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)Home and Hair
On Friday, after we boarded the plane that would take us from Chicago to Raleigh at 9:45 p.m., some weather rolled in, and we didn’t take off. Instead, we sat on the tarmac for 3 hours. I was uncomfortable and exhausted, and all I wanted to do was go home. I reckon everyone else on the plane felt the same way. They gave us clearance to for lift-off a little after midnight, but we needed more gas, and ugh. We touched down at RDU at 3:15 a.m., and Chris and I got home at 4:00 a.m.
I felt bad for Chris when he got up at 8:00 a.m. He had 11 hours of driving ahead of him to pick up the kids, but would not let come along to keep him company. I’m was glad for that, because I was really tired. (And I got to go to brunch and get my nails done with the Evil Girls.)
The kids arrived home at 9:00 p.m. last night.
I’m not gonna lie. Some serious snuggling went down. Zach always asks questions, and last night, this was one of his questions: “I know how to turn mechanical energy into electricity, but how do you turn electricity back into mechanical energy?”
I tell him that I don’t know, but that we can figure it out together in the morning. It’s 11 o’clock at night. He says: “That’s okay. It’s a question for Dad anyway.” I rub his head for a few minutes and he asks. “How much matter do you think electricity has?” This tells me he is still thinking about his first question in ways that I will never understand. He doesn’t give me a chance to answer before he says, “Isn’t Botch so cute?” Botch is his teddy bear. He hugs his bear, and I hug him. Marvelous boy.
Maddy just wants me to rub her back and promise me that we will both sign up for an aerial silks class later in the fall. This is our way of running away and joining the circus, and I’m all in. I’ll go anywhere with her. Marvelous girl.
My hair is supposed to fall out tomorrow, so today we’re playing with it.
I let Maddy cut it first.
When she is finished, she says, “Hey, I never said I was a professional stylist. I’m more like that duck, you know, good at other things.”
When we were in Chicago, I’d seen this punk kid with the sides of his hair shaved and a pony tail on top, and I really liked the look of it. Chris did too, so he tries to replicate that. Zach doesn’t want to cut my hair, but he takes pictures.
I gotta say, I LOVE this haircut. It might be the haircut of my dreams. When this is over, I might do it again. You know, just for fun. I’m my dream girl.
Harvest Day
Today is the day of the harvest. I need to get labs drawn, a central line placed (a catheter in the jugular vein), harvest the cells for 4-6 hours, wait for 2 hours for them to count them (I need 2 million), and then they will either take out the central line or send me to the hotel with it. I might have to go back to Northwestern tomorrow.
For the central line, the nurse asks me to look left, and he preps an area on my right neck by cleaning it and lining it with pads. A Fellow—I’m pretty sure he’s only 12—starts placing it, explaining as he goes. Then there is moment of strange silence, some hustling, and hurried, rough wiping.
“It’s because she’s skinny,” the Fellow says.
I watch the X-ray of my chest as the thin worm of the catheter grows out of it. It reminds me of the sea eels that we saw at the aquarium.
Here is a picture of a sea eel.
Adorable, right?
On my way out the door, a nurse is throwing away a big pile of bloodied bandages. That looks like too much blood, but who cares? Someone called me skinny.
Next I sit in a chair for 5.5 hours with blood circulating out of me, into a machine, and back to me. I was worried about being in a chair for that long because I would have to pee, but the bedpan is easy to use. She just sticks it on a chair. Who knew? I don’t know why I imagined that she would put it on the floor.
At the end of the day, a man in a green lab coat gets the cells, and I ask the nurse if he is trustworthy. I’ve been through a lot to get these cells, and something about the green coat makes me wonder if he moonlights as a leprechaun.* The nurse laughs. We wait for two more hours while they count.
The number is in: I gave them 9.6 million. Boom.
I fish for a compliment from the nurse and say, “Is it the really fit people who give you such high numbers of cells?”
She’s a nurse, so she sees right through me. She says no, it just depends. When she leaves, Chris says that I am superior at making stem cells. I love that man.
On the way home, I ask the cabbie to stop so I can throw up. When he doesn’t stop, I just open the door and start to lean out. He stops, and I throw up in someone’s begonias.
It’s been a long day. But now I’m done, and I can go home. We’ll be home at around midnight tomorrow.
*Chris wants you to know that he was too tall to be a leprechaun. He was 6 foot 3 inches.
Filed under Stem cell transplant for MS | Tags: Chicago, devics, Dr. Burt, harvest, HSCT | Comments (21)Plan Bot. Activated.
[Warning, this post was written under the influence of hydrocodone and champagne.]
I had a headache yesterday, my side hurt, and blech. I started running a low-grade fever. If it gets to 100.4, then I’m supposed to page the doc and maybe go to the emergency room. The highest it got was 99.6. Phew. Last night, I took a hydrocodone, and it made everything stop hurting. La! Who knew? Then I had a glass of wine, and another, and then a Xanax. Totally legitimate—right?—and fun. I’m my own damn party.
I spent the evening back-talking the news anchors while Chris played Sudoku and occasionally patted my leg when I said something stupid. And now, my back is killing me and my hips ache. These are good signs—and boom—I just took another hydrocodone. Suck it, bone pain. I’m having champagne and popcorn for dinner.
Tomorrow (Thursday), I have my stem cells harvested. The harvesting procedure will take 4 to 6 hours. They will place a central line in my neck, and then I will go to the blood lab and sit in a chair. They will hook a 3- (or 4-?) pronged tube to my central line. My blood will flow into a machine where it will be centrifuged, and the stem cells will fall to the bottom (because they are heavy). They will be harvested, and then my blood will flow back into me though a different line, minus the stem cells and some plasma. Science is the BEST.
Once the process starts, I am not allowed to move from the chair. If you’ve been following along, then you know there is an issue with pee. Answer: Bedpan. I’m pondering the best possible outfit for a bedpan. Gucci? Hermes?
If they get enough cells on Thursday, I will be released into the wild. If they don’t, I will have to return to Northwestern on Friday for a repeat of the procedure.
Here are some details: My worst-case scenario flight home arrives Friday, August 14 at around midnight. If I have enough cells on Thursday, I could be home as early as Friday afternoon, and I’m trying not to obsess about this possibility.
On Saturday, Chris will drive halfway to Pennsylvania to bring our kids home to me.
I’ll be home for three weeks, then I return September 7 for three weeks in the bubble, which is actually just a hospital room, and it isn’t even round.* This visit was only two weeks and it was actually, mostly, a lot of fun. Only one day of chemo, and only a few days of feeling too crappy to leave the bed. But September. Well, it’s 4 days of chemo in a row (cyclophosphamide mensa) with antithymocyte globulin (ATG), a day of rest, and then on September 15, I get my stem cells back. I’ll be in the hospital room the entire time. To even walk the halls of the unit, I have to wear a mask and gloves. They will release me when I have enough of an immune system. With any luck, that’ll be before Maddy’s 12th birthday on September 28.
When Chris brings the kids to me on Saturday, I’m going to swallow them whole, and they’ll never be seen again because I will have eaten them alive. (Actually, I think we’ll just go to Baja Burrito. But some snuggling is going to happen, for sure. I also think I’ll let them give me haircuts: the hair is slated to fall out on Saturday or Sunday anyway. Maddy said that she’s going to give me a mullet. Zach thinks Mohawk, so Maddy goes first.)
I just went in to tell Chris—hey, this Sunday, let’s have all of Maddy’s friends over. I’ll bake them a cake! (That last bit was the hydrocodone talking. I don’t normally bake cakes.) Chris was on a conference call, so he just frowned at me. Maddy’s been so sad—she’s scared—and I think what she needs is a big dose of her wild friends. Zach too. I think I need a dose of my wild friends, too. You’ll be hearing from me soon.
*Chris wants you to know that, technically, a bubble is spherical, not round.**
**He wants you to know that, it’s not that it’s not round, it’s just that spherical is a more precise definition.***
***He’s going to stop talking to me until I hit the publish button.
Filed under Stem cell transplant for MS | Comments (12)Three Clowns in Brown Town
I’m was feeling fine until 3:00, then I started to have aches and pains, as predicted. Last night, I suggested to Maddy that she and I train for a 5K together after all of this is over, and I finally got a genuine smile out of her. I hate running.
A couple of years ago, I went to a GI doc; she was a lot like Chris Rock, so just imagine him. Chris Rock gave me 5 days of pills to take with little rubber bands that glow in an X-ray. On day six, we did the X-ray to see how many were still there. All of them. “Damn girl, your bowels don’t even move. I don’t even know if I can call that sluggish. It’s supposed to be a bowel movement. HA!” He gives me all kinds of prescriptions to try, even ones that aren’t FDA approved that I have to get from a pharmacy in England. (Here is where I’d like to get on a soapbox—if we had a database of people with bowel trouble and MS, Chris Rock could have found out what might work without actually having to experiment on me with unapproved drugs.)
Chris Rock sends me to a physical therapist. Imagine Natasha Fatale from Rocky and Bullwinkle, only she’s not evil, just beautiful and better than me. I don’t want to say anything about this experience except this: if any of you complain about a prostrate exam, and I accidentally punch you in the face, just forgive me. After 8 weeks of mortifying “therapy,” I’m sent packing with a fat “F.”
I go to a hippie for a colonic. After a poop-nado down her hallway and all over her bathroom, she suggests that I try an all-liquid diet. “Miso soup is really good for you.”
I return to Chris Rock. “The only thing I can think to do now is remove your large intestine, and sew your small intestine to your sphincter.” I swear to God, those were his exact words.
Removing an organ seems drastic to me. “You know, the senna laxative works. I just don’t want to take it all the time because the bottle says you can become dependent on it.”
Chris Rock deadpans to an off-stage camera, then turns to me. “Honey, that ship has sailed. HA!” He shakes his head at how amusing this whole situation is. “Take it every day—go ahead—and come back if you want to discuss surgery.”
I will not discuss surgery with Chris Rock. I don’t want the medical profession to be run by comedians or cartoons. I don’t understand why all my data gets flushed down the toilet for the sake of my privacy. I want people to ask questions of the data, use the data, so the next time someone with my problem goes to see anyone, they won’t get experimented on all over again.
Now. Let’s never speak of this again.
P.S. That children’s book, Everyone Poops, is a real tearjerker for me.
Filed under Stem cell transplant for MS | Comments (14)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)
Slow Orbits
I took my first two doses of the Nuprogen this morning. This medicine is supposed to make my bones ache, give me flu-like symptoms, and mobilize the stem cells from my bones. They’ve given me a handful of hydrocodone for the pain, if it gets to that. So far so good, though, and Chris and I are considering going to the Ghirardelli store later today for hot fudge sundaes. I also think I need a cozy sweatshirt thing.
Yesterday, Heather Patti, Chris, and I went to a Cubs game. I’m supposed to avoid crowds, though, and I’d only considered the crowd at the game, which seemed manageable. It doesn’t take a genius to predict that the metro to Wrigley Field will be crowded 30 minutes before a game, but, apparently, we are not geniuses. I was unprepared for the crush of humanity on the Red Line. Chris wanted me to hold onto him, not the pole. I think if he could have sliced himself open and shoved me inside, Tauntaun style, he would have.
Here is a picture of us at the game. So much fun. And the hot dogs were to die for.
Heather Patti says that she wishes Chris could reproduce asexually, maybe grow a nodule or two off his arm. I imagine Heather collecting and nurturing the nodules, and then releasing a pod of good men into the world.
Chris is being careful with me. I fell on the way to the hospital that first day; an uneven bit of cement met my treacherous left leg, and my coffee and I splashed all over the sidewalk. I believe it startled Chris, and now he stands behind me on the escalators, reaches for my hand on the stairs, and orbits me to block potential threats. He says he’s doing his job. This caretaking would be oppressive if I didn’t feel so vulnerable. I’m going to allow it. For now.
Others have been watching out for me too. I went climbing in Ten Sleep, Wyoming two weeks before coming here. I didn’t know if insurance was going to cover HSCT, so even though we had tentative dates scheduled for the procedure, everything was still up in the air. Seemed like I might as well lead my life.
Ten Sleep has sport climbing and cows. Here are some of the cows.
It’s a steep hike up a narrow trail to the crag, and I try not to think about how much it would hurt to roll down the mountain. I have my trekking poles, of course, but still.
We’re going sport climbing, which means that there are bolts on the cliff. The first person in a group of climbers hangs “draws,” which have two carabineers connected with webbing. Here’s a picture.
This person, let’s call her Stephanie, clips one carabineer to the bolt and the other carabineer to her rope. Stephanie “puts the climb up.” A belayer, let’s call him Scott, stands at the bottom and lets out rope as Stephanie climbs. If Stephanie falls, she will fall the distance she is from the bolt and that distance again. Scott will catch her because the rope will cinch on his belay device. Usually, in our crew, after one person puts up a climb, we pull the rope, and the next person leads it too, only now, the draws are up. There is also the option to leave the rope up (top-rope), and this is what I’m planning to do. I’m going to love myself for where I am, put no pressure on myself to lead anything, and just be happy.
That first day, Stephanie puts up a 5.10a and says she thinks I would like it. A 5.10a is the top of my pay grade.
“You should lead it,” Stephanie says. “It’s soft.” (Soft means that it’s easy for the grade.)
I turn to Jeff, who’s my belayer at the moment. “I’m just going to go clip the first draw and decide if I want to go on from there.”
Jeff shrugs.
“I can back off at any time.” This is something that I need to tell myself, not Jeff, and he shrugs again.
I tie into the rope.
I get to the first bolt, decide to go to the second, and so on. The climb is slightly overhung, so any fall will just be a fall into air. It won’t hurt. Here are some pictures of me on the climb.
I hang at the crux (the hardest part), which is a small overhang. Stephanie calls up, “There are jugs up there.”
I give it a go, and sure enough, there are some big hand holds over the lip of the overhang.
I get to the top, but I can’t get the rope into the top two draws (we call these top draws the shuts.) I pull rope up, touch the draw with it, and drop the rope again. There is 60 feet of rope below me, and it’s heavy. The problem is, I’m a little freaked, so instead of using the good clipping holds above the shuts, I’m trying to clip them from the shitty holds below the shuts.
I pull the rope up again, stick my whole hand through the carabineer, but somehow fail to make the clip.
Dammit.
I pull the rope up again, and it seems to have gotten heavier. I fail again, and stick the rope in my teeth. (This is stupid, and I know it. If I fall with the rope in my teeth, it will rip them out.) I drop the rope again.
“What’re you doin’?” Jeff calls.
“I think. I might. Be falling.”
“I got you.”
I adjust my grip, and that’s it. I fall. It’s a nice easy fall, though, and I’m happy. I love it when I try so hard I fall.
“You want to give it another go?” Jeff asks.
“I’m done.”
Jeff lowers me. “Not to pick on you or nothin’, but you could work on your clipping.”
I laugh.
Here is a picture of Jeff.
We climb all day, although that’s the last thing I lead because my leg has gone weak. At the end of the day, Skinny and Elsa wander over to where I’m sitting, and we watch some of our friends try something tricky.
“We thought we’d walk you down,” Skinny says.
I want to object, because I don’t need anyone to walk me down. But they love me. I know this. This is their way of watching out for me, like Chris. Here is a picture of Skinny and Elsa on the way down, and below that is a picture of all of us at dinner that night.
I am receiving a slow and steady orbit from all my friends. For example, you’re reading this now, and I know you’ve got me. I’m grateful, and I’ll allow it. For now.
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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.
