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)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)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)
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.
