Do I feel better or are the steroids speaking?

Cycle 1 Day 8 infusion of Gemzar and Zometa, preceded by two Decadron tabs.  It was a good day – I got in right away, got a nurse with good IV technique and vein selection (1 poke), the oncology pharmacist prescribed Endocet (10mg oxycodone+325mg acetaminophen), the Tarceva Rx was entered, spoke with a couple of social workers who invited me to the support groups and said they’d put the clinical research nurse in touch with me, caught a glimpse of Dr. Jang, who was highly recommended by the regional director of clinical trial programs up north… The downside so far has been the pharmacy experience.  Endocet isn’t covered by my NorCal plan, they were out of Tarceva… wasted 2 hours there.  Lots to learn, still a decent day.

Had lunch with Tara at the Mongolian BBQ down the street.  Popped an MS contin, cranked up the heater, took a long, delicious nap!  This lovely snooze was disappointingly interrupted by violent coughing.  I awoke with the sad realization I would miss the annual Chinese New Year dinner thrown by Judge Gee in Alameda 😦

Today’s pain has been moderate, comparatively.  I noted feeling alright after infusion.  Hopefully the Zometa will lessen the bone pain.  The painkillers combined with Tarceva are beating my tummy up a bit.  To summarize, pain still not figured out but getting closer; violent, intermittent cough has returned after a two-week hiatus; wheezing and crackling at night; shortness of breath still prevalent; headaches… not sure if caused by knots in trapezoid, sleeping position, or… brain mets?  I don’t know how I feel about getting more platinum.  It’s a whammy.  If stability is all I’m getting and not shrinkage, it’s not worth the loss of quality of life.

At midnight I was visited by a mysterious burst of energy.  Dexamethasone (Decadron)?  Probably.  Or maybe I haven’t used up my 9 lives.  I’m determined to find some form of exercise I can do here that will generate/activate “natural killer cells” – an immune response which I think may have to do with my long survival.  Those activities were easy/readily accessible up north, but I’ve not found substitutes since we moved to SoCal, except the pool.  So I’ll have to work on that for the physical aspect.  For the psychological, – gone is the pretty drive up the 24, the flowering dogwoods and California oak to soothe me on chemo days.  No ocean nearby, or much of anything, except an exposed steep hill of boulders.  There are a few parks around 10 miles away for daily jaunts.  It’s a drag to have to drive that far for beauty but it’s proving critical to my survival. And, I am buoyed by seeing my stuff.  It’s a small distraction from where I am.  My friend Julie says she always thinks she’s in the Bay Area the minute she steps into my kitchen.  I’m not sure why she feels that way, but I’m cheered by the thought.  If I could plant a hundred of the trees that would create that effect, it would be a miracle.  However they couldn’t survive here (and the nursery I could get them from is in its final days of business).

Am keeping my focus on that CO-1686 trial… and aspire to straighten all the medical BS once and for all.  If that happens, I may die another day.

One thought on “Do I feel better or are the steroids speaking?

  1. Roll on the CO 1686 trial which is the same one I am waiting on. What’s the latest from your end?

    Bugger about that bloody cough though. I feel for you.

    Great that you have more of your stuff around you. And even boulders can look pretty spectacular.

    And dont you love an indulgent day nap!

    Take care, thinking of you.


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