This was the post I was working on the morning that she died:
For months I stared into my phone at night looking for studies and stories and message boards, anything that might give me an idea of what to expect. She would call me with terms and updates and medications — with symptoms and counts and tumor biology. “Have you written anything for your boys” I asked her at lunch after her first dose of Methotrexate but while she could still walk, stooped and slow. “I can help you. When you’re ready I can help.”
And that’s where I failed for who is ever ready to die and leave your two small children — 7 and 9 — raucous but fragile boys who have her wide lips, brown eyes, fair hair.
I came home from the hospital the night before last and my husband asked me “did you see things you’re never going to get out of your head?” And told me when I asked about placing his hands on the head of the dying mother of his high school love as she took her last breath. He was 19. “It is never an easy death” he said to me. His father died of cancer in 2002 deep in hallucinations and speaking his mother tongue. G had left the hospital to go back to work to finalize some things in getting his father home to die — and he got the call to turn around and come back, that his father had died.
She’s fighting it. Terrified with no guide. She wakes at night and her mother tries to soothe her but its only the anti-anxiety drugs that drag her under again to the place where she sleeps with a furrowed brow and tremors. I watch her as I used to watch Z as an infant — she’s bruised and pale, the three pocks on her face from a dogbite as a child and I can’t help but look at those dancer’s feet. Her thumbnail that was always thick like animal horn from some accident she’d had — and how she always would pick up my hands and stroke them, remark on the long nail beds that meant I never needed to grow my nails long — hers short and wide.
When I saw her earlier in the week when she was still lucid — I walked into the room and she lay there — an oxygen mask hooked around her ears — she has pnuemonia and a grapefruit sized blood clot in her lung. At that point she hadn’t eaten for almost a week — she was only being administered saline and antibiotics. She saw me and her eyes widened — she made an involuntary “oh” and lifted her arms in my direction. I asked if I could climb up into bed with her — one knee up and one leg on the floor as I reached toward her “hello beautiful” I said suffused with this profound sense of love — she looked into my eyes and I into hers and with such sorrow she wiped the tears that were running down my face — and then she barked out “this sucks” and we both burst into inappropriate laughter — and I sat in the chair next to her and she held my hand as she closed her eyes again — at times squeezing it hard hard hard. Such strength. At one point when she was being wracked with breakthrough pain and her father had gone to fetch her husband she looked at me and said “make them understand. Make them see.” Your boys? I said. And then I realized, the caringbridge site — where I’ve given her voice when she couldn’t.
I promised I would. When I leaned over her — wanting to give her some rest — I promised I would come into say goodbye.
I walked into the chapel and I fell apart. Her mother came to me and I lost it and she sobbed and we sobbed in this swaying clutch — and has seemed to me since so profoundly female an experience — the mother to an only daughter — and the daughter’s best and oldest girlfriend — the loss so specific to some definition it seems to me now in womanhood — and in the clutch of grieving I thought we could be on the highlands hundreds of years ago, or at the edge of some spare and scrubby woodland — it seems to tear the very fabric of everything apart and you are just inside the elemental human grief.
When I went back in she was awake again. I was lucky that day. I looked into her eyes and she looked into mine — all there. I love you so much I told her. You have always been with me and you will be with me forever. We will see one another again. Did I hold her face or does it just seem so now? Did I clutch her hands close to my mouth and kiss them?
A miracle happened then but not the kind you might think or hope for. I woke up the next day sure I couldn’t navigate the grief. I understood for the first time the phrase “mired in grief” because that is how it felt — everything was slow — my thoughts, my body — I couldn’t imagine how I was going to get through the days mothering Z — and I wrote a few things on twitter, on my social media feeds — and little drifts of notes kept coming back to me — like the prayers tied to the bushes at the greasy grass — the notes fluttering outside temples like cherry blossoms — that was the miracle — that people I have never met prayed for me and for her — held me in my grief, thought of me wherever they were — and I have to tell you — I’ve never experienced anything like it — to feel buoyed in this world.
I made the monumental error of watching the finale of Showtime’s The Big C. (Spoiler alert) I watched that last scene where the camera pulls away and you see her in the sunlit parlor of her home, her knees tucked to the side — seemingly asleep after having done all she hoped to — reconciled with her father, witnessed milestones for her son, ushered everyone she loved on to a better place –and I was so angry because that should be everyone’s story — and it isn’t.
I had read one message board about a woman’s sister’s battle with the same cancer my friend has — triple negative breast cancer that has metastasized to her spinal fluid — something called leptomeningeal metastatses — it used to be more rare — but now that interventions are addressing so much of the systemic disease in metastatic patients doctors are seeing it more and more in late stage cancer — particularly ovarian, breast… This woman’s sister, like my friend, had bone mets all along her spine and into the sacral sac — the nerve bundles at the base of her spine — the cauda equina — she said that they didn’t get her to hospice soon enough — that she first started vomiting uncontrollably and then they couldn’t get the pain under control and she suffered for days before they could. At one point, at least as it was told to me, my friend’s care management team was split. Her palliative team said it was time for hospice but her oncology team said there was still time and strength to fight.
What it has robbed my friend of is the time, with managed pain, to come to terms with what it means to die and with the very fact that she is dying. We never really talked about that part — she would walk to the edge of it but back away again, never ready. I am a chatterbox, and over-researcher, greedy for words and numbers and things in the attempt that knowledge of it might protect me, but she never has been. She is embodied –her long, strong dancer’s legs and her powerful singing voice and her lips always painted bright red — her hair at one point short and spiky — platinum blond. She has always been a quietly tenacious fighter — and those two boys.