X-hausted

This past Friday marked the beginning of the second cycle of Xeloda. I freshened up my pink hair for the last time and after some Thai food, headed to the Metro to see Cocorosie start at 10:15. I was more than a little worried about how I'd be able to last since I usually go to bed at about that time, but drank a bunch of disgusting Starbucks coffee and yummy Diet Pepsi and felt good. I was able to squirm onto the balcony to get an unobstructed view, but I found myself next to four people who were not at all interested in the show, talking loud, taking a bunch of pictures of themselves and loudly exclaiming that they smell weed in the air. At one point, the woman standing next to me at the balcony was getting awkwardly humped by her male companion, and I fantasized about showering them with a spray of pink pills and pad Thai. It would be the closest homage to the cover of Noah's Ark I could get.

I was able to make it through the night okay and didn't even have one beer, but I slept the next day from noon until 4. Rick and the twins and the Kearnses celebrated Nelson's 5th birthday with us with a little bowling at Timber Lanes, Pizza Serio and some ice cream cake at our house. We all went to bed at 9:30. The next morning, we took the boys out for brunch at Orange and I was so tired, I was shaking. I felt like a car driving down the road with wheels falling off its axles. I went upstairs and I didn't get out of bed the entire day. I was so physically depleted and it made me incredibly sad.

It's one thing to take delicious naps on a Sunday afternoon. There are usually few things I would say are better in the world. It is something else altogether when I would actually rather do many other things and can't because I only have the energy to cry and sleep. I staggered a few episodes of Orange is the New Black with sleep until the late afternoon sun shone through my bedroom window. My mother (who deserves everything good the world has to offer) listened to me sob on the phone and came over to help Casey make a hearty chili and knock out some laundry. After we put the boys to bed, she helped me dye my raggedy looking pink hair back to a chocolate brown, made us some Sleepytime Tea, and after we fixed our nails, we all went to bed.

My mom got the boys up and out to school in the morning. Casey pulled his back at the gym and stayed home, working from the living room floor seated against the back massager. After 12 more hours of sleep, I finally woke up and headed downtown to see my oncologist. It was just a basic check-in, but I brought up my desire to have an oophorectomy again. I had emailed his PA about it last week and she said she saw my point. I don't want these things in me that could compromise my progress on chemo, and I probably should have them yanked because I'm more susceptible to ovarian cancer anyway. Last time, he said I couldn't because I was on Xeloda and the laparoscopic surgery would be a bad idea. Seemed odd -- I had a friggin' tube rammed into my heart and a foreign object implanted under my skin while on full-blown chemo, and that was okay? Even though the gyn-onc had the ooph scheduled, we called it off because my hem-onc said no. Today, he said there was no point to having the ovaries removed. He said that my blood test in July indicated my ovaries were shut off and I was post-menopausal. Huh? This isn't what I remember, because I had my first Zoladex shot to shut down my ovaries on July 30th. Had I been premenopausal back then, I would have started on Faslodex, but they weren't yet, so they were giving me Z first...until I realized my cancer was blowing up again. 

He said that, at this point, the surgery would be unnecessary. When I attended the FORCE Conference two years ago, I remember hearing the newest finding that BRCA carriers who have already had breast cancer and are already well into menopause have something like a 68% chance of recurrence as long as they keep their ovaries. Even post-menopausal ovaries emit low levels of estrogen, enough to nourish estrogen-receptor positive cancer back to fighting form. I remember this vividly because I thought of my mother (BRCA2, cancer survivor, has her breasts and ovaries) immediately.

"So they are emitting nothing?" I pressed. He said he would throw the ball back to my gyn-onc and if she again agreed to do it, then fine. He just thought it was unnecessary. Grrrr...

Came home, and my wonderful mom made us tomato bisque, grilled cheese and honeycrisp apple wedges so I could take my X and I fall back asleep on the couch.

Vitamin X

Hello and thanks for stopping by.  I've been pretty quiet lately, and this is because I've just started taking a new at-home chemotherapy called Xeloda: For the DIY generation!  Just kidding.  Nobody markets it that way, but it would make sense that they did. Reminds me of some ancient Mayan village you take a tour to see on your Cancun vacation because admission to Xcaret was too expensive and the excursion to Xel-Ha was too long.  You pile into your rainbow velour-upholstered coach with purple tinted windows, air-conditioner blasting a phony citrus aroma. Your driver, Jose, blasts down the coast on dirt roads at 118 mph and you feel queasy and exhausted before you even get anywhere.  As with each chemo regimen I try, there's a breaking-in period when I have to begin to learn how it affects me and how to work around the side effects. I'm in that period at the moment.

To back up a bit, after trying Zoladex (hormone therapy) for two months, I quickly figured out it was not working.  I was taking the Z to shut my ovaries off so they would not create estrogen that feeds my tumors.  In addition to the exponentially increasing arthritis I was feeling and seeing (well hello there, Heberden's nodes), thanks to being rocket-boosted into peri-menopause, I was feeling pain again where I knew there were larger tumors before.  Since pain can sometimes mean that the tumors are being crushed by the chemo, I mentioned to Casey that I was feeling them and then observed the pain for a few days.  From there, I mentioned to my physician's assistant that I was feeling pain, to which she replied, "Liver lesions aren't usually painful." Um.... yes. Yes, they are.  This was how I found them in the first place.  Maybe mine have been particularly painful because they grow so fast that they can't generate enough blood supply to keep up so they become necrotic, like a Hostess Snowball cancer cake with a creamy death center.  Maybe the tumors hurt because, like sharp little heels and knees of Rosemary's baby, they push and poke against ribs and stomach.  All I knew was that these HURT and I could feel them sticking out again when I rubbed my middle.  I knew my liver must have been heavy with cancer because, just like a pregnant woman, I could not lie on my back or on my right side. My vena cava (the major vein running down the middle of the body to the right of the spine) was getting kinked under the weight.  I would wake up feeling like I was being smothered and try to turn over.  I couldn't lie on my left side, however, because there wasn't enough room for my bulging liver between my ribs and my right hip bone.  I resorted to sleeping propped up on my back.

Scans proved what I knew to be true: the lesions that had been shrinking obediently while I was taking Avastin and Taxol for nine months had grown back.  Some had grown long and skinny this time, and some had doubled since the last scan.  Plus, many, many more had popped up, and my bone scans indicated my arthritis had ramped up like whoa.  My doctor felt trying Xeloda might be the next best step.  I think his thought was that, going back on Taxol/Avastin might render the cancer immune to that regimen.  We knew that one could work, so we should keep that one in the back pocket.  I think that was it.  There were four people in the room besides me so I am not sure exactly but I remember him saying something to that effect.  I am easily confused due to chemo brain.

So I was equipped with a sporty blue neoprene wristlet emblazoned with XELODA, the brand of capecitabine tablets I was to take, filled with a tube of Udder Cream; a little cookbook for people who want to learn to make really disgusting American fare in the name of being easy to digest, nutritious(?) and easy to make; and a book of very basic information about the drug with pictures of old people clutching youngster's hands and quotes that say, "I feel like I am back to my old me again." Or something. Recycle.

I received my bottle of pink horse pills; I am to take three in the morning and three at evening, within 30 minutes of meals.  The most common side effects of Xeloda are nausea, vomiting, diarrhea, and Hand and Foot Syndrome (hence, the Udder Cream). It has been a week and I've grappled with some pretty miserable nausea but no puking.  No dropping the D either, but I'd take that over feeling as green in the gills as I have been feeling.  Like all chemos, there's definitely fatigue.  I have been binge-sleeping.  I was given a prescription for some Compazine (prochlorperazine) and was looped out of my gourd for an entire day, so that clearly isn't going to work for me.  I went to Whole Foods and bought ginger caplets, ginger emergency chewable lozenges, and some crystallized ginger.  Apparently, ginger works better than many drugs do.  We shall see. All I have to say is that those old people standing in front of those misty watercolor paintings of a playground with their faces all happy-crinkled with relief must have been some hard partiers in their day.  How is this like being normal again?!

The good news is I do think it's working.  Pain is gone.  Some people stay on X for years and years, so my hope is that these side effects subside after some time and I, too, can look forward to holding my youngsters' hands wearing muted mauve gauze pant suits and a crinkly smile.