Tuesday, June 27, 2006

Nurses really matter.

The nurses matter because, after the doctor writes her orders, they are sent over to nurses who actually do everything. The nurse assigned to you for the day will be the one to find a vein, to stick a catheter into that vein, to sit and push toxic chemicals through the catheter into the vein, to check on you to be sure your arm is not swelling or reddening and your face isn't flushing. She'll talk to you and comfort you and explain all the side effects and then, later, take out the catheter and wrap up your hand so it doesn't bleed, and send you home.

The good ones get the needle stick on the first try.
The bad ones moan about your inconvenient veins and muddle around a bit under your skin...with a sharp object.

The good ones know that all the fluids, both hazardous and harmless, can hurt going in. So they set saline drips to be relatively slow, and sit with you to push ver-r-r-r-r-ry slowly, by hand, anything that is a real problem.
The bad ones have somewhere else to be, and just shove that plunger down quickly.

The good ones think about how your arm should be placed on its pillow, how the lines are draped (to stay out of our way); they place their warm hands, for heat, on your forearm when the chemicals are stinging.
The bad ones figure you can do all that yourself.

The good ones remember, week to week, that you are afraid of needles and don't like to watch that catheter being inserted. They remember that you don't want a warning, thanks--just stick it in while you look at the opposite wall. They notice when your anxiety is getting worse each time, and making your stomach upset for no other reason, and they recommend Atavan to help out, and then contact the oncology staff to get it prescribed. And then they give you a whole pill.
The bad ones don't notice any of this stuff, although they'll let you look away during the needle sticks.

The good ones stand there with nothing else to do, really, for 15 minutes to watch you and ask you questions when you get a new drug. Do you feel funny? Any changes? When you report that yes, on this new drug Taxol you are experiencing a tightening in your chest (harder to breathe) and these bizarre, spasmodic, pulsing pains in your lower back, she runs to the pharmacy and bangs on the window to get your Benadryl, and then slowly, slowly, pushes it into the saline drip (having turned off the Taxol for a while) and soothes you as the symptoms subside. She lingers more, waits to be sure you feel okay. When she restarts the Taxol (because that's what they do--no one is deterred by a little allergic reaction), she watches carefully again, asks all the questions, smiles at how groggy you're getting thanks to Atavan and a huge dose of IV Benadryl, doesn't leave until you have taken in 25cc's and it's clear you'll be OK this time.

The good ones are off shortly after 4, but say they can stay until 5 today (since your allergy problems didn't even resolve until after 4:15) so they can keep checking. They make sure to hand off smoothly to the nurse who will stay late, until almost 8pm, since your drip is 3 hours long and has to go slowly at first.

The good ones smile and laugh, tell you funny stories about movies they went to and happy stories about their upcomming weddings. They answer all questions with confidence. They have their share of complaints about the hospital's current bureaucratic admin changes, but they focus on the positive: "Change is always hard; we'll just learn it and we'll be fine." They tell stories of their own families' cancer histories, or their own; they talk about their years of experience giving chemotherapy, and why they do it, and the best ones have pet peeves that involve shirking on quality patient care, so you know you're in good hands.

Today's nurse, Lilia, who is the best nurse and whom I request, now (having learned my lesson), every time--told another story of a patient who was rude to her, who dropped her newspaper and told the doctor, as he bent to pick it up, "Don't worry--the girl will get it." She meant Lilia, who heard it and got all her ire raised. What a fool was this woman. She is still coming in to USC, and now the very best oncology nurse there--the one who can make sure you don't hurt, when let me tell you, other nurses make you hurt--doesn't like her. What a stupid and avoidable mistake.

The nurses make all the difference. Lilia stands between me and repeated pain. I feel so lucky to have found her (on my first day of chemo!) and so smart to continue requesting her. I hope she is paid extremely well, and I'm sure she's not. But she'll be able to look back on her life, and say honestly and deservedly, "I lived well, I did something important, I made a difference."

Sunday, June 18, 2006

Aloxi is my friend

It's not like I've felt as "good" as in the first two cycles, but we've managed to avoid the horror of the third cycle, and I'm sure it's thanks to Aloxi, the new anti-nausea drug. Well, that and the acu-stimulant wristband that Rick and Joanie sent me (thanks, guys!!), which got me through a couple of days when I think I'd have had the nausea otherwise.

Supposedly, I get to actually get better now--I'm done with AC, and the Taxol is not supposed to cause nausea. So I am looking forward to a positive trajectory. It's amazing how much hope that provides.

Wednesday, June 14, 2006

Finished with AC!

Well, I am halfway done with chemo.


I had my last AC treatment yesterday, and since the next drug (Taxol) is not supposed to cause nausea, it is really a positive to make this transition. Not to mention that the number of remaining treatments will become smaller than the number completed--definitely good for the psyche.

When I reported on my tough experience last time, my oncologist decided to switch my pre-chemo anti-nausea drip to a new one called Aloxie (sp??). So far, that one seems to be working pretty well. Of course, it usually takes a day or two for misery to kick in, but I'm in less need of my nausea pills this time. Crossing fingers.

But seriously...halfway done. Finished with AC. Those are happy things.

Thursday, June 08, 2006

Feeling better

Just a quick note to say that finally, a week after chemo, I feel a bit better. Was able to leave the house for short jaunts on Monday and Tuesday; today I even went to school, to pick up some stuff at the office. That has become a noteworthy event! We got some new lounge chairs, so I can sit outside on a nice day (slathered in sunscreen, of course--chemo causes sun sensitivity). And as of Monday, I can eat with some normalcy again, too.

Over the weekend, my eating was really weird. One day, I could hardly stand drinking anything. I sent Noah to the store for apples and watermelon, then juiced the apples and made watermelon agua fresca. Those, I could drink. On Sunday, I couldn't manage to eat anything, but suddenly thought I might be able to stomach some potato salad. So Noah's off to Vons again (he is making lots of trips there--good thing it's only a few blocks away) and I managed about 1/3 of a package of that. It's quite an interesting diet. I usually love tropical iced tea, and now can barely stand the smell of it (or garlic--though that flavor is fine). All kinds of weird quirks.

Anyway, I have had enough energy since Monday to resume more normal activity, and each day has been a little better. Thank goodness next week is the last AC. At least I won't have the nausea to worry about after that. Meanwhile, I am enjoying being able to use my brain and my body for the next 5 days.

Sunday, June 04, 2006

All in my head

Devil: This time around has sucked. Sucked. It's Sunday and I still feel "not right"--yesterday was so bad that I could barely move off the couch and couldn't take my daily walk. There's some nausea (for which, stupidly, I forgot to take any pills until Noah reminded me at night of that possibility--and the pill helped). There's major fatigue--on my Friday walk, I felt exhausted about 2 minutes before I got back home, and just never bounced back from that. The Neulasta causes bone aches, and sitting on the couch--about all I can do--leads to aches and discomfort. Overall, it's just very not right.

Angel: But really, it's still not as bad as one might expect. I'm not throwing up. I'm not literally unable to get out of bed. As bad as I ever feel, I keep thinking I'm just overblowing it (I've always been a wimp about even the most minor illness). It's probably a whole lot worse for other people.

Devil: It's boring, frustrating, even depressing to have to sit around and not be able to do anything. Noah tries to cheer me up, encourage me to get out and do things...I pushed myself hard to walk two days, but then just couldn't do it. I don't want to talk, so there's not much he can do for me. My eyes hurt, so reading is tough and even TV gets difficult. It's hard to find a sitting position that keeps my stomach calm. I want to think, to write, to work, to read, to move, to be active--to do anything.

Angel: Once Noah realized that I couldn't go out for diversion, he really stepped up to bring diversion to me. He's made lots of little trips to the store, has played Battleship with me (no eye strain, no energy needed), tells me stories when I want them and is quiet when I want that.

Devil: Just thinking of chemo now makes me feel physically ill. If I picture the IV, or the day hospital, or any aspect of it (including writing this), my stomach lurches and I feel horrible. It's starting to make the thought of going become dreadful--literally. This is a more difficult challenge to my self-discipline than I've maybe ever faced. It's not that the experience itself is so bad, but the thought of it is becoming terrible. It really is so much in my head.

Angel: The chemo is giving me a 23% better chance (in absolute terms) of avoiding any recurrence of the cancer for 10 years. If it's working, it's killing off any dangerous little cells that are still left. If I can focus on my breathing, I can keep from plunging into the darker thoughts of chemo, and keep those ill feelings at bay.

Devil: At the start of chemo, I felt great. Perfectly healthy. The tumor had been removed, my mobility was pretty much back, and I felt really normal. Now I feel like a Sick Person. I'm sedentary and limited and yucky-feeling, and (since I haven't really announced this yet) I have basically no hair. I have days of feeling better and almost normal, but even on my best days now I get more tired, sleep a lot more, feel I can do less. Before starting chemo, I read a piece by a woman just finishing hers, and she said she gazed in the mirror with an old picture in her hand--herself with hair, smiling and healthy--and wondered who she was. That seemed so remote--even in my darkest days, I thought, I'll remember who I am. But who I am today is such a shell.

Angel: And yet I do remember this always: I am not really sick. I'm being given drugs that make me feel lousy, but these are just drug side effects. And the drugs are prophylactic: they are not treating a current illness (the tumor is gone!) but are the sacrifice I am making for four months in hopes that I have years and years and years in which I don't have to worry about this anymore. If someone could tell me for sure, in three years you would be dealing with a recurrence, but if you choose to go through this now, it won't happen--then absolutely, I would choose this. And I have chosen this, even without the certain forecast. It is really hard. But I chose it for a reason. So I'll stick with it, and I'll make it through.

Thursday, June 01, 2006

It's been a while

Hello folks.

I'm pleased to say that one reason for my silence this past week was that I got to have some fun. Noah and I went up to Oakland for his brother Sam's "wedding" (we're not supposed to say that, but it's still the best descriptor). We flew up on Thursday and stayed until Tuesday. We made it to a couple of favorite SF restaurants (and a couple of others in the East Bay), and though almost all of our time was spent in family events, we got to see a bit of our old stomping grounds. The visit was fun anyway, and I enjoyed seeing the whole large, loud, loose, loving Markewich clan.

We flew back on Tuesday just in time for chemo. I did not want to go. In fact, I was writing a blog entry in my head the night before, and it went like this:

No, no, no, no. Don't make me go. I don't want to, I don't want to.
This just better f***king be working.

Nice, huh? But quite true to my state of mind. The physical side effects, as it turns out, are not so bad for me--but mentally it is really rough. Just knowing that there are these toxic fluids being put into me, and that I'll feel even a little bad, is difficult. At this point in the cycle, I feel rotten just because of the thought of chemo, even more than from the chemo itself.

At least I have only one more AC treatment (that is the one that causes nausea) and then I'm on to Taxol, which has its own problems--but they do not include nausea, and somehow that seems worse than the others to me. I don't like feeling nauseated, and I associate nausea with mental stress, so it's even worse. And after the next treatment I'll be halfway done, so that's a positive too.

Meanwhile, I actually feel a little better this time than last. I have been more vigilant about taking the anti-nausea drugs, which seems to be helping, and I have a little more energy. Usually Thursdays after chemo mean I lie on the couch all day, but today I made some food and went on a walk--both real accomplishments!--and even got some work done, which was also nice.

But having done all that--I'm a little tired now. It's a lovely afternoon here, on a day that's been in the mid-70s, and Noah's about to go to volleyball. I think I'll relax and stop typing. More later.