March 23, 2010 – Wiped out boy

Note to self: stay home and rest during the days after the 5FU pump is disconnected.

Second note to self: go appointments when scheduled (today, we had an injection followed by radiation prep on the board.)

The two notes have an essential contradiction.  The appointments trump rest.  That doesn’t mean my body isn’t without a trick or two.  I took my shower this morning and was lightheaded and tired.  We had breakfast, got into the car, and headed off in the heavy rain to Boston.  On the way, I felt very fatigued and even more lightheaded.  I put the passenger seat down flat and Ann helped me into patterned belly breathing.  I fell asleep as she navigated the morning traffic and wet weather. 

On the way to Boston, we got a series of phone calls from a concerned (and very nice) Dana Farber nurse informing us that my injection (to boost my white blood cell count) scheduled for 9:45 am had to be postponed until the afternoon.  The drug, without a special order written by a physician, cannot be administered within twenty-four hours of the 5FU pump being disconnected (2:00 yesterday.)  I explained that originally the injection was scheduled for yesterday.  She said the injection would not be released by the pharmacy without the special order and that she would keep calling to facilitate the order.

Despite the weather and my meltdown, we arrived at Dana Farber on time.  Ann parked the car while I raced up the 11^th floor.  When I checked in, I was told that my injection was now scheduled for 1:00 pm.  I recounted my conversation with the nurse and they paged her.  She told me that she still didn’t have the order and the injection was still at the pharmacy.  She called for the order again, without success, while Ann joined me.  We decided to postpone the injection until the afternoon.

We walked from Dana Farber to the radiation prep suite at Brigham & Women’s Hospital.  The prep was fun – well, this is me talking!  I stripped to the waist and lay down on a table with a special head support.  The two techs explained in great detail what was going to happen.  Apparently, this process is worrisome for folks with claustrophobia.  In my case, I go into science fiction land.  So, as they carefully laid out each step, I rested and took in all the devices in the room.  I restrained myself from asking about each.  I figured they wanted to finish today.

The main goal of the prep is to construct my radiation mask.  They prepared my face (a facial like solution, warm and relaxing) and then pulled a large piece of tight plastic netting over my head, neck, shoulders, and upper chest.  The netting was hot but not too hot.  The techs carefully shaped the material to the contour of my face and upper body and snapped down each region of the mask until it was taut. After the mold was dry, they slid it off me and showed me the result.  These masks – post-radiation treatment – are popular for Halloween.

The last step was a trip for my new doppelganger and I to a special MRI machine.  We were assembled on the tube’s table and locked in place.  Time for a mini-space flight (again the tech was relieved that small spaces are not a problem for me – hey, I used to go spelunking!)  In and out, in and out, to Ben’s favorite click clack magnetic percussion and we were done.

We met briefly with Dr. T., my radiologist, and went over procedural details.  He sent us back to Dana Farber to meet with his nurse for radiation orientation.  We spent an hour going over treatment protocol, dental care, side effects (oh, this is going to be lovely!), and dealing with side effects.  We have pages of instructions.  The details will slip out onto this blog as I experience them.  During the orientation, I leaned against the wall and tried to stay alert, or even awake.  Ann took in the nurse’s dialogue.

We finished and took the elevator up thirteen floors to where my injection waited.  The same nurse (I felt bad for her – she felt bad for me – the morning’s delay was out of our control) brought me into the blood room and dashed the needle into my arm.  I thought the shot was to be administered in the “loose folds” of my stomach.  Stomach, shoulder, whatever; we were done.

We left Dana Farber and walked into rainless skies.  A very tired Ann drove home.  I fell asleep as soon as we hit Storrow Drive and didn’t wake up until we were home.  Ann had patients, so she went off to work.  I fell on the couch and Rudy Dog immediately assumed the napping position.  Good pup, he knew how I felt!  I slept deeply enough that Lacey Dog’s howls didn’t wake for doggie dinnertime.  Finally, I rolled off the couch, fed the dogs, and shook myself awake. 

I am very grateful that I have NO appointments tomorrow!  We have one on Thursday at Dana Farber.  Adam arrives tonight, so we’ll have another driver.

I’m feeling better now, less fatigued.  The naps certainly helped, but having all y’all on this ride with me helps me move forward, especially through the tough moments.  I cherish you!

Love…

Richard