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.
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.
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.
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!
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.
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.
…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.
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.
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.
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!
I slept well last night, but woke up not feeling well this morning. After breakfast, I fell back asleep. But I had no such success in the afternoon after lunch. It felt like a very long afternoon.
At some point, I got out and took a short walk with my mom and our dog, Ferris Bueller (the dog). I’m supposed to be doing some walking every day. It was hot out. Heat and BMT go about as well together as heat and chemo; which is to say not very well.
Here is my recommendation of the day: we just finished watching both available on demand seasons of “Silicon Valley.” It’s on HBO and will surely have many more seasons. We blew through it fast. You don’t need to know anything about computers to enjoy it. It was created by Mike Judge, who’s created such fan favorites as “Office Space” and “King of The Hill.”
Tonight, we watched the premiere of USA’s “Mr. Robot” on demand. I liked it a lot and am excited to see more. The pilot opens up all kinds of questions, like, “Is any of this really happening?” and,”I I know I must have seen Christian Slater in something recently but I can’t remember what it was!” I don’t expect these or any questions to be answered clearly for a long time.
I have more recommendations but I’m very tired, so I’m going to try this sleep thing again.