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.