Tappin’ Out
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.
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.
Filed under Stem cell transplant for MS | Tags: chemo, Chicago, HSCT, MS, stem cell transplant, support | Comments (13)
Update from Chris
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.
(shhhhhhhhhhhhhhh…)
Nuts and Bolts
Where am I, and what is happening?
Here are some nitty gritty nuts and bolts of what is happening to me, in case you’re interested or about to undergo this procedure yourself.
On Monday, we arrived at Midway Airport and took the train to our Residence Inn. You take the Orange Line to Clark and Lake, and you get off the train and either take a cab or walk 10 blocks to the hotel. We usually walk, but this time, our bags were ridiculously gigantic. Northwestern has a deal with the Residence Inn on the Magnificent Mile, so we get a 2-room suite with a kitchen (750 square–foot). I feel swanky danky. The windows open, the bed is big, the day is pleasant. We get to the hotel at around 3:00.
Chris will be staying the hotel the whole time, but am only there for two nights.
This is Monday:
I want to do a little writing (I’m working on something), and Chris wants to take a nap and go exercise, and it’s abundantly pleasant. We go to dinner at a Chicago deep-dish pizza place and have a terrific time. We went to Giordanaos this time. Last time we went to Lou Malnati’s. Chris prefers Lou’s. I like Giordanaos. Definitely worth getting.
Tuesday.
I have a 7:00 am appointment to get two central lines placed. One in my arm and one in my jugular. Both lines go to my heart. The room we do it in has lots of imposing white machinery, a table for me, and x-ray things that they can use to see inside me. It is very cold. I get on the table and they clean my arm and my neck and get everything prepped.
Here are some of the words the doc used.
You ready?
Yes.
You will feel a pinch, some stinging, then a lot of burning.
This is the local anesthetic going in. The burning makes my fist clench.
You okay?
I say yes. They do some other things, make an incision, and thread a needle in to guide them. I can see the needle on the little monitor, but my face is turned away from them.
Some hard pushing. We’ll do it three breaths. Hold your breath on each push and it will make it go easier. He pushes hard on the line and forces it through my vein. I cringe.
I know it hurts. You’re doing good.
More pushing.
The anesthesia has run out on your neck. I just need to do three quick stitches. No anesthesia. Okay? He pats my hand.
Yes. A tear escapes as I feel him sewing on my neck. More from the ick of it than the actual pain.
Okay. All done with that. Now to the picc line. Halfway there.
They add a picc line to my arm. It is a line into my bicep, and it has 3 tubes coming out of it. Something is pinching and hurting in my arm. But I let it go.
Here is a picture of the picc line. It is supposed to stay in for 6 days.( This is the new dressing for it, though, they removed the old one because of all the blood. More on that later.)
It’s time for plasmapheresis, which is a protocol specific to Devic’s patients. Apparently we create antibodies that attack the immune system (and I have been suspicious of the gluten and dairy antibodies for a while now.) The idea is this: dump all the antibodies, dump the disease. My appointment was at 9:00, but we don’t get there until 9:30. They use the port in my neck and hook it to something that is a lot like a dialysis machine. One of the lines takes my blood to the machine, the plasma is separated out by centrifuge, and synthetic plasma is added before the tube returns the blood to my body.
Neck port and machine to remove plasma.
I secretly hope that this new synthetic plasma will come with super-powers. What superpower should I get with all new plasma? The ability to make people feel all gloppy? I think I have that power already.
The nurse holds up my bag full of plasma. It looks like five gallons to me, but Chris says it was more like a gallon. It’s orangey-yellow, like the heirloom spaghetti sauce I made this summer. She says: Say goodbye to your disease. And drops the bag in the red biohazard bin. To my mind, I have just taken one of many steps on this path. I don’t even say goodbye. I wave like a queen.
The nurse suggests I take a hydrocodone for what’s next. She about to remove the port from my neck, and the antiseptic she uses to clean the wound will sting, then when she pulls the catheter through my vein, she’ll do it in one quick motion, and there will be some discomfort. Then it will be tender for few days.
When a nurse says, I’m about to do something to you, but you should take a hydrocodone first, take it. The nurse was right on all counts, although I would have used stronger words, maybe curse words to describe it. I wish I’d taken a hydrocodone ahead of the insertion, taking the edge off would have been nice.
Then Chris and I are released into the wild. I wanted to write a blog post (about honey badgers and empathy weasels), and Chis wanted to exercise and nap again, so we did that until it was time to get ready to go to a fancy dinner. I have a lot to hide now – a port in my arm, a giant bandage on my neck, a bald head. And, as I have already established, I am vain. I want to look beautiful for Chris. I manage it: leather hat, scarf around my neck, long sleeved shirt.
My left port is still hurting, so I keep it straight and eat with my left had though dinner. Everything was delicious and unique. We went to Nico Osteria, and we had the best meal we’d had in Chicago yet.
When I get to the hotel, my picc line is really hurting. I take my long-sleeved shirt off and discover that it is bleeding. My mom, sister and Atul are supposed to do distance Reiki on me now (I will explain in a future post). But I can’t empty my head. All I can imagine is taking a sleeping pill and a Xanax, going to sleep, and quietly filling the bed with blood. I ask Chris to see if he can find out if we should go to the emergency room. Chris pages Dr. Burt, who calls him right back and says the emergency room won’t know what to do with it. They’ll dink around with it for four hours then it’ll be time to be admitted anyway. He recommends we apply pressure. Pressure hurts, but after I am finished with Reiki, Chris wraps it and presses it very lightly. As long as I don’t move, it doesn’t bleed. I drink more wine. It’s the last wine I’ll have for at least a couple of weeks. We watch Stephen Colbert in our king-sized bed. (When Chris and I were first dating, I was 21 and he was 29, and we used to watch Letterman in his bed. He was a smoker then, and I would smoke sometimes too, and we’d just ash behind the bedframe. That was also where we put all our used tissues. One time, it caught fire, but we managed to put it out.We were dirty birds and well suited to each other. We’re still together, married 18 years. We’re still slobs, although we work very hard not to be.) Anyway, watching the late show with Chris reminds me of the college days and how much I still love him. He’s a good egg.
I take a sleeping pill so I can sleep, I do not fill the bed with blood, and I show up at Prentice Pavilion at 7:30 am for admittance. I’m anxious, but not too anxious. I just need to keep taking steps in the right direction.
The days will go like this:
Day minus-6 (9/9, yesterday) They change the dressing on the arm port, then give me a Rituxan infusion. This is a Devic’s-specific infusion. It kills all the B cells, which are related to antibodies. Here is the theory: because I make antibodies that say kill, kill, kill, we first remove all my antibodies (see plasmapheresis), then remove all the B cells that talk to the antibodies. My B cells think everything is the enemy, and they go fuck shit up to protect me. My B cells need to simmer down. Anyway, all day yesterday, I felt fine. Ate a lot. Walked a mile (18 times around the ward with a book on tape – the Outlanders.)
Day minus-5 (9/10, today) ATG +Chemo (Cytoxan). This morning, before I got hooked up to everything, I walked a mile and did 30 minutes on the bicycle in the hall. I watched the sunrise over the lake. To start this procedure, they run fluids thorough you so the chemo doesn’t satay in your bladder, and I have to have a urinary catheter, which I have been dreading. I asked for a latex-free one because of my difficulties last time (It hurt like a bad UTI). This time, I’m happy to report that the catheter doesn’t hurt. I was writing this as the first round of chemo went in, and I feel fine right now. Perhaps a little woozy. The anti-nausea meds I have are Compazine, Ativan and Zofran. I might need a nap. And a wireless bra (Chris is on his way to get me one.)
Day minus-4 to day minus-1 (9-11 to 9-14) will be exactly the same as today. (They will leave me hooked to fluids through the port and leave the catheter in.) I am told that I will feel progressively worse as the chemo builds up in my system.
Twenty-four hours after my last round of chemo, they will remove the catheter (Hooray!), but not the picc line.
Day 0 (Sept 15) They will give me my stem cells back through the picc line. Ironically, I’m supposed to feel the worst on this day. I think I will need crème brulee to celebrate.
Day 1 (Sept 16) More Rituxan to be sure all the B cells are gone. This is also supposed to be a bad day as the chemo will still be raging.
Sept 16 – Sept 23, 24, or 25 Nothing will be attached. I will get progressively better. We will wait and watch my cells grow, especially my white blood cells. I will be free to roam the hall (wearing gloves and a gown) until they release me to home, which I hope will be Sept 23. Some E.vil girls are coming to visit, and I hope to stir up some trouble.
Then I will be home. And as I get better, all my MS might go away. It could take years, but without the constant attacks from my immune system, my body might be able to rebuild the myelin sheath around my nerves. I daydream about running, jumping on the trampoline, dancing like a maniac for hours. (And the poop and pee — I’ll be the boss again.) The best will be not to have the constant worry: I wonder if I can make it? MS has been with me everywhere I go. It will be nice to put that down.
I promise I have some funny blogs in the works. Catheters make humor less funny.
Filed under Stem cell transplant for MS | Tags: catheter, chemo, Chicago, devics, harvest, HSCT, MS, picc line, port, stem cell transplant | Comments (21)Honey Badgers and Empathy Bears
Two days ago, I arrived back in Chicago for HSCT transplant for MS. I have just been admitted into the hospital room where I will stay for the next 2.5 weeks. It’s a pretty nice room. I’m doing fine, and although I have a lot to tell you, I want to tell you about being home first.
I was home for three weeks in Raleigh. It was such a whirlwind, I had no time to post…
We have the first days of school, open houses, meet the teacher, PTA meetings, the climbing gym, coffee with friends, drinks with people, bridge, and brunch. Everything is good and fun, but it is emotionally exhausting. Everyone falls into one of two categories:
- I’ve told you all my secrets.
or
- I’ve told you nothing and you wonder if I’m suddenly the punk rock girl you always suspected me to be.
How am I going to present myself to everyone? I need to figure out how to act. I decide to be like the Honey Badger, because the Honey Badger doesn’t give a shit. Either you know about me or you don’t. It doesn’t matter. I am the Honey Badger. I don’t even give a fuck.
(Watch this video if you are one of the 7 people who haven’t heard about the Honey Badger. )
With a purple mohawk, it was easy to pretend to be the Honey Badger. I looked like I meant it. But when my hair started to fall out, it got harder.
I thought my hair would fall out all at once, on, say, a Monday at 9:00 am. But it fell out in spells. It would get itchy, fall out for an hour or two, then stop. I could pick at it like a monkey picks at vermin, and this was surprisingly satisfying.
Eventually, enough fell out that I started referring to myself as “Patches MeGee.”
See that bald spot in the back, that’s where my hair rubs the pillow every night. Pretty, eh?
If you look up what to do when your hair starts falling out, you will see advice to shave it all off. The blog-o-sphere says is too demoralizing to watch it go piece by piece, and you will look crazy and homeless. But deciding when to shave your hair down with a razor is like deciding when to put your elderly dog to sleep. Is today the last day? Nope. Not yet. (Clearly, I waited as long as I could.)
Skinny has volunteered to shave his head bald in support of me. This is a very sweet thing to do. I decide that I want to do it in the Lot. (Every Tuesday, our gang goes climbing at the gym, and then at 9:00, we drink beers in the parking lot. We call it the Drinking Lot Club.) I text the gang: Skinny are I are going to shave our heads in the Lot tonight. We’ll be like twin weasels.
Stephanie texts back: I’m into weasel shows.
Gina texts: I’m into weasel shows, too.
Anna texts: Can’t wait to see the weasel gang.
It makes me giggle to think of us as a weasel gang. I imagine me and Skinny with little bandannas and guns.
When I get to the gym my friend Sheila asks if I have gotten sun, but I say, No, I’m blushing. She asks why, and I tell her that it’s hard to be losing my hair, and it’s possible that I am embarassed. I lift my scarf and show her Patches McGee.
In the Lot, Stephanie shaves my head, and Anna shaves Skinny’s. Anna’s getting married that Saturday, and we joke about her shaving her head before the wedding. Her fiancé, Amanda, would murder her. Which is funny. There is more lackluster joking, mostly about the heists and bank robberies that Skinny and I will pull when we both look like slippery weasels. I’m having trouble finding the joy in the moment. I wanted this to be fun, but I can’t help it. I feel sad about being bald.
The truth is, I am not the Honey Badger. I am vain. I’m overwhelmed. I don’t know how to act normal. I want to lay in the dark and stare at the ceiling. I want to send a mannequin to the thousand things I have planned with friends, co-workers, acquaintances, and teachers. I wonder if people will believe that a mannequin of Halle Berry dressed up as cat woman is actually me?
Here are some pictures of me and Skinny.
Everyone says I look beautiful bald. Sure, I’m gorgeous, but I’d rather have hair. I think of that internet meme about empathy and sympathy. It has a Sad Fox, a Sympathy Goat, and an Empathy Bear. In the response to the Fox’s sadness, the Sympathy Goat says, Yeah. That’s bad. Want a sandwich? And the Empathy Bear says, I know this is hard. And I’m here.
Shaving your head is what an Empathy Bear would do, and I’m grateful.
That night, Stephanie catches me on my way back from the bathroom and says, You’re doing a good job.
What? I say.
You’re handing this with grace and humor. It’s hard. Nobody wants to be bald.
All my tendons go loose. I can’t take this kindness because I am too busy holding myself together and being the Honey Badger. She starts to hug me and I say, You can’t hug me now. I don’t want to cry.
Stephanie wipes away her tears and nods. She’s an Empathy Bear, too.
This is harder than I thought it would be. And it doesn’t stop with just being bald.
I get prickly heat because I wear a head wrap to pick Zach up from school. It is too hot, I’m a sweaty girl, but I am too vain to take off my head wrap.
I have an abundance of sore, itchy pimples.
Some of my hair is growing back in…in patches that make it look like I have male-pattern baldness.
And this morning as I am getting ready to go to Northwestern to be admitted for 2.5 weeks, I notice something else.
The hair that is growing back in is white.
Maybe I was never meant to be like a honey Honey Badger. That’s not my style.
I’m more of a fox, anyway.
Filed under Stem cell transplant for MS | Tags: baldness, chemo, Chicago, hair loss, MS, stem cell transplant | Comments (11)Monkey Girl
The problem with dying your hair purple right before you go bald is that it leaves purple stains on your scalp. I look like someone chopped at my skull with an axe.
This is not the look I am going for. I shower and wash my hair with soap. The purple spots stay, but I scrub a bald patch on the top of my head. This is not the look I’m going for either.
My intention was to embrace the baldness. I’m gonna rock out with my cock out. But this is not how I feel. I have male-pattern baldness with spots. I. Do. Not. Want. I feel sorry for myself.
I had a friend in college, Bob; he’s a drag queen now, I think. I lived with him when I shaved my head, and he wanted to do a photo shoot with me in a pink frilly dress with a monkey tail and monkey gloves. We had captions: Monkey Girl eats a sandwich; Monkey Girl goes to the beach. I am brushing my teeth when I think: Monkey Girl is brushing her teeth.
And, I have a problem. I’m out of wine. Stephanie is coming over tonight, and we usually drink wine while our husbands have band practice. The AirSupply song is looping in my brain: “I’m all out of wine, I’m so lost without you.”
I explain to Chris, and he offers to go. But I can’t hide for the six months on the off chance that I will see an acquaintance.
I only buy my wine at Ridgewood Wine and Beer, on principle, because I like them. They’re nice guys, maybe misfits, who wanted to start a wine store. I know that Patrick’s dog died and that Ryan used to sell wine to Stephanie out of the trunk of his car. But, I just want wine. I wish I was more of a bitch so nobody would be a nice acquaintance. I don’t want to explain.
This is not a moment when I expected that courage would be required. I need to nut up. Monkey Girl will go to the wine store, the PTA meeting, the climbing gym, soccer practice, and the grocery store. Monkey Girl will be okay.
I go. It’s fine. They’re going to save my favorite rosé for me for when I come back in October. Rosé is delicious, but it’s been giving me a headache because my immune system is haywire. But maybe after all of this, my immune system will not think that a rosé the enemy.
I’m making every interaction exhausting because I am building it up in my head. Every person I see either knows what’s going on, or they don’t know. It doesn’t matter. What I need to understand is this: they just see me. They see Karen.
Monkey Girl is wearing a hat.
Filed under Stem cell transplant for MS | Tags: chemo, Chicago, devics, hair loss, HSCT, MS, stem cell transplant | Comments (24)What I want
This is my third day on Nuprogen, and I’m feeling fine. I tire easily. I’m taking regular Tylenol, and that’s all. We even went to the aquarium this morning, which made me wish I’d brought my kids.
I want to wrap my arms around my kids. I miss them. I want to crush Maddy and Zach with my whole body until they are exhausted from giggling and lack of air. We FaceTime every night, but I can see in their eyes that they need to be crushed. I know they’re fine with their Pop-pop. But I need to press my cheek against their cheek, press my eyeball up to their eyeball, and blink into their eyelashes.
What else do I want? I want HSCT to work. I’d be grateful to stop the progression, and over the moon if some of it reversed. Also, as long as I’m putting things out there, I want to be a best-selling middle grade novelist. A Newberry would be fantastic. I have written a book, but just before I came here, I tore it down to the studs and used it to roughly outline a five-book series. I’m tinkering with it now.
In the spring, all I wanted was for insurance to come through and pay for HSCT. It was an ever-present thought, like a cloud that followed me around. I was told that this could be a big hurdle, and until insurance said yes, we were dead in the water. It’s hard to want something that’s out of my control. To just wait. My friend, Joey, who is powerful in a lot of ways, called everyone that she could think of to say, Hey, when this comes across your desk, say yes. No control. No power. My destiny was in someone else’s hands.
In June, I still didn’t have an answer when I went climbing in Wyoming. I was stalking my email though. Gina (one of the Pixie Titans) and Krista (who was with me on Dark Shadows and is usually with me in general) wanted to take a break from climbing to go to Yellowstone for a couple of days.
They invited me, and at first I didn’t want to go. I thought it would be a shit-show. Honestly. I’d heard all about the tourists and the traffic jams and couldn’t think of anything besides Yogi Bear to associate with it. However, I like Gina and Krista, and I needed a rest day from climbing. So, shit-show, here I come.
Here’s a picture of us.
Did you know there is a 308-foot waterfall that dumps into the Grand Canyon of Yellowstone? That much water pounds in your heart. I do not have enough poetry in my soul to properly describe it. My friend Al might, because he’s a genius at poetry, but he is more prone to writing about ordinary sorrows.
A picture will never capture it, but here is a picture.
Okay. This is not even a A Reasonable Facsimile of a waterfall. There is no point in me posting a picture. You will just have to go see it for yourself. (Truly, none of my pictures come close. I’m not being mean.)
After seeing the waterfall, I check to see if I have service. Nope.
We’re driving down to the lodge when I get a few bars. I check email, and I have this from one of the transplant nurses:
“Hi Karen,
We received verbal approval.
Do you know when you would want to come and start?”
I don’t even know what to feel. This is what I’ve wanted. I should be overjoyed, but I’m not. I feel like it’s Christmas, and I wanted Cookie Monster, but instead I got Grover.
I am the luckiest person on the planet, and yet I feel sorry for myself.
I keep this information to myself for a few minutes in the backseat of the car as we pass some trumpeter swans. I have a jumble of emotions, but one stands out. I think I’m afraid.
This “yes” from insurance makes it all real. It makes it true: I am broken.
There are some people I’ve known for years and years, and they have no idea I even have MS (well, they know now). I’ve kept the truth of it far away from me, and denial is a powerful thing. Reality is crashing in.
I’ve only been pretending to be strong.
But this is what I want. This is worth a shot. Yes, I miss the kids, and, yes, the novel is briefly sidelined, and yes, I’ll make myself vulnerable. But I have the reins. I got this.
I share the news with Krista and Gina, and they are appropriately overjoyed. Their happiness is contagious, and the wad of anxiety in my stomach unravels. I’m on it. I respond to the email to set dates. I let joy creep in.
This is what I want, and I’m so lucky.
Filed under Stem cell transplant for MS | Tags: devics, Dr. Burt, HSCT, insurance approval, MS, stem cell transplant | Comments (11)
Magic
Yesterday, I spent the whole day in bed listening to a book on tape. (The Lunar Chronicles: a YA, post apocalyptic re-telling of Cinderella. Do not judge me.) Today, Heather is coming to town, and the three of us have tickets to a Cubs game. I’m supposed to be careful and avoid crowds as my immune system spirals down, but I have cleared this with the doc, and I will take hand sanitizer and medicine. I will try not to touch anything on the subway. I’ll only lick the pole once, I promise. Here’s an article if you’re worried.
Expert Claims ‘Nothing Traumatic’ Will Happen If You Lick the Subway Poles
Although I didn’t do anything yesterday, I do have something more to say about my visit with the psychologist in June. She’d asked me what the hardest thing I ever had to go through was. I told you that I immediately drew a blank. But I did, ultimately, think of something. Psychologists don’t let you off the hook that easily. I told her something about my little sister, how we are estranged, how hard it has been.
“How do you cope with that?”
“I talk to my husband.”
“How does he handle things?”
“With logic. And reality.”
“So, you’re good with reality?”
I shrugged. As long as my reality has a dose of magic in it, I’m good with it.
I went to her bathroom before I left (damn you, bladder!), and I flashed to other things that have been hard.
My mother has bone cancer and she’s doing great. It’s Atul and Reiki that have given this gift to her. She believes she’s going to live, is open to the possibilities, and a joy to be around.
But many years ago, when my mother had a triple mastectomy, her attitude was different. She had the first operation just before Memorial Day or Labor Day weekend, I can’t keep them straight. Both boobs were removed and new ones were constructed from her abdominal muscles. She was absolutely certain that she was going to die. My dad was sure she was going to live, and he kept cracking jokes about it and trying to kiss her. This didn’t help.
Over the course of the long weekend, one of the boobs started to rot. For some reason, blood wasn’t circulating. But it was a long weekend, so she would have to wait. Honestly, the whole house stank of death. My mother’s absolute certainty of her imminent demise only fanned the stench. There were a lot of tears on her part. I alternated between clenching my teeth and feeling helpless. I called my friend Amy a lot during this time, and she was funny and kind, as always.
When they took her to get a third boob (constructed from a back muscle this time), I stayed behind to scrub the death out of the house. She’d mostly been in a La-Z-Boy recliner, and I took to it with carpet cleaner and a rough sponge. I scrubbed and scrubbed, but I could not remove the wisp of death. Finally, I looked under the chair and found a dead toad. Old, petrified, and leathery.
I got a shovel, scooped it up, and flung it into the backyard. I checked under the couch. Two more toads. I found six in all, and threw them with force and anger into the yard with my Shovel of Toad Vanquishment.
Later that night, I stood at the back door. Three of the toads had gotten stuck in a tree by the crooks in their arms. I felt like I was sending a singular warning to whomever had sent the message of death. Someone thinks she’s dying here, but she’s not going to. Not on my watch. I’ve banished the toads.*
*My mother wants me to tell you that it was her cat that brought in the toads. This didn’t seem relevant to me when I wrote this yesterday, but now I’m imagining someone following me around, placing dead sparrows (Lance!) around my room in an ominous manner. So, okay, it was the cat.
Filed under Stem cell transplant for MS | Tags: Chicago, Dr. Burt, HSCT, magic, MS, stem cell transplant | Comments (14)Chemo, Round 1, Goes to…
Remember yesterday when I felt fantastic? Back when I’d crushed chemo?
Because I am such a winner, Chris and I toddled off to the Art Institute on our Divvy Bikes. He’s never been there, and it’s one of the most amazing museums in the world. And even though all the doctors say to make sure you stay ahead of the nausea and take the meds as soon as you feel it, we leave the meds behind. I’m not chemo’s bitch. Chemo is my bitch. Chemo can suck it.
Here’s a picture of me and Chris in front of the Chagall Windows.
So we’re wandering around the Impressionism section, and I’m thinking about writing. The amazing thing about all of these paintings is the voice of the painter. These paintings all took talent, skill, and practice, but the thing that got them in this museum is their unique voice. This is true of writing, too. It’s what gets a book published.
I’m somewhere near the water lilies and haystacks when a wave of nausea hits me. I tell Chris, and we realize we don’t have any medicine. “Do you want me to ride back and get it?”
No. Jesus. Don’t leave me here. If I throw up in the Monet water lilies, that Finnish couple will eviscerate me. “Let’s just sit for a minute.” So we move on, sit and feign interest in the Seurat painting, A Sunday Afternoon on the Island of La Grande Jatte. Chris is watching me.
“Do you want to leave?” Chris is here to take care of me, after all. Now’s his chance. The attention feels heavy.
“No. I just need a minute.” We sit, then proceed through the armor, the paperweights, and the miniature rooms. I’m exhausted, truly, and also astonished. Those miniature rooms…what kind of person was Mrs. Thorn to have made so many exquisite dollhouse rooms?
I press on.
I need to sit.
Chris wants to know if I need to take a taxi home or if I want to take the bikes. Because a taxi is his idea and not my idea, I choose bikes.
I’d joked with him earlier in the week about this stubbornness. Whenever he suggests something, I say no. Then I wait fifteen minutes, long enough for it to be my idea, and then say yes.
His reaction to this had been: “Do you want the D?”
I’d laughed. (If you don’t know what the “D” is: He’s a man. Think about it. All men can wait fifteen minutes for this, even with stubborn wives.)
Anyway. We bike to the hotel. And while the bike ride to the museum was a joy, the ride to the hotel is a slog.
All I do that night is lie on the bed and listen to a book on tape with my eyes closed. I can’t do anything else. I smell the chemo seeping out of my pores, warning me to pay attention.
Filed under Stem cell transplant for MS | Tags: chemo, Chicago, devics, Dr. Burt, HSCT, MS, stem cell transplant | Comments (14)Hello, Goodbye Ghost
I feel fantastic today, and it’s hard to believe I had chemo yesterday. I’m ditsier than normal, but that’s kinda fun. I bought tickets to the Art Institute of Chicago (tried to buy them with a Starbucks gift card first, but that didn’t work). Also, I told Chris that that the distance to the Art Institute was halfway to Northwestern and then that distance again. Chris said — so the exact distance to Northwestern? At first, I thought he was the one being dumb. He can’t be smarter than me all the time, after all. I’ve come to realize that the anti-nausea meds are really, really nice.
Chris and I plan to ride bikes to the Art Institute later today. He’s going to work all morning, and I am going to write a blog (ta daa) and work on my book. (I do have work I could do for work, but I have to concentrate for that, and I’m not ready to concentrate.)
But, I have even better news. My Secondary Progressive Ghost is gone. I need to backtrack a little bit for you to understand. After my second trip to Chicago, Dr. Burt’s nurse calls me to tell me that I have tested positive for the antibody for Devic’s disease. She sounds really sorry, like she is breaking terrible news.
Okay, roger that. But no big deal. I’ve had this for fourteen years, so I’m pretty sure I’m familiar with what it does. And the great good news? There is no secondary progressive form of Devic’s.
Poof! There goes my ghost.
A quick search of Wikipedia says this: Spinal cord lesions lead to varying degrees of weakness or paralysis in the legs or arms, loss of sensation (including blindness) and/or bladder and bowel dysfunction. Also, it is rare, so it is poorly funded. And, as a bonus, it’s devastating to a lot of people.
Unless you want to cry, do not search the web for people’s personal accounts of Devic’s disease. (Just read about mine.)
Then the nurse calls a few days later to say that the Mayo Clinic said my Devic’s results were negative. That first test was wrong. But, Dr. Burt still thinks that this is probably Devic’s, based on how the lesions look. He has a protocol that is specific to Devic’s. It’s just like the MS protocol, only a little more aggressive.
Just the head and the eyes of my ghost emerge from beneath the floor, as if it is asking permission to come haunt me again. Of course it can! Back at my side, my ghost and I can worry again that we don’t really know what this is. Secondary progressive, Devic’s, something as-yet unnamed. We have no idea if anything will work. It’s a smorgasbord of disease! Haunt me! (I’m pretty sure it’s my anti-nausea meds that are making me put in all these exclamation marks. Just forgive me.)
So yesterday, Dr. Burt and 4 residents are in the hall. I hear him tell them that I am a Devic’s patient. They swoop in, all smiles, to meet me, pathetic with my catheter, my IV, and my dirty nightgown. (My nightgown is dirty because the chemo is sweating out through my pores, and it stinks.) They meet Chris.
They ask me a question. “How are you feeling?”
“Fine. The catheter hurts.”
“Next time around, we’ll give you xxx or xxx for that.” Dr. Burt mentions drug names. Chris writes them down. The docs leave.
Later, his NP comes in. My ghost and I have some questions for her. “So, do you see a lot of Devic’s patients who don’t test positive for the antibody?”
“Oh yeah. All the time. About half of ‘em.” She speaks in a Midwestern accent and is a little bit adorable.
“Did you see my MRI? Does it look like Devic’s to you?”
“Oh yeah. You betcha. It’s Devic’s alright. Pretty classic with lesions all down your spine and everything.”
I don’t even see my ghost leave. Although I’m sure it won’t have trouble finding someone else to haunt. Good riddance, Mr. Meany-Pants Ghost. Chris and I are going to go ride bikes.
One last thing. All the literature I read about preparing for this experience says to keep an inspirational photo by your bedside. I choose Lance, the tree swallow with the peanut glasses.
Dark Shadows
I leave for Chicago in three days.
I like to do yoga. I can balance all day on my right foot. Tree, half moon, dancer, you name it. On my right side, I rock out with my cock out. But my left side is different. I’m wobbly. My yoga teacher, Jen, told our class once that it doesn’t matter where you are, just find your edge, and work there.
I think about this advice when I go rock climbing. My climbing friends are true badasses. When I met Gina and Tracy, the Pixie Titans, they were making 5.12s look easy, even though they are only, like, five feet tall. I figured they were way too cool to be my friends, as I was stuck on 5.10s. This was stupid, or course, and we’ve been friends for years.
(To the uninitiated, all free climbs are rated from 5.1 to 5.14. A rating of 5.1 to 5.4 is dead easy, 5.5 to 5.7 is still easy, 5.8 to 5.10 is moderate, 5.11 to 5.12 is hard, 5.13 to 5.14 is in the realm of professional climbers and a few of my friends.)
I’ve come to learn this: it doesn’t matter how hard I climb. The people I climb with are my friends, and we have fun together. As long as I can find my edge and work there, I’ll find the joy. I have to let my ego go. Some days, my edge is 5.7. Fine. I like 5.7s. They’re fun. If I don’t want my MS to stop me altogether, then I have to accept my edge for what it is.
Last year, I set up a climbing trip to Red Rocks near Vegas with the gang. I figure my edge is 5.8 trad. (Here’s a little more explaining, trad [or traditional] climbing is a type of climbing where you use ropes and gear to catch you if you fall. You place gear in the rocks as you go, clip your rope to it, and climb using the rocks. [Pulling on gear is a different kind of climbing, and is considered bad form in trad climbing.] If you fall, you will fall to your last piece of gear and then that distance again. Well, this is true if your gear is good. If your gear is bad, your piece will blow, and you will fall to your next piece. And if that piece is bad, well, you will fall a long way. I try to only set good gear, because moving off a piece you know is bad will mess with your head when you climb.)
I decide I want to do a mulit-pitch climb in Red Rocks. I need a short hike in because I don’t want my leg to go dead before I get there. I choose a 4-star 5.8 called Dark Shadows. The book says it has a casual 40-minute hike in. It’s 4 pitches: the first is 5.5 & 70 feet, the second is 5.6 & 75 feet, the third is 5.8 & 120 feet, and the fourth is 5.8 & 73 feet.
Here’s the map and the picture of the climb from the guidebook. The climb is #9. You’ll see I’ve circled something on the map. I’ll get to that later. But first, I need to pick a partner who knows about my leg, is willing and capable of bailing me out if I need it, and who will swing leads with me, which means I want her to lead the first two easy pitches, then I will lead the long third pitch, and she will lead the forth. I pick Krista. To the horror of my friends, I tear the map out of my guidebook and stick it in the pocket of my climbing pants. It’s my book. I don’t want to carry it, and I need the map.
We get up early that morning. On the drive there, I decide that the worst thing I can do is back down. If it is too hard, I should still try it and take the fall. In my mind, if I back down, then that means MS has won. I’m the winner here.
.
This is the picture of the climb in the guidebook. Looks fun.
The hike takes us two hours. The mountains are confusing, and it’s hard to find the right path. There’s a climbing party ahead of us, which is lucky because it forces us to wait while my leg recovers, and I don’t have to ask to wait, which I am bad at. My heart is in my throat, though, and I wonder why I decided that my edge is 5.8. Maybe my edge is 5.7.
When it’s our turn, Krista climbs the first two pitches in one go, and I meet her on the ledge. She gives me encouragement, but I don’t remember what she said. Something like, “You got this.” I start up the climb, place some gear, but I’m finding it really hard. What have I started?
“Is the crux at the bottom?” I ask. (The crux is the hardest part of the climb.)
Krista doesn’t know. I put in some gear and fish the map out of my pocket. The instructions for this pitch are as follows: “Climb the huge corner to a small ledge on the left. The crux is at the bottom, after which perfect holds appear whenever things start to get difficult.” That’s just the kind of magic I like. Perfect holds. I put the map back in my pocket. I’m at the crux. I figure I will do the crux, then the rest will be easy.
I fight through it, and I am golden. Also, I can sew this shit up. This giant crack eats gear, so I put in a piece about every body length. Even if I fall, I won’t fall far. I am capable and competent. I got this. I ROCK. La la la.
When I think I am almost at the top, I see the earlier party rappelling down about 50 feet away.
“Is the top just over that bulge?” I ask.
“No. You’re only about halfway there.”
Electricity shatters through me. I check out my rack of gear.
“I only have four pieces of gear left,” I say to the guy.
He looks down at my line and all the gear I’ve stuck in the crack below me. “If you’re strong enough to hang out and place all that gear, you’re strong enough to make it to the top.”
If you take another look at the map, you will see where I circled a black smudge. That’s a person-sized crack, and that’s where I was. I’m 60 feet from the anchors. Four pieces of gear.
I stuff myself into the crack so I can panic. These were my thoughts: “Fuck. Shit…..Fuck. Fuck.” I’m pretty sure that’s all I thought for quite some time.
Krista calls up to me. “Everything alright?”
“I only have four pieces of gear left.”
“Run it out, baby,” she says.
I contemplate my options…this is a nice crack. I could stay here for awhile. I think I love this crack. It’s cozy. This is a forever crack. Just me and the cliff swallows….
Another climbing party comes up behind Krista. I can’t stay here. That would be rude. I could use my last pieces to build an anchor and back down. But I already made this all big in my head about not backing down. If I back down, then MS wins. Why am I a fucktard?
I remember that I’ve already done the crux. I pull the map out of my pocket again and re-read the instructions…“perfect holds appear whenever things start to get difficult.” I’m totally on board with this kind of magic. I pull myself out from the crack. Perfect holds. Let’s go.
I make it to the top and clip into the anchors. When Krista gets there, she takes this picture of me.
This, my friends, is what joy looks like. This was my edge, and I worked it.
Later, when I am relaying this story to the Pixie Titans and Nick, who’s strong, young, fit, and looks a tiny bit like Wolverine from the X-Men, Tracy says she doesn’t know if she would have kept going.
“Helicopters. I would have waited for Helicopters,” Nick says.
Fuck you, MS. I’m the winner here.
