very capable of doing everything on my list. And watching the end of 1776 with my dad.

I had my dad tape up the outer portion of my port that already has an inner layer of tape dressing on it to protect it through the week.  It needs another level of tape when I shower because my port absolutely can’t get wet, as that invites bacterial infections. He used (Christina) Reynolds Wrap and strong hospital tape to cover my everyday dressing.

I took my shower, got out, and immediately realized there was a problem.  My dad had accidentally taped the new tape to my normal dressing; there was no way to peel it off other than to also peel off the most important part of of my normal dressing.  We had to peel off the normal dressing that normally protects the tube that normally goes into my chest and isn’t supposed to be exposed to anything.

We immediately had to go to the hospital to get my dressing replaced. Which, on a day like today, didn’t take very long.  It was just frustrating.  At least, after my shower, I got to wear my new Captain America shirt my dad had given me, in honor of America.  And comic books.

We got home and I felt dizzy again. We had told my aunt and uncle to come a little late, so I decided after a while to shave. I knicked myself right in the middle of my upper lip. I’ve had a beard for so long, I don’t remember how to reach these hard spots.

By the time I was done shaving, I was once again dizzy. My dad took on the grilling duties. In the end, it was a nice night with good food and good company.

I guess what I’m finding most difficult right now is that things aren’t going the way I plan them or want them to be.

Hopefully they will soon.

Goodnight! Happy July 4th!


BMT Day 49: A Bunch Of Nothing. And “Pitch Perfect.”
Friday July 03rd 2015, 10:32 pm
Filed under: Family, Leukemia, Sodapopcornculture

I’m still feeling too lousy to do much more than try to sleep.  I think I got in several good hours today.  The rest was sort of mopey lying in bed trying to sleep.

After dinner, my mom and I watched Pitch Perfect at the goading of my sisters.  It was cute.  I’ll try to watch the second one with them when we’re all together again,

Now I need some real bedtime sleep, so I’m going to go practice that.



BMT Day 48: The BIC And “The Comedians.”
Thursday July 02nd 2015, 10:25 pm
Filed under: Family, Leukemia, Sodapopcornculture

Today, my mom took me to the outpatient BIC for what should have only been the second time this week.  I’m glad I went a third, emergency time on Tuesday to find the makings of a clot that wasn’t allowing all the blood to get to my brain.  That was a worthwhile extra trip.

Today, they just took my labs and tried to determine if I look as swollen on the right side as I did the other day.  The consensus was that I didn’t look as bad as I had looked, but that I’m still swollen.

I honestly wouldn’t know, because my neck and throat still hurt so much.  “A few more days,” I keep telling myself, “just a few more days.”  I’ll get the shots of a drug called Lovenox for a free more months, but it should indirectly help my body break down the forming clot within the next seven days.  The Lovenox, itself, doesn’t break down clots, but stops them from growing while the body breaks them down.

I then came home and slept. I’m in lots of pain and I’m exhausted.  The little things I want to do frustrate me because they’re still eluding me right now despite seeming so easy.

Tonight, my dad and I rewatched the first three episodes of The Comedians with my mom, so she could catch-up with us. It’s about two comedians with very different comic sensibilities (Billy Crystal and Josh Gad) who are forced to work together by a studio to make a sketch comedy show (yes, another show about making a sketch comedy show, but it’s very different from 30 Rock or Studio 60 On The Sunset Strip).  It’s on FX and it’s very funny; I highly recommend it.

Now I shall try to get some sleep.







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.



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. 


BMT Day 45: Terrorism (Important). I Get Switched To Two Days A Week In The BIC (Less Important).  Dammit.
Monday June 29th 2015, 9:41 pm
Filed under: Leukemia, Sodapopcornculture

I’m tired of turning on the TV and hearing that there’s going to be a terrorist attack on America by the Islamic State on July 4th.  It seems to be in every news cycle, but not a big enough story to get its own block.  There’s some story about flooding, a story about how we’re going to be attacked on Independence  Day–that, at most, I’ve seen last a minute–then onto some other BS story.  I’ve seen it at home on a few local stations and I saw it on CNN today at the Outpatient Bone Marrow Infusion Center (BIC).

My biggest problems with this story, in no particular order, are:

1) What are we supposed to do about it?  If we keep being told there’s going to be a terrorist attack of a totally unspecified nature, we can’t really do anything about it. Other than get scared, which can lead people to do some pretty dumb or awful stuff.  Dammit. 

2) “It’s the month of Ramadan, so that gives the Islamic State more reason to act now.” I keep hearing some various version of this from people who clearly don’t know what they’re talking about.  Or how to use the World Wide Web, for that matter.  Ramadan is the holy month in the Muslim lunar calendar in which there are traditions such as fasting, studying the Qur’an, giving sadaqah (voluntary charity), and–most importantly–doing no bad deeds and remaining humble.  The fact that it falls at this time this year–over July 4–would seem to be a good thing.  Dammit. 

3) There are actual, real terror attacks already occurring in th US right now that are getting little to no screen time. In the past week, six different black churches in six different states have been burned down. If that and the recent gun massacre at Mother Emanuel AME Church are not saying, “If you don’t feel safe in church, you shouldn’t feel safe anywhere” to blacks, I don’t know what is.  That’s actual, real terrorism going on right now in America, which is largely going unreported on television news.  Dammit. 

Dammit.  I mean really.  I have Stevie Wonder’s “Pasttime Paradise” stuck in my head–especially the words “race relations” and “confirmation to the evils of the world.”


In other, far less important news, even though I felt worse today than I did yesterday, I’m switching to two days a week from three in the outpatient BIC starting this week. I feel that this is a show of confidence from my doctors in both the strength of Rachel’s cells and the hopefully lay-over-and-die spirit of my own.