[2024-12-13: The person who was instrumental in helping me through this has asked that their presence be removed from this site. If there appear to be unusual gaps in this journal, that is why.]
Never in my life have I kept a journal. Notes on stories, yes, big envelopes stuffed full of correspondence, vast arrays of files and folders (hard and soft) and email and language databases and whatnot, of course... records of every stripe. But nothing like a diary.
I tried a blog once but abandoned it after three entries. I just didn’t have anything clever to say, particularly while under pressure to refresh. I had a Facebook account for a while, but flushed it when I realized that the trivialities of my day were of no real interest to the general populace. (“Brushed my teeth… again. Status: minty. Look on my works, ye Mighty, and despair!”)
So why start now?
Well, just in case, I guess.
It will be much easier to write this as I go along just in case it turns out that I want it. Plus I’m so paranoid after all of the various medical mistakes that I want to have some sort of documentation in place for later.
131031
Halloween. We finally got our pumpkins carved last night, which added a nice sense of normalcy. Not that it’s normal for us to have carved pumpkins sitting around, but it’s a holiday ritual in which we have engaged before, so it is familiar in that way.
Attended a presentation on what I should expect from the chemo. I am scheduled for three cycles’ worth, at three weeks per cycle. (Not much at all compared to some people.) In each cycle, I’ll have one heavy week (Etopsin and Cysplatinum, with Bleomycin in addition on Tuesdays), then a short visit each Tuesday of the next two weeks (with just the Bleomycin).
I’m trying to find something that will help to keep my mind off of the BII triggers that will be present in the clinic. To begin with, I haven’t seen the relatively new Elementary series yet, which my eldest loves, and he says he’ll scan through the episodes to keep me forewarned of the gory parts that I’ll want to skip. There’s a lot of QI on YouTube. I’m not yet ready to re-watch Battlestar or SG:U. Maybe I can track down some MST3K episodes.
[redacted]
I went to the small Halloween party for a while. I carried a little broom and a dour facial expression as “The Grim Sweeper.” (This costume works much like my standby: “Entirely Unsuspecting Host of an Alien Parasite.” I’ve never made good on my threat to attend as “Naked Mole Rat.”) It was nice to have a chance to talk with some familiar folks, but I didn’t stay long because I was so tired.
I’m having to navigate family and broader social rules around privacy. I knew early on that there would be no way to remain private about the cancer and all of the related information, like the loss of the testicle, so there was nothing to do but start out by being public and just make jokes.
And while I appreciate all of the caring and concern, and everything that people have done to help, it does get uncomfortable for me, having all of this attention drawn to my illness, and to me. But their help does make things very much easier for other carers, and that knowledge has the effect of extinguishing my discomfort.
Sometimes I need to still feel like I am being brave and manly about the whole thing, and I do not want to be protected from every little thing. I do value and need help at every turn of this road, and I can’t truly imagine what it would be like to go through this alone, but sometimes I just need to be allowed to stare this challenge in the eye and back it down. Sometimes I need to get frustrated with it, and mad at it, and not have my feelings soothed. No one needs to listen to me do that; I am fine talking back to it on my own without taking up anyone else’s time.
That’s one of the main differences between a regular phobia and the BII. Like most folks, I do also have some regular phobias, like for heights, but when needed I can just force myself to face the regular phobias with an effort of will; for instance, I have walked a ledge around a building just to prove that I could do it if I needed to. In contrast, the BII just shuts me down. I can try to hold it off with certain kinds of breathing, or redirection, and so on, but when push comes to shove, it wins; in fact, it wins every single time (albeit not always to the degree of fainting), except when someone needs emergency help... which I suspect has something to do with adrenaline and focus of attention away from myself. But relief is not a mindset that I can achieve with an exertion of will power.
Anyway, we got out today and bought patterns for the bag that will hold my stuff at chemo, plus ones for head coverings for when the hair goes. We also picked up a set of needles for knitting a smaller-diameter tube to cover the PICC line. We’ll get the actual fabric tomorrow.
We saw the ENT again because I continued to have a bleed in the upper right quadrant of my nasopharynx, but when he scoped he didn’t see any blood oozing from the congenital hemangioma. He displayed the scoping on the screen, and no clotting or anything was evident. So I’ll just hope that it stays shut.
Folks came over and watched Pacific Rim tonight. It doesn’t do the movie justice to say that it’s a climactic Godzilla movie directed by Del Toro, with only one thing missing: there was no pathetic civil patrol guy facing upstream of the maddened crowd telling them not to panic. (sniff)
No bleeding this morning, or for most of yesterday.
Emily and April plan to make dinner for us tomorrow. In response to queries about dietary restrictions, I answered, “No insects, sea boogers, or peas.”
During the post-hospital week, Laura and Sue both brought meals by the house, and that was very kind and helpful to us. Laura’s daughter Amanda charmingly raccooned through the house, paused in front of the bathroom mirror long enough to ask my last name, and then danced to her own tune of, “It’s the Mansfield Family.”
Been fiddling with this book here and there.
Starting The Hobbit in anticipation of needing a long series to read for chemo.
Emily and April made dinner, which was lovely.
I nabbed Elementary (Season One).
I’m not sure what it’s called, but I use a couple of layers of stretchable tubular netlike bandage to cover the PICC line so that I don’t have to look at it. (I think that it might be used for burns. The stuff at the drug store is too easy to see through, so we got ours at a medical supply store.) I have an additional tubular cover that was knit to go over that one, which is to keep the bandage itself hidden when I’m out and about. It just seems polite.
Today was the first day of chemo. They had a private room available for me, which frankly made it at all possible.
I had to pee about every hour.
There was a bad incident, though, right at first, but someone took care of it. A nurse came in and I warned her about the BII. She protested airily with, “I have a habit of talking while I do my work.” We reiterated that I would need less talk, regardless, or I might pass out. So she got me hooked up while tugging strongly on the PICC line (which is also extremity-tingling and barfy for me), then immediately asked, “So, tell me about the insertion of the PICC line.” While I was saying, “Please, I said that I’d really rather not talk about that,” A friend responded by covering her eyes, making an exasperated noise, and swearing mildly. The nurse said to her, “What? Do you have a phobia too?” The nurse was non-physically bustled out of the room and there was an insistent exchange that I only heard about afterward. Part of it involved the nurse saying, “He’s in chemo now. He’s just going to have to get used to it.” Rather than punching this insensitive, ignorant woman in the face (in the interest of avoiding jail time and leaving me at the mercy of this sadist), my supporter just took a step forward and said, “I will talk to your boss now.” The nurse dropped some of her bluster and informed the nurse manager, who was able to understand when the difference with BII was explained. My chart now says that this nurse is banned from my case, and I will not have to deal with her bigotry anymore.
The next nurse, Irene, was great. She was the one who ran the chemo info group that we attended.
I read a bit of The Hobbit, and spent line-swapping time listening to the Battlestar Galactica soundtrack, which helped me to meditate and focus away. I watched a few episodes of Elementary.
Stacey and her daughter brought by dinner. It was BBQ roast, vegetables, croissants, a big jug of organic apple juice, and four pints of frozen yogurt in various flavors (with Miralax for desert).
Second day of chemo.
I had to take the level 1 nausea medication when I got home. I’m looking and feeling flushed. I have an asthma-like irritation of the trachea, especially after just walking a couple of blocks to get the mail. It feels a bit better after reclining and not breathing hard. I have had a couple of minor strings of tinnitus (high-pitched squeal).
I also felt something like tired after this session, but not “tired” exactly. I was low on energy, yes, but not tired like you might feel after working a long time at a task. More like bogged down after just sitting around all day.
I find that I do not want to be entirely honest with folks when I write to them about how I’m doing. I don’t want my people to worry. I can’t shield immediate supporters because they’re my link with the doctor and help me to remember to tell him everything that he needs to know.
The nurse today, Erika, was very good.
I did not sleep deeply last night, but it might just be the effect of going to bed so early. I was mostly worried about the nausea, but now I’m wary of insomnia.
I updated to Mavericks, and Sigil now won’t display embedded fonts, which is a real nuisance. I have to write in code view until they get it fixed, which could take who knows how long. I have tried other programs, but they simply don’t do what I want them to do.
Third day of chemo.
Great nurses again.
I ended up with the same side effects as yesterday, but milder tracheal irritation. I tried staying up later, but I still have some insomnia.
I still have no good alternative to Sigil.
But one advantage of being awake is that I finally got the Illustrator drawing done for Camrin’s tattoo.
Fourth day of chemo.
I’m starting in on some new side effects. I have some nausea, but mostly more like a roiling, acidic stomach. There’s still insomnia, plus some headache now too.
I moved from The Hobbit to LOTR, but I’m having a difficult time getting into it again.
Virginia stopped by chemo to visit today. She went through this herself about 10 years ago (although more involved), and accompanied another colleague a few years ago. It was nice to have someone else to talk with for a bit as a change-up.
Fifth day of chemo.
It was really difficult to sit in the chair today. I felt very squirmy and anxious and couldn’t get comfortable. I hope that the next couple of lighter weeks helps me to reset, or the next heavy week is going to be torture.
I don’t have nausea as such, other than something mild, but a very sour stomach has set in. During the session I start to feel very bloated, and it takes hours for that to work itself off. I’m sitting here at 2:00 am after having gotten (not woken) up at 12:30 and giving up on sleep for a while, but at least my stomach feels more normal.
Speaking of which, people have been very kind about bringing us meals (as mentioned before), and that has been a truly enormous help to us. And they have been generous enough to bring food to last for a couple of meals at a shot. Not having to do the meal planning and shopping and prep and everything for the family on top of a long day of chemo, that just makes such a difference that I can’t adequately describe it. It also gives us some time with the family together that we would otherwise miss, what with everything else going on.
Carol caught us just as we were leaving the clinic, and it was very nice to talk with her and catch up a bit.
A few days ago, Steve brought by a giant card that the Junction City High School Life Skills classroom made for me. It’s fabulous, which is not a word that I use lightly. Much of it is in a ransom note form, with parts cut out of magazines, referring in a very familiar way to subjects like hope (and “hoop”), health, the fate of my paycheck, and the cleanliness of my bottom. I love those folks.
I found out earlier this week that one of my students passed away over the weekend. That’s a scary part of this job, and naturally it’s a scarier part of the students’ lives. I did not know him as well as I do many of my other students because I was his Assistive Tech Pro rather than his SLP, but over the course of several years I knew him through making a few specialized devices just for him (which involves some personalized attention, interactions with the family, and so on). There are times when I have known a student well enough that I experience significant grief (especially when everything seems to be going so well, and the change is a shock), and other times where I merely feel a deep sadness. And it always reminds me that I have things pretty damn good. Much of my work is just trying to help my students have access to that same goodness in their lives while they are here.
You can take my word for the veracity of the following contention (as I have advanced degrees in language-related stuff, you know): it doesn’t matter whether we choose to use milder words like “nice,” “kind,” or “compassionate,” in the sense that what we do in our job is to love our students. We can write up IEP goals, hold therapy sessions, improve their access to their activities of daily living and their specially designed instruction, and on and on and on, but all we are really doing is just showing them love.
Having worked for Lane ESD for so many years now, I am at the point where some of my first students were in grade school when I started, and will be graduating high school this year. The part that strikes me the most is when I come across a student whom I first knew years ago as their SLP, and then there’s this big gap where I wasn’t serving their classroom, and then I suddenly meet up with them again years later and they’ve grown so very much.
I figure that I have about 15 years left on this job. It makes me wonder about the greetings and partings that will occur in that time. Some of that is going to be very difficult, but there will also be joy.
Last night was disconcerting.
I got up at half past midnight, having been too wired/buzzy to fall asleep, and wrote for about an hour. I could on rare occasion feel the sense of falling asleep swoop in on me, heavy and warm, and I would drop just a bit more, but it would instantly just bounce off. I peed several more times. Because I wasn’t sleeping, I got hungry, so I had to eat. In other words, the insomnia is getting annoying, but I suspect that due to a lifetime’s worth of adaptations to intense sleep deprivation (from before the CPAP), I am not getting sleepy during the day. One big difference, however, is that when I was younger I would easily just pass into a very deep, snoring sleep from which it was very difficult to awaken me, and I’m not doing that now. But it definitely feels the same way as when I would spend so much of my waking time (virtually all of it, actually), in an alpha state.
I wanted the family to have some time together today. We picked up the tiger fabric to complete the available set of animal prints, got Mariya her new backpack, mailed videos of the Disney trip to my family, ate for the first time at Noodles &; Co. (which was good enough that we will bring folks there), then we went to a string of stores for games, videogames, vintage clothing, new age stuff, used videos, groceries, and finally home again. We actually bought very little at the stores; it was more about giving each person a chance to browse with their family members through some stuff that fit their personal enjoyment preferences. Everyone got some attention, rather than another day being swallowed up by the consequences of my illness.
Still no sleep.
More work on the hats, plus another bag (this one with a musical fabric theme). The kids are taken with them enough to place their own orders.
2:30 am and still no sleep. Took two Benadryl (after a consult with the on-call doctor), but no change at all. Turns out that I’m out of Ambien as well (which I failed to notice earlier because I had been taking it so very rarely, less than once every couple of months).
1:30 am and no sleep. I wrote some and found out that Adobe Digital Editions updates Sigil code changes easily enough that I can use it to display a book view and just code in Sigil. While that’s still not optimal, it’s not too bad, and certainly easier to work than it has been since the Mavericks update. It is fortunate that we’re seeing the docs today, because this sleep problem is really wearing, and I don’t need the additional weakness. And as I mentioned earlier, it’s also fortunate that I spent most of my life adapting to horrendous amounts of sleep deprivation. I can feel some of that kicking back in. Anyway, I’m going to go give sleep another shot.
No good. Waited in bed until 3:00 am and gave up again. I’ll try again at 4:30 am (not long from now), but I’ve got to get up at 5:30 anyway so that we can all get up and around and have the kids to school on time. We started commuting them to schools in Eugene this year, so everything takes more time now. They can no longer just roll out of their beds and along the sidewalk to their first classes in the morning. It has been an incredible boon that Jenny and Chris have been helping us to get this transport accomplished, often days in a row.
For the coming couple of weeks (i.e., during the relatively light chemo), I’ll get various projects done around the house, as tiredness allows. I’m also dealing with the start of the side effect where the alimentary tract from stem to stern starts to act up. Oh joy. I suspect that the hair loss, then, which is really among the very least of my worries (unless there is skin irritation along with it), is not far behind.
At short chemo today, Dr. Cho said that I could try a couple of the Lorazepam (that I haven’t been needing for nausea) as a sleep aid, and I have some optimism about the prospect of it working. And we did my least favorite part of chemo: changing the PICC line.
Keagan got an A+ on a science test, his first ever. Grades as grades are something that I keep in tight perspective when it comes to what they actually tell us, and all of that, but the important part here is that he was just plain happy, and I love seeing that.
It’s about 10:00 pm, and I’m putting two Lorazepam under my tongue.
Huzzah! SLEEP! I fell asleep fairly readily and only woke up once, about 3:00 am, from a Chopped-plotted dream with additional adventurous elements. Very long and involved. Peed, of course, got there and back with some balance issues (and a strange bronchial itch that still makes me cough when I breathe at all deeply), and then, crucially, I fell back asleep. Now I have woken about my normal 5:00-ish am time. I’m imbalanced somewhat, and a bit buzzy, but feeling significantly better. I’ll have to see how this evens out during the day, and then make some guesses about what I might need to do tonight. But my prospects for continued rest are at least looking up. I’m just a little concerned about that seemingly allergic reaction in my airway, but that might also just be from the Bleomycin that I had today, which is suspect for that irritation already.
The rest of the day was pretty straightforward for a while. I got the leaf litter cleaned up from underneath the car that I haven’t driven for so long, rested, and then (since I wasn’t feeling dizzy anymore) drove a few blocks to the store and back. Nice little sense of normalcy. Then I made the Stroganoff in the crock pot, which has been a family favorite. Watched a movie, talked with the lawyer, played a little bit of Guild Wars, puttered around on email (work and home), got some small chores off the deck, and all sorts of stuff to fill time. Mariya was at the play rehearsal until late.
Then diarrhea struck. I was in there over and over and over until there was nothing left. Ended up taking an Imodium, and skipping dinner. So today I will start off with a very light breakfast, and have my strategy be just to keep up on liquids.
I’m going to set up some sort of regular schedule so that I remember to pursue the Gaelic lessons, drumming, and so on. Those are all great things that I can practice when folks are not at home.
My face has been unusually greasy for days, and is now starting to break out in what it can’t seem to figure out is actually a rash or not. But it would be nice if it didn’t go just berserk.
One more thing: stuff has been tasting funny, as if my mouth were coated with a thin, dull layer of unappetizing fat-like fuzz. I made Chicken Marsala with Mushrooms last night. Well, we were out of Marsala, so I used a very dry sherry, and given the changes in my tastes I might as well have used Boost. No one seemed to mind too much, although this dish that used to be a family favorite that I could count on becomes less of a go-to when the kids are no longer interested in the mushrooms. Then it just becomes chicken in a mushroom sauce. Which I suppose is just not too big a deal in life right now.
I’m downshifting to one Lorazepam tonight.
One upper and lower opposing molar on the left side attacked me out of nowhere. Intense. Nothing wrong with the teeth. Must be some weird neuro thing. Tried two different topical oral analgesics to no effect, as the pain is deep in the root. The upper finally started to release its grip, but the lower kept at it for quite a while. And I was also having other odd, random stabbing pains that are coming and going, like deep in my heel, or in my side, plus more ringing and roaring. Just strange. Eventually it all calmed down, and those teeth are leaving me alone as long as I don’t deliberately piss them off with something too cold or whatever. Something, however, told my left inferior alveolar nerve (from the mandibular nerve) and my left posterior superior alveolar nerve (from the maxillary nerve) to get angry, one directly over the other, and I don’t think that prompt was from the tooth side, but rather from the inside. That stinks. The thing is, I have to doubt that speculation because the only common root these two branches have is in the semilunar ganglion of the trigenimal nerve, so, who knows, maybe I did just bite down wrong on something between those two molars, and I just don’t remember doing it. Anyway, I’m going to try to stay off of them for a few days.
Got sleep again. Tonight I’ll try going it without a sleep aid at all.
My arm is sore around the PICC line, like a small, tugging ache. That started when it got changed on Tuesday, then I think I overdid it with cleaning the leaf litter, doing household chores, driving, and whatnot. Gonna rest it up today and see if it will calm down.
I made ice cream bread and added that recipe to the book. I have no “grandma” recipe to list for my own mom, but that’s because she tends to do things that are more like making fabric products, such as toasty blankets, and the purple wizard’s robe when Camrin was a kid. Once she made capes for me and my new nephews so we could play Lizard Man. We don’t really have the right kind of house layout to do that inside, but we have a yard with trees and stuff that would work just fine. Snow is not a requirement, but it would be nice because capes can be hot, and they just seem like a natural safety resource in an adjunct snowball fight.
Anyway, here’s the thing. I realized that I had ended up including a small collection of “grandma” recipes in the book, so I was gathering them into their own section. (Yes, grampas can cook, but this particular book is the consequence of my family cultural consequences on my specific life and set of memories, so I only have the grandma stuff in there, recipe-wise, just because that’s how my personal history unfolded.) It brought me to wonder whether Camrin had a grandma recipe that she associated with my mom. He pointed out (as above) that my mom does more things like gardening, fashion, history, and so on, and mentioned that wizard robe in particular as having been special. Now, during that precise text exchange, which was a very short window of opportunity, a DeLuxe Fruitcake from Collins Street Bakery arrived precipitously on my doorstep, reminding me (with perfect timing) of what I had forgotten in the moment, which is that my mom is equally right the hell on it, even without the actual recipe available. A magnificent fruitcake from Collins is the one specific bakery item that is as wholly representative to me of care and nostalgia as are any of the grandma recipes included in the book.
You see, fruitcake used to be this very special thing when Jeff and I were growing up, and it was kept in the freezer, and sometimes you’d get just a little slice. When I went to work right out of college, a guy dropped by Waldenbooks selling fruitcakes for the Lions Club or something like that, and I suddenly realized, “Hey, I could buy one of those and eat the whole damned thing, no holds barred.” So I did. And it was an incredible experience of freedom. My life changed.
Some years later, knowing this story, my mom tracked down these fruitcakes from Collins, and from then on, right about this time every year, she and my dad send me one. (Well, ok, I am supposed to share it with my family. And I do. Mostly.) This food is just as important to me as those associated with the other recipes in this book. And the one that arrived today managed to do so precisely on time to answer my question. Life is pretty fantastic.
The kids are each spending the night at a friend’s house tonight. I’m thinking that we’ll make a leisurely start over at Los Cabos, which is a comfort restaurant, and it’s just a few blocks from home, so there’s no stress. Pero no hay cerveza para mí. I’m really not much of a drinker at all, but because we tend to just walk to Los Cabos instead of drive, I sometimes enjoy one Negra Modelo with my meal. But not tonight. Curse you cancer!
I got to sleep okay without meds, but woke around 3:00 am with a sharp sore throat in the upper left quadrant (nasopharynx mostly, near the eustachian tube juncture). That pain was additionally pissing off the recently sensitive tooth nerves, plus I’ve got an earache on that side as well (and the tongue root on that side is also sore). I did a couple of hyposaline sinus rinses, read for a bit, and then actually managed to get back to sleep, but the pain went back up and woke me again in about an hour; I think that the CPAP is irritating the sore throat area in the nasopharynx (despite the humidifier). So I’ve given up, gotten up, and run another rinse. It would be nice if it would just calm down somewhat.
And it started. There was plenty of hair on the towel as I dried my head this morning. At that point, I knew that I’d end up buzzing it this weekend. I’ve been feeling far more greasy than normal, my facial skin is rebelling, and a number of small sores have developed on my scalp. We need to pick up some soap that was recommended and give that a shot. I do not want to ooze.
We went to Noodles & Co. and visited with Anthony, Marissa, and their 1.5 y.o. daughter Amelia, who is a cute little punkin. They came to town to see Mariya’s play. Anthony is the kids’ older half-brother (through their bio dad). I like them.
Later that afternoon, I reached up and lifted a bunch of hair off of the back of my head. It was like looking at something tangled in my fingers that the heater vent had been blowing across the bathroom floor. (Our bathroom is kept very clean, but the occasional loose hair-scurrier is a fact of life in a family with multiple long-haired people.) Each time I reached up, more would come loose with the slightest touch. It was time for action, because I wasn’t going to sit there and trichotillomania myself all day. I buzzed it all the way down, then finished off with the electric razor (which I later bothered to maximally clean, using that blue cleaning solution). I’m really not one to make Star Wars references (as this book will attest), but in terms of my looking at the back of my head with a hand mirror, I will leave you simply with the image that you get of a helmetless Vader as his meditation chamber closes. (I had to look up what that capsule was called.) I’ve always looked forward to the notion of going bald with age (despite the lack of likelihood), but this is not the path that I had in mind.
The PICC line has been acting up, making my arm sore.
Today, with all of the side effects adding up, I just didn’t feel like doing squat. Got a couple of little things done, got my head shaved, then ended up just wanting to watch some shows, namely a good documentary about Gregory Crewdson, a couple Deep Space Nine, and three Chopped. I kept feeling my scalp, which is weird. It’s a mixed experience of sensitive, numb, rubbery, prickly, and rough... no real smooth areas, like you see with the polished heads of some bald men. It leaves me feeling spongy, which is just a really nice addition to an already perfect day. And see, that’s the thing: I find whining to be a worthless endeavor, preferring to do something about whatever might be irritating me, and certainly not making anyone else sit around and absorb all of that petty crap. And again, I’ve got it really good compared to what loads of other folks are going through. But today it has all just sort of added up, and in aggregate I find myself giving way to just listing that shit and pointing out that it is a landmark day for nickle-and-diming me into feeling like it’s not a good day. I think that now and again I am just succumbing to the feeling of learned helplessness with the “decay” sensory issues, knowing that I simply have to live with it inescapably for another several weeks. So I try to shut up and remind myself that at least I’m not an actual zombie, and that on the bright side I’ve gotten back to getting okay sleep for the most part.
On the plus side, I got to use one of my hats, and it fits nicely. It feels strange, but so does anything that touches my head at this point. It’s soft and warm, so that’s good. In the house it gets to be too warm, in fact, but I can just take it off then. I just don’t want to have to remove it when I’m doing stuff outside the home. With colder weather coming, that shouldn’t be too much of a problem.
Sleep was okay, waking for a short while at 3:00 am, then again at 6:30, which is fine for me. No sore throat, which brings me to wonder if it was more like a sore in the nasopharynx. The lower tooth is still a bit achy, so I’ll stay off of it. The sore tongue root still zings sometimes. I’m feeling stuffed up, and there’s crackling fluid in my middle ears. Mildly nauseated. I still have that disgusting, taste-obliterating, sensation of a layer of mungy fat in my mouth, but I figure that’s with me for the duration. It’s just gross. And it ruined this particular season’s experience of the fruitcake that my folks sent.
My scalp doesn’t feel as spongy as before, but it is still very strange to the touch. I don’t know how much it feels like it “really” feels, and how much my brain is trying to make up some sort of feeling as marginally coherent feedback for a set of sensations that simply have it baffled.
We got out to JoAnn’s so that the kids could choose the fabrics for their hats, then we dropped Mariya at her play and did a chore run.
The rash on the skin of the back of my head cleared up. I’ve developed a strange sort of blister on the palmar side of the middle joint of my left little finger. My tongue is not as painful. Sore throat is gone. I continue to have all of the stuffiness symptoms. The PICC line continues to be sore.
Got to bed relatively early last night, and followed a similar pattern: woke after four hours, goofed around for half an hour or so waiting to get sleepy again, went back to bed, woke a couple hours later.
Gave a talk at UO to grads with two other SLPs.
Started fever today. Armpits swelled up. Lot of nasal drainage. Symptoms like a mild flu. Urgency and frequency of peeing is increased. Just feeling crappy.
Went to bed even earlier. Woke earlier first time. Woke earlier second time.
Fever continues.
Chemo today went fine.
Ludean stopped by bearing food from her and Carol and Virginia. We had a nice visit.
Up at 1:30 am. Not feeling too bad. Don’t think I have a fever. Still a bit runny. Thumb is slowly getting better.
Wrote no more than that on Wednesday, and now, trying to go back and fill it in from Friday, but little stands out.
New symptom mid-morning (after reading while lying on my side), like an esophageal sphincter cramp. Bad pain right under the xiphoid process, which hurts to palpate, right through to the back, and up into the jaw/neck. I can easily take a deep breath without changing anything. It passes after a few minutes, but it had me pacing around weighing my options (because it feels worse reclining), which are few, because no one’s going to know for sure what the hell it is. It’s one of those things where they remove your gall bladder to fix the problem, just to act like they know something, and when the pain continues, they just go, “Oops, guess you could have kept that bit.” It happened again at bedtime (after lying on my side to watch Chopped). Nothing to be done except avoid lying on my side, just in case. I’m thinking it’s a cramp since (a) it feels like it’s cramping, and (b) my lower extremities have felt on the verge of cramping, and (c) I was told that that the chemo leeches potassium and leaves a vulnerability of cramping. So fingers crossed.
Been working on the VHS-to-digital transfers.
Bad tooth woke me last night.
Spent the day being a lump on the couch. Feeling unmotivated.
Becki and Kye came over and we were also be able to visit with her Aunt Phyllis (mom’s side) up from Alameda.
Bad tooth got me again when I woke up in the middle of the night. Not sure what’s making it flare up when I’m sleeping. Maybe the CPAP?
Helped get the living room clean under the sectional, used only my left hand. Lunch from the local BBQ place is not as good as from the restaurant in Cottage Grove (by my family’s account... can’t trust my tasting). Folks saw Mariya’s play.
Top layer of skin peeling. Hair has stopped growing according to empty razor. Bottoms of feet hurt to walk. Mild fever. Just kinda feel lousy.
picc line arm too sore to type, because i have to stretch a bit to reach keyboard. just one less thing i can do. typing this with just left hand... so annoying. fortunately I have little left to say. little stir crazy, and facing heavy chemo week.
tried staying off right arm yesterday. somewhat less sore today.
talked with the lawyer. they’ll take the case. feeling optimistic.
Arm much less sore today.
Chemo gave me that asthma thing again. I think it’s a combo of the Bleo and the sheer additional volume of fluids.
Phoned Dad. It’s his 85th birthday.
Finding it hard to get to sleep tonight. It’s only 11:00, though.
Pretty normal heavy chemo day. Arm not sore at all. Afterwards we went and picked up some stuff for the feast. We’re not prepping much, since we’ll still be doing chemo.
Happy Thanksgiving.
The insomnia is coming back enough that I think that I’ll have to start using the pills again.
Over the last couple of days, I think that some depression has taken hold. I don’t have deep personal experience with how that feels (just experience knowing and helping people who have troubles with this), as my natural optimism seems to hold that sort of thing at bay. Sure, I get melancholy situationally, but that resolves along with said situation. And that might be the case here as well, but I am only half of the way through this chemo process. I’m hoping that it won’t require the intervention of more meds. It’s just that I am feeling often on the verge of tears (and occasionally beyond) due to the instances of helplessness and my being a burden on others. I am finding it to be very difficult to fight my way back up through that swamp to a more rational, objective space. My head is having a hard time intellectualizing to my gut to keep that stuff in check; in other words, I am no longer able to just talk myself into better spirits. And I don’t want to visit that garbage on the people around me who are doing so much to help me. It’s hard enough on them as it is.
The onset of the depression makes it clear that the side effects are now officially falling into three categories, and it’s rendering a weird balance between (a) my normal tendency not to complain and (b) shit happening that makes me really want to complain anyway. I have been trying to sort of block it all out and just survive the ordeal, taking it down to a level of merely being a royal pain in the ass that I just have to wait out, but if I look at it truthfully, it’s worse than that. As much as I know that other people have a harder time with their lives, I am finding it increasingly difficult to be sanguine about the whole thing. I find myself getting angrier with the doctors who could have helped me to avoid all of this. That was their job. They failed me miserably. I couldn’t have avoided the cancer, but an earlier intervention would not only have avoided the chemo (since the lymph nodes didn’t become involved until after they were sending me home), but the testicle itself might have been saved when the tumor was so much smaller. I am not a litigious person, but I am crossing that line.
Anyway, back to the categorization of the side effects.
A few sides are scary, such as the effect that didn’t make it into the “what to expect when you’re chemoing” brochures about the painful spasm that spears in through your xiphoid and out through your back that you need to convince yourself is not a heart attack. There are three or four of those. The depression has become worrisome, with occasional forays into terrifying.
Most of the sides are just kind of annoying, such as everything-tastes-insipid, sore-PICC-line, collection-of-variable-insomnias, nasal-draining, out-gassing, and so on. There are lots of those, in part because there are so many different ways to be annoying (e.g., sensorily gross, painful, restrictive, and so on). And of course the insomnia only migrated to this category after we figured out a way to address it. And the soreness of the PICC line (which seems to have resolved) is not in the same class as constantly having to try to ignore it. (Excuse me while I go distract myself for a while.)
Only one of the effects is actually kind of interesting, namely, “So this is what it’s like to rock a bald head.” Plus now I can reminisce over how I got those various scalp scars, so I guess that’s relatively okay. (The whole process of actually physically losing the hair, including how the whiskers and so on end up scraping out with layers of skin, is annoying and gross.)
So, on the one hand, I’m resigned (i.e., it’s all grist for the book mill), but on the other it’s a constant battle to keep it together with the BII phobia demanding that I get the creepy damn PICC line right the hell out of my body right the hell now now now. Or, from another perspective, I know intellectually or brainwise that I’ve got nothing huge to complain about compared to what lots of folks go through, but emotionally or gutwise this is still so horrible that I (even as an otherwise thoroughly non-litigious person) have engaged a lawyer to find a legal remedy against the doctors who kept telling me for so long that I could just ignore the growing mass when instead they could have exercised a competent standard of care that would have allowed me to have avoided the chemo altogether (even if not the primary surgery).
Very jittery today and yesterday evening. Made it through the final day of chemo of the second heavy week. For some reason, Fridays make me feel particularly antsy. It has been getting harder to close my hands normally, and my feet feel weird to walk on, all because of the water weight gain. I went from a pretty steady 225-228 up to 238 Thursday morning, and 241 by that afternoon. I’m peeing lots, but clearly that hasn’t been enough.
It was good to be seen at WVCI rather than the regional infusion place. (We went to the regional one on Thanksgiving, and it was not a good experience.)
Not feeling as despondent.
I went to clean the kitchen before going to bed, and the typical thing happened: I couldn’t wash the dishes until I fixed the sprayer, which required that I replace the bulb over the sink so I could see what I was doing, which I had to wait to do until after I got ready for bed so the kids could shower, which entailed changing the roll of toilet paper where someone had left one square for the next person, which meant recycling the empty roll, which is where the cat caught me and demanded to be fed, and so on. So it just kept backing up with further chores in a reverse chain of setting up dominos.
We tried one of those deflatable shower sleeves a couple of days ago. Don’t bother.
I ended up using two Lorazepam last night. I still get up as often, but it is easier to get back to sleep.
Nothing specific on for today. Got a bunch of little chores done.
Tried the sports wrap instead of poretape (with the PICC line cover), not the tannish kind with the string in it, but some sort of bright blue stuff designed for kids that still has that stretch-grip property. It worked well. Did a broad wrap with many winds, and it did not come undone. That might give a chance for the peeling/bruised area of skin under my bicep to heal from all of the repeated removal of the poretape.
Got on a drive out and about, just to get out of the house. Stopped by the local grocery store, and it will be closing permanently as part of a bankruptcy proceeding. Odd that I just read about “food deserts.” We’ll not be as bad off as some places, but the next nearest grocery store is eight miles down the freeway. We’ll be okay because we do big weekend shopping elsewhere, pick up stuff along the way home from work, and generally only use Ray’s for convenience shopping (where we can sub Bi-Mart for some of that), but that distance is going to be prohibitive for many of the Creswell residents. They’re working on getting another store to come in and take over, but that seems little likely to happen anytime soon (if ever), and the shelves are already bare of bread, eggs, and so on.
More steroid, so more Lorazepam tonight. Was asleep, but got up around 11:30.
Took the kids to school. Was going to work on the AT assessment today, but I need to get my work laptop back because I don’t have a copy of the file on my home machine. So I worked on transferring the reel-to-reel recordings instead, and that’s going well.
Chemo was relatively easy and short today in that I slept through the Bleomycin infusion. Changing the PICC line dressing is always traumatic, though.
Mariya had her winter chorus thing at school today, and that was a nice performance.
Been trying another grain-based instant hot beverage, but it was giving me heartburn flip-flop stomach, so it’s out. I’m going to see about ordering some of the dandelion stuff.
Lots of ice scraping required before the car was safe to drive. (Snow predicted for Friday.) Visited with Carol and Steve while I was at the ESD. Made Goodwill drop, got groceries from Market of Choice. Worked more on the reel-to-reel tapes.
Thursday. Got my thank you cards written. Well, I composed and typed up the sentiments for each person and classroom, and someone else wrote that all in the cards so that it is legible.
I started experiencing neuropathic signs as the day wore on. Dr. Cho always asks about those when I see him, but I hadn’t shown any before now. From what he asked me about, I had been thinking that it was going to be just tingling and numbness and so on, but in my case it turns out to be fairly severe cramping from the hips down. (The Cisplatinum appears to be the known culprit, but it is so good at what it does that there’s excellent reason not to swap it out.) It started just in the hip socket and then spread. Advil helped a little, but I had to take four of them. Hydrocodone in addition did nothing.
The neuralgia and cramping kept me up all night. There was no position in which I could lie, sit, or stand that gave me any relief. Every few seconds my feet cramped up (but without the sensation of my toes trying to go in the wrong directions, which I’ve experienced during regular life), so there was nothing that I could do effectively to occupy myself through those hours. I couldn’t sit at the computer and type because the office chair made for worse hip pain; in fact, I had to wait until Saturday morning to get back to this journal (although I would have been pain-free enough to have done it yesterday later in the day). I couldn’t sit and read. I couldn’t watch a movie. What I could do was worry about having this condition be chronic throughout the remainder of the treatment, and wonder how I was going to keep from going berserk.
In the morning, I was only able to hobble about. Putting weight on the left foot was particularly dicey, so I couldn’t risk trying to stand in the shower. Moving about some, even hobbling, seemed to help a bit. The nurse helped set up a different pain med regimen. Seemed to work after a couple of hours. I keep saying “seemed” because we have no way to know how this would have progressed without intervention. But it was so bad that it wasn’t worth finding out.
Anyway, today was a Snow Day!
We got outside, but I couldn’t go farther than the porch because of the stairs. The kids got over to Jenny’s and various points around the neighborhood.
We’re now decorated for Christmas. We watched White Christmas this evening.
Today I got the last of the reel-to-reel tapes finished. Nice to get a project actually done.
Working on a TARDIS tree topper. Have to get some new X-ACTO stuff.
Sunday. First anniversary. Roads too bad to get out and about. Kids stayed overnight at Jenny’s.
Monday. Got a normal night’s sleep last night. Up twice to pee, then right back to sleep.
Got another Snow Day today just because the roads are too bad for kids to get to school.
Finished the TARDIS tree topper. Very happy with it.
Tuesday. Schools still closed. Small chemo. Got stocking stuffers for the kids.
Wednesday. Schools closed. Cleaned remaining snow off of car. Made gingerbread house from kit.
Thursday. Schools closed.
Friday. School on again. Christmas shopping by myself. Dropped books off at Camrin’s. Christmas shopping for the kids. Tired myself out... waaaay out.
For a week or so my nasal mucosa has been in trouble. Not going into details because it’s gross. But I’ll be glad when it’s better.
Saturday. Mariya’s recital at the Shedd. She did very well indeed. Jenny took the kids for a while.
Sunday. Relaxing day.
Monday. Chemo okay. Doc says I won’t be ready for work until maybe the end of January rather than Dec. Went to the Uncommon Scents soap store. Forgot Nathan’s birthday. Talked with Jeff on the phone.
Tuesday. Fixed the laptop. Still need to remove case base and pound out dent.
Mariya got out to see a Creswell basketball game with Ben’s parents. (Ben is the young man whom Mariya invited to the Winter Formal.) Turns out that they are foster parents for two Life Skills students, one of whom passed away recently (and with whom I worked... made a switch-accessible snack dispenser for him and so on), and one of whom was one of my very first students. I’ve met the mom at an IEP before. They will all be invited over after Christmas.
Wednesday. The kids got to go Christmas shopping.
Thursday. Mucosa is worse.
Making honey-lemon-sesame drumsticks for the Junction City Christmas party tomorrow. Marinating overnight. Finished the “wrecking ball” ornament for the exchange.
Friday. Last day of last big chemo week. Just small weeks left until the end of the year.
I stopped keeping up with this journal just before Christmas. It was a matter of missing a couple of days or so, being busy around the holidays (finishing chemo), and then not wanting to go back and fill in all of the days that I skipped.
The chemo seems to have taken care of the cancer (according to a PT scan), and now I am just trying to be patient while I get over the remaining side effects. That’s taking a much longer time than I thought it would, and is getting me down. My sense of taste is back (mostly), but my hands and feet are still swollen and sensitive, my mucosa is still healing, and my hair is only just starting to grow back in around my mouth (i.e., on my head I only have sparse white fuzz). And then there’s the chronic lack of energy (physical, emotional, spiritual, and so on).
We have a follow-up appointment very early in March, after which I should be able to get back to work.
I hope.