BMT 74: My 32nd Birthday. My Second Relapse From Leukemia.
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.
BMT Day 62: Long Day At The Hospital; Longer Day Tomorrow!
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.
BMT Day 61: My Online Group Ended Tonight. And I’m Still Feeling Crappy.
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.
BMT Day 60: Nothing Much To Say Tonight
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.”)
BMT Day 59: More Entries In The Big Book Of Reid Levin Medical Mysteries
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.”)
BMT Day 58: Every Day Can’t Be A Day 58.
Just remind yourself of that.
Sick Reid, Sleep Now.
BMT Day 57: Pain, Lymph Nodes, and Milkshakes
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.
BMT Day 56: Surprisingly Long Hospital Visit.
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,
BMT Day 55: Happy Birthday, Rebecca!
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,
BMT Day 54: Great Expectations.
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.