Posts Tagged ‘insomnia



07
Jun
09

Foreign Objects and Me

The surgery to have the chemo port removed was very quick – indeed, we spent more time between when my appointment was scheduled and when it actually started (1 hour) than we did undergoing the surgery (20 minutes, including changing into/out of the gown).

The numbing agent was just injected, and the surgeon started cutting before it had completely taken effect – it was very quick to get me numb (30 to 45 *seconds*), but she was quicker still. The first thing she did was cut out the old scar (it was very thick and red from having been cut open 3 times already – 2 ports in, 1 port out), and she told me that this would help keep it “pretty.” Considering the number and size of scars on my chest, and my displeasure about the appearance of my right-side implant, I can’t say that I think this is really going to make things prettier.

After the numbing agent kicked in fully, all I could feel was tugging, and I didn’t feel the tubing being dragged out of the vein at all. A few stitches, steri-strips, a cotton gauze pad, and some tegaderm later, I was dressed and Brian was driving me to Dairy Queen for the obligatory Heath Bar Blizzard after a medical procedure.

Friday afternoon the numbing agent seemed to be still working, because I didn’t really feel much at all. As the evening wore on, the pain grew, and it looked like quite a bit of blood had leaked. The pain kept me awake a long time that night. I was using ibuprofen because it seems to help the most with pain for me, but it wasn’t enough to let me sleep. Eventually out of sheer exhaustion I did fall asleep around 3:30 a.m. Saturday day was much the same painwise, until later in the afternoon it faded considerably. That evening and night, though it got bad again. So far today, it’s been pretty mild – I can take the tegaderm and cotton gauze off this evening, so we’ll see if that helps.

So the number of foreign objects in my body has now been reduced by 1/3.

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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 ;-}

16
Mar
09

Did you get the license number. . .

. . .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.

12
Mar
09

So obvious. . .

. . .when I actually stop and think about it.

I have been so down, both physically and emotionally, that I haven’t been *really* thinking. Mind spinning, but nothing getting accomplished.

Finally, this week, I was so wiped out that I physically had to stop. The doctor told me I needed (well, OK, sort of *ordered* me) to limit my working hours, because my numbers haven’t been bouncing back very well. I have worked from home 1/2-time this week, and although I’m still very fatigued, and so weak that I could barely walk all the way out to the back yard to sit in the lovely, lovely sun, I feel better emotionally than I have in a long time.

One of the first things they tell you in the support group/class is that you have to take care of yourself.

I have been so focused on trying to be strong, and trying to miss as little work as possible (hey, it *is* the second time in 1-1/2 years I’ve had cancer, and I missed a lot of time last time around, even though it was FMLA time, and unpaid), and trying to do everything I can do when I’m healthy, that I had myself convinced that using DinnersReady to have meals in the freezer, and working full-time, just from home when I didn’t go in to the office, constituted taking care of myself.

How blind we are to our own limits!

I only have to be strong *enough* to get through this physically. If I take care of myself physically, the emotional part will also be at least partially taken care of.

Having to have the doctor tell me that I needed to take better care of myself physically, and to limit what I do made me really look at how hard I’ve been pushing.

I’m naturally a pusher (yeah, go ahead, giggle all you want) – I hate leaving things undone, and even though intellectually I know that other people can do things that I don’t get done, I feel compelled to try. The doctor called me a Type A personality – and the funny thing is, I really thought I’d left that behind me. It’s obviously a process, and when the going gets tough, I revert to type – in this case, Type A.

I don’t ever want to feel as if my job isn’t important to me, because it is. I want to do the best I can, always. But it took the doctor to remind me that the best I can do while on chemo is not the best I can do under normal circumstances.

People keep telling me how good I look this time – trust me, whatever it looks like on the outside, it’s bad inside. Actually it’s worse this time, even with low-dose spread over 4 months vs dose-intensive spread over 8 weeks. For whatever reason, I skated through chemo on Adriamycin – oh, I had side effects and felt extremely fatigued, but I was already limiting my work hours from having taken time off for surgery, and there was no expectation that I was going to try to work full-time then. But the pain, the digestive/intestinal side-effects, the insomnia, and the build-up of the other Taxol/Avastin side-effects as I’ve been on them for 2-1/2 months is a lot worse than that.

In one way it was very freeing to have an authority (the doctor) tell me I had to slow down – I let go of the worry, for now. This time is different than last time, and I have been feeling upset that I wasn’t coping as well as last time. But that’s OK – I don’t have to cope the same, be as strong, or as humorous, or as positive; I just need to be enough of these.

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 ;-}

22
Feb
09

February 22, 2009

Yuck.

I mean it. Yuck.

This evening is the worst I’ve felt since chemo started. I have been sleeping most of the day, my bone and muscle pain has been down most of the day actually, but this evening is starting to edge up; I’m feeling some tingling and numbness in my extremities, my left hand in particular (peripheral neuropathy); my head is aching terribly, I’m having mouth sores start to develop (that was a regular thing with the Adriamyacin, only had this once before with Taxol); my mouth tastes terrible, and anything I eat tastes terrible; smells are really getting to me, I’m feeling dehydrated, and I keep swinging between feeling chilled and having hot flashes; my stomach is nauseous, enough so that I thought I was going to puke earlier, but the feeling passed; and there’s intimations that all is not well on the intestinal front.

Let’s see – oh, yeah, and my chest is hurting again. I’m not having any problems breathing, but I know if I call the doctor tomorrow, he’s going to want me to go to the emergency room. It’s probably just because I slept wrong, since my neck and shoulder on the same side feel tight and sore, so I’m going to try to stretch some to see if that helps. If it gets worse, of course I’ll call the doctor, but I’m *really* sick of having to go the emergency room for anything that might possibly be a pulmonary embolism. If it really were, I’d probably be dead by now!

So, wah. That’s where I’m at right now. Time for more drugs. Hooray for anti-nausea medication ;-} I may take some sleeping pills, too, just to see if I sleep better tonight than I did last night – the first couple hours were good, but then I lay awake for another couple hours, and then I got up and finished knitting the second sleeve on my current knitting project. Fell back asleep in the recliner, got another 3 hours of sleep there; took a long nap this afternoon, then again this evening. If I weren’t feeling so crappy right now, I feel as if I could sleep another 9 or 10 hours.

But the good news is that I’m halfway through the chemo. Only two more months to go! Woot!




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