Lessons That I Cannot Learn

August 2nd, 2016

(If you are considering getting a stem cell transplant for an autoimmune disease and want to know what it was like, you can go back to my very first post and follow along with me.  I did it at Northwestern with Dr. Burt. Spoiler alert, this post gives away the ending.)

Sorry it’s been so long since I updated my blog. Remember that I got my stem cell transplant in September, 2015, and my last post said something like: sayonara. When I came home, I imagined that I’d exactly like Halle Berry in Cat Woman. This is problematic for a number of reasons…I don’t even own a whip.

In the first month after the transplant, my MS was worse then ever. I struggled to walk. I wondered if I’d done all of this for nothing. It seemed selfish to have tried this foolish thing. Whenever I looked in the mirror, a sick, bald person looked back.

Everybody said returning to life would be like a rollercoaster ride, and I thought, “That sounds like fun, I’ll just go up, and up, and up.” Tick, tick, tick, tick, tick, says the roller coaster.

September & October

I tried to go back to work as an editor and found that the piece of my brain that that found the right word was gone. Before chemo, I’d read “she crouched and slowly walked” and my brain would whisper “she crept.” It was as easy as breathing, but now, I was broken. Sometimes, the only word I found was “fuck.”

I, like many chemo patients, was smacked into menopause. This arrived with hot flashes that kept me up all night and the anxiety of a middle school girl.

I drank a smoothie for breakfast. My smoothies have spinach, broccoli, berries, almond butter, etc, etc, etc. Healthy shit. About an hour later, I threw up for 5 hours. Every time I moved, I would puke so hard I also pooped. I did not realize that this was from the smoothie until the second time this happened. But surely, it could be a coincidence.

I wasn’t funny anymore. I would try, and people would look at me quizzically. I’d shrug. This was demoralizing.

And all the while, there was back to school, work, life, climbing, and my book that I desperately needed to revise.

November, December

I turned a corner. Some of the fogginess receded. My MS symptoms returned to steady state – just a little worse than before. I could walk – maybe a little further?

Then I broke my mother-fucking toe. No more walking.

I tried a smoothie again, this time with different ingredients, all still healthy. That day, while cleaning throw-up out of every garbage can in the house, Chris asked why I didn’t use the toilet. Quite simply, it is less confusing to throw up in the garbage can and poop in the toilet. The other way around uses too much brain-power and is way more gross.

My friend Amy asked if I would be on her podcast. She thought I might be funny. And I thought, oh no. She doesn’t know I’ve stopped being funny. I didn’t tell her, though. I just said yes.

Work got better. The correct words, with some coaxing, started to arrive again.

January, February

I started going for short walks, and this was interesting. I’d spent the last 15 years of my life paying careful attention to how much my walking would diminish. The increments got infinitesimally smaller every time. Ten years ago, that distance was 4 miles. Before I went in for transplant, that distance had shrunk to about 1/8th of a mile. But now, on these walks, I was watching to see if I got better. It seemed like, tentatively, the answer was yes. I started walking a one-mile loop, and going a little further every day before my leg went weak. I think, maybe, yes.

I feel better. I’m standing straighter. I can fully pretend to be normal.

March, April, May

I’m revising my book. It feels so good to do this. I’m revising to make it funny, and it’s working.

I’m walking every day. Maybe farther than before?

The Kidlit Drink Night Podcast (www.kidlitdrinknight.com) is a success. It’s a podcast for grown-ups who like children’s books. People who fit this description think that I am funny.

I go climbing. I’m not great, but I have genuine fun.

Work is fine.

I try a smoothie again, all different ingredients, because surely, that was just a fluke. I throw up all day.

June, July

I can definitely walk further than I could in the past years. I’m getting better! My son and I take long Pokemon Go walks (I love that game) and I can go further than I could in years. I’m like Benjamin Button. The clock is turning backwards.

I finished my revision, and the book is out on submission. A bunch of agents have shown interest, but more than that, I think I’ve truly found my voice. It’s dark, quirky, sweet, and funny. Like me. This blog and this experience helped me find it.

I took the kids and visited my friend Beki in Atlanta this weekend. She’s the one who made that great video with people holding up words for me. On Sunday morning, we walked to a spot for breakfast. Next door, there is a smoothie place called Kale Me Up. I think, yeesssssss. Just what I need. Health food.

I choose the one that is most different form any smoothie I have ever had. About an hour into my drive back to Raleigh, I feel it. Oh no. This is not possible. I make it to a McDonald’s and spend two hours throwing up there (in the parking lot where it is 104 degrees, in the McDonald’s bathroom, kneeling in front of my car to hide, in the McDonald’s bathroom again). I rally and figure I can take the drive home one exit at a time. Maddy calls Chris, and he tells me to check into a hotel. Now there’s an idea. I scan the horizon. There is a Quality Inn across the street. No. I figure I will get the kids food, fill up the car, and head home. I make it to a Bojangles and throw up in the parking lot. It is incandescent yellow bile. I make it to a gas station and have Maddy fill the tank while I throw up in the parking lot. Maddy calls Chris, who is in the car, heading my way. He tells me to check into the Quality Inn because throwing up while you are driving 80 miles an hour is dangerous.

I think to myself that I would go the speed limit. I’m not stupid. But I relent and check in. I spend the night listening to a book on tape while the kids watch cartoon network. Chris arrives at around 8:00 pm. He kisses my head. “I would’ve thought the smoothie thing would have resolved itself by now.”

“Me too. Obviously.”

So, everything is great. I maybe learned my smoothie lesson, but probably not because it doesn’t make sense. Chris is still my hero. And I am getting better.




September 24th, 2015

White blood cell count = 1.6.

Chris and I are on our way to the airport, and I’ll be home at around 1:00 am.

Our plan is to not tell the kids, and I will surprise them in the morning. I cry every time I imagine it. I am going to inhale them, crush them, and press my head against their heads.

Look out world

September 24th, 2015

I’m gonna breathe some mother-fucking fresh air tonight! (Then subway air, then airplane air, then North Carolina air, then the air of my actual home. Hooray for air!)

You heard me. Mama’s comin’ home. (Probably.)

My white blood cell count is 0.5. Dr. Burt thinks that it’ll be at 1.0 by this afternoon. If I get there, he is going to try to discharge me today. If I am very lucky, I could be in my house tonight. I’m going to pretend that this is totally going to happen. This strategy has worked for me in the past.

Line up those ducks:

Chris is checking out of our hotel room in Chicago right now. I booked a flight on Southwest for this evening at 9:45 pm to get into Raleigh at half past midnight.  I called SW and told them that I might not make it, and they said no problem. As long as I call an hour before the flight, they can change it for me. If we have to spend another night here, I’m sure we can find a hotel somewhere. (I’m so happy about going home that I might be able to actually fly there like a superhero. I don’t think I’d be able to manage the luggage, though, and Chris is too logical to fly like Superman. I guess I’ll take a plane.)

On top if that, Katie Nichols (mom of E.Vil Joey) made me the most beautiful quilt. I slept under it last night, and I felt  loved.

photo 1 photo 2 photo 3photo 4

She’s a true master, and I am touched by this gift. (You should hire her to make you a quilt out of sentimental old clothes. She’s the best. http://www.katenicholsquilts.com/)

I am so honored that you all went on this journey with me. I don’t think I could have done it without you.  Your support means everything. I am so grateful for you. I felt your love the whole time … Wait. I can’t get sentimental right now.

I’ve got to pack.


My numbers moved

September 23rd, 2015

My white blood cell counts went up. They were < 0.1 yesterday. Today they are 0.1.This is good news, but not great news. The need to go up to 1 before the doctors will release me into the wild. And this number, well, it’s low. The nurse told me that it was unlikely that I will get discharged in time to make the 1:30 flight to Raleigh on Friday. I just changed it to the 9:00 pm flight.


They will take a fresh batch of blood at 5:00, and we’ll know more then. I could be discharged on Saturday, and I just have to be at peace with that.

Some people have asked what happens next.

Imagine that I am a house. I’d be a pretty little seaside cottage if I was a house, and there would be a garden of flowers out front. Now imagine that for the last 14 years, there have been rats in the walls chewing on the electrical cords. I hire a badass exterminator (picture the Grimm Reaper) and kill all the rats.

If this works as planned (and if what I have is Devic’s or Relapsing Remitting MS), there will be no rats and no new holes. This means no progression of my disease. If this is secondary progressive MS, however, then it wasn’t the rats all along, but something else, more mysterious, like moths. In this analogy, nobody knows how to get rid of moths.

The docs suspect Devics, b/c that is what it looks like on my MRI. However, ninety percent of people with Devics test positive for the Devics antibody. My antibody test was negative, leaving this uncertainty.

But, if I’m lucky, we’ve banished the rats and my body will repair the holes on its own. There is no way to predict if this will happen. But for lots of people, it does. I consider stopping the progression of the disease a huge win, and will be over the moon if I actually start getting better. Dr. Burt told me that any improvements I make will be seen in the first two years, and I shouldn’t expect anything to happen quickly.

When I get home, it’ll be back to business as usual. I might get tired more quickly, but I’ll be ready to get back to my life. My immune system will be like it was when I was a baby. I am supposed wash my hands a lot and avoid sick people. Technically, they want anyone who interacts with me to have had the flu shot. In a year, I will have to get my immunizations for Polio, measles, etc. Every cold will be brand new to me.

But this room is large and sunny. Chis is with me. This waiting is not unpleasant. It’s just that I want to go home.

Tappin’ Out

September 21st, 2015

I’m finished with all the major interventions. I’ll get blood and platelet transfusions as needed, but those are normal.

I am at day +6. That mean’s it’s been 6 days from the day they gave me my stem cells. Normally, it takes around 9–12 days for the stem cells to turn into white blood cells. When that happens, my white blood cell count and my absolute neutrophils will start to climb. I can go home as soon as the white blood cell counts are >1. I booked my flight home for day 10 (Friday), and we need to hope that I make it out by then.

Cells counts today (+6)

White blood cells = < 0.1 (normal range 3.5 – 10.5)

Absolute neutrophils = Too low to count (TLTC) (normal 1.5 – 8.0)

Platelets = 26 (I got a bag of platelets yesterday b/c I was low) (normal 140-390) Transfuse when <10.

Hemoglobin = 8.9 (normal 11.6 – 17.5) Transfuse when < 8

They suspect that I will need hemoglobin soon. As it is with most vampires, this bag of blood will give me energy.

A couple of day ago, I felt like quitting. Drop the mic, I’m out.

I was just gonna let the sun shine on my face, breathe some fresh air, and crush my kids. And then, I guess, die from the common cold.

It’s too late to quit.

This is harder than I thought it would be. I got to figuring that my biggest problem is that I don’t think things though. I talked to Beki about it, and she said that’s why I’m the perfect person to take on a caper. C’mon, we’ll just rob the bank and then we’ll feed the ducks. It’ll be a good day, tater.

Is that what I thought? I’ll get a little chemo, rest a little bit in a room, then go get an ice cream cone? Chemo shmeemo. Humans do it. That means I can do it?

People said I was being brave, but I didn’t think I was being brave. To me, I was just taking a logical step. This could stop my disease. I should do it. Bravery didn’t really come into the picture because I did not fully understand.

My favorite fortune cookie of all time told me this: The only thing you have to fear is your own stupidity.

But then my girlfriends came. They reminded me that I agonized over this decision. Remember? I cried all day reading the Dr. Burt patient-run Facebook page? Remember when HP came down, and we weren’t sure if I was going to be accepted or not, and we got drunk?

Bravery did come into the picture: I was more scared of my disease than I was of chemo.

HP said that I knew what I was doing. My only problem is that sometimes I’m a little out of step with reality, but that is why she loves me.

And then there is this: Melanie, HP, Jill, and Scott came in from Nashville, Racine, and Raleigh to keep me company over the weekend. We had dinner parties in my room, re-arranged the furniture, played dominoes, and laughed our asses off. They obsessively wiped down my room with alcohol wipes. I felt, overwhelmingly and powerfully, that I am loved. I had a moment, it’s hard to describe, but these are girls I’m going to keep until we all die of old age. We’ll have to hold each other up at our funerals. Joey will be the last of the E.Vil girls to die, because she is the most evil, and it will be hard on her.

photo 1 photo 2

Having friends like this is the luckiest thing in the world. I know I made some of that luck, but that doesn’t diminish the power.

More good things: Amy came to visit, and we made plans to make soup for each other every other week back in Raleigh. My cousin Erin is coming today. I wrote down all the words from the video Beki made so I can read them whenever I like.

You are all sending me love and support. It’s damn humbling. I’m so grateful. I love all of you. I can’t think about it too much or I’ll cry. (Well. Too late. I’m crying.)

Yesterday, as I was taking my nap, I felt your love as strongly as sunshine on my face.



I am floored

September 18th, 2015

Thank you. Especially Beki, because she put this together.


I guess it was your turn to make me cry.

I love you.




E.vil Girl Action

September 17th, 2015

I am neutropenic. No white blood cells and no immunity. Yesterday they gave me Rituxan (to kill the B cells cells that make antibodies) and IV steroids. The steroids make me agitated and unable to sleep. I’m hoping to get some rest tonight, although I had to take Prednisone today (to step down from the IV steroids.) There are also antifungals, antivirals, antibiotics, etc on board. Soon there will be sleeping pills. But I feel okay. I ate a burger, walked thirteen laps of the ward, and took a two-hour nap. Purty good day.

I’ve been making Chris bring me coffee every morning, although I haven’t tasted it yet. It just visits until Chris deems it too old to drink.

 Tomorrow Chris is going to fly home and see the kids, get some stuff done, and open some mail (maybe – he’s bad at mail). He’ll be back on Sunday. Some representatives of my gang of evil girlfriends are coming to hold down the fort for him (Melanie, Heather P, Jill, and Scott). We’ve been taking vacations together for about 10 years. I’m not sure when we decided that we were E.Vil, but it suits us. Dr. Burt even granted me permission to have a sip of champagne.

Chris spent about 3 hours writing up instructions for them. My husband—he doesn’t usually shower every day, he likes unruly beards, he’s a slob (like me)—he is advising the council of E.Vil on cleanliness.

The below was in his 4-paged single-spaced document. (One of the pages included a map of the ward.)

 “Keep yourself healthy (you guys are smarties and probably don’t need to be told this, but Ima tell you anyway):

  • Wash your hands when your mama told you (after peeing, pooping; before eating)
  • Keep your hands away from your face, hair
  • Bring some hand lotion, you’re going to be washing your hands a lot
  • Keep the hotel, hospital tidy
  • Shower daily, preferably prior to visit
  • If you feel yourself getting sick, do not go to the hospital


Keep the girl healthy:

  • Do not touch the girl
  • Do not kiss the girl (I’m looking at you HP)
  • Do not sneeze on the girl
  • Wash your hands before handling her stuff or handing her anything
  • She hates the smell of the hospital hand-sanitizer, use soap instead
  • There is a container of sanitary (clorox-ish) wipes on the table, if you bring her something from the outside world that’s wipe-able (stuff in bottles, condiments, books) wipe it down when you bring it in. Doesn’t hurt to wipe her table and stuff down once or twice a day.
  • If she leaves the room, make sure she wears her mask, gloves and gown.
  • Do not use her bathroom. Use the ones just outside the 16th floor airlock.”

The note goes on with instructions about how to get to places, food I might like to eat. I am so lucky and grateful.

Regarding the kissing: Sometimes HP says hello with a quick kiss full on the lips. It’s just her way.

In response to Chris’s email, HP wrote me: I’ma kiss you anyway.  Just kidding – I’ll kiss Mel.

To which Mel said: FINALLY

I hope they wait until they get to my room.

I’m feeling much better today

September 16th, 2015

I even ate a whole bowl of oatmeal. (I’ve lost 12 pounds. but I’ll find them, again, I’m sure. Or rather, they’ll find me.)

I’m neutropenic, which means my white blood cells levels are less than 0.1%. I’ll go all the way to zero. And in this stage, I can’t fight off any sort of cold or ailment, so they have me on antivirals, antifungals, and an antibiotic drip. But,I got my stem cell transplant yesterday. They put my cells into an IV bag and let them drip into my arm. It made me a little dizzy, happy and tired. All those cells have to do now is grow into an immune system (magic). It takes 9 – 11 days for this to happen for most people. I will be neutropenic the whole time.

I gotta say, the day after the 4th day of chemo…well, I mean, I’d been poisoned. I was on 3 kinds of nausea meds, but my insides were green. I felt like if I opened my eyes, I would throw up, and if I threw up, I would also poop, and if I also pooped, I might just have to lay on the floor and die. Only the floor would be too cold. So the only thing for it was to be perfectly still with my eyes closed and wait. I couldn’t even listen to a book on tape. Which is bad.

Then yesterday was better, more fear of nausea than actual nausea, and lots of Ativan and Benadryl to sleep all day with. I have so much more compassion for people who have to get chemo on a regular basis. And how must it feel to get chemo, and then have it not work. I cannot fathom. I understand getting tired of it. I understand why they call it a battle and why some choose not to fight. I’m so grateful that I am not in those shoes. A big reason I got through these last two days was because they were temporary — this treatment has a beginning and an end. Plus the end could mean my progression stops, and I might actually get better.

The mean part of me used to fantasize about giving people a temporary version of my MS. Somebody fit, young and beautiful would complain (for too long) about something minor, and I would wish my ailment on them for one hour. Just see how it feels, fuckface, to have trouble walking. Then I will listen to you complain about your temporary ailment, boo-boo, baby shit. Is that too mean? I only felt that way on a few occasions. But I have felt that way.

But chemo? I wish that on no one. Certainly not on the ill and frail. I am so grateful for all the science and hard work that went into finding this potential cure, but I’m also sure that in 50 years we will find this as barbaric as bloodletting. We will laugh at cocktail parties, remember chemo? Wasn’t that awful? People were so stupid back then.

Update from Chris

September 14th, 2015

Karen wants you to know that she can’t open her eyes without puking.

The excellent Medical Professionals of Northwestern Memorial Hospital want you to know that they have deployed all reasonable countermeasures, but this feeling is, more-or-less, temporarily normal.

I want you to know that Karen is kicking ass.  She is hopeful, determined and heroic.   Also very, very sleepy, which helps with the open eyes problem.




September 12th, 2015

Honey Badger feels like shit. Third day of chemo. Might throw up. Might not. Here’s Lance to help us through it.

photo (6)

My mom, sister and Atul have been giving me distance Reiki for an hour each day. I am supposed to lie quietly in the dark and think of nothing. To simmer down. I listen to rainforest music and imagine a white fog. They will send me the energy that I need to heal. I had a powerful image once when my mom was giving me Reiki. I was flying in the sky and she was on the ground, and she was half-way between a flat version of the sun and a giant, yellow duck. She was holding a yellow flower, smiling and saying, come and play with me. Come down! But I couldn’t, because I was holding something, and I couldn’t let go.

This is very similar to a story that Atul, our Reiki master, told me about a woman who was wrapped in multiple yards of fabric. A man grabbed onto an edge of the fabric, and started to pull. Soon the woman would be naked. God was at the bar, possibly sitting with my mother the duck, and a man asked why God wouldn’t help her? She doesn’t need my help. She’s still holding to the edge of the fabric in her teeth. When she lets go, I will help her.

When Atul was teaching me to do Reiki, he told me to set an intention with God. I told him I wasn’t sure that I believed in God. He asked if I believed in anything, and I said yes. There are all kinds of energies and things about the universe that I don’t understand, and these may seem like magic or God now, but they may also seem like science later.  Atul said, okay, then you just set your intention to God, the universe, or whatever. It may be just for today, I won’t get angry. He said I could ask for his help or my mother’s help as a guide while I am doing it. There is more to it than what I am telling you, but when you do Reiki, you set your intention (or say your prayer) and hold your hand on each of your chakras for 3 minutes. Imagine yourself in a white fog, let the light come in, and listen to soothing music.

And the thing is, even though I am a scientist and a skeptic, there is more out there than I can understand. My mother is supposed to be dead of bone cancer, and she isn’t. And the Reiki has changed her attitude and her life, and she is healthier in spirit than she has ever been. And when I regularly practiced Reiki, I was a nicer, healthier person. I can feel it when they give me distance Reiki. It’s happened too many times for me to discount. Even when they don’t tell me at the time that they are doing it, I know. I feel their heat.

If there is a lesson in this for me, I haven’t found it yet. What am I supposed to let go of? Pride? Skepticism? I try to be open. Open up more? Let myself play? I did finally break down and ask for help during my treatment. At first I turned everyone away. I don’t need help. But I do, and I thought that might be my lesson.

Here’s what happened when I said yes:

When Steve offered to bring some food for my mom (apparently, the most delicious vegetarian chili in the world), I said yes. The kids and my mom are so grateful, and have had it for dinner two days in a row. Zach, apparently, had 5 bowls of it yesterday. Now my mom thinks Steve (of DOFO fame) is the best person in the world. And Runner Girl Stephanie brought over chicken tetrazzini, which everyone loves. And Climber Stephanie stopped by last night to say hi and look at Maddy’s new clothes. And now Meg is bringing over a cooler full of food and some wine.  Louise, Mike, Colleen, Richard, Sam, Will, Margaret, Peter and Malak are all helping my kids stay happy and healthy.

And other help – some people have sent beautiful earrings (Rachel and Laura) and scarves (Shelley and Runner Girl Stephanie), and these make me feel loved. Jackie gave me perfume that smells like the forest, and it is just perfect for someone trapped in a hospital room. Amy gave me jelly.

I’m grateful. I’m optimistic. I feel all of you loving me and helping me. If God, the universe, or whatever is helping me, I need it. I accept it. If there is something I need to let go of, I don’t know what it is. Maybe you can help me find it.