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!

January 12, 2016

Trying even hard to hope

This morning when I opened Facebook, the first post I read was that Holley Kitchen, another one of the "Pfizer Five" (my nickname), had died during the night.

Holley had been on a clinical trial which was too strong for her, and just a few days ago her oncologist told her she could try one more chemo or live without treatment for as long as she had left. Holley leaves behind a husband and two young sons. She was in her early forties and had much more life to look forward to.

Holley was in so many ways one of the the first new advocacy voices for metastatic breast cancer. In June 2015 she posted a video on Youtube which quickly went viral. Cancer organizations and media outlets both helped spread her voice near and far. She was loud and loving, organized and challenging.

When you express your sorrow over David Bowie's death at age 69, please remember that Holley, and more than 100 Americans like her, DIE EVERY DAY from metastatic breast cancer.

This is why Pfizer's commitment to sharing the realities of mets means so much to me. Not too many others promoting living with mets and doing research. Can we have more research asap please? Where else can our tax dollars better go than into saving the lives of our citizens?

Zichrona l'vracha -- may Holley's name be a blessing to all those who knew her, even virtually.

January 08, 2016

Checking in

Just posting to say that all is mostly well here in CancerLand. I am fine, but I lost a dear friend  in December. I've got a lot to say and hope to post more in the next few days.