Two Steps Forward, Three Steps Back

February 19, 2010 at 11:08 AM (Uncategorized) (, , , , , , , , , , )

Have you ever had that dream where you’re running, something’s chasing you and you’re running as fast as you can, but no matter how fast you move your legs you don’t go anywhere? Yeah.

Got the results of the CT yesterday. (You see where this is going, don’t you.) The Avastin is successfully holding down the pelvic tumors – they’re even smaller than they were in November. The lungs, however, don’t seem to be getting the message. Old (tiny, glacially progressing) nodules have grown a millimeter or two; new subcentimeter nodules are appearing. No lymph node increases, nothing in the abdomen or bones. But those lung guys, off by themselves, clearly on their own program, making trouble.

I’m working on my optimism, but today it feels like my balloon is a little deflated. I know all the things I’m doing to take care of myself, exercise, diet, good attitude, and all the things my medical team are doing to take care of me, scans, great medicines, oodles of treatment options, are the best in the business. Seems the glacier’s gonna carve that canyon anyway.

The Avastin will continue; I’m meeting March 1 with the head of the clinical trial department to see if there are any open studies looking for a guinea pig who’s totally healthy except for the damn cancer. Let’s hope the nasty make-your-hair-fall-out-again studies are all full.

One thing’s for sure, I’m going shopping with my usual post-tax-return IRA deposit this year.

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Post-Chemo Brain Reboot

December 5, 2009 at 5:13 PM (Energy, Recovery) (, , , , , , , , , , , , , , )

It’s really amazing how my life has changed since October 8. I guess I’ve been on chemo or some other drug for enough months out of the past four years that I got used to being dulled around the edges. Like the aerator grill in my faucet had filled up with sediment, and the water that flowed was slowed to a trickle.

I’m not sure how much of my mental slowdown can be attributed to chemo brain and how much was due to my persistent, really frustrating fatigue. Anyone on chemo will tell you that forgetfulness becomes a way of life, and that you should probably put off your appearance on Jeopardy! until your hair grows back, if you’re really serious about winning. When you’re chemo-tired, and living your day from one sleep to the next (and there were definitely days like that), the last thing you have the energy for is coming up with a good blog topic or a killer craft to rock the next birthday party. But there’s also the possibility that the ass-kicking-name-taking process took most of the mental focus that I had outside of the eternal “what’s-for-dinner?” dilemma, and I completely lost all memory of being a smart person.

Now that I’m on the miracle drug, and my hair is growing in, and my body is (mostly) back under my control, it’s as if someone has CLR-ed my faucet and the water is running again. I wake up in the middle of the night and start thinking of things I’d like to do. Projects I’d like to complete. (Not just start, but complete!) Dishes I’d like to cook. Things I could make for Christmas presents. Stuff to write about. And when I wake up in the morning, I can actually remember the things I thought of in the dark.

I’m almost overwhelmed at the different trains of thought that I can keep track of at any given time. My mental soundtrack has been one or two notes simple for so long, I’d forgotten what it felt like to hear the full melody, harmony, counterpoint and rhythm rolling along with it. And far from being confused by the din, I’m enjoying hearing all the different notes, thinking about them individually, planning how to work on them, maybe even discarding them and moving on.

I’m not promising global domination, nor that my sedentary tendencies have been banished for good, but perhaps I’m starting to fit into these grown-up shoes I’ve been wearing for three-and-a-half years now. At least I’ll be better company at cocktail parties. And Alex Trebek should be quaking in his boots.

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Easy Cancer Port Access for the Chic

December 1, 2009 at 10:16 PM (Treatment) (, , , , , , , , )

When I sat down in the phlebotomist’s chair at The Cancer Factory for my blood draw on Friday morning, I unzipped my cardigan (very cute, gift from fab sister) and leaned back. The nurse was impressed that I had thought to wear a cardi and a scoop-neck (“Have you had a port before?” he asked – an odd time to feel smug), which allowed him to access my port (feels really odd) without my having to strip down, put on a johnny, etc. He said that some patients forget, in colder weather, and show up for treatment in turtlenecks.

Which got me thinking about an article that a friend of mine wrote in October for Breast Cancer Awareness Month. She was profiling a company, Healing Threads, that was started by three sisters, all of whom were cancer patients, that makes clothing for people who are in the hospital, either for inpatient or outpatient treatments. The jackets and pants, made of stain-resistant microfiber, have easy-access panels with velcro closures that allow nurses, doctors, and physical therapists to examine or treat one area of the body while leaving the rest of the body covered.

The fashionista in me likes that, while they’re not exactly cutting-edge design, they do have an ageless Asian flair, with Mandarin collar and frog closures, that will never go out of style. The patient in me likes that someone thought about more than just accessing our ports, all the way to modesty, dignity, and staying warm. As I mentioned in the article, giving the patient a way to take control of even the tiiiiiiniest bit of their treatment, in what is essentially an uncontrollable disease process, can be immensely empowering and comforting. And, let’s admit it, we’re all control freaks to some extent. Who wouldn’t want more control, and to look cute at the same time? Flashing people is so 2008.

I wonder if they’ll ever make one in cashmere?

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November 25, 2009 at 9:14 PM (Energy, Hair, Recovery) (, , , , , , )

Sleeping in. Someone else roasting the turkey. Modern pharmaceuticals. Muscle tone. Indian summer. Indoor plumbing. Unconditional love. Friends. Good friends. Friends who sit with you during chemo. Friends who send cards. Friends who send gifts. Friends who send couture. Shiraz.

Dogs. Cats. Saturday morning pancakes. Cashmere. Down comforters. October. May. The blindness of true love. Coldplay. Homemade pizza. Having enough energy to cook really good food. Christmas. The way my kids smell. Yoga. Naps. Clothes hot from the dryer. Parking in the garage. A clean house. Date night. Toddler giggles. The Bristol Lounge. A capella boys’ choirs. The internet. Diet Coke. Jude Law.

Second chances. Third chances. Seventh chances. Tireless medical researchers. A sense of humor. A great-shaped skull. Discount retailers. Shoe shopping. Walking in the woods. Every day. Netflix. Hot showers. Maho Bay. French fries. Really good wigs. Sunbathing. A good book. Or six. Freshly painted toenails. Comfortable high heels. Hugs.

Family. Family. Family. Family. Family. Gumption. Self-confidence. A good cry. Qualified therapists. A sympathetic ear. Backup. Permission to fail. Not wanting to.



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Seventh Time’s the Charm (Fingers Crossed)

November 23, 2009 at 7:24 PM (Energy, Hair, Recovery) (, , , , , , , )

I can’t believe it. Something worked! The results of last Friday’s CT scan are in, and while anecdotal (I won’t see the report until this Friday), I’m going to take the doctor’s “Your scans look better… good news all around” as a positive thing.

So let’s take stock: no symptoms (other than a mildly puffy left leg); declining fatigue; recovering cardiovascular fitness; renewed interest in culinary pursuits; hair growing in. One might be tempted to forget one has a medical problem.

Which seems to be a habit for me. Even when I’m down in the dumps, if I can just get the dog walked and the kids fed, maybe some grocery shopping done, I really have to remind myself (or step out of the shower and look in the mirror – yowza!) that I’m sick. So now that I’m starting to feel like a fully formed human being, that reminder every three weeks (and you can’t possibly visit The Cancer Factory without knowing you have a problem) might get increasingly annoying.

Rest assured, though, that I’m going. And adding Avastin to the top of my “Thanks” list! Let’s hope the fix keeps working; I could get used to this.


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