Archive for March, 2009


OK, this is not funny anymore. . .

. . . I have pneumonia. Again.

The doctor doesn’t know why – I don’t think he really cares why, he just wants to get me over it so he can keep poisoning my body.

Which, most likely, is one of the reasons I have pneumonia again – the compromised immune system can’t beat back those germs that healthy people shrug off every day. At least we caught it early again; apparently I am ultra-sensitive to the pressure of fluid building up. Interestingly enough, it is only happening in my left lung, which is the same as the last time. The pulmonary embolisms were one in each lung, but I’ve long had pain in my left chest (heart problems ruled out); and the cancer was in my left breast. No wonder they call it sinister!

The first round of pneumonia responded to Levaquin, which is a very potent antibiotic. On second thought, maybe Dr. Medici is gleefully rubbing his hands together going “mwa-ha-ha-ha” that I have pneumonia, because seriously, this stuff has the potential to be as bad as Taxol and Avastin – it can cause temporary or permanent nerve damage, bleeding problems, seizures, hallucinations, and tendonitis or tendon rupture, amongst the five pages of warnings that came with the cute little bottle.

At any rate, one of the problems it can cause is sleeplessness, and right now, as tired as I am, I cannot sleep. Of course, I couldn’t last night either, so it may be totally unrelated to the Levaquin.

So anyway, that’s how *my* week is going. I’m mildly depressed, and massively annoyed at being sick again – hey, chemo by itself is enough. But Brian is back home from his trip, and that’s wonderful, and the cats have been very cuddly recently. . . hmm, I seem to recall that they were pretty cuddly back the first time. I guess they’re pretty sensitive to this, also. Great – now whenever one of the cats wants to sit on my lap, I’m going to get paranoid. I mean, I woke up this morning with a cat lying on top of me purring – and today I’m diagnosed with pneumonia. Cats as diagnotic tools – guess I won’t go there about whether he was doing a scan or not. Oops, sorry, I went there.


Bacheloretting, briefly

Brian has flown down to visit a friend who lost a sister to colon cancer, and then is going to visit his Mom and help her out with some things she can’t do herself, so I’m alone from last night through next Thursday.

Brian almost didn’t go because he was worried about leaving me alone right after chemo – I reminded him that the last time I had chemo he left me alone for a few days while *he* went on our normal family Christmas visit, and the worst thing that happened was that I fell up the garage steps and strained one of my arms when I grabbed the door handle (only the door wasn’t shut tight, so the door swung open and pulled on my arm, only I had just had my mastectomy 2-1/2 months prior and neither arm was supposed to be used, lifted, pulled, etc.).

Somehow, that didn’t reassure him.

Then I told him that Sharon is right across the street, and has promised to check on me, and give me rides if I need any. Also, I had suggested that I could call Cathy if he *really* was worried about it, and that I was sure she would come stay – he decided that I would probably be fine, since I’m pretty sedentary (read: totally wiped out) after chemo anyway, and that the worst trouble I could get in would probably be spending too much time in my recliner.

As it turned out, I was on the phone with Cathy last night, and when I said Brian was out of town, she immediately offered to come stay – so she’s coming down today, and we’ll probably do all sorts of arty/crafty things for a couple days. When I’m not sleeping that is. I’m just about to go work on my quilt, but decided I wanted to tidy up my office a little more – after all the sorting I’ve done I’ve got a lot of papers relating to crafting that need filing in binders.

I may do a Lord of the Rings movie marathon; or who knows. I have to say, the bottle of port is tempting me, but the way my stomach feels, it’s just going to have to wait.

Had my neulasta shot this morning, and already the pain is starting, so I guess it’s time to go take something, and see where the day goes from there.


Things I never knew were difficult

Today I went into work today (edited to add: included in the list, avoiding redundancy) instead of working from home – even working just over half a day had me sweating and totally wiped out.

I went in because there are some physical things I have to get ready for our tradeshow starting this weekend, and tomorrow I have to go in to finish them up and ship them off.

Did you know that making copies of CDs is difficult? I don’t remember it being so hard, but between shaky hands and peripheral neuropathy making my fingertips numb, it certainly is now.

Lifting pads of paper, sorting through pieces of paper, writing the same number over and over; these are all things that I wouldn’t normally think twice about (except maybe how boring they are). Today, I was glad that I didn’t have anything more exciting to work on!

But wait! I had to do some proofreading. My nose kept creeping closer and closer to the page, and after I read it for spelling and punctuation, I had to re-read a lot of it for context.

Yikes. I don’t know how long it’s going to take me to get back in shape just to be able to work a full day at the office once I’m done with the chemo – no doubt I’ll do it, because I have to, but man – I feel like less than half a person at this point, not even being able to read sensibly. Sigh.


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.


Someone gets it. . .

Don’t get me wrong – I know there are a lot of people out there who have or have had cancer and know (even more so than I) how scary, stressful, and depressing it is. Just look at the books out there, the famous people who have had cancer, the people who blog about having cancer, even the phone numbers and e-mails in my address book of people who have/had cancer. There’s no lack of experience for me to turn to in order to have sympathy and understanding.

But my friend Cathy, who was the only one to cry when I told her about mine, knows intimately the dark side of having cancer, and still has been there for me, when I have reached out and when I haven’t; in spite of the fact that she, like so many of us, would like to put cancer behind her.

Long Time, No Nothing

Cathy is one of the reasons I have strength to go on, because of her friendship, and because she doesn’t let me get away with moping – she always gives me something to laugh about, even if it is a dark laugh. And because, like the artist she is, she can make me catch my breath with something as stunningly dark and beautiful as her post.

Love ya, Cat!


Flashbacks, non-acid-related

It just occurred to me when I felt this exact same way – unable to concentrate on books, knitting, work, movies; and even more, when I really didn’t *want* to concentrate on anything – it was after my mastectomy in September of ’07, and for about 7 or 8 weeks afterward. Admittedly, I had another bout of the same thing related to chemo in December of ’07, so I presume that the chemo is catching up with me finally.

I tried to read The Sound and the Fury by William Faulkner, but oddly enough, the random thought-pattern of Benjy was too much like my own chemo-brain pattern to allow me to focus. Instead, I read Death in the Clouds by Agatha Christie – I think I can truly say that I’ve finally found a Christie I could not estomac!

I was going to watch a movie tonight, but I just didn’t feel as if I had the energy to sit through something more than an hour long; and since we don’t watch TV, I don’t have a clue what might be on broadcast.

I knit about 6 rows on my current project, but when it came time to do the cabling again, I put it down because it required concentration that I’d obviously been lacking when I purled some knit stitches on the previous row. I had the presence of mind to be able to fix them as I came upon them, but clearly I shouldn’t have been knitting in the first place.

Conversely, last night, Brian was trying to fix a problem with our amp, and popped in a movie so he would know when he got sound. It was The Wizard of Oz, and for a good 45 minutes, I sat there and stared at the movie, mouthing the words of both dialogue and song based on what was playing on the screen. Guess that was about my speed. . .


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 ;-}


Prisoner of . . .

Arthur & George, by Julian Barnes, pg 198:

“Some prisoners counted off each day until their future release; George could only get through prison life by treating it as the only life he had or could ever have.”

When I read that, it felt so true. I guess I’m really a prisoner of my own mindset about having cancer again, but inside me, it feels as if the cancer itself is holding me prisoner.

I miss (!?!) the first time I had cancer. I was able to approach it with a sense of adventure – not that I was enjoying having cancer, more that by approaching it with humor and as if it were a once-in-a-lifetime experience I was able to get past the fear and worry that were always there at the bottom. I do believe that it helped me reshape my ideas about what is important in life, aided by the book The Four Agreements by Don Miguel Ruiz – and as I’ve said before – if you have thoughts about wanting to change your life’s direction, *don’t* wait until you have cancer to do so.

Because I have so withdrawn into myself this time, I’m not able to find as much humor in it as I did before. Even though the prognosis really isn’t any different than the first time around, I haven’t wanted to discuss my experience this time, and I am more of a room with a closed door.

I have been turned off my support group this time by an influx of new people who complain about coming to a group and hearing all the stories of those of us who have recurrences or metastases – I truly sympathize with people who are facing this for the first time, and especially at a lower stage of disease it is hard to hear about someone who was at their stage and had a recurrence, no matter how short or long a time after their course of treatment was done; but how do you think it makes those of us feel to be looked at as a source of horror? It hurts, it starts us in our own feedback of negative emotions, and for those who have Stage IV, I can imagine it being pretty devastating.

And for those one or two people who have told me to “suck it up”, I say, “fuck off”. Even having cancer yourself doesn’t give you the right to say that to me. I will handle it in whatever way I best can, and if right now it is by withdrawing into myself, and not making contact with everyone I know, then that is how it is going to be.

For those of you (the vast majority of friends and family) who have offered me so much love and support in spite of my state of being incommunicado, thank you for understanding. I will reach a point where I find my mojo again and am able to reach out again – it just takes time.

I came across this post the other day, and it is a fairly accurate description of how I feel in general right now. If I Only Had a Brain


Whether the stone hits the pitcher, or the pitcher hits the stone . . .

. . . it’s going to be bad for the pitcher.

For pretty much all of my adult life, I’ve always seen myself as the stone. I learned to become the stone, because it hurts to be the pitcher. So I became the stone, *believed* I was the stone. Even when I clearly was the pitcher, my belief in being the stone got me through some difficult times.

Especially through my first bout of cancer, I was the stone. Mentally, emotionally, physically, I was the stone that battered the cancer pitcher. It didn’t have a chance.

This time around, I believed I was the stone. And at first I was.

More often, though, I’m starting to have days when I believe I am the pitcher.

But even if I can’t be the stone, I *will not* be the pitcher. If I am just a pebble, then there are other pebbles around me and, united, we can crush the cancer pitcher.

To all my fellow pebbles, thank you for your love, and strength, and giving. And for all you pebbles out there who help others in their stone quests, bless you for being there for someone who needs you.

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March 2009

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