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

Update

Ann's surgery on her left arm above the wrist was successful.  She's home.  We have a busy evening planned for us!  Must get started...

Love...

Richard

Busy week to come

Ann saw the orthopedic surgeon today.  She'll have surgery tomorrow.  A plate will placed in her left arm above the wrist.  The plate will keep both arms the same length, add strength, and allow a quicker recovery.

Today, Renee drove me into Dana Farber for my acupuncture appointment.  Traffic was startling light and we arrived early enough for me to make a stop down on L2 to see Maureen.  Maureen is a radiation oncology nurse and would have done my discharge but our schedules got out of line.  We touched base and I got the once over.  My feeding tube is working well and looks good.  My mouth, throat, and tongue are making steady progress.  Maureen did a basic brain adjustment on me - I have to have reasonable expectations on the speed of my recovery from radiation.  My swallowing will come back and my pain will lessen.  I am getting closer everyday.  I am getting stronger and better everyday.

On Thursday, I see Dr. H. & Dr. H. and the medical oncology team.  Our friend Susan will drive us.  (Currently, Ann & I are keyless per our doctors.)

Time to get ready for tomorrow.  Ann appreciates the good thoughts and wishes as do I.  You are wonderful.

Love...

Richard

Ann says I'm doing better

so I must be doing better.  This morning, she compared how I feel and act now to how I was doing just after radiation - then two weeks ago - and then a week ago.  The further we go back, the more dramatic the differences.  So, I can't dance and eat solid foods, can't chug water or any beverage for that matter, but I am moving forward.  Albeit, (I guess) impatiently.

It's real hot & humid today so I did a LifeCycle ride instead of walking.   I don't have a set in time schedule, but I am getting tasks done each day.  When I can chug water or swallow solid food, I will be really happy.  Have to take it one day at a time, though.

With Ann's broken hand, I'm doing all of my feeding and medicating myself.  This is a sign of progress.  There was a period of weeks when I couldn't keep track of meds (or time of day) and slept nearly round the clock.  Don't worry - Rudy Dog cross checks me!

Thanks for your comfort and support.  Now is an easy time to get lost, but you folks keep me honest and happy.

Love...

Richard

Why one day is different than another

Two days - yesterday and today.

Took a 30 minute walk each day
And a nap

Ate 3/4 of an eggbeater egg yesterday
Approaching that time now

This morning Ann got a call from her Dad and they decided to meet at St.V's E/R room.  Ann's Dad is having a stomach test.  Ann slipped taking a short cut from one parking lot to the E/R, fell, and broke her left arm in two spots.

It's going to be a fun few weeks!

Dan is on his way in from Cambridge.

If I fall behind in blogging, well, days are different.

Love...

Richard

For once, adverts on TV for food are delectable!

For so many countless reasons, it's good that Ann is here.  I could have/would have slept all day today without her encouragement.  This wasn't a day that tracked well.

We slept in.  Apparently, at 10:00 am, with clear diction, I shouted HELP!  Ann came running, her heart racing.  For me, it was a dream.

Ann had an early work meeting at the house, to I made myself scarce until after noon.  The end of the scarce was lying in bed napping.  As I said, I was ready to sleep the day away until Ann made some gentle suggestions.  Instead, I

ate an Eggbeater (equivalent 1 egg)
road the LifeCycle (6 minutes @ 1)

At 3:30 pm, Rabbi Seth stopped by and we talked about me, cancer, and recovery.  Seth helps me put things in perspective.  It's easy to get lost in illness, it's good to have an experienced guide.  Seth thinks that a component of eating food as opposed to formula through the tube is an element of being human.  People eat to live but more as a social mechanism.  The dinner hour pulls us together.

I need goals and a schedule to keep me moving.  Napping is too easy.  Adjusted for medical appointments, each day should include slots for the LifeCycle, real meals (as opposed to formula), formula, naps (start & end times), blogging (yes, you), and general email response.  And it's time to start reading again.  My focus is improving.

I need to take my life back.  The schedule plus real meals seem to be the keys.  Once I can eat real food in quantity and variety, I believe my recovery will be rapid.  Oh, how I yearn for food that has flavor, doesn't burn, and swallows easily.  That will come.  I can move it along by forcing that eggbeater down each day until my recovery progresses.

For once, adverts on TV for food are delectable!

Thanks all for your support and comfort.  You are my fountain and anchor.

Love...

Richard

Is it bait and switch? Or just that I hear what I want to hear?

I get a cancer treatment ending date and think it'll all be easy from that date on.  As usual, life plays tricks on me.  Finish the treatments out on an island far away from home, knowing that I will feel better but not exactly when.  Still gotta get home and heal up.  This is life teaching me a lesson.  It's never as simple as it seems to be.  But what should I concentrate on?  Six-seven-months ago I was diagnosed with cancer.  Today, my prognosis is excellent.  I have a bad sore throat & throat & tongue, a stomach tube, and I'm still caught up in medication alley.  Really, do I have room for any complaints?  Look at the big picture, son!

I will get better; and probably faster than I can imagine today, or maybe slower.  But I need to buck up, be a little tougher.

I write in this blog less often.  That behavior mirrors my daily activity.

Much to think about.

The fan blew my cards off the long windowsill.  I carefully and gently stacked them in a shoebox.  I've been placing new cards on my sill and my sill is near full again.  That sill is you.  You never leave me unattended or alone.  Thanks for the comfort and love, unending.

It's in the 80F's today!  And muggy!

My short term goals remain the same: eat some semi solid food, walk 15-30 minutes a day, maintain my weight so I can get the feeding tube out.

Love...

Richard

Chicken or the egg?

Yesterday, I swallowed three tablespoons of Tofutti Vanilla Frozen Soy Yogurt.  Today, with my late lunch of two cans, I had half a container of Eggbeaters - about an egg, scrambled.

Progress.

This is the current step:
  Eat, no matter what it tastes like, eat.
  Spices will do you no good.
  Can't hide flavor because flavor is nil.

My taste buds will rebound.  For now, it's mechanical.  At least I feel hungry at times!

Thanks all, for the cards, the love, the laughs.  You are my fuel and motivation.

Love...

Richard

Sprung impatience

When I began cancer treatment, I had a finish date tacked into my mind.  Three 21-day intensive chemo cycles, 35 radiation sessions, then a "two week" healing arc.   During the roller coaster ride of the intensive chemo cycles, a two week recovery arc seemed reasonable.  My mouth, neck, and throat were bouncing back and forth between pain and rapid healing.

Intensive chemo was in the books and I reached a couple weeks of happy eating that extended into early radiation.  As I neared the end of radiation, the challenge ahead - the healing - loomed larger.

Now I pass my days with pain patches that make me drowsy and mostly do their job.  I can't drive or read or follow complex text.  I have my friends & family surrounding me with love, support, and comfort - otherwise I'd be very lonely and very blue.

I have yet to start solid food (we discuss that process at Tuesday's appointments) and must reach two weeks of maintained weight without use of feeding tube before the tube can be removed and healing accelerates.  Average time is 12 weeks from last radiation treatment (June 2) until tube removal.  I feel hungry and though the tube fills my nutritional needs, it's not the same.

Ok, these 2-4 weeks is a blue time.  I was warned and warned about that.  I AM feeling better, a little fire through the blue.  I will heal and be stronger.  It's just hard to see sometimes.

Thanks all for being my anchors.  I rely on you in so many ways and appreciate you in every way.  One day, sooner I hope, we can celebrate all this growth.  Right now, your love is seeing me through.

Love...

Richard

I must be patient.

Thursday's trip to Dana Farber for acupuncture was uneventful.  I am enjoying the treatments.

I need to get on on a schedule to ramp my days up.  I need periods for naps, exercise, eating, writing, World Cup matches, etc.  A schedule serves as a disciplined framework for my day.  It's too easy to sit back and develop bad habits at a time when I need to heal.

I'm feeling overall ok.  My throat and mouth remain sore.  At this point, I have to accept that soreness.  It will fadeaway with time, most areas fairly quickly.  I'm still fatigued and need extended naps.  But I am ahead of where I was a week ago.  It's a slow process, some days seems like I'm swimming in place.

This is a tiring process, tiring on me and on Ann.  The doggies are are stressed out, too!  We feel like we should be at the end (and are) of this treatment protocol.  The depth of the recovery process is greater then we imagined, even after experiencing recovery signposts during chemo.

Thanks for being with me, these recovery weeks are difficult, and your support, love, and comfort help me through the bumps and grinds of this new road.

Love...

Richard

 

I am a patient.

The last three days have been been fairly quiet.  My job is seeing doctors, nurses, technicians, and medical specialists. I am a patient.

My work load has pretty light lately, most of it home based (physical therapy, tube feelings, etc.)  Light doesn't mean easy, just less road time and small machines.  

Tomorrow morning, Ann & I hit the road for Boston and accupucture.  It's a long ride for a 45 minute treatment, but it's research and well worth it for the next person who walks in the door.

When I get busy, I'll post daily.  Currently, our goal is to balance pain, constipation, and mouth/tongue recovery.  It's a lot of trail and error.  Yeah, fun!  As fun as watching paint dry.  While my schedule is interminent, I'll post every 2-3 days.  

Hang in there.  I'm hanging in here with you.  Thanks for being you.  This is the tough part, being somewhat isolated, dealing with the pain and stuff while away from Dana Farber.  I really need and bank on you now.  I have my stack of cards to walk through when I'm feeling blue.  Sam - thanks for the lovely and whimsical gift (a note is pending but writing is a challenge.)  You are my support and comfort.  I need you and you are here.  Thanks, don't know what else to say, but thanks!  The one word elegantly carries such a weight.

Love...

Richard

Saturday June 5, 2010 - Back in Mobile with the Memphis...again

I'm ok.  The two weeks after my type of radiation treatment ends are the two worst weeks of the whole protocol (chemo + radiation.)  Fatigue peaks as does the pain. Most often, I cannot read or write.  It's almost over but not yet.  Ann thinks I'm a little better each day.  I'm hoping that a week from today, I'll feel weak but human - can then work on my recovery by eating soft food.  That's where Jeff is. 

I'm sorry I've been silent but I've felt like crap.  I promise to get caught up when I can physically write.

Life is sweet.  Treatment is complete for phase 1.  I have three months "off" until another PET/CT Scan.

Thanks everyone for your comfort and support.  I draw on your strength daily.  I can't imagine getting this far without your love and help.

Love...

Richard

June 2, 2010 – Radiation 35 [treatment completed]

I'm wiped out but quite happy.  Radiation treatment is complete.  Music today from was Particle's live soundboard of the show at The Paradise Theatre on 11/15/03 - tracks played were "Make It Real" and "Simulator".   My sister Renee drove me to and from Boston and baked one of her famous chocolate chip cake for all the wonderful folks on L2.  A splendid time was guaranteed for all!

I get to keep the mask, now referred to masque as it has been deactivated.  It's currently living on my bedroom chair!   After radiation, a neck wrap, and a few minor repairs to the old feeding tube, we did the outpatient dispatch paperwork.

I can't keep up with email and phone call flow.  Please understand that I love you all, and will try my best to reply to email after the next week or two; these next two weeks are supposed to be the most tiring and painful of the entire throat, neck, and tongue cancer treatment.

Thank you all for being here with me during this tiring and difficult battle with the disease.  Your love, support, and comfort carried me through these days and will continue to carry me in the days ahead.  I am blessed by your grace and presence in my life.    I LOVE ALL OF YOU!  THANK YOU!

Love...

Richard

June 1, 2010 – Radiation 34 [1 to go] Day (s) (a)

What was once a day so far away, impossible to imagine, crunched in a spreadsheet, a Where’s Waldo hidden digit, lo-ti-qued in a woman leaning against a wall  in Dr. T’s office, will be here tomorrow. 

I am officially short.  As of approximately 10:57:59 am, I will stride from Little Bang’s haven, (LB’s bearing still sounding worn), into the trainers’ room for one more neck wrap and dream the taste of apples and know it is it not a lie but a time equation.  I know the speed of post-Memorial Day mail and I want more at bats baby!

Our day at DFCI started with a flood draw and an appointment with Dr. H..   With the fresh blood numbers, H. decided that further chemo would be counter-productive.  After having the port deactivated and getting a few prescriptions filled, we returned to Haed & Neck Oncology for a meeting with the Swallow Therapist.

Coming out of the Swallow Therapist office was Jeff.  He looks great!  We only had time for a few moments of conversation and a fist bump.  Jeff said the recovery is as advertised: two more weeks of incremental side effects followed by “the day” when you wake up and realize that you feel better today than you did yesterday (that is apparently a beautiful day!)

I am fatigued.  I know I have a rough two weeks head of me.  But I see the recovery personally.  Onward!

As for you, I held you in my dreams, sought you out in my nightmares, and understood minute-by-minute just how alive we are.  Thanks for being here, for your comfort, and knowledge of us.

Love…

Richard

p.s. – Today’s music, Jeff Beck’s “Constipated Duck” from Blow By Blow and “Acsension (Edition II)” from The Major Works of John Coltrane.

May 29, 2010 – Quiet weekend

Dan & Adam just left for Cambridge.  Dan will drive Adam to Logan Airport über early tomorrow.  Ad & Blaze dog will fly to Colorado.  Our sons make us very proud.  They’ve pitched in and cared for us when we really needed them, pitched and cared without being asked. 

I am beat, even after sleeping most of the day.  At some point over the next three weeks, I will wake up feeling better than the day before and make daily progress from there.  For now, I track through the mud and snow, understanding that I will warm again.

I will post very little lightly this weekend.  I need to rest and recuperate.

But I walk around with a smile that YOU put on my lips.  I know I can drive through these next weeks, because I have you by my side.  Your love, comfort, and support raise my spirits.

Love…

Richard

May 28, 2010 – Radiation 33 [2 to go]

You knew this wouldn’t end without a challenge or two.  Today, I woke up over heated and with a slight fever – fever due to the 90+ degrees exterior heat and a well-insulated house – and with diarrhea.  We left early for Dana Farber so the nurses could kick my tires before radiation.  I felt cooled off and better by the time we arrived in Boston.  But Little Bang was sick and down - a bad bearing best my ears could tell!  A machine in Brigham & Women’s Hospital mirrors each machine in Dana Farber’s radiation arsenal.  Off we went, cross campus, to BWH, to meet Little Bang’s twin.

I’m still wiped out and cannot do this story justice.  Let’s just say that Dana Farber gives Little Bang much nicer digs!

I forgot to list yesterday’s music – The Beatles from Rubber Soul and Revolver.  Tracks played were “Here, There And Everywhere”, “For No One”, “Good Day Sunshine”, “And Your Bird Can Sing”, If I Needed Someone”, “In My Life”, “Nowhere Man”, and “Norwegian Wood”.

Today, I introduced Little Bang’s twin to Particle, playing a couple of soundboard live tracks: “Little Wing” and “The Elevator”.

I don’t feel well and will cut this short.  These moments of feeling yucky are expected.  So I need to focus my view real short.  The next two weeks may be a real roller coaster ride.

Here’s where YOU come in.  Your support and comfort keep me going no matter how I feel.  Today, I am leaning on you.  And I so appreciate you.

Love…

Richard