April 30, 2010 – Radiation 13 [22 to go] – Tubular!

I’m tubular.  I can eat and talk at the same time.  I’m also passing out from the lingering anesthesia as I type.  Here are a couple of tube photos:

The folded white piece on top of two bandages is a Velcro holder.  It keeps the tube in place when not in use.  The clear piece with a cap above the yellow connector is where the formula (via the syringe funnel) is poured.

 Over on the left in the second photo is the Velcro holder.  In photo one, we saw one end of the tubing going to where the formula is poured.  Here we see the other end of the tubing going through a white clasp and then into my stomach through a hole anchored by two bandages.

April 29, 2010 – Radiation 12 [23 to go] – riding with Jesse

It’s a sunny but windy day in Eastern Massachusetts, good traveling weather.  Jesse picked me up at 7:15 am; we wanted to allow some extra time in case the traffic on The Mass Pike got dicey.  The ride in was straight into the sun.  Jesse packed some jazz, a Steven Colbert audio book, and a few CD’s for the trip.  We really didn’t need much diversion.  When you’ve known someone as long as I’ve known Jesse, there is a deep well of conversation open and waiting.  We talked about our families, especially what the kids, now adults, are doing; and how quickly that transition from toddlers to adults swept by.  Jesse & I are small business owners in Worcester.  Discussing the challenges of operating a company in this city in this economy always occupies us.  This year brings added complications and with them, a search for new solutions.  Wherever our conversation leads us, we return to family.  It’s the ultimate destination.  Qvelling is good for the soul!

We arrived at Dana Farber with plenty of time to spare.  First stop was an appointment with Nutrition, part of the preparation for tomorrow’s feeding tube insertion surgery.  The nutritionist reviewed my current food intake and approved of it.  She talked about the transitions I may go through over the next month due to the side affects of radiation.  Some patients are able to eat sufficient amounts of soft food and use the tube only for booster calories and protein snacks.  Others have more pain and difficulty swallowing and the tube becomes the primary source of nutrition.  I will meet with the nutritionist weekly both for training on using the tube and for adjusting the mix of my diet.  Some the meetings will also include the Speech & Swallow Therapist; the two fields have a large overlap.

We had a little spare time before radiation, so we went up to Head & Neck Oncology to straighten out a snafu in appointments.  With that resolved, we took an elevator ride from the 11th floor to L2, land of nuclear medicine.  I scanned in and we headed over to Little Bang’s waiting room.  It was empty.  I changed into a johnny and checked the waiting room’s monitor.  Little Bang, on time at scan in, was now in a 15-minute delay.  An older gentleman came into the waiting room, dressed for radiation.  He has the slot before me and is the veteran of our group.  After today, he has three treatments left.  We have brief conversations and his sense of humor shines, but it’s obvious that his throat is painful.  He wished me well on the tube insertion.  I congratulated him on being short.  After he went into radiation treatment room, Jeff arrived.  Today was radiation #21 for him, #12 for me.  We talked tube a bit.  Jeff asked me if I am a stomach sleeper.  I replied, no a back sleeper.  He smiled and said one of the worst parts of the tube was changing from his regular chest down sleeping position (which pushes on the tube) to his back.  Soon, my name was called for radiation.  I passed the older gentleman and wished him luck.  He wished me the same on my tube surgery.  I noticed the raw burn marks on his neck.  As I rounded the corner to the radiation treatment room, I heard Jeff congratulating him.

My radiation treatment followed its now familiar rhythm.  Today’s music was from one of Boston’s seminal New Wave bands during the punked out period of 1977-1982: Robin Lane & The Chartbusters.  From their self-titled first recording, I played “Don’t Cry”, “When Things Go Wrong”, “Without You”, “Why Do You Tell Lies”, and “I Don’t Want To Know”.  Ann & I used to catch Robin and the boys live often, before and during the early days of our marriage.  Those early 1980’s styles were rad.  The techs liked the tunes, got them dancing a bit!

On my way back to the waiting room, I passed Jeff (he has the slot after me) and he patted me on the back and wished me good luck with the tube.  I wished him the same on his treatment today.  We’re members of an exclusive club and understand what lurks in the spaces between our words.  The waiting room was full on my return.  It ebbs and flows.

Jesse & I left Dana Farber and headed around the corner to where his nephew Mark lives.  Jesse & Susan are going to take care of Mark & Jen’s dog Beso for the next week and we were picking the pup up.  We decided to have lunch before driving back to Worcester.  Mark recommended Charley’s Diner, a neighborhood landmark that opened in the 1920’s.  (I wonder if my grandparents ever ate there?)  Charley’s was great.  The food was excellent, the portions large, and the décor and ambience were from another era.  After lunch, we packed Beso into the car and drove west through light traffic.

Jesse & I had time for more conversation on the ride home, amid my swallow exercises (I checked out other cars – no one noticed the odd movements of my face.  I was disappointed!)  Beso was quiet for the entire ride.  Good doggie!

This morning, I was a bit apprehensive about the tube surgery.  Kind of odd; the thought of it hasn’t bothered me.  Go into day surgery, take a nap, wake with a tube.  Seeing Jeff and the DFCI staff today eased my apprehension.  Maybe today, I’m being a bit normal.

Please note:  if I'm coherent after the anesthesia, I'll post to the blog tomorrow.  It's possible that I'll just sleep all day and night.  So, please don't worry if I miss a day.  I will try to at least get a few words up here.

Thanks all for your support and comfort.  Having you along with me on this journey makes the path clearer and the footholds softer.

Love…

Richard

April 28, 2010 – Radiation 11 [24 to go] – for Tx

I think I'm into my radiation pattern:  Monday when I get chemo with the greenie steroids and Tuesday, I have plenty of energy (it's also after a weekend's rest.)  Wednesday to Friday, fatigue sets in and all I want to do is nap, nap, nap.  This weekend I'll be sleepy and maybe a little sore after having the feeding tube surgery on Friday.  It's an easy procedure; I take a "nap" and wake up with a tube.  Simple, huh?

Jeff, who is going through the same treatment protocol for throat cancer, had his 20th radiation treatment today.  He's a good model for me.  We both don't smoke or drink, love to exercise, and eat healthy.  Yeah, he's 40 and I'm 57, but we have a lot in common.  His attitude mirrors mine.  Bring It On!  So, I ask him how he feels and I get an upbeat answer.  He also tells me about some stuff he's hit that I will hit soon.  For instance, the tube will be sore the first week until the surgeon pulls it out and manipulates it.  After that, it’ll be much more comfortable.  I feel fortunate to have my radiation treatment back-to-back with Jeff.

Ann & I left Worcester around 9:00 am for my 10:40 am slot.  I went to sleep early last night and my alarm went off at 7:30 am.  Took me almost four minutes (one song on the CD I have cued as a wake up tune) to drag myself out of bed.  Big shock, I napped on the rides to and from Boston!  Radiation treatment went fine.  Today’s music was from Ray Wylie Hubbard’s Growl – tracks played were “Rooster”, “Screw You, We’re from Texas” (the special request for Little Bang, my Novalis Tx), “Rock ‘n’ Roll Is A Vicious Game”, and “Stolen Horses”.  I think the techs like Texas.

When we returned home, we had lunch.  Ann left for work and I got some errands done and answered a few emails.  Rudy Dog & I took a nap, or tried to.  Lacey kept whining for dinner – an hour early!  Rudy and I were not amused.

Last night, I finished Mariantes’ Matterhorn.  Thought the author found a satisfactory ending for the book just when he seemed to have written himself into a corner.  Started (still on my Kindle) Seth Grahame-Smith’s Abraham Lincoln: Vampire Hunter.  Ok, after Matterhorn, I need a bit of fluff and this book sounds like intriguing historical fluff.

Tomorrow, Jesse will drive me to Dana Farber.  We’ll have lunch in Boston.  I’m looking forward to a fun day.

Thanks everyone for your messages.  Your support and comfort keeps me rolling through these days.  I appreciate every zoom you send my way.

Love…

Richard

April 27, 2010 – Radiation 10 [25 to go] – Swallows

Today marks 10 radiation sessions in the book, twenty-five to go.  It’s good to be in double figures!  We’re on the new Little Bang time, moving from 8:40 am to 10:40 am.  Jeff (& Nancy) has the block after me.  It’s always good to see Jeff looking well and he says he feels good.  He’s about two weeks ahead of me on the same treatment protocol.  Today’s music was from SONiA (of Disappear Fear)’s recording Almost Chocolate – tracks played: “Fallin”, “Tattoo”, “13”, and “November Or Nothing”.  I have a special request for Little Bang via email that I’ll play for her tomorrow.

This is a special drive to Boston week by Susan & Jesse (Tuesday and Thursday.)  They’ve have been friends with Ann & I throughout our married lives.  Our children grew up together and remain close.  I’ve known Jesse since I was in diapers (no jokes, please.)  We grew up a street apart and his backyard was on the way to my Nana & Zady’s home.  Jesse’s Mom would wave to me as I passed by on my walk to or from.

Today, Susan drove me to Dana Farber.  We had a fun ride in heavier than expected traffic (then again, is there such a thing as expected traffic in Boston?)  I warned Susan that many of the people working in the clinics are “kids”, i.e. the age of our children.  We talked all the way into town.  With nearly thirty years of history and a pretty interesting now, we barely skimmed the surface of topics.  We did get enough political venting in, complete with accents.

The first appointment was with the Speech & Swallow Therapist.  Susan is an Occupational Therapist.  I asked if she wanted to sit in on the session and she did.  As we began, M., the Speech & Swallow Therapist, brought in a Clinical Research Coordinator, who presented me the opportunity to participate in an acupuncture trial.  The trial will attempt to determine whether acupuncture can make swallowing easier during treatments (radiation and chemo) and whether it can facilitate the healing process.  Ann & I will sit down and figure out if the scheduling is doable.  I am ready and happy to participate in any research at Dana Farber.  Whatever makes if easier for the next person coming in the room is meaningful.  After the presentation, M. ran through her series of weekly benchmarks, checked my mouth and tongue (what’s a trip to DFCI without a tongue depressor invading my oral cavity?), and watched me swallow.  She prepared me for the coming changes in swallowing as I move forward with radiation treatment.  Susan and M. talked a bit about their training and clinical experience.  I was glad that Susan had a bit of the day.

After Speech & Swallow, we headed down to L2 to the radiation department.  After my treatment, Susan checked me for fresh meshface.  Yup, forehead to chin to neck.

We had a nice ride back to Worcester, time for more conversation.  When I arrived home, Ann was already here on her lunch break.  Lunch sounded good, so I made a tuna salad sandwich.  Sandwiches are getting to be more of a challenge even with Percocet.  Ann left for work.  I did my swallow exercise set #2, then hopped back onto my Kindle and read more of Mariantes’ Matterhorn.  Fed the dogs dinner and took them out for a run.  Then, I rode the LifeCycle for twelve minutes at half resistance.  Ann returned from work and our friend Pam brought in supper from El Basha, babaganoush with pita bread and lentil soup.  We’ve known Pam since our children were in preschool.  It’s a real blessing to have friendships that span decades, so much life in common.

Tomorrow is a light day at Dana Farber, just a radiation treatment.  That’s good because Thursday and Friday will be busy days.  Hey, by the end of the week, I’ll have 12 radiation sessions and one feeding tube in!

Thanks everyone for being here with your support.  It’s your company and comfort that makes this journey much gentler.

Love…

Richard

April 26, 2010 – Radiation 9 [26 to go] – Manic Monday

I am a real doofus when it comes to pain medication.  One of the suggested uses for Percocet during radiation treatment is to reduce mouth, tongue, and swallowing pain.  The concept is that the patient takes the med an hour before a meal.  Last night, I undertook the utilization of this complicated correlation and was able to eat my dinner with ease.  Doofus is the technical term.  My picture is in the dictionary.

Mondays are manic days for Ann & I at Dana Farber.  Throughout the radiation treatment cycle, I will have at least five appointments that day.

Today, I got started at 8:00 am.  My port was activated (a tube was put in for chemo) and blood was drawn.  We haven’t had a port issue until today.  The channel flushed and seemed to be fine, but the nurse was having trouble getting blood out (usually it flows easily.)  She used different syringes and vacuum tubes without much luck.  Then, a series of flushes was tried.  That seemed to do the trick.  The nurse thinks there was a small piece of coagulation that acted like a flap when she tried to draw blood.

Our next stop was down in nuclear medicine.  First, we met with Dr. T., the radiological oncologist.  He checked out the condition of my mouth, tongue, and throat.  I seem to be right on schedule.  Dr. T. discussed what the coming week will be bring, both with treatment side affects and the insertion of my feeding tube.  We talked a bit about pain management.  I told Dr. T. my Saturday night grinder story and he advised me that it might be a few months before I can swallow a sub roll comfortably.  But, it’s something to look forward to; it’s always the simple things.

We walked across the nuclear medicine lobby to Little Bang’s waiting room.   After a short wait, I was called.  I took off my glasses, hearing aids, and undid the top of my johnny.  The radiation techs saw my enabled port and decided that my mask needed a little customization.  They placed the mask lightly over my face and chest to mark off a rectangle where the port’s needle and tube sit.  Then they got out scissors and cut the rectangle away.  The techs assured me that the mask felt no pain.  When they locked me in, the mask felt as tight as ever.  I wished Little Bang a good morning and she started running my radiation program.  Today’s music was from Richard Buckner’s first recording Bloomed, tracks played were “Blue and Wonder”, “Gauzy Dress in the Sun”, “Rainsquall”, “Surprise, AZ” and bit of “Daisychain”.  There’s nothing like the sound of a yearning pedal steel in the morning.

I changed out of my johnny, which means I took the johnny off and put my t-shirt and sweatshirt on, and we went to the next stop of the day, Head & Neck Oncology.  I checked in and my vitals were taken.  My weight clocked in at 149.8 pounds.  I expected to be a few pounds heavier after the week’s gorging, but I’m still within six pounds of my pre-cancer treatment weight.  Our appointment was with Dr. H., oncologist and team leader, and the other Dr. H., the hematology/oncology fellow.  They started with a physical exam of my mouth, tongue, and throat.  Next was a review of my blood profile from today’s draw.  My red count is still low but it improved over the past week.  The intensive chemo is still in my system, likely causing the lower counts.  I told the doctors that I added fish to my diet to increase my protein intake.  Unfortunately, my nutrition numbers weren’t available from the lab (those tests take longer) so we don’t know where my protein level is.  At this point in the radiation treatment, my daily medications were evaluated.  Dr. H. decided to simplify my daily intake and stop most of my non-cancer related meds until radiation is completed.  A related goal is for all daily meds (cancer treatment and general health) to be administered in liquid form either orally or through the feeding tube.  Dr. H. asked me how I tolerated my first booster chemo treatment last Monday.  Other than hiccups, fatigue, and chemo brain (I left out the shopping trip story), I was fine.  Dr. H. alerted me to potential side affects as we move forward.

We took the stairs next to Head & Neck Oncology down a flight to the infusion room.  I checked in and Ann & I sat down to wait for my slot.  It’s fortunate that we enjoy reading.  Waiting time becomes reading time.  Chemo time becomes reading time.  My name was called and I was directed to my favorite chair in a corner with windows on both sides.  It’s the same chair I was sitting in last month when cousins Al & Darlene arrived at the next chair for Darlene’s infusion.  As the nurse began to set up, my iPhone dinged.  I checked the phone and there was an email message from Darlene in my Inbox.  Cool!  I love serendipity!  Of course, I replied immediately and told her where I was.  The nurse handed me a cup of pills including three greenie mega-steroids.  We’ll see if the insomnia gnome visits tonight!  I was hooked up and the chemo booster was delivered in under an hour.  It was still before noon, five appointments/treatments in under four hours – very slick!

Ann & I decided to go to the food court for lunch.  Being aware of my doofus tendencies, I took Percocet around 11:00 am in anticipation of chewing and swallowing activity.  Ann chose Subway.  I was looking for a wrap, but Subway replaced the wrap with flatbread, which looked soft.  I had tuna with veggies.  Ann picked her favorite, a 6-inch Sweet Onion Chicken Teriyaki grinder on wheat bread.  I was able to eat the flatbread sandwich with just a little discomfort (had to suppress my habit of eating fast.)

I think our ride home was easy.  I closed my eyes on Storrow Drive (Boston) and opened them on Route 146 (Worcester.)  Once home, the couch beckoned.  Rudy and I assumed the position and napped while Ann ran a series of errands.  I’m feeling good today, even after the pace of the morning.

This week, we’ll have help on commuting to and from Dana Farber.  Our friends Jesse (Thursday) & Susan (Tuesday) will drive and hang out with me during my appointments.  We really appreciate this.  Ann will be able to schedule two full days of patients.  The pace of her work and my illness is a lot to manage.  Wonderful friends are a true blessing.  Thanks, Jesse & Susan.

I’ve got the rhythm of my swallowing physical therapy down.  I did a set on the way to Boston and another set on the way back (wait – we stopped for gas – I just remembered that!  I must have woken up.)  Did anyone in other cars catch me doing the exercises?  They involve weird stretching of the face and sundry ways of sticking the tongue in, out, up, and down.  I should notice the other drivers.

Thanks everyone for your kindness and consideration.  Your comfort and support make my days brighter and my treatments lighter.

Love…

Richard

April 25, 2010 – The nap king, not the napkin

First of all, a couple of clarifications.  Dr. T. is not my radiologist but my radiological oncologist.  Big difference.  BeJae has named the Novalis Tx linear accelerator that radiates me “Little Bang”.  I’ve adopted that name, but began using it without explaining it.  BeJae is brilliant when naming cats, dogs, and apparently linear accelerators.

Dan stayed late last night and we ordered in from Blue Jeans.  He had the penne marinara.  Seeking more protein, I had a large tuna grinder (grinder is Massachusetts talk for a sub sandwich.)  I discovered that in addition to my taste buds going south, the interior of my mouth had continued to degrade.  It hurt to eat the bread!  Realizing that this may be my last grinder until June, I balanced the pain with sheer enjoyment of eating.  All that for fresh baked Italian bread, tuna with low-fat mayo, lettuce, tomato, onions, and pickles?  Hey, you take your treats when and where they’re available.  It’s all perspective.  The PET feeding tube gets installed on Friday.  The tube will be my new friend.

Slept in late this morning, until nearly 9:00 am, and did my usual morning things.  I figured that Cheerios are out for now and opted for soft and smooth Cream Of Wheat, the hot cereal that carries childhood memories.  I was concerned because Cheerios has a lot of Iron, which I need.  Turns out, a single serving of Cream Of Wheat has 50% of the Iron RDA and I eat a double serving.  So I’m better!

Ann & I hung out reading, watching our HGTV home improvement shows (we have lots of tips saved up), and talking.  I did my first set of swallow exercises and found them less comfortable than yesterday.  I see a trend.  Rode my LifeCycle for twelve minutes at half my normal resistance, drank a bottle of water, and had lunch.  It was about 12:30 pm.  I lay down on the couch and asked Ann to wake me if I still was asleep at 2:30 pm.  We planned to visit my parents this afternoon.

Ann woke me at 2:30 pm, but it took me fifteen minutes to reach the sitting position.  Rudy Dog napped with me and suggested we remain curled up on the couch.  I found my feet and walked around waking step-by-step.  Then it was time for swallow exercises set two.

Ann & Rudy & I soon left to visit my parents.  As is the norm for a Sunday visit, we watched sports while we talked.  Dad was none too happy with the TV.  The Celtics lost but lead the series 3-1.  The Red Sox were ahead 4-1, when the knuckleballer Wakefield was pulled from the game and the reliever promptly gave up three runs to tie the score.  Conversation easily won out over sports!  Rudy is always happy to see my parents, even happier when Mom takes him into the kitchen and spoils him with a little chicken (white meat only for Rudy Dog.)  Ann & I teach our dogs not to beg.  The lesson is a bit looser at Mom & Dad’s home.

Tomorrow is a busy day at Dana Farber with five scheduled appointments: blood draw, radiation treatment, meet with Dr. T. the radiological oncologist, meet with Dr. H. the oncologist and team leader, and chemotherapy infusion.  Sounds like a fun day!  Last Monday, Dr. H. noted that my red blood cell count and protein levels were lower than he liked.  I’ve spent all week watching my Iron and being certain that my meals maximized my protein intake.  It will be interesting to see where my blood levels are tomorrow.  I’ve been quite fatigued since Thursday, which goes hand in hand with the worsening condition of my mouth from radiation.  Fatigue is also a sign of low red blood count.  I hope my red blood cell count is up in the normal range or at least shows significant improvement.  I would like to avoid a blood transfusion.  But whatever I need, just Bring It On!  Knew this whole treatment process was not going to be pretty when I signed on.  Also was very grateful to be able to sign on, that a successful protocol is available.  We live in amazing times.

Thanks everyone for notes and good wishes.  You are a constant well that I draw on for comfort and support.  You make this journey gentler for me.

Love…

Richard

April 24, 2010 – Tired boy, take 2 (3, 4, ?)

Slept until 8:30 am this morning, had my Boost breakfast, and did my morning computer thing.  Ann got up around 9:00 am and we ate breakfast and talked about the day.  The sun was already pouring into the house.  I did my first set of swallow exercises.  One of the exercises involves yawning.  Didn’t need to fake that!  Around 9:30 am, I fell back on the couch.  Next I knew it was 11:30 am and mandatory time to get up, wash up, and get dressed.  We had company coming!  I took one longing look at the couch and got myself going.

The condition of my mouth is changing day to day from radiation in a way different than from chemo.  With chemo, the mouth sores and breakdown of the cheeks happened quickly and seemed to focus on particular spots.  Today, I continue to feel the gradual breakdown of my entire mouth.  It’s a little sore, an indication of what’s to come.

At noon, Ann’s Dad Bill & his girlfriend Mary arrived.  Dan came into the house a few minutes later.  Dan and Mary were meeting for the first time.  We sat and talked for a half hour or so and then drove to Uno in downtown Worcester for lunch.  Neither Bill nor Mary had been to an Uno restaurant before.  We had a lovely meal.  Between the four of us, we managed to take advantage of the diverse offerings on the menu.  I think the highpoint was the shared dessert, Chocolate Malt Cake accompanied by two scoops of ice cream all covered with chocolate sauce.

During my meal, I discovered that my taste buds had decided to head south.  I couldn’t taste my salad or vegetable soup.  Uno vegetable soup is a favorite treat.  Both the salad dressing and the soup burned my taste buds, not so bad I couldn’t eat, but enough to make me aware of what’s to come.  I’ve had a nice food “vacation” the past weeks.  I’ve enjoyed tasting my food and looking forward to eating different meals.  As I head into the next steps of radiation side affects, I will anticipate the full taste of food.  The past weeks are a real motivator as I look to the future.

After lunch, we returned home and sat and talked some more.  Bill & Mary set off for home in mid-afternoon.  I did my second set of swallow exercises, and then the couch beckoned.  I caught another deep nap.  My body is telling me that I need both sleep and exercise.  Next week will be busy, five days of radiation mixed with other appointments at Dana Farber.  Monday is chemo day with five stops on the agenda.  Friday, after radiation, the insertion of my feeding tube is scheduled at Brigham & Women’s Hospital.  Sleep and exercise sound good.

Oh, I wondered how it would look if I did my swallow exercises at a restaurant.  What would people think?  And would I empty the room?

Got wonderful news via Cousin Arlene yesterday.  Darlene’s CT/PET scan showed that she is cancer free.  That is beyond wonderful!

Thanks everyone for the messages of comfort and support.  I feel the love and it brightens my days.

Love…

Richard

April 23, 2010 – Second post of the day: Meshface

Am I tired today?  I forgot to post this earlier on the blog – Meshface:

I rode the LifeCycle for 12 minutes at half intensity.  Smooth ride.  That pogged my memory.  Yeah, let’s say that did it!

Love…

Richard

April 23, 2010 – Radiation 8 [27 to go] – tired boy!

Eight radiation treatments down, twenty-seven to go!  Bring It On!  Though I must admit I'm happy to have the weekend off.  I remember thinking that 35 straight days without a break might be better.  Uh-uh, which I will say with more conviction as the side affects ramp up.

Between five straight days of the drive to and from Boston, the treatment plus whatever other appointments I have that day, and I guess getting up at 5:30 am to be at Dana Farber on time, I'm kind of worn out.  Was exhausted today when I woke up.   Slept on the way in (don't worry, Ann was driving!), I think napped during the treatment, and slept from 9:30-11:30 when we got home.  I may have napped all day, but we have an appointment (at the house) this afternoon and papers to sign, so I needed to get up.  Still hope to ride the LifeCycle this afternoon, think it will give me a burst of energy.  Moderate exercise is that way for me.  And is recommended by my medical team to improve the speed and efficacy of my healing.

We left Worcester around 6:30 am.  Despite encountering a temporary parking lot on the Mass Pike due to a van accident, we arrived at Dana Farber around 7:45 am.  I scanned in, dressed in a johnny, and got called in before I sat down in the waiting room.  Music for today was from The Nields’ Bob On The Ceiling – tracks played: “Be Nice To Me”, “James”, “Just Like Christopher Columbus”, “Merry Christmas, Mr. Jones”, and a little of “Ash Wednesday”.  This CD is one of a group that is special to me, the hot recordings when I first started doing my radio show back in the 1990’s.  Odd to think of how long ago that really was.  My life was enriched by all the wonderful artists I met in studio, by the friends who remain friends over the decades.

I’m ready to enjoy this weekend.  We have plans to go out to restaurants with friends and family.  The side affects from radiation are kicking in and I won’t waste any time anticipating them.  I’ll just eat my way there!  With vigor!

Thanks everyone for your support and comfort.  I never feel alone and look at all the cards piled on the windowsills and at all the email messages sitting in the “Alien” folder on my MacBook and realize how lucky I am to have you in my life.

Love…

Richard

April 22, 2010 – Radiation 7 [28 to go] – Little Bang delay

Alan drove me to Boston again today.  The traffic was quite light.  We reached Dana Farber around 7:40 am. All week, I’ve arrived early, just as the nuclear medicine department opened, and completed my radiation treatment before 8:00 am.  When I scanned in today, the display showed a fifteen-minute delay on Little Bang (my Novitas Tx.)  We walked over to the waiting room and found it filled with patients in johnnies.  So, we had to wait.  My appointment is 8:40 am and I was called right on time. But not early, I’ve become so spoiled.  Today’s music got the techs a rockin’ – from Brother Trucker’s Something Simple, “Side by Side”, “Harold’s Barber and Beauty”, “She’s in Texas”, “For J”, and a taste of “Who’s Got Your Back?”

Today was treatment number 7, officially 20% through radiation!

I’m beginning to feel mild side effects from the radiation treatment.  My dry mouth is a bit more pronounced each day.  When I eat a sandwich, swallowing is little uncomfortable.  My cheeks (interior of mouth) are lightly pitted.  Fatigue is gradually increasing.  For now, I can still eat with abandon (or what one might call normally.)  I’m going to enjoy my meals this weekend and splurge at every opportunity!

Alan dropped me off at home around 10:30 am.  We had another day of wonderful conversation, though fatigue slowed me down a bit.  I had a few phone calls to make and my swallow exercises to do.  Then I lay down on the couch for a rest that turned into a deep nap.  Ann took her lunch break around noon.  She picked me up and we went to Friendly’s to eat.  I had a hankering for French fries, which I fulfilled.  When we returned home, I went back to the couch and slept until 3:30 pm.  My need to sleep today overtook my desire to ride the LifeCycle.  That’s ok.  I’ll listen to my body and ride tomorrow.

I’ve run through the swallow exercise routine for three days now.  The routine needs to be done three times a day.  I’m quite familiar with the rhythm of physical therapy.  The big challenge is learning the exercises and the order of performance until it’s second nature.  I plan to maintain the muscle tone of my tongue and mouth muscles.  No free weights are involved though a spoon is.

Thanks everyone for being on this roller coaster ride with me.  Your comfort and support light up my days.

Love…

Richard

April 21, 2010 – Radiation 6 [29 to go, under 30!]

The greenies washed out of my system and I slept well last night.  Woke up feeling strong and rested even after yesterday’s activities.  Alan picked me up at 6:30 am and we drove to Boston.  The ride was a real pleasure.  We had a chance to talk without distraction, to catch up on the small details that define the edges of our lives.  Traffic was light, only a few snags on The Mass Pike, and we arrived at Dana Farber about 7:40 am.  I was the first patient to scan in at nuclear medicine and was in the room with Little Bang before 8:00 am.  Before I got on the table, I snapped five shots of this magnificent machine.  Here’s one, the full five are at this link:

Please note my mask sitting on Little Bang’s radiation arm awaiting my arrival.  As soon as I lie on the table, the mask gets snapped on so I’m immobile, the music plays, and Little Bang dances all around me firing the green lasers and the red radiation.  Today’s music was from Boston’s own (though now living in LA) Laurie Geltman’s first album No Power Steering.  Tracks played were “Saddle Up Sally”, “Red, Green, Black & Blue”, “Bloodline”, and “Growing Down”.  I had “Bobby Called From Texas” cued up but the tech hit the wrong line on the iPhone.  No problem, there isn’t a bad track on the CD.

It was a few minutes after 8:00 am when I returned to the waiting room.   While I was being treated, Alan didn’t have time to finish the crossword puzzle and start the Boston Globe Sports section.  Before getting back in the car, we walked over to The Longwood Food Court (by way of the Boston Marathon corridor near the Lance Armstrong Center) and grabbed some coffee.  Oh, java delight, I have my taste buds back for a little while!  Café Americano rocks.

After today’s treatment, my neck felt warm for the first time.  I don’t know if it was a little leftover flush from the greenie steroids or the start of the next stage.  My dry mouth is definitely accelerating.  I’m going to enjoy this break when food and drink have marvelous flavor and my mouth and swallowing are pain free.

Alan & I had an easy ride home, no traffic to speak of and more time for conversation.  We’ll have another round trip to Boston tomorrow and I’m looking forward to the time and talk.

A little while after I arrived home, Ann came home for lunch.  We ate (I had a massive lunch, lots of protein and Iron), caught up on our days, and relaxed until she had to go back to work.  Feeling strong, I headed out on errands to the post office and the pharmacy.  I was considering a LifeCycle ride (that would be two days in a row) on my return, but my body told me I needed a nap.  So, Rudy & I hopped up, laid down on the couch, and fell into deep naps.  Mine was deeper; Rudy got up at one point to check out someone walking past our house.  I can nap with ease knowing he’s on alert!

Got wonderful news from Cousin Betsy today.  Her PET/CT Scan was clean and she is free from cancer!  Now, she can focus on recovery and getting stronger.  It’s a year long process, but she’ll be able to return to teaching come September.  Mazel Tov, Cousin Betsy!  Make you go from strength to strength.

Thanks for all the emails, phone calls, and cards.  I really appreciate how you all reach out to me and raise my spirits.  The support and comfort make my days easier and my motivation firm.

Love…

Richard

April 20, 2010 – Radiation 5 [30 to go] & swallowing PT

My plans for yesterday changed the moment I laid down on the sofa and Rudy Dog snuggled up on my arm.  I was out until after 5:30 pm!  The busy day topped by chemo won out, well sort of.  Before I was hooked up to the IV, the infusion nurse handed me a cup full of pills including a few mega-steroid greenies.  I was worn out in the afternoon, but wide-awake most of the night.  I took a couple Diazepam, but they were no match for the greenies.  I’ve been up and active all of today, no nap, and still have that wide-awake feeling even with fatigue creeping in.  I wonder how sleeping will go (or not) tonight.  Stay tuned!

Ann drove into Boston this morning and chose our usual route.  Renee advised us that Route 9, on a normal day with schools open and everyone working, is gridlock.  Traffic on the Mass Pike was heavy but steady.  We left Worcester at 6:35 am and arrived at Dana Farber around 7:40 am.  I was the first patient to arrive at nuclear medicine (which technically opens at 8:00 am), and the Novalis Tx staff took me right away.  Today, I needed no adjustments to my position on the table, and Little Bang was done before 8:00 am.  Today’s playlist was the opening two tracks from The Grateful Dead’s Road Trips Vol. 3 No.2 – Municipal Auditorium, Austin TX, 11/15/1971: “Truckin’” and “Bertha”.  I was hoping to take a meshface photo today, but the mirrors in the changing rooms were removed and replaced by exquisite artwork.  (Dana Farber feels like an art museum.  Diverse framed media donated by grateful families covers every corridor, except for the spots reserved for Red Sox memorabilia.)  So, I’ll have to figure another angle on catching the mesh in action.  Tomorrow, I’m bringing my D70 rig in to shoot some quick photos of the Novalis Tx.  The online photos just don’t it justice.

We were done early and took the elevator to the 11th floor to the Head & Neck Oncology Department.  An appointment with the Speech & Swallow Therapist was scheduled for 10:30 am.  Dana Farber is not your conventional hospital.  Perhaps the difference lies in its major research focus.  The appointment desk at Head & Neck texted the therapist and she responded that she could see us at 9:00 am.  Amazing.

The Speech & Swallow Therapist, as have other staff specialists, outlined the treatment plan for the duration of my radiation and the period of recovery that follows.  She urged us to focus on today and not get ahead of ourselves worrying about what will happen and how we will respond in the weeks ahead.  That’s our approach, so we are in sync.  I have a series of mouth and tongue exercises to do three times a day.  They are pretty simple and can be done in the shower, the car, or while sitting around (but not at dinner – lots of open mouth work!)  We’ll be meeting with the Speech & Swallow Therapist most weeks.

After our appointment while crossing the Head & Neck waiting room, we bumped into the couple from Sterling we met down in radiation last week.  The husband is going through the same treatment protocol as I am for throat cancer.  He’s a couple weeks ahead of me, so he can clue me in what to expect next.  His advice was to eat up over the next week; my taste buds will soon be heading south.  Again.  Oh, the couple’s names are Jeff & Nancy.  Some of you will find significance and coincidence in that!  Starting next Tuesday, Jeff & I will have consecutive radiation slots.  Like me, he doesn’t smoke or drink and is a gym rat.  We’ve already commiserated about having our workout routines disrupted by cancer treatment and look forward to the day when our energy levels return to normal.

Ann & I needed a little break before driving home, so we stopped at The Longwood Food Court.  Ann went to Dairy Queen for a chocolate sundae.  Remembering Jeff’s counsel, I went to the Red Barn coffee shop for a Café Americano with cold soy and Splenda – my first coffee in over a month.  During intensive chemo, coffee tasted sour, so sour that I gave up my favorite vice.  But now, for this short window, I can indulge!  And dream of the days, soon to come, when I can wakeup with a bike ride and a wicked strong cup of Café Americano!

I was feeling wide-awake and very up, so I drove home.  It was an easy ride.  When we arrived home, Ann decided she needed a nap.  I paid some bills, made a few phone calls, and had a light lunch.  Then I decided to do the grocery shopping.  Grabbed the list and drove to Shaw’s.  I started in the produce department and spent twenty minutes selecting lettuce, tomatoes, bananas, and blueberries.  It began to dawn on me that chemo brain was fully engaged.  Over the next hour and half, I managed to get almost every item on the half page list (and a few impulse buys, I was still hungry!)  If someone diagrammed my path through the market, likely you would get to see the most inefficient shopping trip of all time.  While I was in the checkout line, Ann called to see where I was.  Still shopping!

When I returned home, Ann & I put away the groceries.  I’ve committed to riding the LifeCycle every other day, so I changed into my exercise clothes and road.  The ride was fluid.  I hope I can keep up the riding through radiation.  The more activity I put into my day, the quicker and easier my recovery will be.  That’s motivation enough.  So no nap today and lots of keeping busy.  Getting back to where I started, let’s see if I sleep tonight!  If not, I have plenty to read and eventually the greenies will wash out of my system.

My brother Alan is driving me into Dana Farber the next two mornings.  It’s a really big help for Ann (& I.)  I’m not alert enough to drive to Boston early in the morning.  Having the two mornings free opens up a lot of time for Ann to see patients.  We really appreciate the help.

Thanks everyone for your support, comfort, and messages.  This is one of the most (if not the most) challenging times in my life and knowing how so many people care is a singular gift.

Love…

Richard

April 19, 2010 – Radiation 4 [31 to go] & big news!

Today, in deference to The Boston Marathon and the need to find a new route without streets closed down due to the race, Ann & I left twenty minutes early for Dana Farber.  We took I-90 (The Mass Pike – give it a name and you can charge a toll) to Natick where we picked up Route 9 for the remainder of the ride into Boston.  Traffic was light and the sun was bright.  Naturally, we made it in early to Dana Farber, before 7:15 am!  The early arrival turned fortuitous, as there was some shuffling of the five appointments I had for today.

My radiation, scheduled for 8:40 am, was completed before 8:00 am.  Today, the techs hit the ball on the nose when they arranged me on the table and no adjustments were necessary.  Music for radiation 4 was from Sara Hickman’s Necessary Angels, the following tracks: “Pursuit Of Happiness”, “The Best Of Times”, “The Place Where The Garage Used To Stand” and “Sister And Sam”.  As soon as I was out of radiation, we had our appointment with Dr. T., my radiologist.  There’s not a whole lot to evaluate after four treatments, but he talked about the full cycle of radiation.  One question I had was whether my saliva glands that need a heavy dose would grow back.  Dr. T. said it’s likely that the glands will be gone permanently on the tumor’s side, but I will have at the very least the large gland on the other side of my mouth.  There will a new normal as far as my mouth is concerned.  But hey, I’m getting real used to dry mouth anyway!  And it’s a small price to pay.

We went upstairs to have my port hooked up (both channels, they needed flushing) and blood drawn.  That appointment was for 9:00 am, but the process was complete well before that.

Our next stop was to see my oncologist and team leader Dr. H..  He reviewed the results of my post-intensive chemo CT/PET scan.  The news is exciting!  I still have one lymph node that is large but has declined in size from SUVmax 5.2 to 2.8.  It could be malignant or it could be scar tissue.  The primary tumor on my tongue has decreased in size from SUVmax 11.1 to 3.1, a significant change!  Dr. H. said the remainder could also be just scar tissue or a small patch of tumor.  Next, he stuck the hose up my nose.  Ok, the hose has a camera on it and outputs to a monitor allowing the doctor a clear view of the tumor site.  He liked what he saw, but could not determine whether the remainder was scar tissue or tumor.   So, he decided to stick his finger way down my throat and see if he could tell tactilely.  I’ve gotten real good about having stuff stuck down my throat without the gag reflex kicking in (or out.)  The tactile approach was also inconclusive.  My radiation with chemo booster protocol would be the same either way.  Dr. H. has said all along that intensive chemo is the preparation and radiation is the cure.  The goal is to be certain that 100% of the tumors/cancer cells are eradicated.  The technical medspeak for the results of my intensive chemo is a partial response.  That means they got a lot of The Alien rousted with a little more to go.  Yes!

Dr. H. looked at my blood profile and is concerned about my red blood cell count and protein level.  The former may still be recovering from the intensive chemo; my calves ache the way they have before when my bone marrow is working overtime.  For both, I need to analyze my diet carefully and push iron and protein.  If my red cell count stays low, the response would be a blood transfusion and I’d prefer to avoid that.  If necessary, I may augment my diet with fish.  We’ll figure it out.  Once I have the feeding tube in (scheduled for April 30th), they can fill my tummy directly with anything I need.

Dr. H. started me on a weekly low-level dose of Carboplatin (chemo with platinum in it!)  Its purpose is to enhance the effectiveness of the radiation.  Dr. H. has researched the interaction of chemotherapy and radiation (including the order of the treatments) at Dana Farber.  I am so fortunate to have him as my oncologist (thanks again, Rachael!)  and Dana Farber as my hospital.

We went down a floor to the infusion room and they hooked me up to a fresh blend of Carboplatin.  Half an hour later, it was done.  The nurse flushed my ports and we were good to go.

After a quick lunch, Ann & I headed back to Worcester.  Because of the marathon, we took the same route we used on the ride in.  Our travel time was less than an hour.  We’re going to try the route again tomorrow to see if the traffic level is always as fluid as today when some folks had the day off.  We took Route 9 to I-95 to I-90.  As we drove on I-95, we looked up to an overpass bridge and saw the marathoners running.  That was very cool.

Going to take the rest of the day easy.  I may nap if my body tells me to.  A trip to the market is a possibility if we decide that I need to augment my diet.  I am fully entrenched into Mariantes’ Matterhorn, so I may read all afternoon.  I am fatigued and chemo-brained, but so very up after today’s news.  Maybe I’ll put on music and dance!  Dancing is good for the soul.

Thanks everyone for the emails, cards, calls, and surprises.  Every day, I am grateful for your comfort and support.  Thanks for taking this walk with me.

Love…

Richard

April 18, 2010 – Pushing the limits

Friday was the test drive for the taste buds.  Last night, I pressed the accelerator to the floor hard enough to feel the skin on my cheeks peel back.  Ok, that’s an exaggeration.  That’s how I used to feel driving my 1972 Mustang Fastback with a 302-2V featuring twin Holley carburetors.  I guess the reason that analogy popped into my head was a conversation about our kids driving to and from college/work in distant cities and how it seemed too long a haul.  When I was living in St. Louis in the early 1970’s, I made the drive to Worcester in about 21 hours, timing my arrival at The Boulevard Diner for around 3:00 am.  After a salad, veal parm with penne, a piece of Table Talk Boston Crème Pie, and a few cups of coffee, I’d wander home to collapse and sleep into the next afternoon.  No, I was not a vegan then.  Though a part of me yearned to be a vegetarian, but didn’t have a clue how to get there.  Besides, St. Louis had too many (or not enough) Steak ‘n Shake drive-ins.

Yesterday was a special day.  Ann & I took it easy most of the morning and early afternoon, doing a few chores, taking a couple of naps, watching a little TV (home improvement shows on HGTV), playing on the computer, and reading.  I finished Lori Lansens’ The Girls (highly recommended) and started Karl Mariantes’ Matterhorn, both on the Kindle (loving the Kindle!)

Around 3:00 pm, Cousins Alan & Arlene arrived for a visit.  I can’t write this too often, so here goes.  Arlene has been a rock and inspiration to me during the cancer experience, from diagnosis to treatment.  She’s fought the beast three times over three decades.  Arlene is one of the sweetest people I know, but also one of the toughest.  I lean on her experience and try my best to emulate her positive attitude towards life’s challenges.  We email daily and talk on the phone weekly.  She is still recovering from her last bout with cancer, but always puts the focus on me.

We traded treatment stories and caught up on health details.  Then, we reached into the rich trove of family stories.  Arlene & I are the children of two of three brothers.  The three were each other’s best friends.  Many of my happiest childhood memories revolve around the interaction of the brothers.  Their patter during card games was dicey and priceless.  I grew up with my cousins; we spent lots of days as one family and the ties run deep and true.  Near the end of the visit, we listed our favorite movies and found almost an absolute overlap.  We go for the off-kilter comedies.  It was a funny and fitting conclusion.

Ann & I caught our breathe for an hour and then Larry & Lora arrived to pick us up for our evening dinner plans.  As I wrote yesterday, lifelong friends are special and to be cherished.  Larry & I grew up together.  Our parents were close friends before they were married.  The memories go back as far as memories go.  Like our parents, we’ve raised our children together from infants to adults.

We headed out to Bertucci’s in The Solomon Pond Mall in nearby Berlin and met up with Cousin Betsy who drove in from the other direction.  Truth be told, Betsy & I are not exactly related but we’ve decided that we are cousins, so that’s all that matters.  Betsy just finished treatment for cancer, her second bout with the microcellular beast.  Betsy started treatment well before me, but we’ve overlapped the joys of chemo, tests, and being poked and prodded.  She’s been with me all the way, emailing suggestions and perspectives on dealing with cancer.  We traded stories about our treatments and how we leave modesty far behind once in the milieu of hospitals.  As we went through chemo and lost our “normal” taste buds, we wrote about meeting for dinner one day and being able to enjoy our meals.  It once seemed so far away, but here were today munching on Bertucci’s outstanding rolls.  Betsy has been a real friend & cousin, a fellow traveler on this difficult path.  We could blow off steam and laugh about the disease.  I often expect too much of myself in dealing with the side effects of chemo and Betsy has been really helpful in telling me to rein that in, to be more gentle with myself.  There were times I really needed to hear that.

Dinner, wasn’t that the starting point of today’s post?  I had a salad with balsamic vinaigrette, three rolls, and three quarters of a pizza with no cheese topped with spinach, portabella mushrooms, and caramelized onions.  I was ready to stop at half a pizza, but my body urged me on.  In the pre-cancer days, I would have downed the whole pizza, but a guy’s gotta work himself back into shape, right?  But I could feel that skin on my cheeks peeling back or maybe it was just the garlic.

If I’d been able to see Laura today, I would have been in the company of all three fellow travelers on this road of cancer treatment.  Laura, a friend from college days, lives outside of St. Louis, so that would have been a bit of a trick.  Laura does a real good job of hitting me upside the head when I really need it.  That’s what friends are for.

Dan arrived around noon today (just after my 12 minute LifeCycle ride.)  We’ve been sitting around, taking it easy, playing with the pups, and watching a few episodes of “Big Bang Theory” and “Modern Family.”  I really appreciate his weekly visits.  He’s been wonderful and helpful all through my treatment.  When we really need a hand, Dan’s always here.

Tomorrow is a busy day.  We have five appointments at Dana Farber (radiation, radiologist, blood drawing, oncologist, chemo infusion) starting at 8:40 am.  The drives in and back will be interesting.  Tomorrow is Patriots’ Day, a Massachusetts holiday, and the day of The Boston Marathon.  Our normal route will be blocked by the marathon, so we’ll try to sneak into Boston via Route 9.  Some people have Patriots’ Day as a holiday (I never have), so the traffic might be lighter. Then again, there will be thousands of people going into Boston to watch the event.  We’ll leave a little earlier and hope our alternate route works.

Thanks everyone for your support and wishes.  I feel connected to you all and never alone.

Love…

Richard

April 17, 2010 – Taking it to the limit

Last night, I took my taste buds out for a test ride.  Chemotherapy affects the quick growing cells in the buds.  At its worst, all I could tolerate was bland food.  How bland?  Applesauce burned.  Pudding burned.  Soy yogurt burned.  My diet consisted of eggbeaters, Cream of Wheat, and Boost/Ensure.  Since I finished my third and last intensive chemo cycle, I’ve gradually been branching out into pasta, salad (how I missed salads and balsamic vinaigrette), and sandwiches with a little bite.  Last night, I challenged my taste buds without thinking about it.

Ann & I had dinner at El Basha (Middle Eastern food) with Jesse & Susan.  We ordered a hummus and babaganoush appetizer which tasted just yummy.  For my main course, I chose an El Salad with a side of meatless stuffed grape leaves.  My taste buds rejoiced and the tart flavor of the grape leaves stayed with me until I fell asleep.

The El Salad is named for the famous El Morocco Restaurant that graced Worcester for ~five decades.  It started in the basement of a three-decker where it had a Beat Generation feel.   Jazz musicians would gather after gigs and jam into the wee hours while munching on Middle Eastern treats.  Theater and major entertainment stars would drive to Worcester and the El from Boston for after performance dining (their photos covered the walls.)  In the 1970’s (I think), the El moved into a glamorous new building across the street.  It was set on a hilltop with a panoramic view of Worcester County.  The New El had a lavish dining room and function rooms that often were used for jazz concerts.   In the late 1990’s, this landmark restaurant closed leaving a hole still unfilled in the city, musically and gastronomically.  El Basha has revived the revered El Morocco Salad (now if they could only get the recipe for the Mud Pie!)

After dinner, Jesse & Susan suggested we stop at The Bean Counter to pick up dessert.  The Bean Counter is noted for its coffee and home made treats.  They even do vegan!  My big vice in life pre-cancer was coffee (Café Americano with an extra shot, cold soy, Splenda) but during chemo, coffee first tasted bland and then sour in a very bad way.  Now, it is suggested that I avoid coffee and caffeine.  But I loved walking into The Bean Counter and inhaling deep lung fills of coffee and espresso.  I chose a couple of vegan cookies: chocolate chunk and oatmeal raisin.  It’s been a long while since I’ve had a rich cookie!

We four came back to our home, sat around and talked.  Talk led to a lot of laughter.  I’ve known Jesse since childhood and Ann & I met Susan early in our marriage.  Our kids grew up together and still make time to see one another.  These life long friendships are special and priceless.  It’s more than the history; the understanding exceeds mere words.

Today will be another cool day.  Cousins Alan & Arlene are coming by to visit this afternoon.  Then tonight, another life long friendship couple, Larry & Lora, are taking us to Bertucci’s in The Solomon Pond Mall where we will meet up with Cousin Betsy.  I get to see the two women who are my rocks in the same day!  They have guided me through cancer and treatment, sharing their experience fighting the disease.  I don’t know where I would be without their counsel and wisdom.

Thanks everyone for your comfort and support.  I’m beyond lucky to have friends and family like you.

Love…

Richard

April 16, 2010 – Radiation treatment 3 [32 to go]

Three treatments down, thirty-two to go.  I'm 1/12th of the way through radiation!

Ann & I had an easy commute to Dana Farber this morning.  You can never tell how a drive into Boston will go during rush hour.  We arrived about forty-five minutes early for our 8:40 am appointment.  We’re starting to recognize the patients who have treatments around the same time as mine.  Everyone is upbeat and positive.  Everyone looks good.

Today, we met a couple whose slot is normally at 10:00 am.  The husband is also being treated for throat cancer and also has Dr. H as his oncologist and team leader.  His treatment path is similar to mine with the same three 21 day chemo cycles before radiation.  The reason he was in early is that he was having his stomach tube put in today.  He started radiation on April 1st, so he is about a half month ahead of me.  He looks good and is pain free.  While he was being radiated, his wife & Ann talked about watching husbands go through cancer treatment.  The couple is much younger than us, he’s 40, and they have two young children.  It was helpful for me to see someone two plus weeks ahead of me in treatment looking well and still eating normally.  My stomach tube goes in on April 30th.  Guess Friday is tube day!

My treatment was similar to the first two, except I needed two adjustments by the tech before I was lined up to their satisfaction.  One of the techs was especially interested in today’s musical choice, selections from Jenny Lewis with The Watson Twins’ Rabbit Fun Coat.  With the adjustments, I was on the table longer and heard the following songs: “Run Devil Run”, “Rise Up With Fists”, “Handle With Care”, “The Charging Sky”, “Melt Your Heart”, “Rabbit Fur Coat”, “You Are What You Love”, and a bit of “Big Guns.”

I keep forgetting to mention Mesh Face.  When I change back into street clothes, in the mirror is my face, marked by the mesh.  You could use my mug for graph paper or a crossword puzzle.  It’s pretty funny.  I think with Sam’s (costuming) help and a bit of stage makeup, I could be ready for Star Trek!

When we returned home, Ann went grocery shopping and I rode the LifeCycle for twelve minutes at half intensity.  I was debating whether to wait another day, but my back wasn’t stiff from the car rides, so I went for it.  Also, Monday we have multiple appointments at Dana Farber, so now I can ride Sunday and be on the desired every other day ride schedule.  My back feels good but I still need to be gentle with it.

Tonight, we’re going out for supper to El Basha with Jesse & Susan for a little Middle Eastern food.  My appetite is good and I’m up to indulge.  This is the time that my goal is to pack on the pounds.  There is balance in all experiences!

Thanks for all the cards, calls, posts, and emails.  I feel so lucky to be surrounded by love and comfort.  I always know I have friends and family with me, holding me as I walk this path.

Love…

Richard

April 15, 2010 – Radiation treatment 2 [33 to go]

I won’t start off by saying that today is a taxing day, but my iPhone calendar does make note of it.  Forgive me, I woke from a very heavy power nap and have been trying to clear my head ever since.  Just had a scrumptious lunch (PBJ, soy yogurt, chocolate silk soy milk) and my body is staying in a seated position without the extreme urge to lie prone on the couch.  Rudy Dog keeps an eye on me.  We napped together earlier and I think he thinks another nap would be a fine idea.  Why so tired?

My back is still bothering me though it’s better than yesterday.  Last night, I took a Diazepam and a pain pill before bedtime.  The combination is effective for my spasms.  Also, it knocks me right out.  When I woke this morning at 5:30 am, I was stiff and sore but the spasms were gone.  Why were we up so early?

My initial radiation treatment yesterday was at the fine time of 2:20 pm.  The next nine, including today, are at 8:40 am, smack on the nose of Boston rush hour.  So we needed to leave Worcester at 6:30 am.  The remaining treatments will be at the ideal time for avoiding traffic of 10:40 am.

The ride in today took a little less than two hours (arrived at Dana Farber parking garage at about 8:20 am) but I don’t remember much of it.  The meds from the night before were still doing their thing and I snored my way down I-90.  The rest of the day went exactly like yesterday.  I checked in at nuclear medicine, donned a johnny, and we sat until my name was called.  A tech brought me to the radiation room, hooked up my iPhone to their stereo, and helped me onto the table.  Another tech quickly put my mask on and locked me in place.  Then the techs left and alignment x-rays were taken.  Today, I needed to be shifted to the right a bit.  Then the linear accelerator did its thing.  It occurred to me that it’s a good thing I’m a nose breather.  As tight as the mask’s mesh is, I’m not certain that I could breathe through my mouth.

I decided that a drowsy morning called for ethereal jazz.  So, today’s music was from Miles Davis – “Right Off (Take 12)” from The Complete Jack Johnson Sessions followed by “All Blues” from Kind Of Blue.  A few folks asked which of BeJae’s songs played yesterday.  They were “You Married Louise”, “Navigating Limbo”, and “Out Of The Heartland” from Navigating Limbo and “Let’s Drive On (Jackie Says)”, “Iowa”, and “Those Summer Nights” from Red Cross Woman. I’ll list songs going forward.

After my treatment, I changed back to street clothes (a Webster Alumni sweatshirt for good luck) and Ann & I set off for Worcester.  The ride home was easy, light traffic and fair skies.  When we arrived home, I lay down on the couch, Rudy assumed the position, and the rest you know.

I feel well and stronger, still no side effects from the radiation.  I would have ridden the LifeCycle today, but my back is sore in a spot that tells me a ride would be counterproductive.  I have a bad habit of exercising through pain and making an injury much worse.

Thanks everyone for the words of comfort and support.  We’re over halfway through the full treatment cycle.  You’ve made this a gentler, warmer, and easier ride.

Love…

Richard

April 14, 2010 – Radiation treatment 1 [34 to go]

Today, we went live.  Ann & drove into Boston.  We left plenty of extra (read: unexpected traffic) time and arrived early.  Once down on L2 in Dana Farber (where the nuclear medicine department is – below ground), I took my new check-in card and placed it under the scanner at the greeter’s desk.  On one monitor, my personal information flashed on the screen for about fifteen seconds and then cleared.  On the second monitor, it showed that “my” machine, Novalis Tx, was on time.  The greeter Roy made sure I had a bottle of water (dry mouth is a major side effect of radiation; the saliva glands get fried) and offered me a second.

Next, we went to the Novalis Tx waiting area and I went into the changing room to strip to the waist and don a johnny (Loomers pun.)  Ann & I sat and read until my name was called.

I followed the tech down the corridor past the control room with my photo on one of the monitors and into the radiation therapy room.  The machine treating me is a Novalis Tx linear accelerator.  If you’re curious, general info on linear accelerators can be found here.  The first thing I did was pull out my iPhone with my music and a tech hooked it into the room’s stereo system.  Immediately, BeJae Fleming came blasting through the speakers (selections from Navigating Limbo and Red Cross Woman – BeJae’s been with me all the way on this journey, so it seemed fitting to start radiation with her songs, voice, and guitar.)  Then I popped out my hearing aids, took off my glasses, and assumed the position on the table with my head & neck on the aligning support.  Unlike yesterday, when everything happened slowly, as soon as I was settled on the table, my mask was put on me and locked down.  A tech told me they would first take a couple of x-rays.  The arms hummed and flat panels covered with lights (not LED’s, something much cooler) inspected me.  A couple of red flashes went off.  The tech returned and moved my shoulders slightly to the left.  She left and I heard the door shut.  Immediately, the arms hummed and began a series of movements.  They would align the position of a third arm with horizontal laser like lights in patterns crossing the entire panel.  I figured out that green light is the lasers’ aligning and red light is the linear accelerator shooting radiation.  As BeJae’s songs filled the room, the three arms danced and flashed lights.  I didn’t feel a thing; the side effects will come gradually.  The radiation will cumulatively affect parts of my mouth (saliva glands, taste buds, swallow muscles, speech box, etc.) while destroying the tumor and cancer cells.   The linear accelerator suddenly got quiet and immediately a tech was unsnapping my mask.  I was up and off the table and techs were “See you tomorrow.”  Time for the next patient.

Today was fascinating from a geek viewpoint.  I know the fatigue and other side effects will hit me soon.  For now, I’ll enjoy the ride and live out sci-fi fantasies.  Any anxiety I had about radiation therapy is gone.  The treatment is a known entity.  In a couple of weeks, the effects of the radiation will present challenges, but it will be a gradual ride to the top of the roller coaster and a fast (though longer) ride down.

Thanks everyone for your support and comfort.  I feel you walking with me.  Cancer treatment is difficult physically and psychologically.  You all soften the blows and I appreciate that beyond words.

Love…

Richard

April 13, 2010 – Radiation dry run and THE MASK

Today was an interesting day.  Got up this morning and found myself back on the Imodium train.  I would say that eventually the chemo would wash out of my system and my stomach would recover except I’ll be having a low intensity chemo dose every Monday during radiation treatments.  Oh well.  Overall, I feel good.  Rode the LifeCycle for twelve minutes at half my usual intensity before lunch.  Took a shower and found that my back was having spasms.  I hit it with a lot of hot water.  Of course, this happens on a day when I need to lie prone on a hard table!  After a quick lunch, we packed up and drove to Boston.

The Nuclear Radiation Department has a greeter.  He gave me my radiation treatment card and showed me the workflow system.  The card has a bar code on it.  Once scanned, the monitor briefly displays my information and then shows a list of the radiation machines and their status (e.g. On Time or Delayed At Originating Airport.)  If the doctor needs to see me, his name will appear next to my machine.  Slick technology, when I scan my card, my data goes to the radiation machine team and the nursing staff.

One of the radiation techs came over and sent me into a changing room where I stripped off my clothes from the waist up and put on a johnny (why is called a johnny?)  Once I was ready, he took Ann & I on a walk down a corridor to the radiation control center for my machine.  The center features multiple monitors including one with my photo (just so they know they have the correct patient.)  As far as I can figure, each component of the radiation machine is hooked into a separate monitor.  The tech explained that the staff would monitor me via video cameras and that the room had microphones so they would hear anything I said.  Then we went around the corner to the radiation room and entered the world of sci-fi turned to reality.

I didn’t have a lot of time to examine the machine.  I was laid down on a table (similar to a scan table) and my head was centered on a support.  When my mask was constructed, my head was on a twin of the support.  They aligned me left to right and then brought out MY MASK.  They slid it on and locked it down.  My head, neck, and chest were immobilized.  Wearing THE MASK is cool, especially with this massive device with multiple arms and lasers spewing green and red beams.  Ann took a photo of me on the table fully masked.  Note the laser beam on my neck and another across the johnny.

 Once I was locked in, everyone else evacuated the radiation room.  Soon, the multiple arms of the machine began moving.  Each stopped over my head, flashed lights and lasers across me and hummed.  Once each arm was done, it blinked and moved on.  I felt like I should be replying to these arms or at least be saying hello or thank you or something polite. The whole process took about fifteen minutes.  It was similar to a live run, only instead of radiating me, they took x-rays and measurements for review by my radiologist, a physicist, and one other specialist.  Oh, they play music over the loudspeakers while the treatment is going on.  They picked out Elton John for me (must be my age and lack of ‘do - all the hits: “Goodbye Yellow Brick Road”, “Benny And The Jets”, etc. – at least they could have given me Tumbleweed Connection) but invited me to bring my iPod, iPhone, or a CD with music of my choice.  That’s going to be interesting.  Not only will the music be for me, I also get to educate the ears of the radiation room staff as every sound in the room is piped to them.  I’ll avoid the impulse to bring Coltrane’s Ascension.  But I will have fun with musical selections.  I’ll keep you posted.

After my dry run, we saw one of my radiologist’s nurses who went through miscellaneous details about the treatments.  Then we were free to drive home through Boston traffic, a packed Mass Pike (until the I-495 interchange), and rush hour Worcester mayhem.

I feel good.  I feel Bring It On good, ready for the radiation treatments to begin.  I’ve halfway there.  Let’s go! 

Thanks as always for your comfort, support, and communications.  You are all unbelievable and I appreciate every thing you do for me!

Love…

Richard