Posts Tagged ‘insomnia

06
Jun
10

Oh yeah . . .

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.

06
Jun
10

Side Effects for your Delectation

I made up a quick off the tip of my fingers list of side effects that I’m currently suffering. This is to present to Dr. Medici when I ask him exactly what he means when he says chemo shouldn’t affect every day life. Again, this was just the list I came up with after 10 minutes thought:

Side-effects with Abraxane, Avastin, Neupogen, Neulasta

1. Muscle-and-joint pain (A, A)

a. Controlled using Oxycodone1/2 pill ~ 4 hours/day, Morphine Sulfate 1/2 – 1 pill ~ 4 hours/night. Replaces fatigue/inability to focus mentally with drug generated instead of chemo generated (or exacerbates it, possibly). Can’t drive.

2. Fatigue

a. Trying to get up and walk around the house periodically, carry weights, do some stretching
b. Mostly napping

3. Inability to focus mentally

a. Can’t drive
b. Can’t read, knit, quilt, bead

4. Peripheral Neuropathy, fingers, large toes, lips, tongue

a. Using L-Glutamine to control it, marginally successful
b. Can’t knit, quilt, bead, turn pages in books
c. Concerned about driving

5. Bone pain (N, N)

a. See 1a
6. Liver pain, occasional pains elsewhere in abdomen, that appear to be unrelated to intestinal pains

a. See 1a

7. Mouth sores

a. Can’t brush teeth using anything but finger and Biotene

8. Sense of taste corrupted – everything tastes like sh*#

9. Insomnia at night

a. Using Ativan, currently using 1 or 2 pills ~ 4 hours

10. Constipation

11. Rash on hands and now arms

a. Burns if water warmer that lukewarm
b. Feel scraped if I accidentally rub them against something
c. Otherwise, mostly just red and ugly

12. Runny nose

13. Bloody nose (Avastin)

14. Drooling at night when laying in bed

a. No problem if I sleep in recliner, otherwise causing skin problems on face.
b. Causes sore throat from breathing with my mouth open
c. Related to Periph. Neurop, mouth sores?

15. Nausea
a. Fairly mild
b. Controlled by Compazine

16. other

26
May
10

What Dreams May Come

I’m not so concerned about those *after* I have shuffled off this mortal coil as I am taken aback at the intensity of some of the ones I have under the influence of either chemo drugs, pain medications, or the combination.

I usually don’t remember them, mostly I remember bits and pieces (this one involved a lost dog somehow, or that one was a scary one involving people being tied up, possibly in a home invasion scenario).

What I do remember is that they are often disturbing on some level, even if I don’t remember the specifics; I can still feel the fear or strangeness that pervaded the dream.

I’ve mentioned them to the doctor before, but Brian is lobbying for me to tell him again. I figure it won’t do any good if I can’t give him details, but maybe Brian’s right, and just knowing that they’re scary dreams will give him an angle to work with.

14
Apr
10

Iowa Stubborn? Nothing Compared to Greenlaw Stubborn.

The song says: And we’re so by God stubborn/we could stand touchin’ noses/for a week at a time/and never see eye to eye

Me? I’m just stupid-stubborn.

I can’t decide if it is a case that I felt as if I needed something I could control – we’re pumping all these poisons into my body to kill something that is out of control, but by God, I’m not going to take any drugs I don’t have to; or if it’s more that I felt I shouldn’t be having so much pain, so I refused to acknowledge (whine, yes; acknowledge, no) that I was nearly crippled by the pain I’ve been having.

Damn it all! I can take care of it by just ignoring it, trying to move through it, blogging about it; but take a pill, NO!

So instead I ended up at the ER for 5 hours last night because the pain in my chest was so bad that I knew Dr. Medici would have a fit if I didn’t go in. His concern is that chest pain could be a sign of another pulmonary embolism. I was guessing that it was just a new and interesting chemo side effect, but was willing to consider that maybe I’d gotten pneumonia again; as it turned out, it was nothing that could be identified, so the (very kind and sweet) ER doctor had a serious discussion with me about pain management.

Initially I refused to have them put a morphine drip into my IV, but they convinced me to have at least a little bit. After that kicked in, my brain (oddly enough, on morphine) cleared, because all of a sudden, I was down from a 6 – 7 on the pain scale to about a 2 – 3. I began to see the insanity inherent in my “no drugs” position – I don’t have to suffer, and if there’s some perverse sense of satisfaction at betraying my body which has betrayed me, then I really do need some sort of mental health counseling. And if it’s just being Greenlaw Stubborn (my maiden name – whatever else we are, stubborn is possibly the number one trait that my immediate family has in common), then it’s stupid-stubborn. I have my moments, but I’m not stupid. Not for long, anyway.

So I asked, “Please Ma’am, may I have some more?”

Today I called Dr. Medici and asked him for prescriptions for day/night pain pills. One of my reasons for not taking pain pills is that I don’t want to have my brain fogged; but I can see now that the pain had my brain fogged at least as much, if not more, than any pain pills will; plus the lack of sleep due to pain has just been fogging it more. I haven’t felt up to driving due to the pain and foggy-brain, so it’s not like I’ll be missing out on anything by not driving because I’m on pain pills.

My biggest worry is addiction. My mother was an alcoholic, and I have sworn that I would never allow myself to become addicted to anything (gaming excluded – not gambling, RPGs). I think this is truly the root of my concern about taking pain medication. Anything that is going to truly help is an opoid, thus addictive. I also have been trying to avoid taking insomnia medication for the same reason, but have been doing so when the pain was so bad that I just couldn’t sleep at all.

The good news there is that the more pain medication I take, the less insomnia medication I will have to take. At least if I do end up having to break an addiction, it’ll only be to one thing!

Also, I think it is pretty likely that a lot of my emotional distress has been caused by the pain – thinking that I’m less than one month into the rest of my life going through some form of treatment or another, and that much of it might be defined by the kind of pain I’ve been suffering has been extremely depressing. Yet another type of fog that should lift with the cessation of the pain.

So I’m waiting to hear back from the pharmacy on when my prescriptions will be ready. I have overcome my stubborn streak, at least this once. Hopefully any brainfog from the pain pills will be less than that garnered by the pain itself, and I can start to feel human again.

And seriously, I understand that I have reason to be depressed even without the pain; but that’s just not like me to be *so* depressed. I’m a strong woman, and typically have an optimistic outlook – it was a road I traveled for many years to get me to that state, but once I achieved it, it hasn’t been hard to find the positive mindset even under significant pressure. I look forward to getting back there.

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!

26
Sep
09

Back in the Game

I’m not a sports fan, so using a sports analogy is not really second nature, and anyway, probably falls under the heading of cliche. But I definitely feel as if the last two years have been one big sideline experience.

Or I could use the science fiction cliche of living in an alternate universe for two years, and I just found my way back through a wormhole to real life.

If I wanted to be really cruel, I would use that horrible deus ex machina of feeling like it all has been a dream (sometimes a nightmare) – of course, then I’d have to end with “and I woke up, and it was all a dream”. Sadly, it hasn’t been.

I still get tired, I still have insomnia (but then, I did *before* cancer, so is it just my normal insomnia, or the insomnia that they claim comes from being a cancer patient? And does it matter? Insomnia sucks, either way.), I still have days where I feel sad or out of sorts; but for the most part, I am living life again, instead of watching it through the lens of a cancer patient.

The cancer patient glasses have many different view settings, and not every patient uses all of them.

Some wearers do the rose-colored glasses, and view cancer as the best thing that has ever happened to them, because it has led them to rearrange their priorities, appreciate life and loved ones more, and become more spiritual, compassionate, and altruistic. And for some people, it does work that way; perhaps perceiving that it does all this is a self-fulfilling prophecy, and thinking it does make it so.

A polar-opposite pair of lenses is the “grass-is-greener” spectacles. “Why did *I* get cancer? Look how happy everyone else is. How can they be so happy when I’m sick? If only <fill in the blank with healthy lifestyle choices you didn’t make, the name of the deity who could have prevented this, the person whose genetics doomed you to this, the stress or event that might have triggered the disease, the person whose love would have led you on another life path and this never would have happened, the way you could have avoided the environmental pollutants that have caused this, the government who should have regulated said pollutants better, etc.>”. Oftentimes, these glasses include self-blame, or simply envy that others are free of the scourge.

Rather than being peaceful, blue lenses are all about sadness and grief. Although many days may bring simple low spirits, it is easy to find depression, despair, and hopelessness looking through blue.

One of the worst are the blackout lenses – all one can see through these is fear. Fear of treatment; fear of recurrence or metastases; of pain; of loss; of abandonment, bankruptcy, and incapacity; and fear of death. Sometimes, fear becomes a way of life. For some, only briefly; for others it stretches on long after one finishes treatment. Even good things can cause fearfulness – one might fear seeing other people because they’ll be kind and make you cry.

Red is anger – pretty clear what one sees here. “I have cancer.”

But most lenses are mirror shades, only they’re mirrored on the inside, so you only see yourself (and perhaps a smoky image of things on the outside). This view can cause many reactions in cancer patients. How am I going to get through this? My life will never be the same. I’m disfigured. My cancer is worse than yours. Bids for attention. Grasping for everything people will give you – pity, support, whatever. The martyr syndrome.

Sometimes one even realizes that the view is skewed, but it doesn’t change the fact that you see what you see.

How much harder it must be for someone who has metastases or a terminal diagnosis! To be able to come through the ordeal with the knowledge that you’re cured but with a chance of recurrence; and to take off the cancer glasses and be able to go back to life, rewritten, perhaps, but still “normal”, is something to be proud of.

But for someone for whom the “new normal” is to live their life with ongoing treatment and an unsure future, is there life without the glasses? To deal with it at all is something to be proud of; and it is our job, as their friends and family, to be on the outside of whatever lenses they wear, providing a pool of love and normalcy for them to dip into when they need it, and can handle it.

Of course, that is true for even us curable cancer patients – I had an ocean of love and normalcy around me due to all the friends and family who supported me and let me know they were there even when things were difficult. I would not have had the courage to remove the cancer lenses without them. I can only hope to be part of such a source for those I love who need it in their turn.

14
Jun
09

The Bridge Over the River Exhaustion

I finished my second week of full-time work on Friday, and although I was tired, I wasn’t totally wiped out. Slowly I’m starting to build some stamina. I am trying to park farther from work, so that I have to walk farther; and I’ve been having to do some physical stuff at work – moving boxes and stuff in preparation for shipping to events. But come Saturday, I don’t have much energy, so again this weekend I have spent a lot of time reading.

One of the ways to work a dog to exhaustion is to make him think – we find that if we start training Robin to do some new trick, and spend enough time at it at any one time, he is as tired as if we took him on a long walk.

We had dinner with Sharon and Gary Saturday night, and then they started teaching us how to play Bridge. Taking tricks is nothing – all the important (and confusing) part happens before you ever lay a card on the table. By the time we’d played 5 hands, I was so tired that I totally forgot the conception of a trump card, and was playing as if I was playing Hearts. Fortunately, Gary (my partner) was not only kind, but forgiving also ;-}

This afternoon, Robin was in dire need of a walk. So I girded my, um, feet, and we walked around the block. I’ve measured it in the car, and it is 1/4 mile. Having thought ahead a bit, I headed downhill to start, because then I was walking uphill on the middle of the walk, and downhill again on the way back home. I’m pretty sure that’s the only reason I made it all the way around. Once we got back in the door, I collapsed into my recliner and just lay there for about 45 minutes.

I really need to start getting out with him every day, the way I used to – *both* of us need it. I also need to start working on some strength exercises. There’s a balance between pushing to get myself back to being relatively fit and overdoing it; so far, I haven’t been pushing at all, because it has been such a struggle just to be able to get back into work. Now that I’m back to full-time, and as it levels off to being normal, and not such an effort, I am going to start adding in the exercising a bit at a time. It’s really tempting to start by just doing everything I used to do, but I actually recognize (without having to have a doctor tell me) that I’m not ready for that yet. Patience isn’t really one of my virtues, but I’m working on it, and trying not to let patience be an excuse for total sloth.

It doesn’t help that I’m still having trouble sleeping – I find that I am getting somewhere between 4 and 6 hours a night. I really try to get to bed earlier, but I have trouble falling asleep, so I’ll get up and read a chapter until I feel tired again; then I lie awake trying not to think about not falling asleep; eventually I do sleep, but it’s very broken. I have been having very interesting dreams, though. Guess I’m making up for the lack of sleep by trying to make what sleep I do get worthwhile. Recently I’ve been dreaming about a book I was reading; and last night I dreamt about Robin, and about Brian and work, too. It’ll probably be the only time I ever see Robin go swimming.




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