Tuesday, March 24, 2015

Stable Disease

It's one of those days. I can't stop smiling.
      Spring has arrived after a long, grey winter here in south Texas. It was dank, it was long, it was wet and cold.  I felt like we were living in England only without high tea or great accents.
       I've been dealing with a progression of my cancer that turned a lot of things upside down for a time. My husband's cancer also recurred for the fourth time. Between my cancer, and his cancer, we marked a permanent path down to the MD Anderson Cancer Center. We considered lobbying for frequent flyer or some other kind of "big user" award. Surprise, this went nowhere. Obviously we find our way through difficult times, by weird humor and staying focused on what needs to be accomplished. We waited for appointments, then scans, then scan results, and then a surgery date for DH.
       On my part I've learned a lot about the seasons of metastatic disease in these past four short months.
Amaryllis & orchid. Amaryllis planted 12/2014.
        When I planted this amaryllis I had just learned that the metastasis in my stomach had grown and become more aggressive, not receded via hormone therapy as was hoped. The symptoms and realities of stomach mets are not pretty. At its lowest my weight dropped to 89 pounds. Malnutrition was a valid concern. Eating anything was a challenge and the holidays and all its delicious foods were approaching. Managing nausea on a daily basis, one of the difficulties thousands of cancer patients face, was something I hoped not to have to juggle again yet I did. The motto was whatever food worked hit the "approved list." If palatable Hostess Twinkies even would have been acceptable. Oddly enough I found that potato chips or occasionally pretzels worked. I sipped ginger ale and ginger tea.
       All those things helped but two key elements were instrumental in leading to happier day I'm experiencing now. One was welcoming the opportunity to consult with a supportive care physician and the other was my own desire to participate in a clinical trial.
         The natural progression of treatment was to switch from the aromatase inhibitor letrozole to the estrogen receptor antagonist fulvestrant, or Faslodex. This comes in two hefty 250 mg injections straight into your rear end that can feel like a pack of hornets if too cold or if njected by unskilled hands. These injections are paired with #GDC-0032, an investigational P13K inhibitor developed by Genentech. Many advocates and people I respect have heard positive news about this medicine, which works by shutting down one of the key highways involved in cellular proliferation.
         The first month of the trial involved frequent appointments and blood lettings, and some start-up frustrations because I was the first and only patient on the trial. What this means is that something as simple sounding as an EKG can become a big deal because it involves a brand new protocol and by the way, who is writing the rule book? In other words, the kind of excruciating details that leads to waiting and frequent, long emotive sighs.
          But detail is the name of the game. Health tracking via the phenomenally old fashioned paper form and ink pen is a daily event. There's nothing like a clinical trial to throw a glaring spotlight on any and all dysfunctional bodily functions. What goes in and more important, in what form it comes out, are just fodder for the data accumulation that ultimately becomes known as side effects.
Clinical trial recording. 
        There are unexpected trial benefits, aside from access to what might become a very successful cancer-fighting treatment.  When you enter a trial -- at MD Anderson anyway -- you are assigned a clinical research nurse who is there for you 24/7.
With Silvia Hodge, RN.
It's like the patient navigator you always wanted, only better. She arranges all the appointments, answers questions, commiserates and if she's swearing about my constant emails underneath her breath, I don't hear it. She even laughs at my jokes. Points, points, points. What I know is that she is one of the most patient-centered individuals I've met and I'm lucky to work with her.
          The other improvement in my health came from my work with a gifted physician in the supportive/palliative care department. Often confused with hospice, supportive care does exactly that, supports the individual's experience with cancer and treatment-related side effects. It's brilliant. By working with a new medication and adjusting accordingly nausea is no longer part of my daily experience.  I'll no longer say I won't ever have it again, we are talking about cancer here after all.
         Last Wednesday at 7:30 am we started a round of testing to see how successful my current treatment is. My symptoms are better and my awesome oncologist has frequently said that she "doesn't treat a number." She puts as much stock into how I'm feeling as the raw data, tumor markers and scan results, for example. And for now I'm in a kind of a valley, a holding pattern. My disease is not actively progressing nor am I clear of disease, either.  It is best described as stable. There are areas to watch and I am content with that, watching them. Not everything in cancer has to be acted upon immediately. The trial scanning protocol is conservative and we will scan again (both MRI and CT scan) in just two months. Any bit of cancer that has ideas other than holding still will be caught and brought to justice. That's what I've learned in this season of cancer.  I'll always have cancer yet I have a team at MD Anderson that will go the distance with me. Friends have stepped forward and clearly demonstrated their love, compassion and courage. Yes, some things could be better as far as my health nows. But being here and writing and chatting with you today is simply marvelous.  It just is.

   

Make someone's day a little better, a little brighter.

6 comments:

The Accidental Amazon said...

Stable. No nausea. What splendid words. I'm so glad you are being well looked after, my friend. xoxo, Kathi

regrounding.me said...

It is WONDERFUL to have you back, Jody! Glad to hear your optimism about the new drug combo, and on behalf of ALL the patients who will benefit, thanks for being the first participant!

I have missed your voice, your wisdom and your snark - welcome home! XOX

Barbara W said...

So good to have your voice back in the conversation! And happy to hear stable...

Mandi - www.DarnGoodLemonade.com said...

I am doing my happy stable dance for you! It involves happy circles and waving my hands in the air. :)

Mandi - www.DarnGoodLemonade.com said...

I am doing my happy stable dance for you! It involves happy circles and waving my hands in the air. :)

Carolyn Frayn said...

"being here and writing and chatting with you today is simply marvelous. It just is." It was marvelous to read that, Jody.

Stable is good. Thinking of you, hoping for a ton of "stable."

Oh, and I think you and your husband should re-apply for big user rewards! xo

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