Picking up the narrative thread and pace as well…

On Friday, March the 15th, I was back in Boston for my biannual appointment with my ear nose throat doctor. In addition to discussing the virus I hadn’t quite shaken, I brought up the tinnitus and loss of hearing that I had been experiencing ever since the third infusion of carboplatin and alimta. I explained that the symptoms were particularly pronounced on the right side, which did not surprise the ENT, as that ear canal was completely blocked by wax. He asked if I used q-tips and I allowed that yes, I did, but carefully. As expected, I was advised to drop that practice and to simply clean my ears with a tissue (so why do they still sell the damn things?).

Anyway, he carefully scooped away the blockage and what do you know, for the first time in five weeks, I could hear out of my right ear. When I told my tale to Dr. Shaw later in the day she laughed and said she would have to start looking in people’s ears (if you recall, my final dose of carboplatin was reduced yet again due to the combination of low white blood cell count and my hearing loss).

Jemesii joined me for lunch, and afterward I zipped up to the 6th floor for a CT scan. When I finished up there, I headed over to the main hospital, as a buddy of mine had been admitted. I hung out for an hour and then I took my place in rush hour traffic.

Dr. Shaw was good enough to call that evening with the initial read on my CT scan and although nothing had improved from the last session of imaging, it also wasn’t worse. We would stay the course and move on to alimta maintenance.

L1020827Saturday was an even bigger day, as I was going to be in attendance at the annual conference for the Association of Health Care Journalists. Better yet, I would be part of a panel devoted to clinical trials: What you need to know about clinical studies but were afraid to ask. My fellow panelists were Dr. Jeffrey Drazen, editor in chief of The New England Journal of Medicine, Dr. James H. Ware, Frederick Mosteller professor of biostatistics as well as associate dean for clinical and translational science at the Harvard School of Public Health, Ron Winslow, the deputy bureau chief of health and science at The Wall Street Journal, and moderator Scott Hensley, a digital correspondant and editor at NPR.

Speaking in front of a large crowd is something that pushes me way out of my comfort zone, but when asked to do so, I don’t say no. So there you go. Fortunately, I had a few friends in the audience who were pulling for me (Anjali Thomas, John Novack, and Christopher, Melinda and Dr. Kihan Lee). It ended up being an entirely positive experience with a lot of nice feedback and support from the journalists in attendance. Should you like to read a nice write-up about the panel, check out Covering Clinical Trials:  a message for journalists and  critical readers, from Dr. Judy Stone and the Scientific American blog Molecules to Medicine.

At the conclusion of the session, my five friends and I went out for a lovely meal. I was (I know I’ve been saying this a lot lately, but it is in fact a recurring theme) utterly exhausted, but oh so happy too.

10 responses to “Picking up the narrative thread and pace as well…

  1. that was a lovely day. You didn’t mention this, so i’m going ahead. Linnea got a standing ovation from all the journalists in the room. One by one they stood up and clapped. It’s rare and heartwarming to see such emotion from media folks. we’re guilty of wearing that ‘we’ve seen it all’ chip.

  2. Kathleen Gereghty

    You are an inspiration and a Star!!!

  3. Thanks to Anjali for that detail which Linnea is to modest to include! That is really quite a scene and I wish I could have been there to see it. Glad about the reversal of your hearing loss : ) Seems like good news regarding the scan, and being able to stay the course, right?
    Giving you a standing O from here and xoxoxo

  4. Wow Linnea, what an incredible opportunity! I hope someday to be able to share my experiences with a larger crowd, too.

    And I’m completely with you re. Q-tips. I just ask my doctor, “How else would I scratch my brain?!”

    Glad to hear that things are stable. I hope maintenance goes easy on you. xo

    • Jessica, if you are willing, that opportunity will likely come….and you would be great and super articulate.

      xoLinnea

  5. HOORAY, HOORAY, HOORAY!!!! Revel in the good things. Hedy

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