Hello, Goodbye Ghost

August 5th, 2015

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.

photo (6)

16 Responses to “Hello, Goodbye Ghost”

  1. Laurie J. Edwards on August 5, 2015 12:46 pm

    Good choice of inspirational photo. :-) And way to banish those ghosts. Enjoy the trip to the Art Institute; it’s wonderful. Looking forward to seeing the writing.

  2. Liz on August 5, 2015 12:55 pm

    Great post Karen! And I adore the photograph. Keep going!

  3. Michael S on August 5, 2015 1:02 pm

    karen, may you continue to see the world through peanut-colored glasses. you remain my favorite nut.

    as everyone else already has said, thank you so much for detailing your journey for us. love to you and chris, and enjoy chicago! (and we’ve got family there, should any last-minute consultations with an emergency room doctor or professor of rhetoric come in handy.)

    and should the topic of food be appropriate again at some point, my favorite thing about o’hare is the torta cubana at the tortas frontera. just sayin’.

  4. lauraleepearson on August 5, 2015 1:31 pm

    Oh this is excellent news! Off to a good start…pedal on.

  5. Julia on August 5, 2015 1:35 pm

    I’m excited for you to be at the Art Institute. I spent a day with Danise there earlier this year and couldn’t believe how much good stuff was there. Tip – check out the little hallway of early Americana. It’s mostly really old furniture – but then there are these little portraits that are both very stoic and serious and all skewed like cartoons (big wide eyes), etc. So that the contrast is really amusing. I think you and Mr. Peanut glasses would dig it.

  6. Will on August 5, 2015 2:03 pm

    We love Lance!

  7. Will on August 5, 2015 2:05 pm

    We love Lance!!!! (extra explanation points on purpose)

  8. Anita Sawhney on August 5, 2015 2:43 pm

    Hi Karen,
    Thanks for the update. Harvest moon reference is especially clever. I was wondering if you have Devic’s, MS or both. Hugs!

  9. Mom on August 5, 2015 3:03 pm

    Great blog, Karen. Love the nutty bird. So glad you are feeling better.

  10. Christian fahlen on August 5, 2015 3:12 pm

    So great to read this update – and in the spirit of getting your minds off things for a bit, one of my favorite parts of visiting Chicago was always the architecture tours – which were really low key and informative/inspirational (you know, if you like buildings). There’s even a boat tour which is great: https://www.architecture.org/experience-caf/tours/?transportation=40

  11. Pat on August 5, 2015 10:39 pm

    Lance ain’t afraid of no ghost!

  12. Laura Staman on August 6, 2015 12:23 am

    I see you Whole and healing! Thanks for the important blog info detailing your journey. It sure seems like you are in the right place at the right time. I love you!

  13. Jenny on August 6, 2015 6:30 am

    I love Lance! I’m sending good thoughts and positive vibes your way.

  14. Dave on August 6, 2015 11:05 am

    Biking on chemo sounds like a great book to me. Hang in there.

  15. Allison on August 6, 2015 5:30 pm

    I love your little peanut bird. He looks like a good friend to have with you. :) Glad to hear you will be working on your book too!

  16. Melanie on August 12, 2015 5:54 pm

    I just saw this post – does this mean they think you have Devic’s and not MS?

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