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.