Radiation: Week Three

            The radiation crew’s prediction that throat pain would become an issue in the third week proved accurate.  Eating has become a chore even when everything is pureed and thinned.  Plus, Cindy complains that the food is tasteless, but can’t tolerate salt or spice.  Another challenge for the cook. 

            Cindy’s complement of palliatives has added liquid Motrin from the children’s shelf to relieve the throat pain.  The theory that running the liquid over the throat enhances the analgesic effect seems to be confirmed by Cindy’s lips becoming numb. 

            Not helping the increased pain was the doctor’s advising Cindy last Monday that the schedule has been revised to add seven days to the treatment; it now lasts until May 7^th.  Seems that the two doctors running the department hadn’t gotten together to finalize the schedule until ten days ago.  Bummer.   

            The waiting room has seats for about ten.  A table is dedicated to a puzzle, its completion proceeding glacially.  A TV was just installed; we had it turned off on its inaugural day (we being earliest, there were no other customers to consult).   There’s a bookshelf not getting much play and a desultory collection of magazines.  We’re getting acclimated and have adopted our favorite seats. 

Radiation: Week Two

          

            The second week has gone fairly smoothly – we show up in the radiation waiting room, usually first, and wait for the nurse to summon Cindy.  She has had some pain this week, but mostly in fairly brief, seemingly random spurts. 

            Eating is, so far, slow but not much affected by pain.  But then there’s the parsley factor.  It’s tough to chew it up without sufficient saliva (at least that seems to be the cause) and it resists being swallowed whole.  Same applies to the skins of peas and corn but one can puree those.  The saliva substitute approach hasn’t been perfected yet, but she’ll continue to work on it.  We just have to get by without a bit of green on sprinkled on things.

Radiation: Week One

            

            Starting Monday, Cindy shows up each weekday at 8:30 in the Radiation office, scans her barcode to alert the radiation wallahs that she is in the waiting room, gets a mini-bottle of water and sits down to read until she is summoned to the inner sanctum.  This is on the ground floor of the Reston hospital complex, the better to house heavy metal devices.  In preparation for this, Cindy previously underwent a procedure to produce a plastic radiation mask molded to her head. 

            The daily drill includes removing any garments that might have metal near her head or neck, getting into a hospital smock and being placed in a precise position with respect to the radiotherapy machine.  Placement in a precise position is crucial so the machine can radiate the exact areas targeted on the patient each day without having to do daily calibrations.  And that’s a euphemism for being strapped to the platform and, in Cindy’s head and neck treatment, having the radiation mask placed over her face and affixed to the said platform.   

            The radiation itself takes about ten minutes; the setting up and breaking down takes another 20, so the whole process from scanning in to departing may be an hour.  She typically doesn’t get a lot of reading done.    

Winding Up the Pre-Treatment

            On Monday, Cindy had her first (and last) session of Cetuximab, the immunological drug chosen in preference to the chemotherapy alternative.  It did not go well; her body’s reaction to the drug indicated that this approach wouldn’t work.  Considering the side effects of the alternative we decided to proceed with radiation alone. 

            Cindy rounded out the pre-treatment appointments with the swallow and speech therapist on Wednesday.  It’s apparent that a radiation induced sore throat can make eating a challenge and the therapist spent time discussing what foods to eat (protein and calories are biggies), how to prepare them (the food processor will get a workout) and when (often).  Nothing remarkable about the advice and we’re hoping Cindy doesn’t find it necessary to visit for further advice and treatment. 

            The radiation starts Monday morning. 

Team Meetings

           Monday - The oncologist's office called to see what we had decided about the Cetuximab, an immunological drug that is used in conjunction with radiation to augment the effectiveness; Cindy has decided to have this treatment.  There will be three or four doses which take about an hour each to infuse.  It has its own set of side effects but seems a good choice.

            Cindy had an appointment with Anneke, an oncology social worker basically concerned with the patient's physical, social and psychic support during the treatment.  She seemed satisfied that, for the moment, Cindy was not stressed by the upcoming treatment nor lacking in support.  As befits a social worker, she was chatty and we talked about her Dutch first name and Boer Dutch last name, results of her birth during her parent's assignment in the Netherlands and her husband's South African heritage.  Her kids have not been similarly blessed.

            We were asked to stop down to the radiation shop after the appointment with Anneke to see Elaine, who seems to be the patient support nurse there.  She wanted to talk about nutrition and eating problems, and referred Cindy to Swati, a nutritionist.

            Thursday - When we called Swati, she seemed slightly puzzled about what she could do for Cindy now but gamely made an appointment.  We were again confused in finding our way about the three sections of the Reston Hospital, but managed to find Registration.  Unlike the appointments with such weighty and ominous groups like radiation and oncology, registering for a nutrition session took a 15 minute paperwork drill complete with creating the ID wristlet (which Cindy declined wearing).

            Anyway, we talked with Swati about nutrition matters and she gave Cindy a couple of high protein drink sample bottles (she had a surplus anyway).  She seemed impressed with Cindy's recent healthful meals (your humble correspondent was appropriately modest).  She encouraged Cindy to return if she had trouble eating.

            Friday - The caller (Cindy/Cynthia) said she was a "case manager" and wanted to talk with Lucinda.  One worried about a scam,  carefully answered and waited for the request for the SSN and bank account number.  She was from Blue Cross and wanted to help (suspicion not abated).  However, she seemed genuine and had been prompted by the oncologist's request for approval of Cetuximab.  She was knowledgeable and went through her list of questions,including whether there were plans for a "GT" (gastrostomy tube) to feed Cindy.  We hoped not.  She's sending some material on coping with radiation treatment, gave us her direct line and asked that we call if we had any concerns.  We were stunned that Blue Cross was so proactive and are uneasy with implications of all these separate health entities contacting Cindy with concerns about the side effects of the treatment.

            The theme this week is that everyone involved is concerned that someone like Cindy, borderline underweight, will be challenged to maintain her health and psyche when suffering with the effects of this treatment.  We're hoping that this is an assumption about age-related decrepitude rather than the norm for this treatment, but it certainly focuses one's attention on getting food into the patient. 
   

The News So Far

           

           Last November, Cindy noticed a swelling on the left side of her neck and was referred to the head and neck center at the Baltimore Medical Center and was examined in December.  Cancer in the lymph node was tentatively diagnosed; a CAT scan, PET scan and other tests confirmed it.

            A surgeon operated on January 23rd removing the swollen lymph node from the neck and four spots under the left side of the chin which showed on the PET scan.  Samples taken from the tongue and throat were, thankfully, negative but the resulting soreness made for slow eating.  The surgeon subsequently recommended radiation treatment; she also recommended chemotherapy if Cindy could stand it.  The chemotherapy would have a 6 to 8 percent benefit beyond the radiation.  She referred Cindy to Arlington & Reston Radiation Oncology.   

            We saw the radiologist on Friday, February 15th.  Cindy is scheduled for 30 radiation sessions over six weeks starting March 18th.  Still a question on chemo, which is done simultaneously with radiation to add 6 to 12 percent benefit to the areas addressed by the radiation.  When we asked about chemo, the radiologist demurred on a direct answer but said he wouldn't recommend chemo for his mother under the same circumstances; we'll await an appointment with an oncologist for more insight.  (The chemo would be done by a different doctor/practice.)  The potential side-effects from radiation alone are daunting (including a stomach tube if the patient can't get enough food down).  Going to see if we can fatten Cindy up a bit in the next couple of weeks.

            Cindy saw the oncologist on March 1^st.  He explained the diagnosis and recommended either chemotherapy or an alternative immunological drug.  The latter isn’t chemo per se, but side effects are similar if not as severe. 

            We’re impressed with the collection of specialties involved in this.  On the 4^th, Cindy sees the “oncology social worker” and next week the speech and swallowing practitioner.