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.