Taking The Reins

April 22, 2011 at 11:21 AM (after chemo, Energy, Family, friends, Palliative Care) (, , , , , , , , )

First, apologies to those of you who were greatly confused by my last post. I lost a few edits in the internets (can’t even blame it on Microsoft!), including the crucial little addition of “Last…” before “…Monday” in the first paragraph. So all of what you read about happened April 11th, not the 18th. Probably the distance from the event helped me look upon it with such a healthy dose of scorn; if it had been this week, my pride might still be wounded.

“So,” you reason, and correctly, “the meeting ‘Thursday’ happened a week ago and change; tell us what happened already!”

The visit itself went very smoothly (although you can bet that SuperMom and I found a wheelchair with a fresh O2 tank right away, and didn’t mess around with using my own portable liquid). If you’re looking for more slapstick fun, you’ll have to check back later and see if I’ve made a fool of myself again. Thursday was quite calm.

I was joined rather quickly by my oncologist, Dr. A, and the Palliative Care/Pain Management specialist, we’ll call him Dr. Feelgood. I asked about other treatment options beyond the Navelbine, and Dr. A mentioned IV Topotecan, which would bring with it the standard side effects of nausea, constipation, diarrhea, and fatigue. I asked about percentage of efficacy, and she told me that there would be a “5-10% chance of any effect” at all on my existing disease, and that “any effect” would mean maybe 1-2 weeks of additional life.

Wow, I thought, doesn’t sound like the teensy weensy percentage of results outweighs the potential of feeling even worse than I do now. What else you got?

“What else is there?” I asked, in proper English.

She said I could go on weekly Taxol, although as we all know and love, the #1 side effect of Taxol is baldness, and I’m sorry, but I promised myself a year ago that I wouldn’t go out without hair. Plus, there would be only the same very slight percentage chance of there being any effectiveness at all, and that would only extend my life by a week or two, all while lying in bed feeling crappy.

So with firm conviction, I said, “Enough. I don’t want any more treatment. If something miraculous-sounding comes up in the Clinical Trials department in the next few weeks and I’m still well enough to get accepted, I’d love to hear about new options, but these choices are not good for me. I’m declining any more treatment.”

Mostly, what I was thinking was that my tolerance levels are pretty low already; if I can barely handle my kids being around me when they get wild today, how will that go when I’m feeling sick and staying in bed because of chemo? I’ll be a royal bitch, that’s how that will go. I’ll have to ask someone to keep them away from me, and that’s NOT how I’m going out.

The percentage of happy is more important to me now than the number of days. Quality over quantity.

Dr. A cried. (!) Mom cried. I cried. Dr. Feelgood laid his therapist “I hear you taking control of your life and it’s a good decision that’s right for you” vibe all over us. There was lots of hugging. Then the fabulous N.P. came in and she cried, Mom cried, and I cried all over again. More hugging. Everyone told me how strongly they supported my decision, how they thought it was the right thing to do.

But for possibly the first time ever, I didn’t feel like I needed validation on my decision (no, seriously, ask my mom). I knew I had made the right choice. I’m TIRED. Tired of feeling rotten, of being stuck in the house, of not being able to do anything for anyone but myself (and even then just barely). I’m tired of switching horses mid-stream every six weeks. If there had been ANY response worth a damn from my lung mets since they showed up in 8/09, I might be more interested in fighting a longer battle. But there hasn’t been, not one. And I’m done.

I love how willing everyone is to pitch in, but I know it’s hard on everyone (especially the intimate family who sees me all the time) to have to carry this load. I want to go out in charge of my life, with a little dignity left. Blackmailing friends into coming to visit by making them bring offerings of Starbucks Chai Latte. Being able to sit at the dinner table and make my kids laugh.

So I’ll certainly keep posting, but from here it might take a slightly different direction. And I’m happy to answer any questions you might have – ask away! But I’m already feeling better without chemo on board, so unless you have a hotline to some pretty powerful folks, I’m going to let it ride.

And I’d love to give appreciation to those of you who envisioned me as a pit bull, one who would grasp at any straw to milk every second out of my life, for my kids’ sakes. Turns out what’s best for them is to have their mom AROUND and PARTICIPATING, not hiding inside all summer and watching their birthday parties on video at the end of the day. So I’ll fight while the fighting is good. And then I’m going to have a chocolate milkshake and a really killer nap.

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