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

May 27, 2010 – Radiation 32 [3 to go]

Yesterday’s contest question was ably handled by BeJae: 

         Fo-wah! Fo-wah!

I remember that Roy Bookbinder used to travel in a motor home and fish during the day at gigs on rivers and lakes. I played right after him at a venue in Oswego, NY years ago. They told stories of his guitar playing and his fishing. They took me to the edge of the great lake at midnight and I felt its power even when I couldn’t see it.

Fo-wah! Fo-Wah!

Looks like code or concrete poetry.  I need t-shirts to hand out.  This is a contest.  There will be a prize, of that you are apprised.  That, and poor grammar!

As for today:

I’m immersed in the Thursday fatigues.  Ready to dive back on the couch.

Thanks all for your love, comfort, and support.  I still hop up on the bench under Little Bang even knowing how I’ll feel in a week.  You give me that confidence.  Thanks for being you!

Love…

Richard

May 26, 2010 – Radiation 31 [4 to go], books

Question of the day: What books are not safe to display on your desk at work?

My answer:  Books can be very dangerous, especially when reflecting contagious ideas, but I’ve never met a book that I’d be afraid to have on my desk.  Of course, I have the luxury of owning my desk for the past twenty years so it’s a bit of a cop out answer.

Your answer: (option in comments)

Today, with the music pumping (or bluesing) out “Four” (as fo-wah) at the perfect moment in time, I felt my mask being unbuckled.  I held up my right hand with four separated fingers and thumb at 45-degree salute pumping!  “Fo-wah!”, I croaked in my very best and loudest croak.  “Fo-wah!” I waved.  Today’s aptly timed musical choice was from Roy Book Binder’s Live Book… Don’t Start Me Talkin…; tracks played were “Black Dog Blues” and “Candy Man”.  This is a contest.  I’m not going to explain the significance of the second track and Fo-wah.  That’s up to you and again in the comments section and again very optional.

We saw a burning car on the Mass Pike, on the way into Boston.

My appointments today were with the acupuncturist, nutritionist, and radiation.  Aced them all.

“…I felt my mask being unbuckled…” - the lights are low during radiation and the music is LOUD (by request!)  Through the mask mesh and without my glasses, I see shadows.  Occasionally with Little Bang set on safety, a tech will come in and make a physical adjustment to my position, to the table, or places I cannot tell because I have not seen (glasses, mesh – see above!)

With the sessions’ length in time being inexact, it’s always a mystery as to when it’s over.  Ok, ok, ok, I know the last routine, probably the whole thing, but there’s GOT to be some mystery!  Like my Montreal cousins say Ey! ?  I do know the length of the songs, though, and today’s session didn’t just seem to fly by, it was under fifteen minutes.  Nice job, rad techs!

Thanks everyone for your support and love.  I’m told that I look great for someone in his last week of radiation.  That’s because of you, sweet family & friends!

Love…

Richard

May 25, 2010 – Radiation 30 [5 to go], Dreams.

Little Bang’s arms elegantly dance to Rebecca Coupe Franks’ horn and the sweet purr of hydraulics.  It’s the same dance for all thirty-five gigs, one I’ve decided not to learn by rote.  Every time I experience it, it’s new to me.  (Though to be honest, I kind of know the finale.) 

Maybe my gift to L. Bang could be to learn and dance in common on my last visit (to be honest, though, Ms. Bang is too surreptitious to let that one slip by, but has a kind heart.)

Today, I spun some funky jazz, Rebecca Coupe Franks’ Check The Box, tracks played: “Life Has Just Begun”, “Thursday”, Exposure”, “Starting All Over”, and Check The Box”.  If you haven’t checked out Rebecca, stretch your ears!  On Box, she adds slick vocals to her mix of medium horns (trumpet, flugel) and keyboards.

5 radiation treatments to go!  FIVE!

Rest of the day went off well.  We’re gearing up for POST-treatment recovery.  Sounds good to me!

Thanks everyone for your comfort and support.  Your love and grace especially helps me on long days like today.   Onward!

Love…

Richard

May 24, 2010 – Radiation 29 [6 to go] : 6 and counting

Today the traffic on the Mass Pike was heavy but the traffic on L2 for Little Bang was light.  The staff drummed on the dressing room door “are you ready yet?”  I was #1 on the runway to my favorite ‘lil linear accelerator. 

Ready-to-roll: Power Port nestled just outside of right shoulder.  ConMed 20 F PEG Tube (second 18mm feed) feeding tube assembly.  Aquaphor neck wrap.

Today’s music was from an old classic live album The Rolling Stones’ Get Your Ya-Ya’s Out.  Tracks played were “Jumpin’ Jack Flash”, “Carol”, “Stray Cat Blues”, and “Love In Vain”.  Had intended to play different tracks (“Midnight Rambler”, “Prodigal Son”) but setup time was short.

Oh well, got off the table with the call of SIX TO GO!  Oh yeah! 

Adam & I went to meet to Dr. T.’s (radiation oncologist) team.  They examined my teeth, throat, and tongue.  My pain med and calorie/protein level were checked.  The skin on the directly irradiated areas of my neck was compared to last week and it was decided that an exterior Aquaphor throat dressing is now appropriate.  My mouth shows the war that going on has neared its peak of collateral damage.  My weight and diet numbers made Dr. T. happy.  He said I’m doing all the things they’ve asked of me.  We briefly reviewed the post-treatment schedule.  Then, Dr. T. and the team left Ad & I alone with nurse Christina.  She cleaned my neck, opened identical sterile plastic transparent pads.  Christina loaded the pads with Aquaphor and form fitted them to my neck.  Then, she rolled a gauze bandage around my neck covering the whole thing.  It’s prime in the photo above.  I will wear a couple of these a day (maybe three) until the end of treatment.

Shortly after Ad & I returned home, Rabbi Seth came for a visit.  Ad had been looking forward to seeing Seth.  The three of us had an insightful conversation about the nature of disease and its effects on family life.  We looked at this nexus from practical, emotional, and spiritual angles.  I cherish my conversations with Seth; they leave me feeling lighter and stronger.

Tomorrow is the balance of my “normal” Monday.  I’ll have blood drawn, get radiation, have a rad wrap put on, see Dr. H. and the medical oncology team, and get complimentary chemo.

I’ll be a tired boy by tomorrow afternoon!

Thanks everyone for your comfort and support.  This has been a very long road and I couldn’t imagine traveling it alone.  Friends and family are nurturing and healing.

Love…

Richard

May 23, 2010 = Sunday + 7 and holding

A weekend of sleeping and resting, days spent trying to heal the body and mind.  My throat is sore on the inside and scratchy & itchy on the outside (radiation burns.)  Seven radiation sessions remain, this coming Monday – Friday and the following Tuesday and Wednesday.  The radiation suite is closed for Memorial Day.

Then, I heal.

Thanks everyone for staying on this trip with me.  It hasn’t been easy, but we are so close to the end.  We’ll walk hand in the real future.  And dance together…

Love…

Richard