April 20, 2010 – Radiation 5 [30 to go] & swallowing PT

My plans for yesterday changed the moment I laid down on the sofa and Rudy Dog snuggled up on my arm.  I was out until after 5:30 pm!  The busy day topped by chemo won out, well sort of.  Before I was hooked up to the IV, the infusion nurse handed me a cup full of pills including a few mega-steroid greenies.  I was worn out in the afternoon, but wide-awake most of the night.  I took a couple Diazepam, but they were no match for the greenies.  I’ve been up and active all of today, no nap, and still have that wide-awake feeling even with fatigue creeping in.  I wonder how sleeping will go (or not) tonight.  Stay tuned!

Ann drove into Boston this morning and chose our usual route.  Renee advised us that Route 9, on a normal day with schools open and everyone working, is gridlock.  Traffic on the Mass Pike was heavy but steady.  We left Worcester at 6:35 am and arrived at Dana Farber around 7:40 am.  I was the first patient to arrive at nuclear medicine (which technically opens at 8:00 am), and the Novalis Tx staff took me right away.  Today, I needed no adjustments to my position on the table, and Little Bang was done before 8:00 am.  Today’s playlist was the opening two tracks from The Grateful Dead’s Road Trips Vol. 3 No.2 – Municipal Auditorium, Austin TX, 11/15/1971: “Truckin’” and “Bertha”.  I was hoping to take a meshface photo today, but the mirrors in the changing rooms were removed and replaced by exquisite artwork.  (Dana Farber feels like an art museum.  Diverse framed media donated by grateful families covers every corridor, except for the spots reserved for Red Sox memorabilia.)  So, I’ll have to figure another angle on catching the mesh in action.  Tomorrow, I’m bringing my D70 rig in to shoot some quick photos of the Novalis Tx.  The online photos just don’t it justice.

We were done early and took the elevator to the 11th floor to the Head & Neck Oncology Department.  An appointment with the Speech & Swallow Therapist was scheduled for 10:30 am.  Dana Farber is not your conventional hospital.  Perhaps the difference lies in its major research focus.  The appointment desk at Head & Neck texted the therapist and she responded that she could see us at 9:00 am.  Amazing.

The Speech & Swallow Therapist, as have other staff specialists, outlined the treatment plan for the duration of my radiation and the period of recovery that follows.  She urged us to focus on today and not get ahead of ourselves worrying about what will happen and how we will respond in the weeks ahead.  That’s our approach, so we are in sync.  I have a series of mouth and tongue exercises to do three times a day.  They are pretty simple and can be done in the shower, the car, or while sitting around (but not at dinner – lots of open mouth work!)  We’ll be meeting with the Speech & Swallow Therapist most weeks.

After our appointment while crossing the Head & Neck waiting room, we bumped into the couple from Sterling we met down in radiation last week.  The husband is going through the same treatment protocol as I am for throat cancer.  He’s a couple weeks ahead of me, so he can clue me in what to expect next.  His advice was to eat up over the next week; my taste buds will soon be heading south.  Again.  Oh, the couple’s names are Jeff & Nancy.  Some of you will find significance and coincidence in that!  Starting next Tuesday, Jeff & I will have consecutive radiation slots.  Like me, he doesn’t smoke or drink and is a gym rat.  We’ve already commiserated about having our workout routines disrupted by cancer treatment and look forward to the day when our energy levels return to normal.

Ann & I needed a little break before driving home, so we stopped at The Longwood Food Court.  Ann went to Dairy Queen for a chocolate sundae.  Remembering Jeff’s counsel, I went to the Red Barn coffee shop for a Café Americano with cold soy and Splenda – my first coffee in over a month.  During intensive chemo, coffee tasted sour, so sour that I gave up my favorite vice.  But now, for this short window, I can indulge!  And dream of the days, soon to come, when I can wakeup with a bike ride and a wicked strong cup of Café Americano!

I was feeling wide-awake and very up, so I drove home.  It was an easy ride.  When we arrived home, Ann decided she needed a nap.  I paid some bills, made a few phone calls, and had a light lunch.  Then I decided to do the grocery shopping.  Grabbed the list and drove to Shaw’s.  I started in the produce department and spent twenty minutes selecting lettuce, tomatoes, bananas, and blueberries.  It began to dawn on me that chemo brain was fully engaged.  Over the next hour and half, I managed to get almost every item on the half page list (and a few impulse buys, I was still hungry!)  If someone diagrammed my path through the market, likely you would get to see the most inefficient shopping trip of all time.  While I was in the checkout line, Ann called to see where I was.  Still shopping!

When I returned home, Ann & I put away the groceries.  I’ve committed to riding the LifeCycle every other day, so I changed into my exercise clothes and road.  The ride was fluid.  I hope I can keep up the riding through radiation.  The more activity I put into my day, the quicker and easier my recovery will be.  That’s motivation enough.  So no nap today and lots of keeping busy.  Getting back to where I started, let’s see if I sleep tonight!  If not, I have plenty to read and eventually the greenies will wash out of my system.

My brother Alan is driving me into Dana Farber the next two mornings.  It’s a really big help for Ann (& I.)  I’m not alert enough to drive to Boston early in the morning.  Having the two mornings free opens up a lot of time for Ann to see patients.  We really appreciate the help.

Thanks everyone for your support, comfort, and messages.  This is one of the most (if not the most) challenging times in my life and knowing how so many people care is a singular gift.

Love…

Richard