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one of the last things Reid said before he left this world on Tuesday, August 25,2015
one of the last things Reid said before he left this world on Tuesday, August 25,2015
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.
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.
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.
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.
I’ve just been feeling too sick to write today. I’ve got some good subjects to write about, I just need some good days on which to write about them.
Oh yeah, yesterday was Ferris Bueller (the dog)’s birthday (the day we adopted him, and he adopted us, not the day which he was born). He’s seven. There you go; a factoid!
(note: I’d originally mismarked this as “Day 61.”)
I did not sleep well last light, and ended up sleeping all morning. I feel awful and no one really seems to know why. Except the nodes. These lymph nodes are driving me nuts. They’re already around my head and neck. All I can say is that I’ve been reassured they’re not lymphoma. Other than that, no one has a clue why I’m getting them. If I had an infection in my head, it might make sense, but I don’t appear to have anything like that. I’m on widespread antibiotics just in case, to hopefully tone down the nodes. If that doesn’t work, I’m probably going to get samples taken of them again (with needles, even).
I’m getting frustrated and angry about no one knowing what this is or what to do about it, even if they’re doing their best. I also feel guilty and getting frustrated and angry when there are much more specific BMT problems I could be having–problems I know people who have. Problems where the donor’s host cells attack the host, or the way around. If this bothers me, I hope that BMT specific problems don’t happen to me.
I’m going to try get some sleep and see if it helps.
(note: I’d originally mismarked this as “Day 60.”)
Just remind yourself of that.
Sick Reid, Sleep Now.
I spent the day in bed and in pain. At least I wasn’t beating myself up. I think I was in too much pain for that.
My Aunt Cindy came over to visit while we had lunch, which was nice. It’s always great to have someone around I don’t get to see everyday.
After lunch, I slept off and on, which has basically been the story of the painful lymph nodes around my neck.
We watched some of “The Comedians” on FX on demand and the commercials that play over and over about getting half-priced shakes after 8PM at Sonic finally wore my dad down. He went to Sonic and bought us all shakes and we watched one more episode of “The Comedians,” before I stumbled off to bed.
I was so dizzy, I had to have my mom make sure I got in bed okay. Which is where I am now. Hopefully I’m going to fall asleep in a few minutes and feel all better tomorrow.
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,
I must confess that I really wanted to write about the Confederate battle flag today, why it’s being taken down, and the failure of politicians and especially the media to get it right. Unfortunately, I’ve felt progressively worse through the day and have had the fighting spirit knocked out of me.
I decided to expand on something just as important to me–obviously for very different reasons–that I posted a bit of on Facebook earlier today.
This picture shows just how huggable a little peanut can be when you need a hug from a little peanut (if that sentence doesn’t make sense to you, I apologize). I love you very much, Rebecca and want thank you for keeping me going this year. You’ve made time to listen to me and encourage me. You’ve made sure I was all right, and when I wasn’t, you made time to talk to me about why not. Your insight is boundless and I always know I can turn to you for ideas, whether it’s on feeling better or suavely ushering everyone out of my hospital room when you sensed I needed a break. I hope we can celebrate together next year, too.
Love you, Boo,