Sunday, January 31, 2016

The Rumors Of My Death Have Been Greatly Exaggerated...

Because truth is always stranger than fiction, Bryan received a handwritten note from Kaiser Hospital yesterday.
Dear Mr. ______,
We were saddened to hear of Susannah's passing.
We hope that the good memories of life with her will help you through this difficult time.
Dr. Something or Other Pan
The Staff at Oncology/Hematology/Infusion
Kaiser Santa Clara


I mean--???

Bryan was doing whatever guys do when they just kind of stare into the engine of their truck when I walked passed him to get the mail. Hey, you got something handwritten from Kaiser, I said, want me to open it? So I did, his head under the hood of his truck. I'm dead, I said, and then he stood up and we just kind of stared at each other.

It sucks to find out you're dead as the result of a clerical error, particularly two days after you have gotten such good MRI results. But there it was signed in black and white: I had passed away. And they were sorry about it. 

So was I.

Even though it's a few hours south, Santa Clara is where I had to go for hematology after I returned from Israel. Apparently, they oversee an HSCT program for leukemia at Stanford and are familiar with stem cell/bone marrow transplant after-care. But I haven't seen them in a few months now. Just another huh? in the long, strange story of my health. I am dead to them. What can I say? You win some, you lose some.

Of course I have put in a call to let them know that I am still alive. Unless this is some M. Night Shyamalan movie starring me as a dead woman who thinks she is still alive, in which case this is a really cool blog. But I don't think so. I think this blog is just kinda' meh and they have me mistaken for another Susannah with a husband named Bryan whose good memories of life with her will have to suffice to help him through this difficult time. That time. Whose time?

All I know is this: if I am dead, then I am here to tell you that there is no tunnel of white light. Just squabbling children, tortillas with black beans and extra cilantro, and a sunny, cold Sunday afternoon in a house that smells like fresh laundry. Don't worry--if this is it, death is pretty fucking amazing.


Thursday, January 28, 2016


After Bowie died I saw this quote a lot, maybe too much, the specter of a follow up MRI looming over me. "When are you going to do it?" everyone asked me, and I would try to shrug it off. "I'm too scared," I would say, feeling that by admitting that I was doing enough as it was. After all, there were no doctors insisting I had to. Because I did not partake in the U.S. clinical trial but had my hematopoietic stem cell treatment in Israel, I am kind of on my own here. Did it work? A question that can only be answered in the negative, which is the suckiest kind of question there is. The only test that would give me any answers was an MRI, and only then would it tell me if it did not work. So I didn't get one.

6 months went by. It was July then, and I certainly didn't want to cast a shadow on our summer. We went to our family reunion in August. I didn't want to deal with it then. September, school year, then the holidays. After Christmas, I told Bryan. I'll do it after Christmas. Well fuck me if Christmas didn't come and go. We took the tree down and I still hadn't scheduled it.

Bowie was right about fear. It was there as I played MagnaTiles with Ozzy on the carpet. Why do I feel that tight band sensation across my torso? What's that? Walking to work wondering if my legs felt heavier than the day before. Every single second splintered with the gnawing dread of please god no in my stomach. Did it?

Finally Bryan said I owed it to him and the kids to get the MRI. He said that we can't be in denial. If it didn't work then we need to be proactive about next steps. Of course that got to me, the kids. I certainly didn't want to do it for myself, but I had to do it for them. Fucking kids, man. Whether it's trapping a spider under a glass or getting a brain, cervical and thoracic spinal MRI with contrast gadolinium dye, they kind of make you have to be brave.

So two weeks ago I scheduled the MRI for this morning, telling myself I could cancel it at any time. Then I proceeded to not be able to eat, to sleep. I pooped a lot. What can I say? My fight or flight response is strong. This morning I woke up at 4:30am not able to fall back asleep for my 7:15am appointment despite the Excedrin PM I took. The best way to describe how I felt is a bit of a cliche, but it's spot on: I wanted to crawl out of my goddamn skin. 

By the time I got to my MRI appointment my teeth were chattering. I signed all the usual papers, made small talk with the technician as she loaded blankets on top of me thinking I was cold even though I was actually a little sweaty. Then I spent 2 hours inside the tube, you know, just me, the banging clanging beeping of the MRI, and my thoughts. My fucked up, anxious, worst-case-scenario thoughts. It was a time.

I should just cut to the chase, shouldn't I? We will email your results either today or tomorrow, they said, so what I heard was refresh your email every few minutes because it could be right now. Or now. Now?

Now. First I got the results for my brain scan. Normal. No new lesions. Stable. All the words I wanted to hear. And then I waited for the spinal results. Refresh. Refresh. Refresh. Freaking out that they were taking longer. Would it take them longer to type up a report on new activity? Then I got that email, and you know the other cliche about the blood draining from your face? Also true. I opened the email: Normal. No new lesions. Stable.

And then I fucking lost it. Crying, shaking, happy. I called my dad who started sobbing on the phone (sorry to blow your cool, Dad). Bryan all shiny-eyed. All of us stunned with the relief of being able to cry happy tears for the first time in a very long time.

You guys. It worked. My treatment. I know I said that the MRI would only be able to tell me if it didn't work, and that's still true, but so is this. It worked. For now. My MS is in remission. Yes, I could probably go through all this teeth-chattering-poop-inducing-anxiety in a year or so and get another MRI, but most people who have HSCT only get one follow up MRI, then opt to have more only if their symptoms get worse. 

So if the lowest depths of misery is living in fear, then what does it mean when you conquer that fear? Everything. It means fucking everything.

With so much love and gratitude,

p.s. If you or anyone you know has MS and are curious about the treatment, here's a recent article on about the U.S. clinical trial performed by Dr. Burt at Northwestern. It is difficult to be accepted into the trial or treated off-trial, but there are also many international centers that offer HSCT for MS and other autoimmune diseases. If you would like more info, please don't hesitate to email me.

Wednesday, January 13, 2016

Happy Birthday (Just a Thing That Happened to Me)

Since the beginning of January I've been tripping myself out with the this time last years.... (Such a fan of the mind fuck, as evidenced here and here and here.) This time last year I was saying goodbye to my family. I was flying to Israel. I was getting a picc line inserted. I was having chemo. I was reborn. (Which sounds vaguely Christian, though that is not what I mean. Not at all.)

This time last year. I held onto this paper as if it could explain how the hell I got there, to Israel, sure, but also to MS. How? Why? Is, Am, Are, Was, Were, Be, Being, Been. Lama? Which is why in Hebrew. Only it isn't really, because לָמָּה? Nothing made sense, makes? not even my tenses here in the retelling, in a country of a different alphabet in a reality that I never ever in a million years would have thought possible. I held onto those days counting down, -6 and -5 Campath, -2 and -1 Fludarabine, Cytoxan, everything measured per kg and m2, bottles and boxes of pills lined up on the table in my hotel room, this one once a day, that one twice, those 3x/day, drink 3 liters of water. Cyclophosphamide, alemtuzumab, omepradax. Later, when I was allowed to go outside, I would think of the mangy street calicos as names of all the drugs. Zylol to protect my kidneys, also a pretty name for an ugly cat.

It seems impossible that this was only one year ago, much less that it happened at all. Did my neutrophils really drop so low that I didn't have an immune system? Did I really have MS? Do I? Once again the tense all sorts of huh. Every once in a while I hear the jingle to Trivia Crack, an app I played incessantly alone in my hotel room in Israel, or I hear the ring of a Skype call, and I am right back there, that feeling, that white room, far away from everything ever and I can't breathe from the something I can't even name.

(Other times I tell people that if this treatment worked and I no longer have MS, then the whole ordeal--getting MS, researching the treatment, going to Israel, having a bone marrow transplant, chemo, getting sick, getting healthy--if it worked, then this whole ordeal is the best thing that has ever happened to me. It has made me feel more alive, more appreciative, more present, more more. More afraid, more angry, more sad, because of course, if it didn't work, then it's the worst thing that ever happened to me. And then I laugh a little. Ha.)

This time last. Here I am today. I hate my hair growing out from chemo, but I also have a new found sense of whatever. The best thing that ever happened to me, the worst thing that ever happened to me. Either way, it was just a thing that happened to me. 
This time now.

Wednesday, January 6, 2016


I have a friend that I have not yet met. Her name is Janet and we sit next to each other on the bus most every day.
I don't know if Janet is really her name. Maybe it's Rebecca or Tish or Autumn, even. Still, I think of her as Janet, even though I know a Janet in real life which makes it even more realistic, how sometimes you have friends with the same name. 

I have never spoken to Janet, but almost every day she gets on at the stop right after mine, and almost every day she sits next to me. This has been going on for a few years now. Even when there are other empty seats, she sits next to me. I don't so much mind. She has narrow shoulders and sits small. I hate it when a large man sits next to me, his upper arm warm and knowing against mine.

Janet is smart, I think. A little older than I am. Her hair is black with smatterings of gray, like how a kid might have a smattering of freckles, only it's not cute, not really. For some reason I don't think Janet realizes just how gray she's getting. She works in the financial sector, frustrated sometimes that she did not do anything more with her painting. She used to love to draw.

I admire much about my friend Janet, most of which is how she has a way of saying nothing eloquently. In the morning she holds her phone in her lap as shiny as a beetle. I am good at keeping my head straight while darting my eyes to her screen. Once I saw her write something to someone on Facebook in Tagalog (I think). (Janet is part Filipino.) (I think.) When she is not on Facebook she is on Shopbop, scrolling through pages of sleeveless shifts of pink and orange. This makes me sad, mainly because she only ever wears neutrals, sensible fabric and shoes, and she would really rock the shit out of a sleeveless pink and orange dress if she would just let herself buy one.

Janet has not been on my bus for the last few days. She is probably sick. Or on vacation. (I hope she has not been fired.)

A woman named Deb sat next to me today. She has also been on my bus for years. I am not particularly fond of Deb, even though I have not yet met her either. She has frizzy hair and says hellooooo! to the bus driver as she scans her commuter card. How are youuuuuuu? to people she knows across the aisle. Can you believe all this raiiiiiinnnnnn? to no one at all. I close my eyes and miss Janet. My friend Janet.