The Long Goodbye

In which we face death with a firm handshake and a steely gaze.

BVH in her glory.

It was a stupid Monday morning in January of 2023 when I flipped over my phone to see who was calling so early. Lord knows why I answered, I never answer.

It was a guy saying he was my mom’s doctor. That they had been trying to get a hold of her and couldn’t. They had some information from some tests she’d done the day before and needed her to come back. Immediately.

I didn’t know my mom’s doctor because she never needed a doctor. On that day, Brigitte von Haken was an 82 year old German who rarely let anyone shovel her driveway and could routinely be found at the top of a ladder doing battle with squirrel nests when one of us would show up to visit. The day before this call, she was raking snow off her roof.

They said she had a very low hemoglobin count, that she needed to come back in. That was the very last day of my life that I would not intricately know what a hemoglobin count could mean to you.

I called. I got no answer either. I began driving to her. As an optimist, of course I thought that she had just slept hard after the roof raking and left the phone in the other room. When I got to her house, it was dark and quiet, she was clearly not up. The key I normally used was no good, because she’d used what we called The Murder Stick to wedge against the doors. While I considered calling my son Matt to come break into her basement window, I decided to just furiously bang on the front door in hopes, hopes of waking her up. It worked.

She was clearly deeply asleep and disheveled, confused why I would be so impolite and impertinent to do such a thing, when I told her: get dressed we have to go the hospital right now, something about your bloodwork from yesterday, a hemoglobin issue.

“What does that mean?” she said.

“I’m not sure,” I said. I already didn’t like that I was in charge. That’s not how this is supposed to go. She knows everything and I access it when I need it. Not this.

Friends, she did her makeup. She put on her infamous gold hoops and fluffed her hair. Tossed on a cashmere sweater and we were off.

We spent the first few hours in a cold room where they told us little and poked and prodded a lot. They kept taking blood samples, wanting to check and re-check, I ate shitty Ritz cracker sandwiches with fake cheese or fake peanut butter, who could care.

We dealt the way we dealt, laughed and made comments about hospital fashion and hiding you underwear in your purse. Still had no idea what was going on when they came in to report: her hemoglobin count was a 4. Just like the reading from the day before. Normal is 12-15.

They were confused by how awake and sprightly she had been, normally a 4 would make you almost comatose. She had been roof raking at a 4. She’d almost gone for a snowy walk around the lake at a 4, but had felt a little “off”. This is the Very German state of mind that leads you to just seek answers before feeling anything like fear: so what is causing that, is it a reaction to blood pressure medication? Maybe COVID? They said, we’re still looking into some things, but we do know you’ll need a transfusion.

At some point, someone said leukemia.

Her response: “Cancer? No, I already did that. I’m not having that.”

I’d almost forgotten that she’d had a stage 2 bout with breast cancer years and years earlier, but beat it handily with just radiation. She was not into pink ribbons, she just moved on.

She ended up with a couple bags of blood, and felt better, but had to stay the night for observation. Someone would come in the morning and talk more about the diagnosis and what they’d found out from the tests.

They said it looked like Chronic Lymphocytic Leukemia, CLL. That gave us a jolt of hope: it wasn’t great, but it was something you could live with for maybe 5 years with treatment. “Well that’s ok, I was only really planning on living until 88 anyway.”

With fresh blood in her veins, we took to the week full of more tests and biopsies with typical vigor. Somehow in the midst of it all, it was my birthday.

But, by the beginning of February, we had learned that her diagnoses was actually Acute Myeloidal Leukemia, AML. Essentially there were evil teenage blood cells that would not die, and they were crowding out the good blood cells. And while there was still an option of treatment, she was looking at a pretty short road. Six months without treatment.

When someone says six months to you, it’s not real. It’s a movie line, a set up for a doctor joke. There’s no possible way the person in front of you could vanish before the cicadas start calling. How could she just not exist in tomato season? I found that my eternal fucking optimism just went into denial hyperdrive: Let’s just find out what KIND of treatment we need and we’ll just do it OK?!

Swear to god, she humored me. Even after they said treatment would certainly put her in the hospital for 3 months, and if it worked, if, she might live another 18-24 months. If the treatment didn’t kill her outright.

Somewhere in the midst of it all, it was then her birthday. We had a bonfire on the deck so that she wouldn’t have to be inside with germy people, and we all laughed and carried on as if it wasn’t going to be her last birthday. My kids, her grandkids asked lightly about treatment, she sing-songed “we’ll see, we’ll see.”

But then, when I walked her out to her car and it was just us she said, “Stephanie, I don’t want you to be disappointed at our doctors meeting tomorrow. I want you to be prepared to know what you already know. We believe in quality of life, not quantity of life. We always have. It’s why we let the cats live outside. I have lived a good, long life, and if it’s time to go, I’m ok to go.”

And with that, we began The Long Goodbye.

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Her intention was to teach us all that death was a natural part of life, that we shouldn’t be afraid of it. There is sadness in loss, but sorrow is just the beginning of gratitude.

A former CFO, my mom used her time in between transfusions to get all her ducks in their proper rows. We told all our people that she was getting ready to leave, and she was busier with more visitors than she liked (to be honest.) This was a woman who loved living alone in her house, with her books, her birds, her classical music cranked to 11 with no one to comment.

When her hemoglobin would dip below an 8, she’d get blood transfusions which would give her a burst of energy and vitality. She came to call herself Vampira and the nurses always commented on the books she’d bring to the blood center, she gave them lists before she left. I wasn’t to sit there and moon over her during transfusions, she would make me leave, she knew I had work to be done in those scattered days (though one time I sat in the parking lot and just sobbed for four hours, so.) I dialed back my tv and other appearances so that I could wing out to her patio for an afternoon hang if the mood moved either of us.

This was palliative care. She could get transfusions and decide whether or not to fight off any symptoms with medications, but she wasn’t actively fighting the cancer. She’d had a Do Not Resuscitate (DNR) order, and as her health officer, I had it printed on business cards so that she could hand them out to nurses, and whomever.

She had my son Matt come out and install a new light over the front door. She decided she needed to buy a new washing machine, and when the Home Depot guy began to giver her the run around about when it might be delivered, she said “I have cancer, let’s hustle that up.” This was all because she thought she might have to have a nurse in her home, who would need to come in the front door and do some laundry when she died. She was death nesting.

We made it through April pretty normally. Giant Baby came home from college to hang out with her for a few days, we did my taxes, lined up bank transfers, and then she got an infection.

It was the eye opener. I had been lulled into the fuzzy habit of preparing for her death, and I’d glossed over the totality of the endgame. Six months is both too long and too short. After a full night of being poked and prodded and transfused in a hospital with other patients wailing in the rooms across the hall, she’d had enough. This was not meeting death with a handshake and a steely gaze as she had planned. One of the docs she talked to said: You can keep getting these blood bags as long as you want, and you’ll have to worry about germs and decide if you want to come back here again and again … or … you can let go.

She started hospice the next week.

May was filled with drugs, god love ‘em. With her incredible hospice team came all the meds that she needed to calm the increasing pain in her head. Or her limbs. She kept meticulous records of her dosages, going back and forth between Advil and Tylenol, flirting with the big stuff. Hospice means that you are in the window, and your care team helps sashay you to the big dance.

We joked about the stash of drugs in her fridge, next to all the food that my friends were cooking for her and she wasn’t eating. She’d say someone might think she was a skinny strung out addict if they were in her fridge. I pointed out that addicts don’t buy a whole hunk of Roquefort just to take a little bit on their pasta.

When she made the decision to not seek treatment, she’d asked the palliative care doc about what she could expect with dying. She was really hoping to go without pain, her perfect ending would be to fall asleep one night and just not wake up. This was a woman who researched everything. She once dug so far into the mysterious Masons Guild after reading a reference in a book, that she could have made a documentary. Her books are underlined, there are printouts of historical facts she chased down folded in their pages. She loved knowledge, it was her passion.

The only thing that scared her was the loss of her mind, her ability to communicate. And a loss of dignity. That she would not brook. I had a very stern directive that the family was not to be perched at her bedside, “like some god-awful Victorian thing.” If it got ugly in the end, I was supposed to hire a night nurse. I was told that I was not allowed to uproot my life and move into her house for those last bits. I agreed, but had contingencies.

We spent the early part of June on her patio mostly, playing with her great grandkids, listening to the wind, and chatting about her past. I recorded many, many stories that I have still to re-listen to. I can’t quite listen to her voice yet.

She was getting more tired, and her head was aching so that she couldn’t sleep. We worked with her team to dial up the drugs, added in some morphine, touched base with a bit of methadone. She couldn’t sleep from the head pain and it was almost too much to bear. One afternoon I showed up at the house and we sat at her kitchen table going over her meds and the information the team had given for how to combat the pain.

This woman who had been my absolute rock in life, who had surmounted war and hunger, a shitty husband and poverty, to build herself into the laughing, brilliant, juicy human who was, ultimately, my source code, she wept from the pain in her head and I held her ever-shrinking frame in my arms helplessly. As masters of our universe, we had been bested. As everyone is.

We both had a good cry. Then we did as we do, and gathered ourselves to look for some knowledge, called her care team, reconfigured the meds. By the time I left that afternoon, we were laughing about the fact that I had begun dating someone in the middle of my mother’s long goodbye, and how that should not set a tone for future relationships. I also made sure to tell her, with the actual words this time: You are my best friend, and I will be wrecked when you go, but you have built me to survive. So I will.

The week she left, she invited a few of my friends over for a visit, to thank them for making her so much food that they may, or may not have known that she barely ate. She told stories, we all laughed, and when I was in the kitchen cutting cake she gave them secret assignments. Told them things they had to remind me of when she was gone.

We didn’t know it was THE last week, we all thought we had a few more last weeks to go. But there were contingencies. As I should have known.

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Tomorrow I will finish this story. It will include the way she left us, which I have come to understand is an important story to tell, though difficult for some to read (so I understand if you don’t.) People who have gone through this come to me and ask how it went for us, and we exchange our stories. I think we are looking for something in each other’s tales, a hint that we did it all correctly or some clue that might highlight something we missed. She wanted me to tell this story when I could, to maybe help others, to give light to darkness, to honor her very favorite thing in the world: knowledge.

This is my last task to fulfill the promises I made.