'Tis the season... of uncertainty

"The only thing that makes life possible is permanent, intolerable uncertainty; not knowing what comes next." - Ursula Le Guin

With my dear friends Graziella, Julie, & Kristan
plus their sweet kiddos!

Just over a month ago, I hobbled through New York City's Penn Station, trying in vain to keep up with Sean as he zigzagged through the terminal toward an exit and the line of waiting cabs. Wincing with each step, I felt the imaginary needles poking through the soles of my feet - just another delightful side effect of capecitabine (Xyloda) chemo pills. It had been an easy enough train ride from DC, where we'd been for several days visiting friends and working my CAS meeting. But, the fatigue, my aching feet, and the oft-present nausea were catching up with me big time.

I'd just finished the third cycle of the chemo pills, which were proving to be viciously brutal on my body. Sitting in traffic on the way to our upper east side hotel (close to Memorial Sloan Kettering), I fought to stay awake and keep the queasiness in my stomach at bay. By the time we arrived in our very pricey hotel room, I was exhausted. Collapsing onto the bed, I slept for hours. Fortunately, my independent husband was happy to find himself a place to sample beer and have a nice meal - as well as pick up some mashed potatoes for me - because I was down for the count. Aside from the actual doctor's appointment, I snoozed through basically every hour we were in NYC.

During the few hours I was awake (but not feeling very good), we met with a team of doctors at Memorial Sloan Kettering, including an oncologist who specializes in triple negative breast cancer like mine. The facility was very nice - bright, comfortable, and quite large compared to our humble cancer center in Fort Collins. I filled out a stack of paperwork while we waited for our appointment time.

Flanked by my awesome friends (and CAS staff assistants)
Lindsey and Noah

When we were called, we met with the first doctor, who reviewed my case with us. She asked a lot of questions and seemed confused by the amount of emphasis we'd been placing on the CA-125 tumor marker numbers. She let us know she'd be consulting with Dr. Traina - the specialist we'd come to see - and that they'd be in to discuss things with us further.

Once we were settled in the exam room, Dr. Traina came to meet us. She radiated warmth, introducing herself as Tiffany and clasping my hand in both of hers. Taking a seat on the exam table across from me, she began by telling us she was excited to be able to give us good news. Based on her review of my images, records, and pathology slides, she saw no evidence of metastatic disease or recurrence of my cancer. In fact, the doctor shared that - in her view - we were placing too much weight on the CA-125. Apparently, in 2006, the National Institutes of Health (NIH) offered doctors guidance on the CA-125, saying it resulted in too many false positives to be considered reliable. Of course, Dr. Traina explained, we couldn't disregard the marker since it had been elevated when we discovered my original tumor. She indicated it was likely rising now since my body was under assault by the chemo pill, the marker is very sensitive to inflammation, and she expected the number would come down by the time we completed this chemo treatment. Dr. Traina said she thought we were pursuing the right course of treatment, taking the capecitabine and seeking possible entry into an immunotherapy trial for after this. Such a contrasting perspective than what we'd been hearing from our own oncologist! And, yet... the information wasn't drastically different.

Buoyed by the positive spin on our situation, Sean and I headed back to our hotel. I crashed for a few more hours, and we headed to LaGuardia for our return flight home. Still feeling nauseated, the cab ride seemed interminably long, and I was quite queasy by the time we made it through security. We found seats near our gate, and I tried to prepare for the four-hour flight. After a trip to the restroom, I decided to take an Imodium. The pill was barely past my lips when I felt my stomach lurch... "Nope, nope, nope," I said aloud. Sean looked at me and then quickly reached into his backpack for a barf bag (thank goodness they dole those out freely at our cancer center, and he'd had the foresight to snag one). I heaved into the bag, very aware of the fact that the people sitting adjacent to us were staring and murmuring. A kind man passed napkins to me, and Sean assured the folks around us that I was on chemo and not spreading a stomach flu. The rest of the trip was as uncomfortable as you might imagine.

I rested and tried to recover through the weekend, but it was rough. By Monday morning, when we were slated to meet with our oncologist here in Colorado, I was too weak to sit upright for very long in the waiting area. Even so, armed with the good news from our second opinion, we were optimistic about the appointment. Sadly, those positive feelings weren't long-lived. Our doctor bluntly said she wasn't sure why the New York doctors were so upbeat; she disagreed with their thoughts on the CA-125, saying "maybe I'm just a pessimist." In her defense, she also had new test results. Prior to our trip, we'd had blood drawn for a test that looked at cancer cells in my bloodstream. Those results, which we didn't have in New York, showed there are still living cancer cells in my blood. The test also pointed toward a deficiency with my gene that is supposed to suppress tumors - mine is basically broken. In her direct manner, our oncologist said she thought I might have a 2% chance of not winding up with another tumor.

TWO PERCENT. I mean, that's a type of cow's milk... not a percentage you want to hear from your cancer doc. Needless to say, we were deflated.

The only silver lining of our appointment that gloomy Monday morning was that our oncologist agreed we needed to change my dosing of the chemo pill. At Sloan Kettering, Dr. Traina recommended we switch to a one week on/one week off cycle rather than continuing as we had been, with me taking pills for two weeks before a week break. Our oncologist agreed, and we even decided to give my body an extra week without the pills before starting the new regimen.

Embracing the spirit of the holidays

The next day - just four days after our DC/NYC trip - we headed to the Chicago area for Thanksgiving. Physically, emotionally, and mentally, I was wiped. It was wonderful and rejuvenating to be surrounded by my family, although it was tough processing the uncertain and seemingly conflicting news of the past week. I dare you to explain to a 7-year-old and a 9-year-old what's happening inside your body on chemo (spoiler: Pac-Man made an appearance). In spite of the depressing nature of talking about cancer a lot, I found plenty to be thankful for. Laughing with my cousin and brothers-in-law, chatting with my sisters, hugging my parents, seeing Christmas lights with my nephews, socializing with extended family, listening to the voices of my loved ones while trying to nap - the holiday was the best it could be.

For the past several weeks, life has returned to more familiar patterns. I have continued to experience the fatigue and the hand-foot syndrome associated with these chemo pills, but other side effects have largely subsided. I feel more focused in my work, and I'm increasingly alert throughout my days. I do not miss the high grade diarrhea, occasional vomiting, and endless nausea. I actually went for a walk through our neighborhood this past week; I haven't felt able to do that in months!

I guess this is the new normal - living with the unknown, worrying on-and-off about what's to come, and wondering if I'll ever feel whole and healed. Last year, I mused about having cancer at Christmas. This year, I've really embraced the anticipation of Advent. I'm awaiting my savior's birth, remembering that miracles happen every day, readying my heart for His arrival, and trying to keep uncertainty in perspective. Before Christ's birth, people waited 400 years to hear from the Lord (He'd been silent all that time, after having spoken to folks in the old Testament). I'll do well to practice the kind of patience, vigilance, and hopefulness needed by those soon-to-be-Christians. We never know what might appear if we keep the light on.

"The people walking in darkness
    have seen a great light;
on those living in the land of deep darkness
    a light has dawned." - Isaiah 9:2