Nuts and Bolts

September 10th, 2015

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.


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?


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.

photo 1 photo 2

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.

21 Responses to “Nuts and Bolts”

  1. Laurie J. Edwards on September 10, 2015 7:35 pm

    Glad you’re through with the insertions. Your healthy lifestyle (good for you for exercising while there) and your inner strength should make those blood cells multiply like crazy. The reiki will help too. Sending you love and healthy thoughts as you go through the next part of this journey.

  2. Gabrielle on September 10, 2015 8:49 pm

    Thinking of you. Do what you need to do to get through. Ask for any kind of comfort you want. Hugs.

  3. David Kwee on September 10, 2015 8:57 pm

    The plumbing is always the fun part.

    You kick ass. You kick ass. You kick ass.

    You’re sweet about your hubbie. He’s a lucky man.

    Oh, and you kick ass. You kick ass. You kick ass.

  4. Heathapatti on September 10, 2015 9:59 pm

    Ok, well you’re in it for the long haul, now k-Ron. Chugga chugga chugga chugga!

  5. Heathapatti on September 10, 2015 10:01 pm

    Oh, and we will make sure to stir up some trouble when we’re there. Crazy stunts in the halls maybe! Hi to Chris.

  6. Michelle Leonard on September 10, 2015 10:06 pm

    My mother went through a similar treatment-plasmaphersis and the same infusions, drugs– four years ago when a meany-pants autoimmune disorder tried to destroy her from the inside out. She’s fit as a slightly used fiddle now. You will be too. Keep taking good care of yourself, soak up comforts!

  7. Pat on September 10, 2015 10:28 pm

    “Say goodby to your disease.” I like that nurse very much.

  8. Michael Strane on September 11, 2015 12:37 am

    A few things. I had to get the jugular 8 times, for my heart biopsies. Look up something called a fluoroscope – they stick that in through the port for the biopsy. Anyway, I know that part sucks. Hopefully you’ll only have to do it the once. Ativan is more to keep you from going crazy while in the hospital, that nausea. I never got much relief from Zofran, my solution was to ask for more Morphine, that way I’d just sleep through it.

    Lastly, I have some moderate…serious…hell I don’t know…I’ve nerve damage in my right foot. Plus to do the transplant they cut the vagal nerve. Just to make me feel better, one doctor told me axon (main) nerves grow about 1mm/day and small nerves grow 5 mm/day. I expect to superstar like you will heal up ridiculously fast and racing your kids in cartwheel races in no time.

  9. Kim on September 11, 2015 3:40 am

    you hold steady…..let the plasma do it’s job and believe……it will happen!!!!!!!

  10. Kate on September 11, 2015 1:02 pm

    I’ve been reading along, thinking of you, wishing for all good things to come your way, hoping for nothing but sunny days ahead. I’ve wanted to comment, but I never know what the heck to say. So, just wanted to let you know I’m thinking of you often and thinking you’re incredible.

  11. Will on September 11, 2015 1:13 pm

    Why don’t they hang art on the walls of hospital rooms? I mean, why not? Is there a sanitary reason? Too hard to clean.

    In my mind, there should be world-class art in every patient’s room. Something to inspire them. There’s plenty of it stored in museums and private galleries across the country. If it’s too risky to share these with hospitals, then share close replicas.

    I mean, not everyone has the art in their head like you do, Karen. Keep letting it out!

  12. Kathryn Haddad on September 11, 2015 1:38 pm

    You are amazing, Karen. I have been sending positive mojo to you all along, and you have not been far from my thoughts.

    When they do let you loose and if you are in any way feeling up for a fantastic meal, make a stop at The Purple Pig it’s on Miracle Mile (kind of across from Dylan’s Candy Bar).

  13. Laura Staman on September 11, 2015 4:21 pm

    I sent Reiki to u this morning too and for it to arrive when Mom and Atul send it. You really soaked it in today, or I really felt it go. Either way, I am rooting for u always. I love you and you are taking every step just as you should…beautifully, with great intention and fortitude. You are Love and loved. Love, Laura

  14. Kerry Stenke on September 11, 2015 4:39 pm

    You are so strong. I’m extremely fascinated by, and hopeful for, the treatment you’re getting. Thank you for writing about it.

  15. Allison Coleman on September 11, 2015 8:51 pm

    Thank you for sharing your journey with us, Karen. That sounds like some tough stuff mixed with some very nice stuff. It’s good to have those precious, light moments sprinkled in between the painful ones. A spoon full of sugar helps the medicine go down, or so they say.

    I love the imagery of you and Chris, dirty birds, flicking ashes behind the bed…Letterman flickering in your faces.
    I can relate.
    I can also relate to the “…going to sleep, and quietly filling the bed with blood.” I think I have been there before.

    I am so happy you have a “good egg” to help you on your path to recovery. Just keep laying down the bricks. We will be here, following behind, if you should need us.

  16. Holly Mitchko on September 11, 2015 10:30 pm

    First of all, you are amazing, courageous and inspiring. You have totally got this. Thank you for sharing your journey. I love the pictures! Thinking of you and sending love and light your way. Looking forward to seeing you and catching up when you get home. Big hug!

  17. Allison Coleman on September 11, 2015 10:43 pm

    I’m with Will. Art should be everywhere, feeding the soul when it needs it most.

  18. Amy Bokser on September 12, 2015 12:25 am

    I like you.

  19. Kathryn Jacoby on September 12, 2015 9:04 am

    Karen, I look forward to seeing more pictures on Facebook of you climbing mountains, flying on zip lines and otherwise conquering the world. I also do Reiki and would be glad to do a session for you if you need one when you return home. Take care.

  20. kim on September 15, 2015 9:45 am

    karen, you are so brave and strong to go through all of this. i really hope that this makes a difference for you and that the monster is banished FOREVER! i’m not sure i’m brave enough to do what you’re doing. but i want my MS gone too. i’m praying for you every day and hope to talk to you soon about this incredible journey. love and hugs.

  21. Melanie on September 15, 2015 10:52 am

    You are so strong. And you are always beautiful for Chris.

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