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

May 22, 2010 – Saturday

Spending the day resting.  My throat has been quite sore.  Pam & Mark are coming by to visit tonight.  I will spend this weekend catching up on sleep.  I plan to ramp up the postings on Monday.

Thanks everyone for your comfort and support.  As we round the final posts, knowing I am in your thoughts keeps me strong.

Love…

Richard

May 21, 2010 – Radiation 28 [7 to go] finally Friday!

And I am officially exhausted. Fatigued to the max!  My friend Larry drove me to Dana Farber today.  I’d looked forward to the ride with a lifelong buddy, but fatigue/drugged up feeling took over.  We had a lot of family “gossip” to catch up on.  I slept most of the ride both ways.

I was so wiped out that I misplaced the iPhone with “my” music queued and ready for radiation.  (Hid it in my sweat pants pocket!)  The techies played vintage Motown for me.  Nice techies.

So, thought I’d feel better today but am a little worse if anything – that’s the short view.  The long view is that I have SEVEN radiation treatments – SEVEN – left.  That’s cool.

I’m happy the weekend is here.  I hope I do better than sleep.  Adam & Dan are visiting.  We’ll see.  Time to be strong in a different sense.  I could easily sleep all day, but must get my body in motion.

Hope you all have a wonderful weekend.  Enjoy the beautiful Spring weather.  Enjoy friends and family.  You are my anchor and I am so thankful that you are a part of my life.  I never feel alone with you.

Time to write blog: 1:28:48. (hr:min:sec)

Love…

Richard

May 20, 2010 – Radiation 27 [8 to go] – Thursday

This will be another short posting.  Was knocked out even more this morning than yesterday.  Could barely feed myself one can.  Taking a shower was against the currant.  The cause is likely the combination of the upgraded pain patch and the new anti-fungal meds as we ramp up for the final EIGHT radiation treatments. 

I’m finally reaching a reasonable level of coherency.  Hope that by tomorrow morning enough of the chemicals will have washed themselves out of my system (or at least stopped fighting one another) that I can do my 12 minute swallow exercises in under a half hour!  Then again, 45 minutes is better than falling asleep 3 minutes into the routine.  Again!  (As was the case today.)

I actually feel better knowing that this is not all fatigue but rather a mix of meds with some fatigue tossed in.  It’s great to see the countdown at eight and to feel as well as I do (discounting the med waves.)  I’m not going line dancing but I’m not miserable.  I’m real grateful.

Speaking of which, today’s music was from The Grateful Dead’s Road Trips Vol. 3 No. 2 – Municipal Auditorium, Austin TX, 11/15/1971: “Beat It On Down The Line” and “Dark Star>El Paso>Dark Star”.

Yesterday’ music was from iF’s iF 2, tracks played were “Your City Is Falling”, “Sunday Sad”, and “I Couldn’t Write And Tell You”.

I won’t be answering emails until sometime this weekend and then slowly and succinctly.   Libby - thanks for the beautiful watercolor card (by your hand).  Ann's gonna frame it!

Thanks everyone for your support and comfort.  Having you with me on this ride makes this journey seem so much shorter than I ever thought it could be.  Onward!

Love…

Richard

May 19, 2010 – Radiation 26 [9 to go] – Wednesday worn

Nine to go, that’s less than ten, single digits!  I was effusive when I got up off the radiation table.  Now, I’m just tired, real tired, working real hard to stay awake tired.

That was a fifteen-minute three-line paragraph.  I’ll catch up with you later, when my eyes are open.  Probably tomorrow, because I’m ready for bed after my third nap today.

Thanks all for your messages of support and comfort.  Today was a really good day overall.  Will try to get caught up asap.

Love… 

Richard                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            

May 18, 2010 – Radiation 25 [10 to go] – Graduation days

Ten to go; I like the sound of that!

Adam & I left Worcester around 8:45 am, arrived in the lobby at Dana Farber around 10:10 am.  Stopped in the lobby so I could take a Bacliphen – chemo hiccups on the rise.  Went down to L2, so I could work on relaxing the hiccups away.  Sequenced well, too.  Three people jumped slots for me and when the waiting room was empty, my hiccups were gone.  (Or rather, Jim told me they were gone and they were.)  Music for today was again from Dar Williams’ Out There Live; tracks played were “The Christians And The Pagans”, “If I Wrote You”, “End Of The Summer”, and “Spring Street.”

On my way out of radiation, I ran into Jeff & Nancy.  Jim’s last treatment is tomorrow!  (My last is two weeks from tomorrow!  Why does Wednesday suddenly sound so sweet?)  We’ll keep in touch by email, but have had a month (plus) of unique bonding.   Today, we compared radiation burn on the neck (oh, how motivated am I to somehow find a way to add an Aquaphor neck treatment to each day!  Jeff was told that the neck heals in about two weeks), swallow therapy results, and diet/weight trending.  More, we checked on how the other was feeling.  Jeff is very upbeat, ready for these next steps, which do not involve a daily ride to Boston, much as we truly love and appreciate Dana Farber.  I felt like my older “treatment” brother was graduating and I had to wait another “class year” for all the cool stuff at the next level.  While Jeff was getting zapped for 34 of 35 times, I talked with Nancy about our families and future plans.  Thursday, I’ll feel like the senior on the job.  But I will officially be short.

The other main factor in Monday’s speed appointments besides weight (message received, doctors!) was pain control.  Medical oncology (Dr. H.) upped me to the next level of low term pain patch.  Radiation oncology (Dr. T.) suggested, when eating is difficult, to take 3 oral pain meds up from 2.  This will be an ongoing “game” between pain and the meds over the next two weeks.  In this case, I am the playing field, but certainly not the bored.

Thanks everyone for yours words of support.  Today is an up day, so the words feel sweeter, but on the down days, they are my constant comfort and source of strength.

Love…

Richard

May 17, 2010 – Radiation 24 [11 to go] – Speed appointing

Another Monday, another six-appointment day is in the books.  It’s late.  I’m tired.  The rest of this week appears to be light (so far, just radiation Tuesday-Friday).  I’ll summarize today in this posting and then write in more detail about the appointments tomorrow. 

Let’s see, traffic was real light both to and from Boston.  My first stop was at the blood lab for a port activation and blood draw.

 

Next, was a trip to radiation oncology on L2 for treatment 24, which leaves 11 to go!  Thursday, I go below 10 treatments remaining!  Music for today was from Dar Williams’ Out There Live; tracks played were “As Cool As I Am”, “Iowa”, and “When I Was A Boy”.  After the treatment, we saw Dr. T. (radiation oncologist) and his team.

We went up the 11th floor for my appointment with the nutritionist and then with the medical oncologists, the two Dr. H.’s.   Finally, we walked down a flight to the infusion room for chemotherapy.

In the next chair, was a man getting chemo boosters for brachial cancer.  The goal is to keep him in remission until a better approach to dealing with his tumor is developed.  Ann was running errands while his wife and daughter were getting lunch, so he and I had time to talk about cancer, how we approach treatment, and our new perspective towards life.  When I was ready to leave, we wished one another best of lucks and God Bless You’s.  It was an uncommon moment in life.  It was a common moment at Dana Farber.

Ann & I got home around 4:00 pm.  Adam & Blaze dog beat us home.  We all decided we needed a nap.  I napped a long time, even after everyone else was up.  Ann told me I was making “strange noises” – she couldn’t describe them and may set up a tape recorder!  One common thread for the day was the need to hold my weight where it is and put some more on.  I’m down ~7 pounds since beginning radiation.  Much of my pre- and post-nap activity involved cans of formula.  Gonna do my best.

Thanks everyone for you support and comfort.  I am so fortunate and so grateful to have you in my life.

Love…

Richard

May 16, 2010 – Sunday lives up to its name

A short posting is appropriate for a slow sunny day.  I slept in late with Rudy Dog while Ann & Lacey Dog and Pam & Samson Dog & Lily Dog went on a walk through Institute Park. 

Dan arrived a little after noon.  He & Ann & I watched an NCIS episode.  While Ann went in for a well-deserved nap, Dan & Rudy & I visited my parents.

My Mom has successfully taught Rudy the words “CHICKEN” and “KITCHEN.”  He demonstrated his increased vocabulary soon after arriving.  Mom asked Rudy if they should go to the latter to get him some of the former.  He bounced up and down and then sprinted ahead of her when she took her first step kitchen bound.

After we returned home, we relaxed the rest of the day.  I got in a couple of naps and four cans of formula.  Dan’s going to hang out with us until the evening.  Adam is having a good time in Burlington.  Ann suggested he stay another night since he won’t be driving to Dana Farber tomorrow.  Monday will be the standard six-appointment start to the week.  That’s cool; it’s all good.

Thanks everyone for your comfort and support.  We’re entering “the home stretch” not only for radiation but entire initial treatment plan.  Having you along on this journey makes these long days softer and bearable.  So Thank You again.  You are appreciated!

Love…

Richard 

May 15, 2010 – Weak end stomach slip

Had a real surprise this morning.  Ann slipped Rudy Dog under my arm and went to take a shower.  I patted Rudy and dreamed about being dizzy and throwing up, until an epiphany came about.  Thus – if I didn’t make haste to the bathroom sink, I would vomit in bed.  Not a nice vision, even at 9:15 am.

I haven’t vomited throughout the whole chemo / radiation experience.  I haven’t needed the anti-nausea drugs.  So what was going on here?

In the interest of full disclosure, I can count on one hand the number of times I’ve vomited.  There were times I’d wished I could vomit, but was inept and unsuccessful.  At such times as the legendary bad spicy Polish sausage in Pittsburgh, I watched friends relieve themselves of food poison using a single finger, after which I lay in a crumpled heap for days.

My last memory of vomiting before this morning was the week after one of my pre-(grammar-)school birthday parties.  Renee was conducting a scientific experiment: how many plums could Richard eat?  Results were inconclusive; I finished the bag and the bag finished me.  I was wearing my favorite pajamas given to me by Nancy F. my favorite babysitter.  Mom said the pajamas were finished, too.  That bothered me the most, the PJ’s going into the trash bucket.  Sigh…

At any rate, this morning I made most of the way to the bathroom sink and was able to finish there.  Nice early vision of the day, right, glad you stopped by?

Let’s talk about writing a bit.  I’ve been using computers professionally since 1977.  I’m a touch typist.  A touch typist who is off just a bit because of the treatments?  The fatigue?  Bottom line is that it’s getting increasingly difficult for me answer email and write these postings.  At the same time, it’s really interesting to watch my brain and body misfire.  Just so you know, my output is seriously down.  I’ll keep trying.  If one day this is all gibberish, assume I am conducting the monkey typing experiment.  Also, if my email replies are slow in coming, it’s because I’m sleeping.

Sleeping is what I did most of this fine day.  The nap is in and with it I am out.  I’m about to do my fourth can of the day.  It’s an infant like existence.

Thanks everyone for your comfort, support, and prayers. 

Love…

Richard

May 14, 2010 – Radiation 23 [12 to go] – tick tick tick

Adam & I had a slick ride into Boston today – no traffic!  We walked into Dana Farber and even the building seemed in “holiday mode” – comparatively few people around.  Did I miss something?  My best guess was “nice weekend to head to The Cape, The Beaches, NH, VT, ME, or Newport”.  But, uh, was there a holiday?

It was festive down in radiation oncology.  Today was Caribbean Friday.  The staff dressed up in colorful garb and leis.  Reggae music (without lyrics) was pumped into the department.  The staff danced and hula’ed while finishing the setup of Little Bang.  I was locked down in place and the radiation began.  At some point, I noticed that the treatment was taking longer than normal.  When the techs returned, I asked and was told that they had to reboot the machine mid-treatment.  Happy Holiday!

After I changed out of my johnny, one of the radiation oncology nurses checked my incision.  With the care changes (Desitin, Excilon drain sponges), the wound is healing cleanly.

After Adam drove us home, he packed up the car.  He & Blaze dog are spending the weekend up in Burlington, where he did his undergrad work.  It’s an opportunity for him to see friends he rarely gets to see.  When Ad said he was coming out to visit for three weeks, it seemed like such a long visit.  Now, he’s been here over a week and the time seems to be flying by.

Speaking of flying by, as of today I have twelve (12) radiation treatments remaining.  When I started radiation, I didn’t know where I’d be mentally or physically when two-thirds the way through.  It’s not fun, but I’m feeling better than I ever anticipated I would. 

Ann & I have a quiet weekend planned.  I’m hoping to get caught up on sleep before manic Monday.

Thanks everyone for your support and comfort.  I am feeling better than I ever anticipated I would because of you.  You all are my anchor.

Love…

Richard

May 13, 2010 – Radiation 22 [13 to go] – zzzzzzz

The pattern holds true.  Monday and Tuesday, I have energy.  Wednesday and Thursday, I am fatigued.  Today I slept in the car.  I slept traveling near. I slept traveling far.  I napped lying on the couch.  I napped sitting on the couch (and Adam had a whole conversation with me without realizing I was out.)  The doggies snuck out my Visa card and were ordering treats and toys off the Petco website when I woke up just in time.

Ok, a bit of exaggeration but I’m slaphappy.

Today was a light day at Dana Farber.  Adam drove and traffic was reasonable.  I had radiation early.  Today’s music was from Jim’s Big Ego’s Don’t Get Smart recording.  Tracks played were “This Message”, “Ahead Of The Curve”, “Ambition”, and “Love Everybody”.  Then we went upstairs to see the Swallow Therapist.  She went down the set of benchmark questions and declared me on track.  The ride back to Worcester was easy, or so Adam told me.  I slept.

When we arrived home, I camped out on the couch and slept.  I did wake to do a few cans of formula.  The key was to stay conscious until the can was empty.  That was my afternoon and early evening.  Ad wants to watch the Celtics-Cavaliers basketball game with me.  I’ll try to stay awake!

Not an exaggeration; it’s taken an hour to write this post.  And my eyes are sleepy.

Thanks everyone for your support and comfort.  I never feel alone on this journey.

Love…

Richard

May 12, 2010 – Radiation 21 [14 to go] – 60% in

The pattern holds true.  Monday and Tuesday, I have energy.  Wednesday (and Thursday, uh-oh), I am fatigued.  So here I am blogging when my fingers won’t type and my brain looks longingly at the couch.  We’ll give it a go!

Last night, Ann wasn’t crazy about how my stomach tube looked.  At the same time, I had a problem; it was clogged.  I finally snaked the top (where the funnel connects) with a round toothpick and got the liquid flowing.  Ann called Dr. H. the fellow and discussed the tube.  Dr. H. decided that we could wait until the next day when the radiation oncology nurses could examine it.  This morning, Ann thought the incision looked redder and the discharge yellowier (puss like?)  I tried to use the tube, found it clogged again; only this time snaking didn’t clear it out.  Ann decided that she would drive to Boston, so she could be at the examination.  Adam stayed home with the doggies and took on the errands.

We left Worcester around 7:30 am.  After doing my swallow exercises (now my car ride routine), I fell fast asleep.  My first appointment was acupuncture at 9:30 am.  We arrived in plenty of time.  While I was getting needled, Ann went to the food court for a snack and the optician to look at glasses.  (She was successful at finding both a snack and new frames.)  My second acupuncture session was more relaxing than the first and the first was calming.  It seemed I was on the table longer, but that was all perception.  We got into the treatment with little conversation and time stretched out.  I drifted in and out of sleep.  The acupuncturist returned, eased the needles out (cannot feel them going in or out), asked me some questions related to the session, and wished me a good week.  I like him; his presence alone is soothing.

Ann & I walked over to radiation oncology.  I scanned in while Ann located a nurse.  I was next on Little Bang, so the nurse went to set up an exam room.  Today’s music was from Bob Dylan The 30th Anniversary Concert Celebration.  Tracks played were “It Ain’t Me Babe” (performed by Johnny Cash & June Carter Cash), “What Was It You Wanted” (performed by Willie Nelson), “I’ll Be Your Baby Tonight” (performed by Kris Kristofferson), and “Highway 61 Revisited” (performed by Johnny Winter).  I saw Jeff on the way out.  He looked a little haggard but well.  He has five treatments left after today and is very happy about that.  We agreed that once you’re past twenty treatments, you feel like the end is in sight.  For Jeff, the light at the end of the tunnel is bright!

After radiation, the nurse took us to an examining room.  She looked at the tube area with Ann and didn’t think there was an issue (e.g. infection) but decided to call in one of the resident physicians.  Next, she fiddled with the tube itself and showed us a couple of tricks to get the fluid flowing.  While I was doing a can, the resident arrived and began to examine the tube incision.  Ann pointed out her areas of concerns.  He didn’t see an immediate problem, but decided to check it for the next two days now that he had a baseline for comparison.  He also suggested using Desitin and pads that will cushion the tube to help the healing.

Our day at Dana Farber complete, we headed back to Worcester.  In the car, I did my swallow exercises and then fell into a deep nap.  When we returned home, Ann & I went back to napland.  Wednesday equals fatigue.  I tried to return a few emails/postings but kept falling asleep.  So, I took another nap.  Now, I’m yawning, spacing a bit, but managing to write.

Thanks to the folks who wrote about the current nature of this blog.  It truly helps.  And thanks everyone for your prayers, comfort, and support during these challenging days.  You smooth out the bumps in the road and keep a smile on my face!

Love…

Richard

May 11, 2010 – Radiation 20 [15 to go] – Blog query

Remember how excited you were when you turned 20?  (Ok, the drinking age in Massachusetts was 18 then.)  A new decade for that “age” line on forms, the end of the teenage years (like right!  Whatever.)  Today was radiation treatment #20.  Big psychological push; I’ve made it this far and overall feel good, certainly better than anticipated (by me.)  Today’s music was from Rilo Kiley’s More Adventurous.  Tracks played were “Portions for Foxes”, “A Man / Me / Then Jim”, “It’s a Hit”, and “Does He Love You?”

Adam drove me in for the first time this morning.  Traffic on the way in was light as far light is defined in Boston.  Going home, it was a breeze.  Both legs, we listened to music (Ray Wyle Hubbard’s Growl and Various Artists’ D.I.Y.: The Modern World – UK Punk II (1977-78).  Mostly we talked.  Ad & I have our best conversations when it’s one-on-one, no one else in the room to intrude on a flow we have going.  Fun rides!

Oh, and Adam got the 25 cent tour (as opposed to the normal 10 cent tour) of the radiation control and treatment rooms.  I think the combination of his warm personality and Applied Math career gave him a leg up.

I’m writing this post mid-afternoon.  Lately, many of my posts are written after dinner.  I’m tired, less focused, and try my best.  But the posts feel formulaic: a list of the day’s treatments and appointments, a little about the commutes, and a little about home.  I write with what feels like little flow.  Little flow does not do Little Bang justice!  I don’t know how the posts feel like on your end.  Hopefully, not a yawn.  In the future I resolve to, whenever possible, write earlier in the day when my mind is clearer and there are not extraneous activities (TV, supper being made and devoured by humans with functioning taste buds) going on in the background.  I really care about YOU and want to give you the best I have.  And I care about writing, hate being sloppy, and prefer to avoid responses like the one from Mr. Ramsey, always communicated most eloquently with his eyes, “and why did you give me this to me to read?”  I think that look was the precursor of the “now I have 15 minutes I’ll never get back” line from current pop culture.

I know I write this everyday and there are a limited number of ways to express it, but I do so because I really mean it.  Your support and comfort get me through the days, especially the dark hours.  Today, the sun is pouring in through the living room windows and it makes me feel very happy.  I think of you as the sun.

Love…

Richard

May 10, 2010 – Radiation 19 [16 to go] – Little Bang rocks!

Today is busy Monday.  It’s catch as many naps as you can on Saturday and Sunday to be ready for Monday, Monday.  And you can’t trust that day, or at least some appointment times that day. 

We woke up early.  As soon as I washed up and took my meds, I set up the PEG tube and did a can.  Northing like the aroma of formula in the morning (sigh… coffee.)  Ann & I left for Boston around 6:30 am.  It was a rugged ride on The Mass Pike, lots of stop and go and snaking traffic. 

We arrived at Dana Farber a little after 8:00 am.  While Ann parked the car, I went up to the 11th floor lab to have blood drawn and my port prepared for chemo.  When I came out of the lab, Ann was there and we walked over to Head & Neck Oncology.  With an hour before my next appointment, we sat down next to windows streaming sunlight and read.

At 9:30 am, it was time to meet with the two Dr. H.’s.  I reported increased fatigue and pain, both normal for this stage of radiation with booster chemo treatment.  My blood numbers continue to be good.  After a mouth examination, we discussed pain control.  The Percocet are less effective than they were a week ago.  My mouth and tongue have large sores.  The doctors decided that the best option is moving to a patch.  We’ll start small and work the way up (by using liquid Percocet to supplement) until the right level of pain control is reached.  With the patch, there are (of course) new side effects to consider.  Oh, boy!

At 10:00 am, we took the elevator down to L2 and the radiation oncology department.  I scanned in and donned a johnny.  One of the nurses came out and said Dr. T. (radiation oncologist) was ready to see me.  Dr. T. examined my throat and noted some potential fungal growth on the inside of my mouth and on my tongue.  He started me on a med to address that.  We also covered much of the same pain management conversation (as with the Dr. H.’s.) 

Next stop was a visit with Little Bang, session 19 – 16 to go.  Today’s music was from Barbara Kessler’s second recording Notion.  Tracks played were “Jane’s Last Day”, “That Hurricane”, “At My Age”, “The Date”, and “Kathy”.  Barbara is a Boston songwriter and graduate of The Old Vienna Kaffeehaus.

The day was really rocking along as we headed up to the infusion room.  My slot was at 11:30 am and we were there at 11:00 am.  There was confusion in infusion.  The details are not relevant.  Our experience at Dana Farber has been so wonderful and caring.  Short story is that we had a two-hour wait, but the chemo was well delivered.  While we waited, the nutritionist met with us.  She was happy.  My weight varied by 0.1 kilograms this week to last.  We reviewed my diet for the coming week.

Our ride to Worcester was smooth and easy.  I napped part of the way.   Once we returned home, I napped the rest of the way.  I started the day wary about my fatigue level and increasing pain.  At every step, someone at Dana Farber has a proven solution to deal with the problem.  The next three+ weeks aren’t going to be easy, but I feel confident that with the care at Dana Farber, it will all be manageable.

And because of you, family & friends, I feel at ease with the coming month.  Your support and comfort will see me through.  You are the best!

Love…

Richard