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)
E.vil Girl Action
I am neutropenic. No white blood cells and no immunity. Yesterday they gave me Rituxan (to kill the B cells cells that make antibodies) and IV steroids. The steroids make me agitated and unable to sleep. I’m hoping to get some rest tonight, although I had to take Prednisone today (to step down from the IV steroids.) There are also antifungals, antivirals, antibiotics, etc on board. Soon there will be sleeping pills. But I feel okay. I ate a burger, walked thirteen laps of the ward, and took a two-hour nap. Purty good day.
I’ve been making Chris bring me coffee every morning, although I haven’t tasted it yet. It just visits until Chris deems it too old to drink.
Tomorrow Chris is going to fly home and see the kids, get some stuff done, and open some mail (maybe – he’s bad at mail). He’ll be back on Sunday. Some representatives of my gang of evil girlfriends are coming to hold down the fort for him (Melanie, Heather P, Jill, and Scott). We’ve been taking vacations together for about 10 years. I’m not sure when we decided that we were E.Vil, but it suits us. Dr. Burt even granted me permission to have a sip of champagne.
Chris spent about 3 hours writing up instructions for them. My husband—he doesn’t usually shower every day, he likes unruly beards, he’s a slob (like me)—he is advising the council of E.Vil on cleanliness.
The below was in his 4-paged single-spaced document. (One of the pages included a map of the ward.)
“Keep yourself healthy (you guys are smarties and probably don’t need to be told this, but Ima tell you anyway):
- Wash your hands when your mama told you (after peeing, pooping; before eating)
- Keep your hands away from your face, hair
- Bring some hand lotion, you’re going to be washing your hands a lot
- Keep the hotel, hospital tidy
- Shower daily, preferably prior to visit
- If you feel yourself getting sick, do not go to the hospital
Keep the girl healthy:
- Do not touch the girl
- Do not kiss the girl (I’m looking at you HP)
- Do not sneeze on the girl
- Wash your hands before handling her stuff or handing her anything
- She hates the smell of the hospital hand-sanitizer, use soap instead
- There is a container of sanitary (clorox-ish) wipes on the table, if you bring her something from the outside world that’s wipe-able (stuff in bottles, condiments, books) wipe it down when you bring it in. Doesn’t hurt to wipe her table and stuff down once or twice a day.
- If she leaves the room, make sure she wears her mask, gloves and gown.
- Do not use her bathroom. Use the ones just outside the 16th floor airlock.”
The note goes on with instructions about how to get to places, food I might like to eat. I am so lucky and grateful.
Regarding the kissing: Sometimes HP says hello with a quick kiss full on the lips. It’s just her way.
In response to Chris’s email, HP wrote me: I’ma kiss you anyway. Just kidding – I’ll kiss Mel.
To which Mel said: FINALLY
I hope they wait until they get to my room.
Filed under Stem cell transplant for MS | Tags: Chicago, stem cell transplant | Comments (12)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)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)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.
