Invisible Tattoo
Today I am due for my second round of chemo. Feel pretty good. Didn’t want to walk carrying my bag full of urine—my horrible urine purse—so I did 40 minutes on the bike trainer, took a shower, put lotion on and let it dry, saw the docs, and am now getting more chemo. Yesterday, I got the sweats and was a little tired, but I recovered.
I want to tell you about my henna tattoo. It’s about two weeks ago, and I have Anna and Amanda’s wedding to go to. It is my plan to be gorgeous. So I call someone in Carborro for a henna tattoo, and she asks me what I want.
I say a henna crown with roses, irises, and peonies. I also need a star, a rocket ship and a bee.
Rationale for Roses:
Several years ago, my mother-in-law, Rose, passed away. It was sudden and heartbreaking. She fell down the stairs while cleaning the chandelier. I loved Rose, and I know that she loved me. I know I was like a daughter to her. So I want roses in my tattoo. I feel her ghost sometimes, watching over me and Chris. I sometimes deeply feel her approval and her love.
Peonies:
My dad’s father died in World War II. He was a member of a bomber crew, and you only had to fly 35 missions to get sent home. He died on his 32nd mission and was shot down by a German fighter. This meant my grandmother had to figure out what to do with my 4-year-old father and the rest of her life. She moved from the Staman family farm, and she took peonies with her. She married again, and planted the peonies in the back yard of her new small house; they were her pride and joy. After she passed, my sister Laura and I asked the new tenants if we could dig up some of the peonies, and I have vivid memories of the two of us weeping into the dry soil, and carrying the peonies away in trash bags with dirt on our funeral clothes.
Irises:
I didn’t know my mother’s parents very well. I knew they were kind, and that I am like Grandad, who everyone called Red. Red was a foreman at Davey Tree during the depression. They got paid on Saturdays, and by Friday, all the money was gone for the workers. He and his wife would throw pancake parties every Friday night so the crew could eat. My grandmother had a gold coin, and she wore it around her neck all through the depression, as a symbol that they were not truly poor.
My Grandad loved irises. He secretly planted irises in the fall in the middle of a marshy bog, in the middle of the woods, in the middle of nowhere. One day in the spring, he took my mother out there to see them. It was so beautiful that she cried. When she asked him why he did it in the middle of nowhere, he said, “It’s a gift, and a gift doesn’t have to be for anybody in particular. I’m glad you like it, though.”
And this is why I think I need irises, roses and peonies for my henna tattoo. I go to the little witch’s house; she is not really a witch, or course, but she could be. She lives in Carrboro, for one thing. I see a big black snake slithering up to her door. She is petite and wearing a red kimono or Indian dress or something that might be a smock. She spends a lot of time talking to me and finding out what I want. I cry a few times, and she acknowledges that it is hard to be sick. She spend two hours painting on my head.
When she is done, I feel like my ancestors are with me. I feel them surround me and protect me on my journey. I love it.
Do you see the Rocket for Zachary Rocket in the below picture?
See the Bee for Madeline Bee? The star for Chris, the rockstar?
I feel beautiful too.
But in the morning, the day of the wedding, it looks like this. Almost all of it is gone.
I am very sad about this, and this sadness is unexpected. The little witch offers to do it again for free, but I don’t want to. That was 4 hours of my life all in. I don’t ask for my money back, either, although I know I could. She spent her time on this too, and made something beautiful. Maybe the healing I got from feeling the support of my ancestors is all I needed. I need the acknowledgement that I want their help and support, that their past is entwined in my future. And I get to share the pictures and the stories with you.
I go to Anna and Amanda’s the wedding wearing a hat. The hat is too hot, and I eventually just take it off. All my climbing friends are there; Maddy, Zach and Chris are there; and we dance and dance and dance. The wedding is so full of love, Anna and Amanda could not be more adorable. Maddy says it is the best day of her life. Everyone is everyone’s. We all have each other, and the empathy we are sharing is called joy.
I did not need for the tattoo to show. It was there.
Filed under Stem cell transplant for MS | Tags: baldness, chemo, Chicago, devics, henna tattoo, stem cell transplant | Comments (14)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)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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