“I hit a wall so I am trying to stay away this am,” I texted Kate’s mom, Dorothy, on Sunday morning. “I’m going to take Norah to breakfast and then come in.”
This was the 5th morning since Kate had been admitted to 7N, 17 months after discovering the grape-sized lump in her left breast. It had only been 40 days since the 23rd of December, when we learned that the cancer metastasized to all hemispheres of her brain and just 22 since the last brain-frying waves of radiation hit her head. It had barely been two months since the scan that showed the spots on her liver. Was it really only 4 months since the first time I took her to the emergency room, the day we learned that the cancer had spread to a lymph node under her sternum? Hard to believe that it had only been 9 months since she had been “cured” of Stage III Breast Cancer.
Stage IV, Metastatic, BRCA 2, HER2 negative, Non-Estrogen Responsive Breast Cancer. I didn’t know what any of those terms actually meant when Kate was in the early stages of treatment, when each new test kept adding words to her diagnosis. I still don’t know much. I do know that this is a terrible cancer that has left Kate and those of us caring for her depleted and broken on this Sunday morning.
I have hardly been to work in two weeks at the busiest time of year (do I still have a job? I’m pretty certain I do, but I haven’t actually talked to my boss to get a read on how supportive he really is–I’m certainly testing the limits). I need a shower. I think I had one yesterday. I can take one tonight. I really need to spend some time with my kids, especially Norah.
I know that she knows that her Auntie Kate is dying because Bradley told me after she asked him point blank two nights ago. She and I haven’t had a chance to talk about it yet. I’ve hardly seen her. I did take her to the benefit for Kate the night before, a belly dance show put on by Kate’s beautiful dance sisters, just Norah and I.
I didn’t want to go. I had spent 5 days in the hospital with the woman they were celebrating and only a small handful of these people even knew how bad this cancer was or how much she had suffered, in both pain and indignities. How could I answer the question “How is she?” which I would most certainly be asked over and over again that night, without spoiling the party? I had to cry and cry and cry that morning to make sure enough of it was out so I wouldn’t leak tears all over their joy. I came up with a response I could give to the dreaded question: “She’s hanging in there.” It was true. She was.
I had rushed home the night before, Saturday night, the night of the benefit, late again, because I could not leave Kate during a pain crisis, and this had been the worst one yet. She woke from a long, peaceful sleep and wanted to move. I asked her to wait until we got some more pain meds but anybody who knows Kate knows that when it is time to go, she’s got to go. It is hard to know what exactly happened next but it included Jonas coming back from a smoke, the nurse leaving us a pill that she had ready in her pocket, bless her, bless her, bless her for that, because it takes two nurses to unlock the pain meds which always takes far too long and then, while the nurse went to get IV pain meds, Kate pleading, pleading with us to make the ouch stop while shaking and breaking out in a head to toe sweat, Jonas cursing repeatedly while trying to crush the pain pill, and me forcing Kate’s mouth open and then blocking her bite with a washcloth so that we could get the crushed pain pill under her tongue. Which we did. And then after all of that, when the nurse came back with IV meds we discovered that her IV was hardly working (meaning the pain meds weren’t making it through while she was sleeping). I HAD to stay to make sure that they called in an IV nurse, because Kate’s veins were small and she’s hard to poke and I knew that she needed the yellow needle and the best nurse to put it in. So I had to make sure that is what happened.
And that is why I was late again. I helped Norah get dressed quickly, and all dressed up she was, complete with rainbow tutu and the coin belt she got the first time she saw Auntie Kate perform, but I didn’t have time to get dressed up myself. I knew what I smelled like. I smelled the same as my baby’s head the day before when Bradley said “I think he has cradle cap again. It smells like it,” and I had to tell him that it was death he was smelling, that our baby smelled like Kate’s yeasty, dying skin because he was spending so much time in her hospital room, strapped to my body in a carrier (when he wasn’t being taken for a walk or entertained in the family room by a generous friend or coworker).
The benefit was beyond beautiful. The dancers were fantastic, the room was full, the love was palpable. The energy in that room was incredible. I had set up Skype on Kate’s laptop in the hospital room so that Kate’s dear old friend Cindy, just in from Chicago, could pipe the show in through her Ipad. The camera was off on Kate’s end, of course, so that nobody at the benefit could see her in her hospital bed, but they all heard that Kate was seeing them. She wasn’t. Her eyes were closed the whole time. But she could hear and feel. Jonas was sending me play by play text messages and told me when she squeezed his hand. Then came a picture message-there were tears on her face. She could feel it, the love coming all of the way from that hall into her hospital bed.
That was her last night. There were three things I knew Kate needed to happen before she would let go. She needed her beloved oncologist to give her permission, which I had practically forced her to do the day before. Check. She needed this benefit to happen. No way was she going to spoil a good party by dying too early. Check. And she needed to hear something like goodbye from her oldest brother. I thought it was probably too late for that.
But I couldn’t do this much longer. We had been doing this for 5 days already, after doing the whole brain radiation thing for a month, after doing the stage IV cancer thing for 4 months. I was beyond tired. My usually happy, easy-going 4 year old just woke up sobbing so pathetically for mama when she thought I was off to the hospital while she still slept again. I can’t do this much longer, I thought, None of us can. I decided then that I was taking this Sunday morning off to have breakfast with Norah and if Kate wasn’t actively dying by the time I got to the hospital this afternoon, I would literally get down on my knees beside her bed and beg my friend to let go.
I told Norah “Get dressed. I’m not going to the hospital this morning. We are going to get bagels!” She hugged me and squealed with delight. And then, almost immediately, the text message came from Jonas: “You should come soon if you can.” OH MY GOD. I was flooded with dread and anxiety and a list of all of the reasons the timing was wrong. I just told Norah I wasn’t going to leave her. The baby was sleeping and hadn’t nursed yet this morning. Bradley’s car was in the shop. We only had one car today and it was the only reasonable way to get the baby to me at the hospital when he woke and needed to nurse. My husband was still asleep.
I was in a panic. I wanted to be there so badly when she transitioned. I let go of that attachment days before, I told Kate’s friend Sarah, because I was absolutely certain that she would slip away when we weren’t looking. You know Kate, fiercely independent and all of that. And now I might miss my chance to be with her, maybe sing her a song as she left her body, because I didn’t know what to do or how to do it when the time came.
I called Bria. I didn’t know where to start or what to ask for but finally said “I need to go to the hospital!”
“I’ll be there in 10 minutes” was the reply. That was almost too easy.
“OK, but where are you? I told Norah I would take her out for gluten-free bagels. I need a gluten free treat. I need a gluten-free bagel.” When Bria told me that she was at Back to Eden Bakery, my ride and the gluten-free bagel would both be here, same ETA, I snapped back into my brain and body with a queer sense that everything was going to be OK.
OK, I told myself. We are in flow with the universe. You will make it on time. Do what you need to do. Text Sarah: Go to hospital. Get dressed, with intention, dress for the event. Pack a bag, lightly. You won’t need much today. Somehow I knew I would need a warm sweater. Even with it, I was so cold, shivering, later that morning.
When Bria arrived, I handed the bagel to the sobbing, screaming wet noodle that was my daughter and left. I realized on the ride over that even if my car was available, I should not have made that drive by myself. At the cancer center, I raced in and headed straight for the little cafe by the tower elevators. Closed on Sundays. There was a coffee shop across the street. I checked in with myself: is there time? No. I took the elevators up. Coffee can wait.
I stood outside her door to take a few deep breaths. The laminated sheet of paper that I had seen in the room binder with a psychedelic kaleidoscope image on one side and “Please check with nurse before entering” in seven languages on the other side was up on the door, psychedelic kaleidoscope side up. So that’s what that is for. I opened the door and entered but stayed behind the curtain a moment.
I heard it immediately. The way she had been breathing for days was in a clunky cycle of two or three normal breaths, skip one, then take a really big breath to catch up. I knew that would get worse until she stopped breathing altogether. This was the same cycle, but I could hear what a struggle it was for her to get each breath. Google had told me what people imminently dying of liver failure looked like. I stepped out from the curtain and saw her eyes, closed but not shut, and knew without a doubt that I was just in time.
I had been struggling for days to figure it out: what do you say to somebody whose soul is about to leave their body? What is the perfect song to sing to a person transitioning out of this world? I hadn’t been able to find the words. But when I heard those tortured breaths and saw those open/shut eyes and touched that cold foot, I was overwhelmed with the feeling of the right last thing to say to my best friend. I went to her, kissed her forehead and said “Thank you.” Thank you for being my friend, thank you for all of the times we shared, thank you for everything you taught me and were teaching me now. Thank you for not making me beg you to let go today. Thank you for dying. Thank you for letting me be here.
I looked up and took stock. Dorothy and Cindy were there. They had covered Kate’s white hospital sheet with a turquoise scarf of Kate’s. Soft belly dance music was playing. The flowers, lots of them, were all around the room. The beautiful paisley and flowered flags that Cindy sent were decorating the curtain between the door and the bed. Farrin’s golden dreamcatcher was hanging from a bouquet. “Ken talked to her,” Dorothy told me, “just half an hour ago. He talked about when they were kids and he would carry her on his shoulders.” Check. Check. And Check.
What needed to be done to prepare for what was about to happen? I remembered the ugly doll, as Norah called it, that somebody had given to my friend to give to me at the belly dance benefit to get to Kate and I pulled it out of my bag. It was wearing a red and black Chinese brocade and had a face like death and a black bird on its head and I was certain that Dorothy would hate it. “What is THAT?” she asked. I told her what I knew, which wasn’t much. “Oh, she’ll love that!” Dorothy said. I held it in my hand, wondering what to do with it. Did I need to say or do anything to activate its magic? Could I offend it somehow? I decided to lay it on or with Kate in bed, but I wasn’t sure where. Not on her heart. In her hand? No. Then I looked at Kate’s left breast that was half eaten by cancer and horribly ugly under that turquoise cover. That’s exactly where this thing goes. I put the ugly doll down on that breast with conviction.
What else to do? Spray rosewater, all over her. Where is Jonas? Out for a smoke. Where is Bonny’s amethyst heart? Kate had been holding it in her hand over the place on her abdomen that hurt all day Saturday. I thought I would put it over her heart. It wasn’t in its bag or on the table or on the shelf. Oh crap. It probably fell out of her hand. I didn’t want to go searching under the sheets for it. I lifted the edge of the sheet by Kate’s hand and literally gasped. The heart HAD fallen out of Kate’s hand, but her index finger was stretching and reaching awkwardly just far enough to still be wrapped around it. I showed Dorothy and Cindy, tucked it into her hand and covered her back up.
I wanted to change the music but didn’t want to offend anybody. Brian Eno’s Music for Airports had been so appropriate that nobody had turned it off, day or night, for three full days until the night before so that we could Skype the benefit to Kate. I had also listened to it for much of my labor with Norah. Music for arrivals and departures. I decided that it didn’t really matter and the belly dance music would do just fine when Dorothy said “Can you put on that music that goes round and round again? That was just perfect!” Done.
Deep breath. I was paused for a moment at the foot of Kate’s bed when the door opened. “I came to see if I could offer you anything,” the small, young, most Portland-looking chaplain you could imagine said. “It looks like you all have created such a sacred space here.” I nodded. “This music,” she said, “all of this…was this you?” she put her hands up towards the decorations and the flowers, the artwork and photos on the bulletin board. She asked about Kate’s spiritual beliefs. Jonas returned and Sarah arrived while Cindy and I tried to explain to this un-chaplain looking chaplain that Kate’s spirituality was without tradition or artifice but that she would not reject anything pure of heart.
Sarah put her things down and then came to me and said she would like to do something. I feltÂ like saying “OF COURSE. Yeah. Why do you think I texted you!?!” but just nodded. She took off her shoes, tucked her beads under her sweater, and invited us all around the bed. We stood for a moment, Sarah at Kate’s left, then the Chaplain, then me at Kate’s feet, then Dorothy, sobbing in the chair, and Cindy and Jonas to Kate’s right, all watching and hearing Kate’s horrible attempts at breathing.
Sarah raised her hands and called in all of the spirit guides and christed beings and activated the light and all of that and more. I didn’t know if it was the same opening she would have used for every energy session and group meditation she had had with Kate monthly over the last several years or if this was special for today. Sarah swept her hands over Kate’s body. I could see Sarah shaking and feel Kate’s energy moving. Sarah announced that she would chant seven Oms and that anybody who would like to could join her.
“Oooooooooooooooohhhhh” she and I began, but while her om was strong and low and grounded, mine was high and shaky and weak. Bring it lower, Melanie, I thought. From deep in your belly, I thought. But my next om was just as high pitched and shaky and ungrounded as the first. I could hear that Kate was still taking her terrible breaths and decided that this was just where my oms wanted to be and that I would bring them as they were. We continued to chant om, Dorothy continued to sob, and then we all heard Kate sigh deeply, but between my own sobbing, shaking and om-ing I couldn’t be sure that I hadn’t missed hearing another breath. “Last one” Sarah said. As we chanted our last om I was in disbelief of what I knew and felt was true. Kate had flown away. That sigh was the sound she made as her soul had lifted out of her body while we chanted over her.
Sarah and I put our hands to heart center and bowed our heads to our friend and I can tell you with great certainty that I have never made that gesture with as much gratitude for anyone or anything ever. Thank you. Thank you. Thank you.
Nobody spoke, though some of us moved away from the bed. A few minutes later the IV machine beeped urgently, confirming what we all knew. Cindy quickly shut it off.
When the chaplain asked if she could say a few words, I was surprised to realize that she was still there. I don’t remember even one thing she said, but it was simple and beautiful. In the hall sometime later that day, with a blue folder for me titled “Next Steps” under her arm, the chaplain thanked me again for allowing her to stay and called it the most incredible witness she had ever born.
A few minutes more and the nurse, also named Kate, came in. “I was going to do wound care, but I can come back later if now is not a good time.”
“It isn’t necessary,” I said, gesturing towards our Kate. She looked, then nodded.
When the nurse left the room a moment later, I now know that she turned that psychedelic kaleidoscope sign around. “Please check with nurse before entering” in seven languages.