The Waiting Game

[BY SUSAN]

I don’t know what to compare this to.  Certainly not something exciting like a birthday or Christmas.  Not anything ominous, like a hurricane, though one seems to be brewing on the other side of this ocean of expectancy.

What we’re waiting for is Peter to feel better.  We’re waiting for energy and appetite to return.  Since his diagnosis in November, this life of illness and treatment has become the “new normal,” and we want the old normal back.

All through the chemotherapy there were some really good days here and there (plus a couple of neutral ones and a couple that were pretty bad each week).  With chemo ending on January 19^th , I think we expected an upward trajectory.   Maybe we weren’t listening the day when they told us that “radiation effects are cumulative.”

 Peter’s last really good days were January 28^th and 29^th, when his band, Red’s Rhythm, played at the Depot in Hillsborough (see previous blog).  He hadn’t felt well prior to the 28^th, but the high energy of that night continued right through Sunday for Peter, such that he even went out and split some wood.

Then things declined.  The last day of radiation was Tuesday, the 31^st, and Peter was too sick for either of us to feel like celebrating.   Today marks the two-week post-treatment date, and every day had been pretty much like another, with no appetite, little energy, weight loss, and a few meals each week that refuse to stay where they belong.  Peter had a cold at the end of January and the cough and runny nose are hanging on.  Still, the doctors tell us this is all “as expected.” 

I think it is more like the diagnosis our dog, Buddy, got at the vet’s.  I saw “ADR” written on his chart and asked what that meant.  “Ain’t Doing Right,” was Dr. Bianco’s reply.  These days Peter is ADR.

Still, Peter’s mood has been mostly positive.  He’s had a lot of visitors, and really enjoys those.  He continues to orchestrate music events, and looks forward to those coming to fruition (Green River Band reunion gig here at the house March 10^th).  Our friend Joe Coates has been a constant support, and he and Peter urge each other to exercise when neither really feels like it.  Joe came over and cut a tree for Peter this week.

On the occasional day when Peter feels a little better we assume that THIS is the beginning of the improvement, and we latch onto that hope.  In this period between treatment and surgery he is supposed to return to some robustness, gain weight, and be in the best possible shape he can be in for surgery.  Two weeks have gone by and we haven’t set foot on that path yet. 

But yesterday held a spark of hope.  Peter went swimming at the Sportsplex, had a band practice, ate three meals, took a long walk in the woods with his dogs, split a few logs (!) and it is nearing 9 p.m. and he’s still up and moving and downright perky.  We will see what tomorrow will bring. 

People ask me how I am doing and I never know quite what to say.  I say fine and most days I am fine, just putting one foot in front of the other to get things done so I can take off of work for the surgery.  Most days I plod along and this new normal is simply what is.  I am eating really well and riding my horse, doing some yoga, and most nights I sleep pretty well.

But Friday things caught up with me for some reason.  Trying to help Peter to eat (and drink and take his meds) gets really frustrating for both of us.  Nothing was particularly worse on Friday, but I woke up teary and stayed that way all day.  One of the priests at work (Tammy) asked me how I was and saw my tears well up, which I’ve always found embarrassing for some reason.  I seem to remember some early 60’s song that declared, “Big girls, they don’t cry-y-y,” that my family sang, so maybe I took it to heart. (Peter just informed me that this is one of the first records he ever bought…and corrected the decade I’d put it in).

So it seems that some days the immensity of Peter’s illness breaks through and catches me off guard.  Most days I keep busy and some days are really joyful, as when we were interviewing for new interns last week.  But the looming surgery is such a big unknown, and I haven’t tackled it the way I tackle most things…by finding out everything I can about it.  In this case, knowing seems scarier than not-knowing.

I realize that this disease is giving me some real opportunities to learn about myself, for Peter and me to learn more about each other, and for us both to see immense the web of support that we have.   

Each one of you gives me that support when you ask, “How ARE you.”  Some days I’ll give you my elevator-speech answer and that is the best I can do at the time.  Some days I’ll just start talking, and what I say will help me figure out the answer to that question, because I really don’t know.