Immune Related Adverse Events

Marty and Eddy, savoring the disabled-accessibility of Salishan Resort Lodge

My last post on Pseudo Progression introduced “immune related adverse events” (IRAE’s). My brief experience with IRAE’s follows.

I was on a roll with nearly boundless energy. Then, beginning with a slight left-foot drag, motor-nerve impairments piled on. Within days, my left leg was paralyzed, and my left arm is so weakened that I cannot raise or use it normally.

In the interval of ten days, I have changed from feeling healthy, energetic, and optimistic to wheel-chair-bound and dependent on a caregiver for most adult tasks of daily living.

So_much_change_so_fast…

I had a conversation with my renter-model-wheelchair. I call him Mark, because he marks me with a small scrape or bruise whenever I try to rely on him for mobility. His edges are sharp, his seat is hard, and, despite being the narrowest model available, he constantly leaves me stuck between here and there, this and that furniture, or bound up in a corner.

Me—We have to talk, Mark. I am not happy in our relationship. I think you probably already know where this is going … I want a divorce.

Mark—It’s not my fault that your house is not accessible. You can’t just put me out on the street. You have no idea what happens to abandoned wheel chairs! Also, I was told you had two strong arms.  I really need to be with a two-armed person.

Me—Please be gone by next week. It’s not your fault that this house is not your kind of place (enabled for ADA) and that my two strong arms lasted only the first day. I wish you luck finding a compatible match next time around.

Here I am, persisting with my care team, balancing treatment with palliative care, and learning new coping skills with a lot of help.

I’m leaving prognostications, promises, and prognoses hanging for now. See me still here, redesigning a life tomorrow.

 

17 thoughts on “Immune Related Adverse Events”

  1. Gosh, Marty! “So_much_change_so_fast…” May the change back be as swift.
    Listen to how people describe you. *puts hands over heart* It’s very touching.
    “unflappable courage, energetic can-do self, characteristic good humor.” I am just one of many who love you and Eddy and am sending warmth, love, prayers and Blessings.
    oh, yes, one more descriptor: “precious-looking couple”

  2. I hope this is just a short blip of a visit, told with your characteristic good humor. Sending much love!

  3. I’m thinking some kind of personalized drone might come in handy….
    You can “drop by” my place anytime.

  4. Lets hope you will be “rid” of the terrible chair and will soon be back to your energetic can-do self.

  5. Dear Mark, Please get yourself well-upholstered and digitally controlled to fit any space with grace!

  6. Well, I’d tell Mark thanks for the support til now, BUT begone!!! Enjoy a permanent vacation because you Marty, will be up and around again and have no need! Pesky Marks!!

  7. Marty,
    I think you picked the perfect name for “your friend” and chair. I will have to look up the name of the lodge you were visiting in the picture. A very precious-looking couple BTW.
    Margaret

  8. Marty,
    I love the story about you and your wheelchair. It is not much fun being in a wheelchair. Hope it will be a short term wheel chair bound. Thinking of you and your family.
    Take care.
    Pat mason

  9. Marty,
    Thank you for sharing the conversation with Mark. He is not very nice.
    I am holding you in the light and am available whenever I can be of help.
    Perhaps you and Mark would permit me to take you two on a short walk.

  10. Argh!!! I wish for you both that the news could be better. But glad to see that you are weathering the storm with unflappable courage. Know of my continuing prayerful care.

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