Reston: December 7th

            Since the last post in August, Cindy has been treated with immunotherapy every three weeks and, although the cancer seemed to abate at first, the Keytruda has not been effective.  Consequently, we have decided to end the treatment and she has entered home hospice care this week.  A nurse comes several times a week and the objective is to keep her comfortable and reasonably active.  

            We hosted Dana and Lisa and their families for Thanksgiving (we weren't sure the house would sleep nine but the guests were very adaptable).  We think this is the first Thanksgiving together in about twenty years, so it was special.  The barbecued/rotisseried/smoked turkey turned out well, perhaps making up for a disappointing roast beef earlier in the week.  

            There were some walks around Reston and a nice excursion to Great Falls.  It was wonderful to have the family together.  

Reston: August 19th

             We spent five weeks in Maine, returning to Reston in late July.  We enjoyed three weeks with Dana’s and Lisa’s families, basked in cool Maine weather but then medical issues required us to return home.  Cindy had some follow-up tests in Maine and the results indicated that her situation wasn’t quite over. 

            The upshot is that the operation and radiation did not eliminate the cancer; it has continued to spread down her neck and shoulder.  As a result, the outlook is for retarding rather than eliminating the growth. 

            Last Friday, she started a course of immunologic therapy (Keytruda) with the objective of slowing the cancer’s progress.  She is having some neck/shoulder pain and difficulty eating so she’s on Percocet and back on relatively soft food. 

            To get prepared for whatever comes, we’re exploring the services of palliative care doctors and in-home hospice providers. 

            We put the blog in hiatus during the diagnostic testing and wish the news had turned out better.  Cindy is relatively comfortable and still taking walks around Reston and wishing we were still in Maine.  We enjoyed a five-day visit from Dana and daughter Lucy; we took the opportunity to test some recipes from Yotam Ottolenghi’s book on our guests.  Lucy didn’t approve. 

Maine: Week One

        Maine is great, but there are still some residuals from Cindy’s operation.  Friday, she had a routine follow-up CT scan of her neck at the Bridgton hospital.  Otherwise a very pleasant first week, aside from the endemic nuisances (ticks and mosquitos).   

Recovery: Week Six

             Monday was a follow-up appointment with the Baltimore Medical Center surgeon who did the operation in January.  It was a reminder that this sort of thing is never quite over. At her request, we’re arranging for a CT scan in Bridgton and then a later (when all the recovering tissues have settled down) PET scan in Reston. 

            The schlep to Baltimore was a chance to have a crab cake lunch with an old (well, a “long-time”) college friend.  The crab was chunky and delicious, though light on Old Bay seasoning.  (Van has been known to go overboard with the Old Bay and jalapenos in his crab cakes, so this was a lesson in the merits of moderation.)  

            Saturday and Sunday were the trip to Bridgton and the start of another glorious summer in Maine (current forecast is for a two-blanket night). 

Recovery: Week Five

            An uneventful week as far as recovery goes.  On Friday Cindy had a follow-up appointment with the radiation folks.  They were pleased with the recovery from the radiation related effects, were satisfied that she was eating enough and again encouraged a fulsome diet. 

            Since Cindy was done with stomach tubes and Ensure cartons, the puzzle was what to do with a three week leftover supply and various tubes, gauze and containers.  BioScrip doesn’t take them back so we contributed them to Cornerstones, a local nonprofit providing food, shelter and services to those in need. 

            On Wednesday, we joined a gaggle of other seniors for a Reston Community Center trip to Tangier Island in the Chesapeake Bay.  Hour and a half ferry ride each way, three hours on the island, a forgettable group lunch.  The attraction is the isolated community, the local accent, economy based on crabs and the islanders’ wistfulness about the parts of the island that sea-level rise has already inundated. 

Recovery: Week Four

            Cindy was relieved of her PEG (stomach tube) on Wednesday.  She had disdained the use of it for the past week or so and is pleased that she can sleep on her stomach again.  The removal involved checking in with the hospital reception, filling out several forms, the wristlet ID bracelet, the escort to the surgical area, dressing in the typical hospital johnny gown, confirmation of the correct procedure with several nurses and then the wait.  Then the exceedingly friendly nurse/PA arrived, released the air out of PEG port that keeps a balloon inflated inside the stomach (the anchor for the PEG), pulled it out, slapped a piece of gauze over the incision, put on a six-inch diameter bandage and pronounced it good.  Took about a minute.  Seemed embarrassed that all the rigmarole was necessary and gave simple care instructions.   (One is astonished that dealing with a hole in the stomach is quite so perfunctory.)

            Thursday Cindy had her last session with the PT specialist and added a few more exercises to her to-do list.  Thursday evening another dinner on the Kennedy Center terrace and things seem to be returning to a new mode of normal. 

Recovery: Week Three

            Difficult to keep Cindy from pulling her PEG this week.  She still has issues with chewing and swallowing some things like meat, but is pretty much back to a normal diet supplemented now and then with some Ensure.  So, Thursday we started the process of getting the PEG removed, hopefully early next week. 

            She had her last session with the swallow wallah and continues with the physical therapist who keeps adding new exercises to stretch and strengthen things. 

Recovery: Week Two

            A relatively routine week with physical and swallow therapy appointments.  By week’s end, Cindy was venturing beyond a liquid diet and becoming adventurous with her meal choices: this noon toast with strawberries and tofu.  A bit eccentric and innovative but needed some Ensure (by mouth, thankyou) to top up.  She is now lobbying for removal of the PEG (stomach tube) and had to be convinced that it wasn’t quick disconnect. 

            Meanwhile, she’s been out thinning the enthusiastic plants in the patio and generating about twenty pounds of green refuse.

Recovery: Week One

             Physical therapy was the theme for the week.  The operation resulted in Cindy’s neck being tight and touched a nerve to the muscles around her shoulder causing it to slump forward.   The therapist worked on loosening up her neck and strengthening her shoulder.  So now Cindy has a broomstick and a set of flat stretch bands as her equipment plus a set of eight or so exercises (so far) to do several times a day.   

            BioScrip delivered a 30 day supply of Ensure and accoutrements so we’re set for recovery to proceed at its leisurely pace.  

            It isn’t all recovery all the time; this week was one of our National Symphony Orchestra subscription dates at the Kennedy Center.  The weather was pleasant and we had dinner outside on the rooftop terrace.  Alas, Cindy could only have yogurt.

Radiation Out, Recovery In

            Tuesday was Cindy’s last day of radiation and transitioned to the recovery phase.  However, it will take some time for the tissues in her mouth and throat to recover, so she will continue to get the lion’s share of calories through her stomach tube.  Food by mouth is remains limited to yogurt and the like. 

            She saw the swallow wallah this week.  The nurse’s main concern was aspiration of liquids that could bring on pneumonia.  Yogurt or other gels are good and plain water is fine but OJ isn’t.  Recovery will take six weeks, give or take.  Meanwhile, Cindy isn’t a happy camper at mealtime.   

Radiation: Week Seven

        Pretty much a repeat of week six and the end is in sight.  Cindy gained a couple of pounds (though the Monday weigh-in is pretty casual), so the roughly 1,500 calories per day is working.   The last treatments are Monday and Tuesday and then it’s on to a relatively long period for her mouth, throat and neck to recover.  So the Ensure drill will continue for some time. 

Radiation: Week Six

              The days have become somewhat routine now though the radiation regime is changing slightly to focus on a smaller area and producing more sunburn effects.  Getting into a routine is perhaps disappointingly late in the process but it also signals that we’re getting towards completion. 

            Cindy has worked up to four Ensure servings daily, about 1,400 calories, plus scrambled eggs, bananas, yogurt and other pureeable items to round out consumption that should get her energy up.  The Ensure goes in mostly via the feeding tube (Cindy begrudgingly acquiesces to this practical approach, disconcerting but effective.)

Radiation: Week Five

           The sore throat caused by the radiation creates serious problems with getting enough calories into Cindy; this prompted a decision to have a stomach feeding tube inserted on Tuesday.  It went smoothly though there are the attendant pains (e.g., using stomach muscles the first few days is a challenge).  Also, there was the fast from midnight the day before the operation, which got extended until noon the day after (including liquids).  So, nourishment went a bit backwards to get his done. 

            This introduced a medical care wrinkle that was new to us: outsourcing to “infusion and home care management” companies.  The BioScrip lady arrived at noon the day following the operation with her supply of Ensure (same as the drug store product except in a non-recyclable container and including fiber in the mix).  She removed the drainage bag (some confusion here on who was supposed to do this) and instructed us on the fine points of loading the 60 ml “syringe”, inserting it into the feeding tube and downloading the product.  Pretty straightforward.

            The next day, Cindy watched the FedEx guy leave four boxes in the patio assuming it was something we’d ordered.  Turned out it was about a month’s supply of Ensure, a bunch of the plastic syringes, gauze pads and whatnot.  (Was this the result of one of the numerous lines we signed the day before under the rather fine print on BioScrip’s agreement?)   And the next day the BioScrip office called to see if we wanted a follow-up visit. 

            So, while Cindy is not into solid food yet, she’s still asking for soft scrambled eggs, pureeing graham crackers with cream and prefers the old fashioned way of consuming Ensure.  But we’re also doing some “infusion” to top up the daily calorie count.  Frankly, it’s a lot faster if a bit weird.  But the radiation folks are forecasting an increase in swallowing difficulty, so the tube is going to be critical.  

Radiation: Week Four

       Another week of opening the day with a visit to the hospital for radiation.  The throat pain issue continues with good and bad days and we’re looking at ways to get more calories in.  The long treatment process is dominating life, but not to the extent we don’t do anything else.  Walks around the lake are getting pleasant with spring weather.  Chad and Kathy visited on their way south escaping mud season in Maine.  We took in the current play at the Arena Stage.  On the other hand, Cindy is finding naps to be a nice afternoon interlude. 

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.