I know I’m in shock. I mean, I must be, right?
There’s a part of me that’s (WIERDLY) a bit excited. For years we’ve been planning and training for this big event and it’s finally here.
I waited two nights before telling Francois because I couldn’t find a time alone with him that wasn’t right before bed, and I didn’t want him to lose sleep on a work night.
Here we are morning after I share the news.
Francois reads in our morning Seattle Times that the new season of House of Cards is due out on May 20th.
“Maybe you’ll get to see it?!” He exclaims with genuine, empathetic excitement. There’s a softness under the excitement in his voice, an intimacy of quotidian knowing mixed tenderness leaked from 25 years of loving and sharing.
“Yeah! Maybe!” I smile back, pleased.
We’ve spent 2 ½ years grieving and coming to terms with this impending death. We’ve shared, cried and shed. We’ve spewed our fears in sobs and tears. Then we’ve picked them up, examined them, held them, worked them through. We’ve said good-bye to so much, not in pessimism, but in a search for the light of love and living that is always here, always with us each day.
We’ve already let it all go, future dreams of old age, co-grandparenting, attending our children’s major life events. We’ve found our lives here, in our daily present, precious and fulfilling.
Our daily patter has always included references to Franois’ future without me.
When our nextdoor neighbors move into a retirement community and the new family coming in installs a mother-in-law apartment for their aging parents from China, we try to imagine whether Francois will end up living with one of the kids or in his own retirement community.
I’ll tell him I’m leaving the bathroom remodel and downstairs bedroom furniture purchases to his next wife.
We talk about 12-year-old Paul’s graduation from high school and looking for colleges as Francois’ adventure. We talk about his next trip to France as something that will occur without me.
And when it gets too close to now, like when I talk about our high school junior Delphine going off to college, he’ll sometimes push back a bit and says “you might live, you know.”
And I’ll say “yeah, maybe” equivocally.
So receiving a new, rather firmly stated 3-6 months prediction from my lovely oncologist really doesn’t change much for us on that deeply intimate plane.
She informs me that stopping treatment is an option, and that although there’s not research available in breast cancer, with other cancers, patients at my stage of treatment (7 lines of stage IV treatment, 5 chemotherapies) often survive longer by stopping treatment.
Stopping treatment would probably give me less than three months If the next treatment, Doxil, works (big IF there), there’s a possibility I could get up to 5 months on it. She is extremely doubtful I’ll be here next year.
“Yeah, maybe” I think, equivocally.
I’ll try the Doxil.
The To-Do list:
So here is one thing that did change when my oncologist firmly warned that time on this earth is getting limited. I finished the parting gifts I had long ago started for my family. I started the finishing work on the photobooks I’ve been creating for the kids.
And as I go through my daily life, I notice little things that have to get done before I go.
- 6:14 AM Saturday, January 21st while preparing for the Seattle Womxn’s march.
Again? Teach the kids to plunge the toilet and clean it.
- 7:00 AM Saturday, January 21st after asking daughter if I can have my raincoat back for the Womxn’s march.
Take getting a new coat off to-do list for Delphine. Let her have this one.
- 7:45 AM Saturday, January 21st after dragging the damn dog back into the house.
Call a dog trainer and learn how to get that BARKING under control.
- 8:00 PM Saturday, January 21st after returning from the amazing Womxn’s March in downtown Seattle:
Teach all family members to bring packages of toilet paper upstairs and put them in hallway and bathroom cabinets so WE DON’T HAVE TO RUN DOWNSTAIRS AND BACK UP WHEN THE ROLL IS OUT AND THE PERSON BEFORE DIDN’T REPLACE IT.
- 9:00 AM Sunday, January 22nd — Have I listed we need to train the damn dog NOT TO BARK?!
- 5:20 PM Sunday, January 22nd – Teach spouse to do more of the cooking and how to follow up with insurance companies
Ha ha. I’m betting this list looks just like YOUR list, right?
The To-Do List, Take 2
Francois and I took a two-hour hike up at High Point today. The dog pranced and danced through the woods. We talked through scenarios.
“What if Doxil doesn’t work and we’re looking at the less than 3-month timeline?” I ask.
We count it out: February, March, April.
We both shake our heads. April doesn’t work. Delphine has her big robotics tournaments and then two weeks of AP tests in early May
“We could take one last family trip in February, during their break,” I offer.
“You want to take another trip?”
“Do you want to take a trip?”
“Where would you want to go?”
“Hawaii?” I ask.
“It would be terrible for Delphine to go in February,” he states.
And who knows if it would be any fun anyway, right? I respond. They’ll know why we’re going. We’ll be adding more stress to their lives because of missed school, clubs and tests.
We decide to just ask them. Let them think about what they think they’d like. And we’re both so grateful for having these amazing two years with their amazing trips. The “family trip” isn’t really something “left undone” if I go soon.
In fact, there’s very little “left undone.”
- I travelled with each kid and with my husband. We travelled extensively as a family.
- I’ve feel connected to and present with my family (Kaylea, Kerstin, Shirley, Pascale and Family, Jerome and Family, Monique and Rene, Tom, Travis, Jon), including my chosen family (Serena, Ramona, Janis, Medora, Breck).
- I’ve feel reconciled with many of the people I cared deeply about in this life, but didn’t, for many reasons, keep close to. I feel I’ve had the opportunity to sit again in their presence and express at least some of the gratitude I have for their influence on my life.
- I’ve shared embarrassing moments and philosophies around life purpose with my son. I’ve told him regularly how much he matters, how much I love him, and how proud I am of him.
- I’ve learned to hold back and give my daughter room to create and enjoy her own brilliance. Now that’s she’s approaching 17, she accepts, with a caring, patient smile, a small dose of my overwhelming and at times suffocating love and pride at times.
- My love, my Francois, and I have gradually erased me from our discussions of the future. We’ve collaborated on dreams and hopes for him and our children.
- Although I go to work each day, I’ve left most of the work community I was hired into. In gratitude, I watch them and their work each day. I rest apart, proud of my participation in the committees and philosophies that allowed many of these special people to be hired.
- I’ve grown ever closer to my husband.
- My house is in OK shape. It will hold them safe.
- We’ve learned live in the moment so completely that now, with a firm end in sight, we are almost unconcerned. Because right now we are happy. And this is a good day.
To-Do List, Take 3
We decided that we’re ok. If I were to suddenly die tonight, we’d be OK. And there’s a calmnesss in that, a floating feeling where the stream pushing us along is warm and shallow.
It’s in that space we begin listing things we could do, while we have time, to make the landing gentler. And we begin to think through how our close friends and family might be able to help
We are choosing these volunteers from our in-city crowd and we’ve already people in mind. There’ll be plenty of work and responsibilities associated with the memorial for the out-of-crowd town when that time comes.
- We will assign someone to finish my photobooks for the kids if they aren’t done in time.
- We will ask someone to research where we’d like to have the memorial and present us with budget options. We will need to create a “guest list” for this.
- We’ll request someone be my husband’s bureaucracy partner, to help him walk through all of the paperwork odds and ends linked to death.
- We need to learn enough about end-of-life financial planning to choose an expert who will really help, and not just sucker us for a commission. We’ll ask an expert friend of mine for help getting started here.
- We will cajole someone into scanning our love letters and pictures from before the age of digital cameras.
To-Do List, Take 4
My oncologist, Dr. Wahl, scheduled a time for Francois and I to come in and talk to her next week. I’ve been going to appointments alone (because I like it that way) and she suggested I bring Francois from now on. She wanted to ensure he had plenty of time to ask questions, so she scheduled us for Tuesday’s last appointment slot, prepared to stay late and steal from her evening time with her family to be present with us. I’m pretty sure insurance doesn’t cover an hour of “spouse counseling.”
So we’re doing our work to prepare. What do we really need to know?
- Honestly, how fast could this go? Will we have any warning? Can I do a 4 mile walk two days in a row, feel great, and then drop dead the following weekend? What will be the signs that the end is drawing close and how much warning or how predictable is the timeline from these signs?
- Will I become unable to care for myself? If so, for how long? My mother and father were unable to care for themselves at the end. They were severely limited in how much they could care for themselves for years beforehand. On the other hand, our friend with ovarian cancer was only unable to care for herself for a couple of weeks. And even then she could go to the bathroom, clean herself and feed herself. She had hallucinations, though, because the cancer in her liver is what was killing her. It’s my cancer in my liver that will kill me, as well. Will I get loopy? Will I lose some of my mind before I lose my life? How much? How fast?
- How often and in which contexts have you had patients request assisted suicide? What’s the process?
- How do we find a good hospice company? When do we contact them?
- What kinds of tasks will my nearest and dearest be asked to do? I know from my experience caring for my parents that caring for a helpless dying adult is not the same as caring for an infant. Bathing might cause pain. Turning the patient might cause pain. Not turning the patient or bathing the patient will cause sores. Feeding the patient might cause discomfort. Not giving the patient enough to drink could speed up death. Not enough morphine and the patient suffers. Too much morphine and the patient dies. Nothing gets better. It just keeps getting worse. And the weight of every small decision becomes life and death tangled with your own desperate hope for relief.
- Is it OK to ask you and the staff here who felt connected to me to come to the memorial?
We’ll keep adding to this list.
Now, I don’t want you to get all freaked out. There’s a chance the Doxil I’m on will work well enough to give me another six months.
In fact, I told Dr. Wahl that while I could feel the edge of life and death in the preceding days, the day before my appointment with her, I suddenly started feeling better.
She responded that she was happy for every good day I got.
And what I thought, but didn’t say because I thought maybe I was delusional and in shock or something… What I thought, was this:
ALL of my days are good days.
They just are. And I’m grateful for them.
It’s not simply because I can mourn my own death and let go of a lot of the anxiety around it. It’s because I really haven’t had any pain or the kind of discomfort that would make me unhappy living. Even that hard week of Xeloda had a lot of good in every day.
Today, I’m still working. I am full-time mom-ing, complete with carpools, cooking and calendar coordination. I go dancing. I host dinner parties (but I don’t cook from scratch.)
I still march in the streets for social justice and walk with my beloved spouse and puppy through the woods.
And now that we’ve changed treatments my appetite is back. My sleepiness is gone. My face has filled out. My hands and feet are less blotchy. I can walk up two flights of stairs and not get winded.
But my muscles are still shockingly weak. I can feel a hard tenderness in my liver. I need to lean on Francois to walk uphill for more than 50 meters or so.
So, you know, who knows? Live? Die? Now? 6 months? Later?
I’m happy for today, my 936th good day living with stage IV breast cancer.
I’m just not feelin’ it anymore.
I had that cancer look, hallowed cheeks and a purplish hue around my eyes. The back of my hands were stained and aged. At the end of the day my socks would feel tight and my ankles more purplish than normal.
The numbness of my feet seemed to be crawling up my shins.
I had food aversions. Nothing tasted badly or made me ill, but my body would simply refuse to eat some foods, like a revulsion. I could put some common, ordinary food in my mouth and would suddenly have to spit it out.
And even with foods my body liked, I could only eat small bites at a time.
But none of that felt like dying.
- Yes. I know that most people don’t make it through 5 different lines of chemotherapy (not to mention the additional targeted therapies we’ve tried!).
I am not delusional.
But what made the new announcement of less than six months unsurprising was more of a feeling, a metaphysical sense.
Death no longer felt like a drop off just beyond a horizon.
Instead, I felt like I was standing on a soft sandy shore toeing calm, warm waters, an overlapping edge between life and death.
Transition is a gradual comforting place.
I was neither happy nor unhappy. Just grateful for my life, my loved ones and the peace and comfort I continue to experience on this journey.
But I’m not feelin’ it anymore.
Moving from Halaven/Herceptin/Perjeta to Doxil has suddenly given my body some space to heal. My hands are suddenly soft and clear of age spots and other blotches. My eyelids are no longer darkly purple. They match my cheeks and chin, bright and rosy on some days, a bit pale and pasty on others. My socks are no longer tight. My shins aren’t numb. My toes move. My fingers type and carry coffee mugs without spills.
And I can no longer feel that shoreline underneath my metaphysical feet.
I’m gloriously hungry. It’s a hunger of healing, like after my mastectomy surgery or the birth of my children. EVERYTHING tastes good and I am eager to eat LOTS of it at a time.
I’m still on that beach.
But my body has found a space to rest a bit and heal, for a moment.
Francois and I have come back from our retreat at Harmony Hill centered, connected and emotionally open. When we arrive at the Swedish Cancer Institute in Issaquah, there’s a lot less fear. We’ve already opened the door to our shared death and the waves of knowledge that are waiting for us here will wash right through.
For me, at least.
I think for Francois there’s a lot of visualizing yet to do. What will life be like as I die? What will life be like after I’m gone? There’s a lot of sadness to accompany that visualization. Still, there’s less fear there and more intentional peering.
I know I look better and I know I’m going to rock the blood tests. So I’m in good spirits. And I’m happy having Francois there with me.
I think Dr. Wahl’s a bit happy as well. I don’t look quite so cancer patient-y. Doxil seems to be light on me for the moment.
This time she talks in the 6 month and maybe longer time frame. She even mentions, with hesitation, 6 months to a year.
I’m getting pretty jazzed.
We even talk about my maybe making it to see the eclipse this summer down in Oregon.
She’s made time for us at the end of her very long day, so I come prepared with questions. I asked her specifics about what a death from liver failure will look like. No, there’s little likelihood of varices and the massive bleeds my mother endured. Yes, there’s high likelihood I’ll lose mental function. But this will happen at the very end, when I’m bed bound and in hospice.
This bed bound state will last a week or two before I die.
I’m happy at this news. I want hospice to go quickly for my family and friends. They’ll have enough time to be present, but not so much time they’ll be tortured by their own internal emotional conflicts.
Everything we talk about is reassuring, a relief for me. And the entire discussion brings an unwelcome, unreal event right up to Francois’ sightline, over and over.
Almost nothing of what we talk about is really the realm of her oncology training. We do have a few medical questions. We want to know how she forms her prognosis and what might change it.
But most of our questions and discussion are about how to find grief counseling, programs that might help the children, and where to put the hospice bed. I tell them I want to be in the middle of everything. Dr. Wahl says this is a good choice. It helps everyone be present with death without having to choose to be present. She recommends taking the dining room table out and putting the bed there.
She is uniquely experienced and qualified to counsel us on this wide range of things, but I doubt she is compensated for that. She stays late and keeps talking to us about these little details around death for almost an hour. It’s nearly 7pm when we leave. She’s missing her evening with her family.
But I think for us, having our DOCTOR talk for an hour with us about our death makes it gently real, more real with each mention from her, more believable because she’s our doctor. By the end of the hour, we’ve kind of settled into our new reality. Instead of pushing us off into our impending mortality with quick, clean announcement, she lays us carefully into it with long, soft, attentive discussion.
Francois leaves sad, oddly disembodied. I leave happy, made light by the vision of seeing another summer.
Francois tells Delphine there’s been a change in the course of my disease. He asks her if she wants to know about it. She says not tonight.
Tomorrow is a sunny day. We’ll talk about it then.