It’s scan day, and I’m tired. I have to wake up like normal person on scan days, so I’m short-changed on sleep for two of my last three nights. And my body knows this and is mad, but we’re making the best of things, my body and I. The team in the nuclear medicine department was very apologetic about Monday’s mishap this morning, and I got a ten dollar gas card from the We Care team at the hospital as an apology for the inconvenience. It’s all good; it’s not a real problem, after all.
Last night I played Uno with Greta, Qwirkle with Maren, and then went immediately to bed. Like I said, tired. Sometime after I fell asleep but before Brad came to bed, Maren crawled up into bed with me. She couldn’t sleep, promising that she wasn’t up thinking or worrying or stewing… her body just wouldn’t cooperate and let her rest. She lay with me: her head on my chest, her body stretched down the length of me. She’s so tall yet she still fits. We had spent much of the day together and I reflected on her in-between-ness. She’s reading Harry Potter, excited for school, nervous about camp, opinionated about how to spend her time and choices, worried about not knowing her multiplication tables well enough, and beginning her quest to define and decide her own identity. After fifteen minutes she was asleep and I nudged her back to her own bed. As I re-kissed and re-tucked her into her own cozy bed, she was full of sleepy but giant dimpled smiles and I gave a prayer of thanks that she was reset with snuggles and mama love.
Greta’s reset button is pushed more frequently. She’s so present, so intense, so full of ideas, that she burns out and needs time each day (several times a day, usually) to regroup, refresh, reset. One such reset came yesterday evening after a full day of fun. In the late afternoon she gave an adorable artistic presentation with my aunt. Greta played the role of director, producer,
narrator announcements girl, and was also the primary performer; my aunt was relegated to secondary performer and spent a fair amount of time in Greta’s small dark closet as she awaited her turn before Greta would call her out and bark commands at her. (Incidentally, my aunt is an excellent twirler.) We clapped and cheered and giggled (but not too much) as she did cart-flips, “splits that she has been practicing for ten years”, Russian farm girl dancing, twirling hoop jumps, and somer-rolls–all this in her bedroom with several close calls involving her bookshelf, the bunk bed ladder, and her co-performer. Harrowing and thrilling to watch, my G! It’s no wonder she needs a reset.
I typed all of the above before my sit-down with Dr. Wonderful. I think the title (Reset, also typed before my appointment) is appropriate now that it is post-appointment. Dr. Wonderful shook his head when he walked in the door today. “Progression,” he said. “Slight increases in size and hypermetabolic activity is indicated in several places, so we need to change treatment protocols.”
Brad and I absorbed the news side-by-side, separately and together. Brad likens our cancer journey to a windy road. Each bend in the road is scary and frought with danger, but there is a familiarity to the journey. We’re not as prone to the whiplash of it because our muscles have grown strong to accommodate the bends in the road.
The new drug is a chemotherapy drug that has been around a long time. I’ll probably start it on Monday, pending insurance approval. It is not one I’ve had before. It can be given in conjunction with Herceptin, so I will continue the targeted therapy with that. Side effects are pretty typical as chemotherapy side effects go: it’s nothing that is likely to be dramatically different from what I have experienced to date. In short, it will be exhausting, but as Brad analogy says, I’m conditioned for this.
All of us — Brad, Dr. Wonderful, and myself — are bummed and frustrated. We want regression, no cancer, No Evidence of Disease! Yet, we are grateful too; we are still here, having these conversations, plotting and planning and revising for a new strategic plan. Dr. Wonderful looked me in the eye today and said, “This is progression that is indicative that we need to make a change. This is not progression that is an imminent threat.” This is good news and an important distinction. The progression that Dr. Wonderful described today is measured in two ways: size of tumors and rate of replicating cancer cells. The size increases were measured in millimeters: no dramatic growths or new big tumors. The hot spots were only slightly hotter than before (smallish increases in the rate of cancer cell replicating)… no raging hot spots or top-of-the-chart numbers. My tumors went from nickels to quarters or dimes to pennies. Small changes. Small progression. I can live for a long time at this rate of progression.
And so, we reset.
And I know that my life is not conditional upon any drug.
And we continue to hope and pray for my miracle: to live fifty years past diagnosis.
And in the meantime,
Next week I’ll begin a new drug and a new regimen. I’ll continue my pilgrimage to the oncology office every Monday. Not much will change but my cells — healthy and cancerous — will have a new agent with which to deal. I will soldier on and prayerfully conduct my days on how best to Do Today Well. As I assess the impact of the new drug on my day-to-day life I will evaluate my goals and pursuits. More writing? More walking/jogging/running–even the Queen Bee race? Or will there be less energy for those pursuits? Less or more helpers into my home? Volunteering in the girls kindergarten and fourth grade classrooms? Travel or home? Coach the girls’ team or cheer from the sidelines?
I pray that the reset sifts me to my core: keep the good, away with the bad.