I don’t have anything particularly wise or insightful to reflect on 2019. It was a year of waves irrepressibly pummeling our family – bad news following bad news. A year of absence, being torn from my life over and over, captive to the ever-changing treatments and side effects, each one worse than the last. And yet, it was a year of love, a year of generosity, a year of wagons circling tightly to lift our family up. A year of separation – the recognition of those who, in times of crisis, will gather us close, rather than pull away. It was a year of loss, of tears, and of the creative manifestation that arose from those losses. It was the year in which I have had to look mortality in the eyes and, watching myself fail to meet that gaze, I realized how much more I have to do, how much more I have in this life, regardless of time. This has been the year that I see the grains of the hourglass less as physical movement and more as representative of potential – each speck offering me, offering us, a tiny space to exist in a way that carries with it fundamental change. This is the year my darling boy turned four, and, in a heartbeat, transformed from bumbling toddler to lanky child, full of thoughts and questions and observations. I have never loved him more, and never enjoyed his presence more than I do now. It was a beautiful hard year.
Mary Oliver wrote, which I find so fitting for this year:
“You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting –
over and over announcing your place
in the family of things.”
Although it’s been an intense year for me, medically. Out of curiosity, I looked back at all of my medical events for the year, and was a little bit horrified. In 2018, I was stable on my first line of treatment, Ibrance, for the entire year. I struggled with the anxiety of a new diagnosis, of the unknown, but generally, I remained functionally able to live my life. It was an unrecognizable gift amidst my grief and fear, but looking back, I appreciate that year more than ever.
In January of 2019, I started a clinical trial. This trial came with a bone scan, CT scan, and two bone biopsies. In March, after reporting some unusual headaches, I had a brain MRI, which revealed two small tumors. For this, I underwent stereotactic radiosurgery – very targeted beams of radiation to eradicate or shrink the tumors. Prior to this, in preparation, I had a CT scan and radiation simulation, an extensively detailed brain MRI, and was fitted with a plastic mask for radiation. Following the brain radiation, I underwent another bone scan and abdominal/pelvis CT scan as protocol for the clinical trial. Unfortunately, those scans showed progression of my disease into my liver, and I was no longer eligible for the clinical trial.
In May, I underwent a liver biopsy to better understand the genomic makeup of the new lesions, and subsequently started an oral chemotherapy called Xeloda. Further, I developed a some unusual puckering and discoloration on my right breast, but after an ultrasound and mammogram (I thought I was done with those!) the diagnosis remained inconclusive. Several months later, though, it resolved itself (which I think the rest of the tumors could take a hint and do the same). I had my brain follow-up MRI in June and it showed stability in both lesions, which was a relief. Unfortunately, my PET scan in July showed increased liver disease, which meant another treatment change.
And this was the point in which we brought out the big guns: IV chemo. I started Taxol almost immediately after my scan, and shortly after, had a pedi-port placed because the drug was so hard on my veins. Taxol was undeniably rough: I generally only had two functional days before the infusion flattened me again. Worse for me, I lost all of my hair. I struggled with severe GI symptoms and took a trip to urgent care for back pain (a metastatic flare-up), a trip to the hospital for chest pain (a bone met pain flare), and another hospital trip for a UTI. And then after all that, my October PET scan still showed progression. Awesome.
That’s when things when from bad to much, much worse. After the news of my progression, my oncologist wanted to get me into one of three promising clinical trials. We held off on treatment for two weeks in order to satisfy the clinics trial wash-out periods (most clinical trials require that you have not received treatment for a number of weeks before you can be accepted into the trial). Within that period, I had my 6-month brain MRI to follow up the radiation from earlier in the year. In that MRI, it was discovered that I had developed leptomeningeal metastases in my brain. I was immediately disqualified from all clinical trials, and my oncologist started me on a regimen of Adriamycin (known as the “red devil” – both for its color and its potency) for two weeks while I waited to start proton radiation on my entire brain and spine, as my doctors were concerned with a lengthy stretch of time without any sort of treatment. During those two weeks, I had a spinal tap, a spine MRI and underwent radiation simulation, including a fitting with a full-face mask, in preparation for the proton treatment.
In the beginning of November, I travelled to New Jersey for two weeks to complete proton radiation. Fortunately, my husband was able to stay with me for the first week, but in yet another way that cancer is a devious thief, my treatment overlapped with my son’s 4th birthday. We were able to drive back for cake that evening, but had to return the next morning to continue treatment. After the first week, I came home for the weekend, and then returned to the proton center the following week by myself. As my radiation oncologist predicted, the second week bore significant fatigue, and I spent the majority of my time at the hotel sleeping and trying to find things I could eat to counteractive radiation reflux. All in all, I completed 10 seasons of radiation. Two weeks after I completed the course, I restarted the Adriamycin.
A month after I completed radiation, I had spine and brain MRIs, which should measurable decrease in the leptomeningeal disease in my cerebral spinal fluid. This good news was cautioned with the information that lepto can shift and change very quickly. Because I seemingly can’t catch a break, I began to have intense pain in my right side, ending up back in the emergency room. After several more scans, the doctor determined that my liver was inflamed, likely further progression. A discussion with my oncologist and a PET scan confirmed that yes, there was significant progression in my liver, and I switched chemo regimens yet again – this time to Carboplatin and Gemcitabine. I received my first infusion the week before Christmas. During this time, I was also dealing with intense nausea and frequent vomiting. Recently, there were days were I couldn’t keep down any food. I had also contacted a bad cold with a painful, hacking cough, which further triggered the reflux, nausea, and vomiting. This landed me back in urgent care on Christmas Eve for fluids and meds. This week, my platelet counts were too low to get chemo.
Right now, it’s nearly 11 pm on December 31st. My social media is full of recaps, regaling the joys of the past year, the past ten years. Meanwhile, I had a sobering conversation with my oncologist yesterday. I exist in a land of unknowns – unknown diagnosis, unknown prognosis, unknown months or years to come. For the last few weeks, I have woken up weak and nauseous, fearful that things will not get better from this awful place. I’ve spent my days coughing, puking, and sleeping, too weak and too depressed to do much else. Fear is a terrible emotion to dominate one’s quality of life, but yet, that dictated many of my days, lying in bed, sobbing myself to sleep because I felt so awful and didn’t know when, or if, the terrible weakness of my body would go away.
This may sound dramatic. It certainly felt dramatic, insofar as a daily routine so unpleasant and such a departure from the norm is somewhat dramatic. I’m happy to say that today was a good day. I rested, ate dinner with my family, played with my son, snuggled him to sleep, and, more than anything, I felt alive for the first time in weeks. I can’t live in the future – in tomorrow, in six months to a year, in the sand granules of 2020. And so, as we flip the hourglass into a new decade, I continue to remind myself that nothing comes from an existence in the future. I am here, now, present, and while I struggle, while things are difficult, even when things are unimaginably frightening and sad, they do not exist in this moment – but I do.