Four Years

September 11, 4 years ago I was sitting at the U clinic on Redwood drinking the radioactive smoothie for my first CT scan.  September 12th I got a call from Dr. Prystas, giving me the results of the CT scan.  There were tumors in my liver and lymph system, "too many to count," she said.  I took the news stoically, but as soon as I hung up I sobbed my heart out.  I pulled into a parking lot near At Home (the store) because that was the closest place I could go to stop the car and park for a few minutes.  

A few days later I pulled into that same parking lot after I drove off with Costcos gas pump still running and in my tank.  Just so you know, they have a work around for people like me.  I watched from my rear view mirror as the hose bungeed back to the pump!  I calmed down so I could drive, but cried my eyes out until I was about 3 blocks from home, then started laughing hysterically when I thought about what the guy behind me must have thought!  I laughed at myself anytime I thought of it or told the story to someone.  (I'll find the date I posted about that and list it here later.)

So much has happened since then.  I could write a book about how terminal illness changes your perspective, your focus, your conversations, your priorities.  I've had to adjust to a "new normal."  I've shed buckets of tears as I mourn the thought of missing the kids marriages, not meeting their spouses or our grandkids, I mourn missing graduations and other things that would be important to Mat and our kids--especially just not being here.  Who will fill in the void for them?  I mourn for Mat so much.  His tears are just under the surface.  He's not the guy that gets emotional very often, he's dealing with his own set of traumas.

For the majority of this journey so far, I didn't think much about actually dying.  I knew I would/will, but I didn't focus too much on it.  We started talking about "hard things" intermittently and have taken care of the cemetery plots and the mortuary stuff.  We've talked about life insurance money and funerals  (I'm not having one ...  more later!)

(It's Friday now) I was at Huntsman all day today.  I met with Dr. Buys who told me that Kadcyla can offer, on average, 9 months before there's more progression.  I think that was the most depressing thing I've ever heard.  She always assures me there are "lots" of options for my cancer. But I want a drug that will give me an average over 9 months!  My heart breaks for me and others in my same boat.  This is NOT a fun way to live.  My head slips into the depths with ease. I'm afraid keeping me alive will consume much more time and energy than I needed up to this point.  Don't take that the wrong way.  I'm SO GRATEFUL for Huntsman and the resources they have there for us. But it's exhausting, friends.  I've never done anything harder in my life than this.  I told Annie when I saw her last week that I love the people at Huntsman, but I hate that it's my home away from home.

I started Kadcyla today.  The first time you get it, they do the infusion slowly over 90 minutes.  When that's done, you have to stay there for 90 more minutes so they can make sure you don't have a reaction.  My next infusions will be 30 minutes with 30 minutes observation. The side effects are very similar to the Herceptin I've been doing, but need to watch out for peripheral neuropathy ...  and fatigue, nausea, liver problems, constipation, headache, low platelet count, bleeding, pain that involves bones and muscles and tendons, it all sounds like a party!  😜🥳

I listened to this book last week and LOVED IT!  While Edith Eger survived her imprisonment at Auschwitz, all through her life she was figuring out how to make a choice to live from day to day.  She became a psychiatrist and helped many people and families work through trauma and make the choice to thrive instead of just survive.  I want to remember her story when mine feels impossible.