Posts Tagged ‘peripheral neuropathy

20
Apr
10

Sunday, Lovely Sunday

My Sunday started on Friday, when Brian and I tried something I wasn’t sure I was really up for – meeting friends for dinner. In preparation, I took a nap Friday afternoon, and felt about as rested and ready as I ever feel these days. We met Shawn and Hope downtown at Mother’s, and we were there for a little over two hours. We’d warned them that I might be quiet unto napping, if the chemo was picking on me that day, but the nap seems to have headed that off, and I was able to be a full participant in the conversation.

Hope brought a photo album of her dog Scampers, who is just adorable – you can tell that he scampers pretty much everywhere. She also told some very amusing stories about how her cat (sorry, brain fade on the name) entices the dog to play with her. We had a very enjoyable dinner, and the promise that we will get together again soon when it is a good time in my chemo cycle. I’m looking forward to that!

I wasn’t up for much once we got home though. That’s the way it usually works – I can push myself to be on for a couple hours, but then it’s back into the pumpkin. Brian and I played Yahtzee (probably the simplest game we have, and all that I was up for), then went to bed by 9:30 – 10:00.

Saturday our friend Cathy and her dorky Augie came down from Longview. We talked knitting, and she helped me figure out an alternate way to accomplish something that my peripheral-neuropathied hands were having trouble with doing by the book. I had to stop part way through and go take an emergency nap, although it was mostly an emergency close-one’s-eyes-and-rest – at any rate after about an hour I felt as if I’d recouped some energy. We all went to the Mad Greek Deli for a late lunch (mmm, lamb gyros!), and got some various baklava to go.

That evening, we had crockpot potroast with garlic bread, then watched Time Bandits. Just as my favorite part of the movie came on, I got smacked by yet another “you must lie down now” brick, just out of nowhere. I stumbled up the stairs, and slept through booms and roars, sinkings and burnings, as well as ogres, Supreme Beings, and Pure Evil. Good thing it wasn’t incumbent upon me to rescue the world from Pure Evil; or if it was, well, sorry.

Sunday morning I got up relatively early (8:00 *is* early, for me at least), made a pot of coffee, and set out the baklava. We all relaxed, and Cathy and I knitted some more; round about noon, I suggested that we go lie out in the backyard in the sun. As it turned out, we only lay in the sun for a half-hour or so, then moved into the shade, as it was quite hot in the sun. I read several chapters of “The Light Fantastic” by Terry Pratchett to Brian and Cathy (and Augie and Robin, although I doubt they were really listening). Eventually we came in, had lunch, played a game of Uno (Cathy creamed us); and then Cathy had to head on back home.

What a lovely, relaxing weekend, and especially Sunday! It is days like this, with good friends and quiet enjoyment that make the miserable days of treatment worthwhile.

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13
Apr
10

Chemo #3 – Days of whine and noses

The whine is mostly about a long list of side effects from the chemo – going in-depth on each one would be a very long, boring, and sometimes disgusting post. So instead, I will focus on the ones that are giving me the worst fits.

Abraxane, being a variant of Taxol (or Taxotere) has pretty much the same side effects. I’d hoped that having the different base would mean that some of the side effects would either not happen, or be less intense. No such luck.

By far the worst side effect is the pain. Muscle, joint, and bone pain all are omnipresent, and they get worse with the Neupogen and Neulasta shots to boost WBC and neutrophil counts. Bless Margaret, a lady I have yet to speak to other than by e-mail, for turning me on to the wonders of Claritin. I took a Claritin Friday instead of my usual OTC generic Zyrtec allergy pill, and had a nearly pain-free day. Saturday morning I had a Neulasta shot (because there’s two weeks between chemo 3 & 4; Neupogen is for when you have chemo every week). I checked with the oncologist about using the Claritin instead of the Zyrtec, and he said he’d heard anecdotal evidence that it helped control the pain with Neupogen shots.

Apparently it doesn’t work so well with the Neulasta shots, as Sunday and Monday I have been back to the incredible relentless pain; with the Neulasta it tends to focus in my long bones (femur, humerus), although I do have some joint issues in shoulders, elbows, knees, and hips as well. I’ve been taking at least two hot baths a day, usually with Epsom salts – that will temporarily relieve the pain. Brian massaged my ankles/knees/thighs and lower back last night, and that helped while he was doing it, but as soon as he finished, it was totally back.

I’m trying to get in a little bit of exercise each day, on the theory that if I don’t use it I’ll lose it; and in hopes that it will help with the pain. Yesterday I walked down to the mailbox with the dog, and it wasn’t a sure thing that I was going to make it back to the house – it completely exhausted me. I would say that the movement did help briefly with the pain. I also try to move around the house and go up and down the stairs as much as I can; although I got to the bottom of the stairs yesterday afternoon, and couldn’t go up, but couldn’t make it back to my chair. I sort of collapsed with my knees on the second stair, my forearms on the fourth stair, and my forehead on the fifth stair. Brian found me like this, and retrieved whatever it was I’d wanted from upstairs. He offered to help me back to my chair, but I was being stubborn and said “No, I’ll get there eventually”. And I did. I think he checked on me a couple times, though.

The other real PITA thing is all the problems with my nose and sinuses. I get bloody noses (mostly just a tinge of color, but indicative of more and worse to come). I get extremely congested, and can’t clear my nose, especially if I’m laying down. I use a saline/baking soda flush a couple times a day to help get it cleared out, but woe is me if I don’t do it at all. It’s like having a bloody cold. Yuck.

I guess the good news is that the flushes have become easy to do since I have to do them so often, so my reasons for not doing them just for my allergies have all gone by the wayside.

Oh yeah, and the mouth sores – those I thought I could avoid by having ice chips before the abraxane – it certainly worked with the adriamycin and the taxol; they’ve gotten better, but still hurt and make it difficult to brush my teeth.

Did I mention the exhaustion? So tired I can’t keep my eyes open, but often not sleepy enough to sleep. I’m not sure if it’s this that’s ruining my concentration, or early onset chemobrain. I’ve tried knitting on a hat I’ve had in the works, and keep messing it up. What the chemobrain doesn’t impact, the peripheral neuropathy does (thanks to adding in the Avastin this past week).

So, there, I ended up whining about more than I’d intended. I’m hoping that the weather is going to warm up some this week so maybe I can go lay in the backyard in the sun for a bit. I’m bored, mostly because I don’t have the focus or stamina to read, knit, bead, play games, etc. I still hold that, if I were retired, and without having to endure treatment of any kind, that I wouldn’t be bored at all. And indeed, when I’m working on a piece of knitting, or reading, or stumbling down to the mailbox, I’m not bored. It’s all the time that I spend unable to do any of these things that I am bored. Sadly, even sleeping is only good for a couple hours at a time. And it’s really bad when I am awake at night. Then I can’t even pester Brian.

I have been watching some movies, recently. I finally watched “The Perfect Storm” and “The Shipping News”, and rewatched “A Midsummer Night’s Sex Comedy” by Woody Allen. Bless you, Netflix!

23
Apr
09

One of these days . . .

. . . 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.

04
Apr
09

pneumonia vs. chemo

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 ;-}

09
Mar
09

March 9, 2009

Definitely starting to feel the build-up of side effects, and at least one new one.

I’ve been spending a lot of time sleeping this weekend and this afternoon – as well as sleeping through the night the last three nights (hey, that’s nearly unheard of for me recently – mostly I’ve had insomnia). The bone and muscle/joint pain is getting worse, although so far the pain pills are still taking care of it.

But this time, instead of peripheral neuropathy, my nailbeds hurt on both hands. With the Adriamyacin (my previous chemo) my nails turned black, but there was no sensation involved with it. For the Taxol, one of the side-effects can be blackening of the nails, but there’s no indication of pain. So I don’t know if it’s just a modified version of the nail-blackening (which hasn’t happened yet – still pink), or a modified version of the peripheral neuropathy.

My blood pressure was up on Friday, and I asked if 148/83 was high enough to be worried, but apparently it wasn’t. If I’d looked up the symptoms of high blood pressure prior to our meeting with the doctor, I’d have asked a different question. The Friday before, I was puking-sick with a bad headache – one of the basic symptoms of high blood pressure (well, OK, it says nausea, but first comes nausea, then comes puking). Could that be related?

At any rate, I’m still feeling very fatigued in spite of taking a couple-hour nap this afternoon.

One of the things that I did regularly with the first bout of cancer was to listen to guided imagery CDs relating to surgery, chemotherapy, insomnia, general wellness, fighting cancer, and later, weight loss. I started out listening to them this time, but haven’t kept up on it. I’ve decided that I need to start listening to the CDs again to see if this improves my mood – it is definitely one thing that I’m doing differently this time around, and I’m tired of feeling low.

And just to relieve any concern caused by yesterday’s post, the two people who were so rude were neither family or friend – one was a complete stranger, riding the train; and another was an acquaintance that I’d already determined was not someone I want to spend time with.

Everyone else has been extremely supportive and caring, and I appreciate it greatly; even, for the most part, complete strangers have been very supportive.

It’s only 7 p.m., but already I’m thinking about how soon I can go to bed ;-}




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