Did I leave off baldness?
I can’t believe I forgot baldness.
And dried-out mucous membranes.
And fingernails that look like something off Frankenstein’s monster.
. . . I will not only not feel yucky (that’s a technical oncology term, I’m sure), but I will actually start feeling good, instead of just feeling less bad.
This last chemo hit pretty hard – I’m still having some intense chemobrain moments, although they’re getting farther apart. The normal stomach/intestine action going on; the pains are pretty bad (I’ve had to use “the good stuff” to get any sleep since Monday); the insomnia when I’m not in pain is moderate; the fatigue seems excessive (presumably related to anemia); but the worst thing I’ve got going is the peripheral neuropathy.
It’s hard to type because my fingers don’t really want to do what I tell them to do, and I make a lot more mistakes than usual. The tingling and numbness is the obvious part, pretty much constantly there for now, but when I try to do anything that requires detail work or lots of movement, the clumsiness and lack of control is noticeable. I am even having a hard time knitting, even on big needles, and knitting is so second-nature (kind of like typing) to me I often don’t have to really watch what I’m doing.
The thing I’m most worried about is that it’s gotten so much worse so quickly. Typically by the week after a chemo it had faded to nearly unnoticeable levels – this time it’s even worse than it was early in the week. In some cases, it never goes away; or it can take as long as a year to go away. I’ve also read that the symptoms may not even peak for 3 – 5 months after the last chemotherapy.
But just today I was reading The Hotel New Hampshire by John Irving, and came across this:
“Human beings are remarkable – at what we can learn to live with,” Father told me. “If we couldn’t get strong from what we lose, and what we miss, and what we want and can’t have,” Father said, “then we couldn’t ever get strong enough, could we? What else makes us strong?” Father asked.
. . . my last chemotherapy.
This one has hit me pretty hard – I’m having a lot of pain and quite a bit of stomach/intestinal action, and my chemobrain seems to be pretty bad, too.
Today was one of the first trips out of the house that wasn’t for a doctor appointment in a long time. I had Brian take me to the grocery store today, because there were a few items I just had to have, but the places I usually order online don’t carry them. He would have come in with me, but I assured him it would only take a few minutes, and that I knew exactly what I needed and where to find it.
Of course, it was all being remodeled, and everything was moved around, so I ended up spending a lot longer pushing a cart than I expected. I finally found everything I needed, plus a couple impulse buys, but by the time I was heading for the checkout I banged my cart into several stationary objects. Guess it’s a good thing I didn’t drive the car.
Typing is not working very well right now because of the increased peripheral neuropathy symptoms in my fingers, so I’ll just say that I’m happy to have finished with chemo, and I’m looking forward to getting through the last few weeks of feeling awful, and finally get back to real life!
I’ve been really wiped out the last couple weeks – even though I started the antibiotic over a week ago, things were worse at the beginning of the week than before. As of yesterday, I felt about the same as I did last Friday when I was diagnosed, so the antibiotic doesn’t seem to be helping, which could mean that this is viral pneumonia.
I don’t remember if I went into this before, but pneumonia isn’t a description of a single illness – basically it refers to any infection of the lungs, usually involving inflammation and collection of fluid. It can be bacterial, viral, fungal, or parasitical. So even though I had a pneumonia vaccine in November 2007 that is good for 5 years, the vaccine doesn’t cover every possible source of infection – as a matter of fact, it only covers bacterial infection by the pneumococcal bacterium; and then only about a quarter of the varieties of pneumococcal bacteria out there. So even with its protection against the most common bacterial infections, there’s a ton of other stuff out there that could get me; and with the compromised immune system, even the ones that are covered under the vaccine could still be suspects.
At any rate, when we went in for chemo yesterday, the oncologist expressed concern that I wasn’t feeling better on the antibiotic, and that my white blood count was so low – however, he decided to proceed with the chemo, with strict instructions to report any increased chest symptoms immediately. And if I’m not feeling better by next week, he will probably send me in for another chest CT scan.
Even with the already low white blood count, but with a good neutrophil count (the bacteria-fighting white blood cells), he decided against having me get the daily Neupogen shots next week – they are one of the two ways of getting your bone marrow to start producing white blood cells. The other is only given when there’s at least two weeks between chemo sessions. However, the bet is that as of next Friday, when I go in for my !!SECOND-TO-LAST!! chemo, I will probably have to have them the next week. That’s kind of a pain, since I really don’t feel up for driving these days; fortunately Brian is usually working from home in the mornings, so it’s just a matter of struggling out of bed earlier than I usually can.
I’ve been sleeping a lot, although the last three or four days I’ve started waking up in the middle of the night and being unable to get back to sleep for 3 or 4 hours, but then sleeping hard until late in the morning. I’m not sure if that’s a good sign or not – I’ve been trying to avoid daytime naps since they’re probably one of the culprits (I was only up for 5 hours one day, usually around 8 hours most days for the last week and a half before that). But maybe it’s a sign that I’m finally going to start getting better?
But then there’s chemo. It really has sort of rocketed to my brain this time – I was talking to Brian last night and didn’t remember something that we’d talked about just 5 minutes ago. Hmmm. I’m having more stomach and intestine problems this time around, and the pains are already calling for the good stuff – the morphine. Fortunately I only seem to need it at night, since Tylenol is currently managing it during the day. But even sitting typing, I can feel the tingling in my fingers that means the peripheral neuropathy is escalating. Thank goodness I’ve only got two more sessions! Yay!
Thank you to everyone who is sending all the love, good wishes, positive energy, and prayers – I appreciate them all. It is both motivating and healing to know how many people care and are thinking of me. I think of you-all often, myself, even though I haven’t had the energy to make contact. Hopefully that will be on the mend soon ;-}
Today I went into work today (edited to add: included in the list, avoiding redundancy) instead of working from home – even working just over half a day had me sweating and totally wiped out.
I went in because there are some physical things I have to get ready for our tradeshow starting this weekend, and tomorrow I have to go in to finish them up and ship them off.
Did you know that making copies of CDs is difficult? I don’t remember it being so hard, but between shaky hands and peripheral neuropathy making my fingertips numb, it certainly is now.
Lifting pads of paper, sorting through pieces of paper, writing the same number over and over; these are all things that I wouldn’t normally think twice about (except maybe how boring they are). Today, I was glad that I didn’t have anything more exciting to work on!
But wait! I had to do some proofreading. My nose kept creeping closer and closer to the page, and after I read it for spelling and punctuation, I had to re-read a lot of it for context.
Yikes. I don’t know how long it’s going to take me to get back in shape just to be able to work a full day at the office once I’m done with the chemo – no doubt I’ll do it, because I have to, but man – I feel like less than half a person at this point, not even being able to read sensibly. Sigh.
. . .of the truck that it feels like just hit me?
Today was one of those days when it feels like the zombies are winning. Or, rather, since I was feeling particularly zombified, that they’re taking over, anyway; since I don’t really feel as if I was winning anything.
The usual pains, fatigue, insomnia, numbness/tingling, bloody nose, and today with extra special chemobrain and blurry vision!
I was having a lot of difficulty thinking straight, and if it keeps up like this, I’m not going to be able to drive anywhere. Fortunately I have some good friends who are going to help me out with rides a couple days this week.
I need to talk to the doctor about the blurry vision though. One of the symptoms of high blood pressure is blurry vision, although I don’t know how high over normal that would start showing up. Presumably, once I’m done with the Avastin and my blood pressure is back to normal, I will go back to my previous vision measurements. Although I was thinking I was ready for new glasses before I started treatment, so I’ll probably wait a couple months, then see how it’s doing.
Vision is one thing that I would be devastated to lose – that and my color vision, because both are so much a part of what I do artistically/creatively.
Well, not really a lot to report on myself – same ‘ole chemo problems, different day (actually, most days, but at least I’m getting in a variety).
Robin is doing fine, we saw the vet last Friday, and he (the vet) talked to us for about 45 minutes about whether there was anything we *should* be doing – short of having massive neurological testing, including MRIs and CT scans, we probably aren’t going to find out anything unless he has another “seizure”. The vet suggested that this could have been a “focal motor seizure”, as opposed to a grand mal seizure – the difference being that the focal motor seizure is a disturbance that affects just a small portion of the brain, in Robin’s case it would be a portion of his motor center, because it was just his hind legs, nothing else; whereas a grand mal is a disturbance that locks up the whole brain.
At any rate, it could have been a one-off thing, or if it repeats, we may be able to track down a cause. The vet mentioned that a certain number of dogs develop epilepsy as they age, so it could be the onset of a type of epilepsy, or epilepsy that hasn’t developed fully. He also brought up brain tumors, either benign or malignant, but said that it is unusual to see them develop in a dog as young as Robin.
On Tuesday evening, we did end up taking Robin to Dove Lewis for a totally different issue. Our dippity-do-dawg has the habit of bouncing and barking, and sometimes running after, the cats when their collars jingle. He also has the bad habit of doing this while he’s eating (I think the cats jingle on purpose when he’s eating, and their nefarious plan nearly worked). So Tuesday evening, he did the bounce-and-bark while he had a mouthful of food, and managed to inhale a piece of food. He’s done this before, and usually after a bit of coughing and dry retching, he’s fine. But Tuesday night, he started vomiting, and continued to cough and retch every time he walked around. Finally I called Dove Lewis, knowing they were going to say “bring him in”, and sure enough, they did.
At least he puked and coughed in front of one of the techs, so they could tell something was really going on.
It was pretty busy there – most of the animals seemed to be in for nothing major, although at least one dog was in crisis. However, the doctors got Robin in and checked him over – couldn’t find anything in his trachea or esophagus, or behind his soft palate, but his esophagus was highly irritated and dilated. Got sent home with some soothing medication (I swear, it has a name that includes “sucra” in it, so maybe it is a placebo. But don’t placebos work by faking out the *patient*, not the caregiver? I mean, the dog doesn’t care whether it’s really medication).
Other than that, I’ve got my third February chemo tomorrow, then a two-week break. I’m ready for a break.
Today is a much better day, but no, I haven’t allowed myself to go mess around with the sewing machine again. I did stop at the Sewing Room, and have decided what machine I want, if I actually decide to buy one.
I went shopping, so I don’t have to worry about that for a while – Costco and Safeway were happy to see me.
After the last couple days, I’ve realized that my “natural” organizational talents are coming hard right now – last time I went through chemo, I had come off a major surgery and was only working part-time at home, so if I wasn’t my usual self it wasn’t such a big deal. But working full-time and being able to accomplish anything is going to be a challenge; so I’m spending a little time up front to focus on getting myself a system that keeps me on the right track even on days when there *is* no right track.
One thing that has me thrilled to the depths of my geeky little soul is a new project – my boss (who is the most awesome!) has focused on giving me long-term projects for the duration – as long as I can meet any incidental deadlines on my regular duties, most of what I’m working on right now is stuff that is either data collection or will be implemented down the road. Under the second category, I’m starting to investigate how to convert our style-based FrameMaker documentation to structure-based documentation; which involves learning XML, and will also require determining a “tree” structure for the documentation. Is it sad how pumped I am about this? The last thing (work/techie-wise) I was so excited about was learning how to design databases.
Because of the economy, we’re not doing a lot of events this year, so most of my time that would normally be spent on event-planning/preparation will be spent working on this project, plus a couple others.
So I’m hoping that this tendency towards rapid disappearance of chemo-brain holds true for the rest of the treatment – I really hate the thought of spending most of the next four months in the whacked-out state I was in the last three days. If I’m able to drive myself to the train station, I’ll be happy. Getting on a train going in the correct direction will be a bonus.
1. I did *not* try to fix my sewing machine in order to have to buy a new one.
2. What? Quit looking at me like that!
I really was just trying to rethread it, make sure that it was properly threaded, ’cause I was sure that was the problem.
Then all I did was review the stitch and tension settings.
And I figured that cleaning out the bobbin case couldn’t hurt.
Do you think it was taking out the first screw that was the mistake?
And where was Brian as I was merrily tripping down the “I’ve done this before so there’s no way I can screw it up this time, in spite of the chemo brain” trail?
He saw what I was doing and slunk around the corner, to come back only when I called him to help me get the last screw out. To be fair, he did ask me if I thought I should be doing this – and to be fair, I answered “No,” and handed him the screwdriver.
I don’t blame him, though – he knows that I would never stand for being locked in the garage to keep me away from the sewing machine (and besides, just think what I could have done with two cars and a shop-full of tools. . .).
So I’m blogging right now in an attempt to keep myself from going downstairs and trying just one more adjustment – because surely I have it *nearly* right, and it just needs a little tweaking. . .