I haven't had Neulasta in a while. It's called something different now but it's supposedly the same drug I had been getting all along.
It feels like the muscles in my back are trying to rip themselves in half. It feels like my ribcage is trying to pull itself off of my spine.
I can barely think long enough to type this. I hate this so much. I hate Neulasta.
Wednesday, April 22, 2020
Monday, April 13, 2020
Still here
I guess I fell off the wagon there for a while. It's hard to keep talking into a void.
I'm scheduled for a PET scan soon. I hope it has good news for me. I'm starting to have the back pain again, and after a CT scan the doctor said it looks like the disease might be progressing.
I do so much emotional labor just trying to keep people entertained and comforted.
I'm tired of hearing about quick, magical fixes that Mom finds on Facebook. Really, I am. And she encourages me to speak up if I don't want to do something, then makes me feel awful if I don't go along with everything she says. I even heard about the red wine "health hack" again. They're perfect memes, not tired Internet jokes but actual memes, self-replicating ideas. They're attractive, they contain just enough facts to seem credulous, so they reproduce and pass on. Chocolate and red wine is actually good for me? Sign me up!
I feel insulted, almost. I know I shouldn't, but I do. I have cancer, and Mom's telling me to eat almonds and drink herbal tea.
My instruction permit is expiring, and due to COVID-19 all the DMVs in the state are closed. Can't take my knowledge test, can't renew my permit. This is what I get for giving up and putting it off for years on end. It is true that I lost the ability to drive at various points, but I've also had plenty of opportunities to practice and keep trying for my actual license. Ruined by my own laziness again.
I miss my wife so much. This is the most unfair for her. I promise her the moon, and she gets a sickly husband instead. I just hope she doesn't resent me for the cards I was dealt.
I miss being able to exercise. I can still use my legs, but the pain gets so intense at night that it's hard to do very much, and I have trouble bending over. I'm worried about the numbness that I'm starting to feel in my side, too. The CT scan didn't show the doctor anything enlightening in that area.
But hey, at least I have a new computer. No more using a busted laptop for everything.
I'm scheduled for a PET scan soon. I hope it has good news for me. I'm starting to have the back pain again, and after a CT scan the doctor said it looks like the disease might be progressing.
I do so much emotional labor just trying to keep people entertained and comforted.
I'm tired of hearing about quick, magical fixes that Mom finds on Facebook. Really, I am. And she encourages me to speak up if I don't want to do something, then makes me feel awful if I don't go along with everything she says. I even heard about the red wine "health hack" again. They're perfect memes, not tired Internet jokes but actual memes, self-replicating ideas. They're attractive, they contain just enough facts to seem credulous, so they reproduce and pass on. Chocolate and red wine is actually good for me? Sign me up!
I feel insulted, almost. I know I shouldn't, but I do. I have cancer, and Mom's telling me to eat almonds and drink herbal tea.
My instruction permit is expiring, and due to COVID-19 all the DMVs in the state are closed. Can't take my knowledge test, can't renew my permit. This is what I get for giving up and putting it off for years on end. It is true that I lost the ability to drive at various points, but I've also had plenty of opportunities to practice and keep trying for my actual license. Ruined by my own laziness again.
I miss my wife so much. This is the most unfair for her. I promise her the moon, and she gets a sickly husband instead. I just hope she doesn't resent me for the cards I was dealt.
I miss being able to exercise. I can still use my legs, but the pain gets so intense at night that it's hard to do very much, and I have trouble bending over. I'm worried about the numbness that I'm starting to feel in my side, too. The CT scan didn't show the doctor anything enlightening in that area.
But hey, at least I have a new computer. No more using a busted laptop for everything.
Friday, February 21, 2020
CAR T - 11
At this point, I'm just trying my best to remain sane. I'm glad to be going home soon, but all the factors I've written about before are still making me crazy.
Mom's new thing is complaining about marijuana. I've been around her cigarette smoke my entire life, so I suppose it's only poetic justice that she breathe some smoke. This entire situation has made me more than willing to indulge in a little schadenfreude--hell, I even listen in when Dr. Phil comes on the TV.
I'm probably not making much sense right now. When I started this project to journal the process of receiving CAR T therapy, I had some grand idea that I would weave the entire experience into a meaningful tapestry that generations to come would read in English class. Publishers would be breaking the door down asking for book deals. Maybe Michael Moore would adapt it into a film.
Part of the problem is that my earlier blog posts, before the CAR T series began, were written in a dead silent apartment while my wife was away at work. I had the will, the mind, and the environment to spend all day picking words, looking up sources, getting Creative Commons images and editing sentence-by-sentence. These days my writing is in a more stream-of-consciousness style, and my inner monologue is pretty quiet when I've been sleep-deprived for weeks and this one nurse I really dislike is on my last nerve, even though my appointment was at ten in the morning and it's past midnight now.
It's now been zero days since Mom referenced an unfunny standup bit and was upset that I didn't laugh.
I've always felt like nobody understands me, but I'm starting to suspect that maybe there is nothing to understand. I'm not deep or tortured or especially intelligent, I'm just unpleasant to be around because I'm bad at small talk. If I'm not interested in something, I'm very bad at pretending; if I have nothing to say, then I won't say anything. If anything is "wrong with me," I feel like that's a good candidate: I can't just talk for talking's sake.
Mom's new thing is complaining about marijuana. I've been around her cigarette smoke my entire life, so I suppose it's only poetic justice that she breathe some smoke. This entire situation has made me more than willing to indulge in a little schadenfreude--hell, I even listen in when Dr. Phil comes on the TV.
I'm probably not making much sense right now. When I started this project to journal the process of receiving CAR T therapy, I had some grand idea that I would weave the entire experience into a meaningful tapestry that generations to come would read in English class. Publishers would be breaking the door down asking for book deals. Maybe Michael Moore would adapt it into a film.
Part of the problem is that my earlier blog posts, before the CAR T series began, were written in a dead silent apartment while my wife was away at work. I had the will, the mind, and the environment to spend all day picking words, looking up sources, getting Creative Commons images and editing sentence-by-sentence. These days my writing is in a more stream-of-consciousness style, and my inner monologue is pretty quiet when I've been sleep-deprived for weeks and this one nurse I really dislike is on my last nerve, even though my appointment was at ten in the morning and it's past midnight now.
It's now been zero days since Mom referenced an unfunny standup bit and was upset that I didn't laugh.
I've always felt like nobody understands me, but I'm starting to suspect that maybe there is nothing to understand. I'm not deep or tortured or especially intelligent, I'm just unpleasant to be around because I'm bad at small talk. If I'm not interested in something, I'm very bad at pretending; if I have nothing to say, then I won't say anything. If anything is "wrong with me," I feel like that's a good candidate: I can't just talk for talking's sake.
Friday, February 14, 2020
CAR T - 10
I just learned today that I get to go home on the 28th. I'm glad, because I don't know how much more of this I can take. I am feeling very fried.
Things are looking good. I just can't wait to get home and relax a bit in my own bed.
Things are looking good. I just can't wait to get home and relax a bit in my own bed.
Saturday, February 8, 2020
CAR T - 9
I fell behind on my scheduled posting again. I simply can't be productive in this environment. I can barely pay attention to my own thoughts, let alone get any kind of creative flow going. I'm tired of never being alone. Alone time has always been very important for me, and as always it is in extremely short supply. If I need a moment, I just have to hope that Mom starts craving a cigarette.
I really wish Mom had a hobby or a friend. Sometimes I feel like she's staring at me, waiting for me to entertain her or resenting me for being a quiet person. It's not my fault that I'm an introvert, and I'm tired of being seen as moody, angry, unhappy, depressed and all of the other things people have called me over the years. As usual, "express yourself" comes with the addendum "in ways that I approve of, or I'm going to be mad at you."
I had a fever on Saturday and was admitted to the hospital for a few days. I got some alone time, relatively speaking. Since I still had to eat hospital food and sleep in a hospital bed, it came out as a net negative anyway. At least I got to sleep without hearing the TV or talk radio for the first time in a few weeks. They finally determined that my rash was, in fact, not shingles, shaving about an hour off my average appointment visit. They still take forever and tell me nothing new.
Like it did during my stem cell transplant, the tedium is setting in. I want to go home, but it won't be any time soon. I might actually have to do my taxes while staying here, which is going to be a pain; I can't get my mail and I can't remember the password to get my pay stubs. However much I hated working in fast food, getting tax information on paper is a lot faster and easier for me.
In other news, I've joined a D&D group at long last. We actually play Pathfinder, not D&D, but the point is I finally found somebody to play a tabletop role-playing game with--people that actually know the rules and pay attention when the GM is speaking. Trying to play D&D is a Sisyphean task of finding players, scheduling a session, then starting over when nobody can make it and everybody loses interest. The most complicated game people are interested in is Candyland; maybe Monopoly if they have a real head for numbers.
I wish I had a point to this entry, but I don't. I'm bored, I'm tired, and I want to go home. At least my third session with the group is coming up shortly, and I can take my mind off of how much I don't want to be here for a minute.
I really wish Mom had a hobby or a friend. Sometimes I feel like she's staring at me, waiting for me to entertain her or resenting me for being a quiet person. It's not my fault that I'm an introvert, and I'm tired of being seen as moody, angry, unhappy, depressed and all of the other things people have called me over the years. As usual, "express yourself" comes with the addendum "in ways that I approve of, or I'm going to be mad at you."
I had a fever on Saturday and was admitted to the hospital for a few days. I got some alone time, relatively speaking. Since I still had to eat hospital food and sleep in a hospital bed, it came out as a net negative anyway. At least I got to sleep without hearing the TV or talk radio for the first time in a few weeks. They finally determined that my rash was, in fact, not shingles, shaving about an hour off my average appointment visit. They still take forever and tell me nothing new.
Like it did during my stem cell transplant, the tedium is setting in. I want to go home, but it won't be any time soon. I might actually have to do my taxes while staying here, which is going to be a pain; I can't get my mail and I can't remember the password to get my pay stubs. However much I hated working in fast food, getting tax information on paper is a lot faster and easier for me.
In other news, I've joined a D&D group at long last. We actually play Pathfinder, not D&D, but the point is I finally found somebody to play a tabletop role-playing game with--people that actually know the rules and pay attention when the GM is speaking. Trying to play D&D is a Sisyphean task of finding players, scheduling a session, then starting over when nobody can make it and everybody loses interest. The most complicated game people are interested in is Candyland; maybe Monopoly if they have a real head for numbers.
I wish I had a point to this entry, but I don't. I'm bored, I'm tired, and I want to go home. At least my third session with the group is coming up shortly, and I can take my mind off of how much I don't want to be here for a minute.
Friday, January 31, 2020
CAR T - 8
This week has been draining, so this post is a bit late.
On Monday the 27th, I received my CAR T cells--the immune system cells that had been collected and genetically modified to destroy the cancer. Since then, they've been screening me non-stop for symptoms of neuropathy. They have me state the year, our location, my full name, identify three objects in the room and count down from 100 by tens. They also had me write a sentence before the treatment began, and every day since then I write the same sentence again on the same sheet of paper--checking my dexterity by comparing my handwriting.
I've been patient thus far--I've been in the hospital hundreds of times in the past year. I've been hospitalized for periods from less than a week to over a month. I've had three implants, dozens of medications, radiation, and more scans and X-rays than I can remember. Now I'm losing my patience.
It started on Wednesday, when I showed the doctor some bumps. I thought were probably acne, but wanted to check. He said they looked a lot like shingles. He got the opinion of some other people--this took half an hour. He wanted to biopsy the bumps--another half hour as, piece by piece, the biopsy equipment (read: needle, Q-tip, test tube) was delivered by a retinue of nurses. As a precaution, the doctor prescribed some stronger antibiotics. The insurance wouldn't cover them at first, so we waited another hour while alternative therapies were debated and discussed. The nurse went to lunch and came back somewhere in the middle of this. Someone assured us they would gather more information from somebody only for the nurse to come back and say that both of those people since left for the day. By the time we left, this short follow-up had taken well over six hours, most of which we spent waiting alone in the room.
When you have so little to look forward to in the day-to-day sense, this kind of time wasting takes a toll. I left the appointment fuming and cursing, and my mood hasn't improved much since then. They've even slowly walked back the shingles diagnosis, making it all even more frustrating. Today, they had four people ask me the exact same set of banal questions--do you have a cough, fever, aches and pains, rashes, so on. It doesn't take two assistants, a nurse and a doctor to ask these questions.
I prefer this to the times where I lost use of my leg or vomited several times a day, but only by a slim margin.
On Monday the 27th, I received my CAR T cells--the immune system cells that had been collected and genetically modified to destroy the cancer. Since then, they've been screening me non-stop for symptoms of neuropathy. They have me state the year, our location, my full name, identify three objects in the room and count down from 100 by tens. They also had me write a sentence before the treatment began, and every day since then I write the same sentence again on the same sheet of paper--checking my dexterity by comparing my handwriting.
I've been patient thus far--I've been in the hospital hundreds of times in the past year. I've been hospitalized for periods from less than a week to over a month. I've had three implants, dozens of medications, radiation, and more scans and X-rays than I can remember. Now I'm losing my patience.
It started on Wednesday, when I showed the doctor some bumps. I thought were probably acne, but wanted to check. He said they looked a lot like shingles. He got the opinion of some other people--this took half an hour. He wanted to biopsy the bumps--another half hour as, piece by piece, the biopsy equipment (read: needle, Q-tip, test tube) was delivered by a retinue of nurses. As a precaution, the doctor prescribed some stronger antibiotics. The insurance wouldn't cover them at first, so we waited another hour while alternative therapies were debated and discussed. The nurse went to lunch and came back somewhere in the middle of this. Someone assured us they would gather more information from somebody only for the nurse to come back and say that both of those people since left for the day. By the time we left, this short follow-up had taken well over six hours, most of which we spent waiting alone in the room.
When you have so little to look forward to in the day-to-day sense, this kind of time wasting takes a toll. I left the appointment fuming and cursing, and my mood hasn't improved much since then. They've even slowly walked back the shingles diagnosis, making it all even more frustrating. Today, they had four people ask me the exact same set of banal questions--do you have a cough, fever, aches and pains, rashes, so on. It doesn't take two assistants, a nurse and a doctor to ask these questions.
I prefer this to the times where I lost use of my leg or vomited several times a day, but only by a slim margin.
Friday, January 24, 2020
CAR T - 7
I'm back in Portland again. On Monday, I'll receive the modified
CAR T cells. At least it's a very short infusion.
This hotel is very nice. It's got a swimming pool, a small gym, a bar/restaurant and complimentary breakfast every morning, none of which I can partake in due to various aspects of my treatment. The gym and pool are off-limits due to my brand-new PICC line, and a lowered immune system rules out restaurants, especially buffets, and doubly especially alcohol. No Fireball for me, sadly. Besides my PICC and lowered immunity, I can't be left alone; this therapy has a risk of stroke, seizures and neurotoxicity. Anywhere I go besides the clinic, Mom has to be with me.
I am so deadly tired. It’s hard to put into words how weary I feel. It’s fatigue that takes over your brain and leaves your body free to act like a zombie. I see and I do, but I barely comprehend anything. It’s a mode of existence where your thoughts tangle around each other in a web, your brain turning over like a car with a dead battery while the world outside moves in slow motion. I live moment to moment, and the moments peel away from me like pages blown in a soft breeze.
It’s just the nighttime after a long day. Tomorrow morning I’ll feel fine, and tomorrow night I’ll be cagey, defensive and depressed again.
My wife is home, waiting for me. That’s the only thing that is keeping me centered and grounded. There is one person above anybody else in the world that I live for, and she’s waiting patiently for me. There’s a light at the end of this tunnel, a dawn after the longest night in my life. We’ll laugh, we’ll hug, we’ll watch TV, we’ll go to restaurants and movies and long walks again. I just have to make it a bit farther.
This hotel is very nice. It's got a swimming pool, a small gym, a bar/restaurant and complimentary breakfast every morning, none of which I can partake in due to various aspects of my treatment. The gym and pool are off-limits due to my brand-new PICC line, and a lowered immune system rules out restaurants, especially buffets, and doubly especially alcohol. No Fireball for me, sadly. Besides my PICC and lowered immunity, I can't be left alone; this therapy has a risk of stroke, seizures and neurotoxicity. Anywhere I go besides the clinic, Mom has to be with me.
I am so deadly tired. It’s hard to put into words how weary I feel. It’s fatigue that takes over your brain and leaves your body free to act like a zombie. I see and I do, but I barely comprehend anything. It’s a mode of existence where your thoughts tangle around each other in a web, your brain turning over like a car with a dead battery while the world outside moves in slow motion. I live moment to moment, and the moments peel away from me like pages blown in a soft breeze.
It’s just the nighttime after a long day. Tomorrow morning I’ll feel fine, and tomorrow night I’ll be cagey, defensive and depressed again.
My wife is home, waiting for me. That’s the only thing that is keeping me centered and grounded. There is one person above anybody else in the world that I live for, and she’s waiting patiently for me. There’s a light at the end of this tunnel, a dawn after the longest night in my life. We’ll laugh, we’ll hug, we’ll watch TV, we’ll go to restaurants and movies and long walks again. I just have to make it a bit farther.
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