2019: A Lengthy Recap

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.

19 thoughts on “2019: A Lengthy Recap

  1. Dear Emily,
    It is a heavy burden you carry and my heart goes out to you as you struggle through the days. Many of the treatments you have had, I too have gone through. No easy answers. Just wanted you to know that I was happy to see your post and that there is another survivor out here who now carries part of your story. We all just need to help each other along. From a friend you have never met, take care. Elise

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  2. Thankful that you are still with us. Despite the face that I knew most of what you recapped, seeing it all in one place is overwhelming. You have been through so much. Praying for amazing moments for you, for breathing room amidst your treatment and for the fucking cancer to die a horrible death. Love to you. ❤️😘

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    1. Congratulations on fighting your way through another year, Emily, and on being the loving, caring, totally badass person, wife and mother that you are. Because you have not surrendered, but rather fight for every precious moment with Christian and Felix, you are truly a warrior worthy of the greatest of battle honors. My prayers will continue to be for you Christian, Felix, for good days, for small daily victories building on each other, and for peace realizing how many people love you and hold you in our hearts.

      Liked by 2 people

  3. We must live day to day. When we recap what has happened, it gets overwhelming. I did a decade recap on my blog (because 2010 was when I was diagnosed with mets). Whenever I list all that has happened I’m always shocked that I’m still functioning.
    Sending you many positive thoughts for the newest treatment plan and that you can spend much precious time with your family this year.

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  4. You are an eloquent and strong woman, mama, wife, friend, daughter, sister, attorney, activist and so much more….. to so many people. Including me, who lives in wonder of your brilliance, compassion and talent.

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  5. Emily dearest, the grandchild we love,
    Strong wonder woman, so blest from above.
    Gifted in prose, as she chronicles life,
    Gracious in living, friend, mother and wife.

    Now in a grand fight for daily surcease,
    Living in pain, yet retaining her peace.
    Loved by so many who read and admire,
    As she contends with a combatant dire.

    Husband and child now fulfilling her days,
    Parents who love her, as she hears our praise.
    Know how we wish her the health she would prize,
    Love the fine woman she exemplifies.

    Love Grandpa Paul and Myra

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  6. Hi Emily. Thanks for bravely sharing this update. I love your writing, did I ever tell you that? We can take Felix anytime – Elliott still talks about Felix. I love you and wish you more good days in 2020.

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  7. Holding space for you and sending love to you. May you have many moments filled with the laughter of a 4 year old, the light of the sun on your face, and the love of family and friends, near and far.

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  8. Oh, Emily. Continued prayers and virtual hugs from this caring “stranger” who has been following your story for months and thinks of you daily. ❤️

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  9. Emily, I have been following your story and I can relate to every emotion you are feeling. I am not sure what 2020 or tomorrow will bring, but I am present and living for today. Like you, I am grateful for the good days. I am praying for you and all my metsisters.

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  10. Blessings always, Emily, to you and your family. I hold you in my heart every day. (It seems your grandpa’s post reveals a family ability with powerful expression through language, yes?)

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  11. Emily, I have been following for your blog for a long time now. My heart is always with you. Your bravery and truth in your words and your life experience are beyond any words I can type here.

    Please know you have strangers who are reading your words and praying and caring for you and your entire family. You may or may not know how this blog is impacting those of us reading on so many levels. I pray for your pain to lessen. May you continue to live in the day and in each moment embracing the love that surrounds you in your home.

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  12. I love your smile and the power of your photo to bring it to anyone who dares look this reality right in the face. You’re in my meditations each day. Each grateful morning rising (or afternoon with pangs of guilt still – should sleep not visit again until sunrise) and in the daylight hours it’s my heart (free of mets) that beats hard with the hope keeping us all going going going knowing we may be gone in an instant but still here, right now to hold dear the love that makes our paths equal to a life we once thought of as ours. I hope for more hugs for you, less pain, good scans, a minimum of stable results and all the gratitude I can give you when it’s so f’ing unfair to ask us for less emotional outpouring and a more stoic view. My chemo brain deceptively squeezes out more words masking itself with eloquence when I just can’t think of the right words to say. But there’s only one that counts anyway.
    Love,
    Ilene

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