Back on track / curb cuts

My liver enzymes went back to normal yesterday so I got chemo–we’re calling it day 1 of cycle 22 with a skipped dose on day 8 of cycle 21.  Last week was my unplanned week off of chemo–last Tuesday my enzymes were still too high for the oncologist to be comfortable, so no chemo, and instead, a visit to the liver specialist upstairs at Albany Med later in the week.

That was a reassuring consult, because my enzyme elevations were called “mild” in the liver-disease context, and the blood testing has ruled out any disease causing the elevations (hepatitis, etc.).  The fellow working with the specialist told me liver metastases don’t raise the enzyme counts (confirming something I had already heard from someone else but wasn’t sure about).  And the specialist ended up talking to my oncologist and reassuring him that I could still get chemo with mild enzyme elevations if the chemo was of benefit–it was unlikely to damage my liver.  So!  All that is good.  Even though we still don’t know what caused the late-April ALT/AST elevations–if not Sudafed plus everything else.  They even tested my Epstein-Barr Virus titer and it didn’t show anything active.  The liver specialist thinks it could have been the chemo drug itself, since that happened to 18% of takers in one trial, but on the other hand, I’m on month 16 of the same drug and it hasn’t had that effect on me.  So.  Water under the bridge–I hope so.  And if that same water cycles by again, we can desist from freaking about about it so much.  Thank you, liver specialist!

I suggested my oncologist take a deep breath and let the liver thing go now, but he said “I don’t take deep breaths.  I’m just going to worry about next week’s enzyme levels.”  Well, I’m not (much).

Meanwhile I have sent in my paperwork for disability (and eventual Medicare if I want).  That was a lot of work.  Since the DVT I have felt honestly more disabled by my situation, though it’s often disability-via-too-many-appointments rather than disability-via-physical-inability.  Though I’ve got some of that too.  I am trying to return to two walks a day, but they are shorter and leave me tired.  I’m also trying to stick to doing my 30-minute PT routine once a day, and ideally do some qi gong once a day as well.  That’s a lot!  (I do it with the help of my neighbors here at QIVC, who join in with me and encourage me and provide interesting conversation.)  And that routine is not something I’m holding myself to on days like today, post-chemo, post-bone-medicine-that-causes-flu-like-symptoms, and post-IV-vitamin-C treatment (feels like ick also).  I took the 2 shorter walks but I don’t think PT or qi gong is going to happen: I am tucked in bed with my head feeling like bleh.

Despite feeling icky today I was lucky enough to enjoy a delicious lunch at my friend Gina’s house…so lucky to have a friend who loves to cook and share!  I cannot describe how good that quiche or related eggy thing tasted…ahhhh.

So, curb cuts.  Here is how I’m living a slightly different version of life now.  When crossing the street in Chatham or Albany, I go for the curb cuts.  It now apparently matters, to an unconscious part of me that directs my feet, whether I have to pick up my leading foot that extra 4″ or so, or whether there is a nice slope for that interim step between street and sidewalk.  Conserve energy!  I guess that’s what I am doing.  I just noticed this a week or so ago.

Next week ideally will be chemo again on Tuesday, then various brain-zap set-up appointments Wednesday and Thursday.  Same for Tuesday the next week, then zapping on Wednesday the 27th.  So that’s the plan!  More later on the metastasis spreadsheet, which I actually pulled off, and shared with my oncologist and radiation oncologist.  Next: conquer the world with it (the world of radiology at least).

2 thoughts on “Back on track / curb cuts

  1. Shelly

    Glad your liver enzymes went back to normal, but I hate hearing how much this ongoing fight can wear you down on a daily basis. I never appreciated that curb cuts could be helpful to people not in wheelchairs (or on skateboards, or whatever!). Curious to hear what your docs thought of your spreadsheet–after they finished goggling over it, that is!

    • ekeyh

      I’m sure they think, What will that crazy patient think of next? 🙂

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