January 29, 2016

Inpatient and out (or there and back again, with apologies to Tolkien)

Big news  -- I spent much of the past two weeks inpatient at Swedish Medical Center. I had been complaining of mouth pain from my ONJ spot and then I twisted my back and was really in terrible pain. Rik got me to the ER just in time for a major crash on my part. I was admitted immediately, sent up to the 8th floor (close to ICU, 1:1 nursing) and then was moved up to 12 East, the oncology unit.

I experienced my own "perfect storm:" over-dosing / self-medicating for pain; residual issues from last November's radiation treatments, including gamma knife for the brain mets; pneumonia left from last October's admission; even the most recent chemo plus all my medications.

While I was on Planet Jill, my own private universe, there were days when I couldn't say more to Rik than yes, no and help. It was so frightening for him after 13+ years of relatively good living with mets to have more than one mental issue to deal with and to have to manage everything about my care. Thankfully we had already had a health care / end of life discussion many times and he knew what I wanted. And that Dr G always said he'd be totally honest with Rik. So when asked if this was it, Dr G said, maybe not today but could be soon.

And then my friends D and C walked me around the halls and we sang. They managed to reach me in å way no one else could, with music and other languages, not English and conversation. Other dear friends were able to draw me out as well.

By the 10th night I was almost fully recovered. I finally understood why I was a fall risk; why the bed was alarmed (the chair had been too); how to sleep even with all the light (I hadn't slept more than four nights total). I made a deal with this night nurse to really ring and wait if I had to get up to use the toilet. She in †urn explained all this over and over again until I really got it. The next day I went home.

This private trip to my own universe was frightening. I've never been happiest alone in my head. I've always been an extravert, getting my energy from other people. I knew I was not connected to the rest of the world, but I didn't know how to re-connect. And so I suffered and think I was an obnoxious patient, insisting that I didn't need the level of supervision they gave me. I was wrong, of course, but I didn't know that. And so the positive experience other cancer friends have had on 12 East passed me by. I was miserable, sick, out of my head and unable to express myself.

Eventually NP Joanna diagnosed the troubles, pulled all my medications, and added back each, one at a time. I couldn't even express that I still had pain in my mouth and feet. She had pulled the gabapentin for my neuropathy and concentrated on the other issues. She ordered many tests, including CTs, MRIs and even a bronchoscopy to determine the extent of my pneumonia. When I couldn't sign my name to the release form, but could remember to tell the anesthesiologist about the ONJ spot in my mouth plus the loose tooth, things began to come to together for me. And that was my last night in the hospital.

So I want to apologize to the wonderful nursing staff on 12 East for being such an obstreperous patient. And I want to praise three women in particular -- NP Joanna, traveling nurse Kristina, and a wonderful Filipina NAC whose name I could never even pronounce, much less remember. Joanna saved my life, plain and simple. Kristina reached me most effectively as a person and handled my discharge swiftly and easily. And my precious Filipina NAC helped me shower, helped me with joy, and helped me relax and be okay with depending on others.

I am so glad to be home and able to get to the bathroom without having to ask and wait for help!


  1. How scary! So glad to read that you're doing better! I check in daily...okay, multiple times a day to see if there's been an update.

  2. Wow...so glad you are home and doing better. Please know that I'm thinking of you and hoping you are feeling like yourself again soon.

  3. Anonymous3:52 PM

    I'm so glad your problem with over-medication has been realized. I've seen it before with my parents and my grandmother. Amazing how people bounce back once all those drugs are pulled. It's like pushing Reset, isn't it?

  4. Anonymous10:12 PM

    Medications.... if they don't help you, they kill you. I'm in the same boat but for different illness. Hope you're on the right road now, with your meds.

  5. Welcome back home! <3

    Sera got put on gabapentin before her surgery *before* they had to reschedule for an emergency. I wasn't ready for how out of it she was. After 16 hours of fasting for the surgery, I took her to 5 Spot, and by the time we left, I had to hold on to her jacket to keep her from walking off the steep drop next to the sidewalk. She was... uh, let's just say very conscious stream. ;)

    Is it something you often take for the neuropathy?

  6. Glad you are back home. It sounds like a dark and difficult time. Good to have the meds sorted out! Be well,

  7. Welcome back home to the land of chocolate and desserts. I have been thinking about you daily especially since we last saw you for shabbat. It is good to hear about your experience. Thank you for sharing. Love Nancy

  8. Oh, Jill, what a terrifying experience. I'm so very glad you're back home now! Thank you for taking the time to write of all this.

    Lots of love to both you and Rik (and the pooches),
    - Sandra
    (hoping finally to visit you sometime before long...need to recover from a slight cold first)

  9. Anonymous5:54 PM

    So glad you're better, Jill! We think of you and Rik often. This is an amazing blog and I greatly admire your truth-telling and your ability to keep singing through all that life gives you. Teresa and Mark

  10. Dearest Jill,
    First thing I did upon my return from 9 days dog-sitting on Camano was to check this blog. Wow! You have been through the wringer and landed on your feet like a cat, not even a flat cat! I would expect nothing else from you, however.
    Every day, week, month, and year we still have you on the planet is joy for me personally. I am however aware that quality of life needs to be such that you can still access your innate joy!
    i join the network of friends and family who are grateful and relieved that you came out of this nightmare on the other side with your wits about you.
    The girls all inquire about you ongoingly and send love and prayers to you both. I add smooches to the pooches.
    L &L

  11. So glad you are home! That is the worst part of the hospital for me, anything regarding bathroom and needing help. *sigh* I was so worried about you. <3