Pattern of a day - with a travelin' twist

Not much news on the health front.  Still hurts when I yawn and do swallow exercises.  It'll be that way for a time.  I take meds through the tube (one of which makes it easier to digest and "move" the formula), wait a half hour, have my formula (yum-yum), then do swallowing exercises and east semi-solid food while the pain med is most effective.  Today my lunch times match yesterday.  Big whoop - I need something to find wonder in.

Ann is brilliant, ok you all know that!  Yesterday, Ann realized that her vacation (week after next) and Dan's vacation (next week) matched an open week at one of the cottages at Wind-In-Pines on Sebago Lake in Maine.  Dan moved his week to match and now we're going up to WIP a week from today through Thursday.  The trip probably would be too much for Ann to pull off alone, but with Dan's help, we can make it a real vacation.  Yum - more formula!  The folks at WIP are going to do some stuff to make it even easier.

WIP (link one official site---  link two my photos) is a rustic cottage colony that the four of us (Ann, me, Dan, & Ad) have been enjoying for well over two decades.  It is our place to relax.  This is a surprise bonus this year!

Thanks for all your consideration and concern.  I'll be carrying you up to Maine with me next week, we can revel together.

Love...

Richard

Fountain of Youth

Yesterday was a productive day at Dana-Farber, a day of reassurances.  I hear that the traffic into Boston wasn't too bad (the car rocks me right to sleep).  First stop was a dual appointment with Nutrition and Swallow Therapy.  I have been concerned that my inability to swallow more than one to three "bites" of semi-solid food at a time was marking me behind in my recovery from the radiation treatments.  Not so, I was informed.  My primary tumor was located on the base of my tongue - an area of muscle that pushes food down the throat.  It needs more time and work before it will have recovered enough.  We went and made up a list of foods to try - eating builds strength.  We reviewed the exercises and set up goals for the next two weeks.  Oh, and my weight has been stable (+/- 2 kilograms) since the tube went in!

Next, I had blood drawn and my ports flushed, then headed down to acupuncture for a session.  The only issue with having acupuncture in the middle of the day is that it makes me very relaxed and full of desire to operate on low speed.  

Side note: my hair (top of the head) growing in from chemo is soft and baby like, though brunette and gray.

Our last appointment of the day was with Dr. H. & Dr. H., medical oncology.  We reviewed my general state of being, pain and medications, and eating.  Once again, I asked about where I should be eating-wise and got the same answer.  Patience and work, boy.  Dr. H. felt that having my stomach tube removed in October was a good goal.  But the tube only comes out if the food coming in though chewing and swallowing (i.e. without out the tube) for a couple of weeks is able to do so without weight loss.  My CT and PET scans are now scheduled for August 30th.  On September 1st, we'll meet with the two Dr. H.'s and Dr. N. (surgeon) to review the scans.  The senior Dr. H. does not believe I will need surgery on my lymph nodes but they want to be certain all remnants of the cancer are gone.  If there is any doubt, they will remove a node or two. (I'm hoping for no surgery, but we'll follow the science.)

Thanks everyone for being here with me.  Your support is carrying me through the tough days and making me laugh during the easy ones.

Love...

Richard

Mirror daze

Yesterday and today are mirror days.  Three formula meals, swallow exercises, attempts to eat semi-solid/solid food mixed in with a mall walk and naps.

Tomorrow would be very much the same except it is Appointment Day at Dana-Farber.  There is a very busy day planned.  I get blood draw, have an acupuncture session, meet with the Swallow Therapist, the Nutritionist, and see the medical oncology team.  We have lots of questions centered on my swallowing progress.

I have no problem with the physical act of swallowing.  The substance being swallowed burns and/or the tongue and throat muscles hurt (they are still healing.)  I know that I must learn to swallow with comfort to fully recover, I know that I can.  The advice is "keep trying".  Plus, I have such hankering for real food!

Today, Dan started his day in town; his first appointment was here, so he stayed overnight, short commute, extra visit for us.

Thanks everyone for your words of comfort and love.  I think of you, friends and family, when the healing is most challenging.  I never feel alone.

Love...

Richard

Sorry promise

Friends and family, sorry I have been inconsistent in my posting to the blog.  And then I get concerned messages from folks worried how I am.  So here's my new promise.  I will post three times  a week to the blog.  I'm really sorry if I've caused concern with my negligence.  To say that little has been going on, or that each day is like the one before, is no excuse.

So where am I?  Still having little success with semi-solid/solid foods but am being patient.  Have appointments with oncol, nutritution, swallow therapy on Wednesday.  Maybe I need a kick in the pants, maybe I need to continue with patience.  We'll see.  This is getting tiring, just formula. If I need to toughen up, so be it.


On Friday night, Ann & I joined Jesse & Susan and Pam & Mark at Jazz At Sunset, a now twenty year series held at Worcester's Ecotarium  (indoor/outdoor science museum).  Ann & I stayed for the first set and had a really good time. The concert was a veteran big band featuring a young jazz vocalist.  The vocalist's parents are close friends of the big band players.  That added a special twist to the music.


Dan's in town today.  We visited my folks.


Though I have not posted as often as before, I think about you, my support network, every day.  You are my anchor and your love and concern keep me centered.  


Love...


Richard

Hurry up and take my time...

Last week, I saw the medical oncology team, today the radiation oncologist.   The message is about the same.  The med_oncon folks cut my pain patch level in half (50 to 25) and placed the primary goal on eating semi-solid food (scrambled eggs, pudding, yogurt, etc.)  The rad_oncon gilded the the pain patch up 12 to 37 because I've been hurting.  This seems to be a good compromise.  We'll drop back down to 25 in a week.  Healing is a slow complicated  process.  I'm being sold patience and it's the only show in town.  But one that makes sense.

My treatment started with curling as the background, then the general Olympics, and now the World Cup.  The NBA Finals were in there somewhere, too.  Sports makes an odd metronome!

My old plan is out.  I'm not back at work in late-June to mid-July.  The new plan is pretty similar - one day at a time - and follow the oncon rules.  When I reach a milestone, act surprised!  There's no book on cancer treatment recovery with set and dry times.

BeJae - our shivering bones cry out for this unrelenting heat - has always been a favorite verse.  I hear your guitar echoing the truth.

I'll write when the seas are calm and I'm awake.  My spirits are good.

Thanks everyone for your support and comfort.  You draw the roof and floor on my days.

Love...

Richard