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.

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

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.

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.

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!

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.

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.

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.

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.

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 ;-}

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.

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.

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 ;-}

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!

February 19, 2009

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.