April 26, 2010 – Radiation 9 [26 to go] – Manic Monday

I am a real doofus when it comes to pain medication.  One of the suggested uses for Percocet during radiation treatment is to reduce mouth, tongue, and swallowing pain.  The concept is that the patient takes the med an hour before a meal.  Last night, I undertook the utilization of this complicated correlation and was able to eat my dinner with ease.  Doofus is the technical term.  My picture is in the dictionary.

Mondays are manic days for Ann & I at Dana Farber.  Throughout the radiation treatment cycle, I will have at least five appointments that day.

Today, I got started at 8:00 am.  My port was activated (a tube was put in for chemo) and blood was drawn.  We haven’t had a port issue until today.  The channel flushed and seemed to be fine, but the nurse was having trouble getting blood out (usually it flows easily.)  She used different syringes and vacuum tubes without much luck.  Then, a series of flushes was tried.  That seemed to do the trick.  The nurse thinks there was a small piece of coagulation that acted like a flap when she tried to draw blood.

Our next stop was down in nuclear medicine.  First, we met with Dr. T., the radiological oncologist.  He checked out the condition of my mouth, tongue, and throat.  I seem to be right on schedule.  Dr. T. discussed what the coming week will be bring, both with treatment side affects and the insertion of my feeding tube.  We talked a bit about pain management.  I told Dr. T. my Saturday night grinder story and he advised me that it might be a few months before I can swallow a sub roll comfortably.  But, it’s something to look forward to; it’s always the simple things.

We walked across the nuclear medicine lobby to Little Bang’s waiting room.   After a short wait, I was called.  I took off my glasses, hearing aids, and undid the top of my johnny.  The radiation techs saw my enabled port and decided that my mask needed a little customization.  They placed the mask lightly over my face and chest to mark off a rectangle where the port’s needle and tube sit.  Then they got out scissors and cut the rectangle away.  The techs assured me that the mask felt no pain.  When they locked me in, the mask felt as tight as ever.  I wished Little Bang a good morning and she started running my radiation program.  Today’s music was from Richard Buckner’s first recording Bloomed, tracks played were “Blue and Wonder”, “Gauzy Dress in the Sun”, “Rainsquall”, “Surprise, AZ” and bit of “Daisychain”.  There’s nothing like the sound of a yearning pedal steel in the morning.

I changed out of my johnny, which means I took the johnny off and put my t-shirt and sweatshirt on, and we went to the next stop of the day, Head & Neck Oncology.  I checked in and my vitals were taken.  My weight clocked in at 149.8 pounds.  I expected to be a few pounds heavier after the week’s gorging, but I’m still within six pounds of my pre-cancer treatment weight.  Our appointment was with Dr. H., oncologist and team leader, and the other Dr. H., the hematology/oncology fellow.  They started with a physical exam of my mouth, tongue, and throat.  Next was a review of my blood profile from today’s draw.  My red count is still low but it improved over the past week.  The intensive chemo is still in my system, likely causing the lower counts.  I told the doctors that I added fish to my diet to increase my protein intake.  Unfortunately, my nutrition numbers weren’t available from the lab (those tests take longer) so we don’t know where my protein level is.  At this point in the radiation treatment, my daily medications were evaluated.  Dr. H. decided to simplify my daily intake and stop most of my non-cancer related meds until radiation is completed.  A related goal is for all daily meds (cancer treatment and general health) to be administered in liquid form either orally or through the feeding tube.  Dr. H. asked me how I tolerated my first booster chemo treatment last Monday.  Other than hiccups, fatigue, and chemo brain (I left out the shopping trip story), I was fine.  Dr. H. alerted me to potential side affects as we move forward.

We took the stairs next to Head & Neck Oncology down a flight to the infusion room.  I checked in and Ann & I sat down to wait for my slot.  It’s fortunate that we enjoy reading.  Waiting time becomes reading time.  Chemo time becomes reading time.  My name was called and I was directed to my favorite chair in a corner with windows on both sides.  It’s the same chair I was sitting in last month when cousins Al & Darlene arrived at the next chair for Darlene’s infusion.  As the nurse began to set up, my iPhone dinged.  I checked the phone and there was an email message from Darlene in my Inbox.  Cool!  I love serendipity!  Of course, I replied immediately and told her where I was.  The nurse handed me a cup of pills including three greenie mega-steroids.  We’ll see if the insomnia gnome visits tonight!  I was hooked up and the chemo booster was delivered in under an hour.  It was still before noon, five appointments/treatments in under four hours – very slick!

Ann & I decided to go to the food court for lunch.  Being aware of my doofus tendencies, I took Percocet around 11:00 am in anticipation of chewing and swallowing activity.  Ann chose Subway.  I was looking for a wrap, but Subway replaced the wrap with flatbread, which looked soft.  I had tuna with veggies.  Ann picked her favorite, a 6-inch Sweet Onion Chicken Teriyaki grinder on wheat bread.  I was able to eat the flatbread sandwich with just a little discomfort (had to suppress my habit of eating fast.)

I think our ride home was easy.  I closed my eyes on Storrow Drive (Boston) and opened them on Route 146 (Worcester.)  Once home, the couch beckoned.  Rudy and I assumed the position and napped while Ann ran a series of errands.  I’m feeling good today, even after the pace of the morning.

This week, we’ll have help on commuting to and from Dana Farber.  Our friends Jesse (Thursday) & Susan (Tuesday) will drive and hang out with me during my appointments.  We really appreciate this.  Ann will be able to schedule two full days of patients.  The pace of her work and my illness is a lot to manage.  Wonderful friends are a true blessing.  Thanks, Jesse & Susan.

I’ve got the rhythm of my swallowing physical therapy down.  I did a set on the way to Boston and another set on the way back (wait – we stopped for gas – I just remembered that!  I must have woken up.)  Did anyone in other cars catch me doing the exercises?  They involve weird stretching of the face and sundry ways of sticking the tongue in, out, up, and down.  I should notice the other drivers.

Thanks everyone for your kindness and consideration.  Your comfort and support make my days brighter and my treatments lighter.

Love…

Richard