Dear friends, thank you all for slogging through my emotional posts. The loving and thoughtful responses you’ve sent, the comments and phone calls and private messages and texts, the songs and Scripture verses, the tears you’ve cried with me–it means more than I can express.

We just got news today–literally ten minutes ago–and I owe it to you all to keep you in the loop. Let me back up and put it in context, but–spoiler alert–it is hopeful. So, so much more hopeful than I thought it would be.

Backing up for a second, many of you know that Heidi’s MDS blood cancer can only be cured with a bone marrow transplant. However, the initial chemo in January/February of this year didn’t knock down her blast cells (the cells in the bone marrow that need to get wiped out prior to transplant). So she was given a newer (and less tested) chemo that took a tremendous toll on her, reducing her heart function and knocking out her kidneys.

Since the kidneys stopped working (I think that was in March), it’s been all about the kidneys. First, everyone expected them to bounce back. When they didn’t, after many tests and much waiting, the cause was identified as Thrombotic Microangiopathy, another rare disease. I won’t go into the painful details of this part of the 6-month slog, during which Heidi almost died of sepsis, experienced flooding in her lungs more times than I can count, had a month-long hospital stay (among other shorter ones), had gall bladder surgery, a blood clot, and waded as she does now through daily severe nausea and headaches (not to mention she can’t shower, eat salt, is on a restricted diet, and can’t flex her leg at the hip because of her dialysis line). Add to this depression and PTSD from the intense and frequently unpredictable pain that Heidi endures, and she was talking of dying as her only way out.

But misery aside, throughout all of this, the medical question was: will her kidneys get better?

Last Friday–just a few days ago–I went to Madison because that was the day we got the results of her kidney biopsy: were the kidneys dead, or did they still stand a chance at recovering? If it’s not good news, Heidi said, I’m just going to die. I’m done.

The call came at the very end of the day. The message was clear: the kidneys were caput. Done. Never coming back.

That day felt like a death sentence.

Friday night, Heidi and I went to a fancy restaurant, drank cocktails and ate low-sodium/no-sodium food, and talked about her funeral. How she wants to go. What she wants me to do. How she wants me to be there for her kids.

Then, as you all know, Saturday Heidi ended up in the ER with the worst pain of this whole 9-month nightmare. Sunday morning she was talking like she was going to get a referral to palliative care and check herself into hospice as soon as possible. We talked more about her funeral, listened to loud 80s music, laughed and twerked (or tried to), shook from anxiety and cried, and joked about how Erica would sing a rendition of our top hit song “Hell Hell Shit Damn” at the service (martini held aloft).

On the bus back to Chicago, all I could think was–Heidi could be dead within two weeks. I haven’t stopped crying since. I want to support her. I recognize there’s a limit to how much we can take. I have no judgment for her–only love. And yet a world without Heidi is horrible to me.

And now for the good part.

Today, Mike and Heidi met with Dr. Hall, her primary cancer doc who’s in charge of the big picture stuff and the ultimate plan. And instead of simply referring Heidi to palliative care, Dr. Hall said that there have now been eight successful simultaneous kidney/bone marrow transplants. He thinks Heidi has a chance with this procedure.

This is a huge surprise. Erica and I were expecting a “well, we tried.” We were both ready to cancel all plans relating to our regular life and go be with Heidi for her final days.

Instead, the story might not be over.

It all hinges on her bone marrow biopsy. The biopsy is this Friday (and horribly painful). Results will come in a week, on Friday October 11th. If the biopsy finds that the cancer (blast cells) has come raging back, it will be game over and time to plan for hospice care (short of a miracle). But if the blast cells are under a certain level, the plan could be moving forward with a double bone marrow/kidney transplant, with Erica as the donor.

It would still be risky. Erica is only a half match. But there could be a chance. And I am clinging to that. God, come through. God, remember those signs? Follow through. Do what you said. Don’t let us fall. All eyes are on you–even mine, which are so tired from weeping and hungry for light and joy to shine on us again.

 

It could be part of a children’s book series.

Little Bunny takes the train

Little Bunny goes to the park

Except my series will be called Broken.

Broken in my yard

Broken at my job

Broken in my car

Broken on a bus

I’m writing this Sunday September 29th, on my way back to Chicago, on the Van Galder bus from Madison where I’ve spent the weekend with Heidi. At first I thought I’d sleep. Or read. Definitely not think about everything that’s just happened. I’d have to tell the story soon enough—to my husband, to my sister Erica—why torture myself now.

Except then I started to let it all play.

The horrible pain that struck Heidi out of nowhere Saturday night, minutes after we were laughing at the table. It was the worse pain Heidi’s felt so far, which is saying a lot. How she writhed and cried into her pillow. She was being stabbed in the head with a knife and she couldn’t get away. It went on for hours–at home, then in the ER.

The moment the next morning when we sat in the living room in the gray rainy light, me with my coffee and the Bible shoved aside, and Heidi said, all I want for my birthday is to die.

She said, In books and movies people hang onto life for their loved ones. But it’s not enough for me anymore. I can’t do it for my kids. I can’t do it for my husband, or for you and Erica. All I want is to die.

She said, I just want to escape. I just want the pain to end. Because it will never be the same, even if I survive. I will always be afraid of it coming back.

Heidi looked at me, her eyes puffy, her body shaking. She said, I broke.

Broken in the ER.

Broken in the hospital.

Broken on a couch.

Broken in bed.

Broken as she brushes her teeth and drinks her coffee.

I just had a panic attack on the bus. It was very undignified. It didn’t start that way, though. I was thinking my sad thoughts to myself. Replaying the moment I looked at Heidi’s curtains and couch and thought, one day soon she’ll be gone and how will I ever look at these things she chose for her house because they were pretty? The couch nearly broke my heart. She was so excited about it, happy to get a good deal. It’s a great couch.

As the bus hurried down the rainy interstate, I looked out the window, letting all my thoughts and feelings from the weekend flip through my head. I was staying calm. I didn’t need to take a Xanax. I am calm. I am Zen. I am fine.

Then, at the Janesville stop, a pert young blond college student in leggings and a sweatshirt pointed at my stuff, which I had plunked down into the seat next to me to protect my space. The bus was mostly single riders at this point. But of all the seats she could have requested, she asked for mine.

“I’m not feeling very well,” I warned her, hoping that she’d imagine flu contagion and pick another seat. “Just to warn you.”

But that did not deter this young woman, who promptly sat down and got busy on Instagram with her phone.

The minute she was there in the seat, occupying the space I wanted to grieve in privately, stealing the remaining hour and a half of the ride to Chicago and making me—again—a public display—someone who needs to keep it together because this is polite society—I cracked. It started with tears streaming down my face, faster and faster. Then, the occasional gulping breath. Then, the silent spasms rocking my body as grief’s fist tightened around my heart, my lungs, my ribs.

Heidi wants to die.

She wants to die now. Starting this week. This October. It’s what she wants. And I will have to watch. And then go on. And on. And on. Year after wrenching year. It’s not my choice. But I will hurt forever.

I will hurt when I look at her kids. I will hurt when Erica and I are together. I will hurt, and hurt, and hurt.

The sobs became stronger. Soon everyone in a two-seat radius had to know I was crying. Then I started to hyperventilate. I grasped the ledge of the window and pressed my forehead against the cold glass.

“Is there anything I can do?” said the blond person in a tentative voice.

I shook my head. I couldn’t even speak. My sister is dying. My sister is dying. My sister is giving up. My sister wants to go. The story is nearly over. Except it’s not—it won’t be—not for me. It keeps going past The End for an unbearable amount of pages.

Finally I thought I would lose my mind, because breaking right next to someone who is busily tapping away on their laptop, it turns out, is unbearable.

I said, “Could you please give me some space?” My blond seatmate moved. I buried my head on the now-free seat next to me, not caring how I looked, and sobbed. And hyperventilated, and clutched my hair. I broke. On the bus. Surrounded by people. And besides my seatmate’s initial contact, no one said a thing. No one looked at me afterwards. There was no eye contact.

Hello, I am a Rare Unicorn of Grief.

It’s better not to touch me because I am a magical creature. Except that instead of rainbows, I am darkness. Instead of glitter, I am tears. Instead of fairytales, I am a nightmare. This is a nightmare. This is me in my nightmare, falling apart on a bus like a crazy person.

So—what am I saying? Of course you don’t want to touch me.

You wish I wasn’t here. It’s uncomfortable to you. Also I might be crazy. Unbalanced. You never know. Better to pretend she’s not there. How awkward. Maybe I’ll be an interesting story you’ll tell someone when you get off the bus. Oh my God, there was this lady who totally lost it on the bus, it was freaky. In fact, you’re an interesting story I’m telling on my blog. So go for it. Let’s be each other’s stories. But please, no actual contact between us. It’s all too strange.

Grief squeezed me like a tube of toothpaste. Everyone looked away from the mess. Not my business.

My strange private public grief.

Mine and mine alone. No one will carry it for me. It’s mine. So look away. There’s nothing you can do anyway.