A little while later...

Sorry I haven't posted in a while.  Haven't been spending much time with my computer.  But there is a lot of news.

I went to Dana-Farber for my appointment with the Swallow Therapist and Nutritionist.  They were surprised to find out that my stomach feeding tube had been removed.  They weren't upset though.  I gained four pounds in the three weeks since I stopped feeding using the tube.  Generally, people lose weight.  They were happy with my diet and progression of adding new foods.


My tube is healing well.  While I was in seeing Swallow and Nutrition, I asked one of the nurses to check the wound.  She thought it looked good.  My steri-strips still haven't come off the incision where my port was removed.  Ann's getting ready to pull them.  Will be two weeks on Wednesday.

I get up at seven, eat breakfast, and take a nap while the food digests.  A month or so ago, I couldn't ride my LifeCycle - my legs weren't strong enough to drive the wheels at low resistance.  Started on the bike again last week.  Am up to 24 minutes at level one.  Before treatment began, I did 36 minutes at level four every morning.  I am getting stronger.  Plan to try 36 minutes tomorrow or the next day, then start gradually upping the level.


I've been going into work in the afternoon for the past couple of weeks.  Still getting back in the swing of things.


My first followup appointment at Dana-Farber with my oncologist is next Wednesday.


Thanks everyone for your support and comfort through my illness and treatments.


Love...


Richard

Twofers!

Today we went to Brigham & Women's Hospital to have my Power Port removed.  It is a simple day surgery procedure.  We left early; we wanted to be sure to be on time.  The traffic was beyond heavy.  It took (perhaps) longer than any other drive into Boston.  When we got there, a half hour late, I signed in and was immediately brought down to pre-op.

I was concerned about my stomach feeding tube and potential infection (that was an issue at St. Vincent's Hospital) and told my surgical nurse.  The surgeon had a simple solution.  "Why don't I just take that out too while you're under sedation?  I won't even charge extra!"  Ann said go for it.  Normally, the tube comes out without sedation or pain meds - literally yanked out and covered with a dressing.  I was concerned that we were making a decision without my oncologist's approval.  The surgeon paged Dr. H. who said sure go ahead and remove it.   I have an appointment next Wednesday at Dana-Farber with my Nutritionist and Swallow Therapist; they were supposed to authorize the tube's removal.  They work for Dr. H. so no toes are stepped on.  (Don't I worry about this stuff too much?)

The procedures went smoothly and quickly.  I really liked the surgeon, she is compassionate and has a sense of humor.  All the nurses and anesthesiologists were nice, too.

So now I'm portless and tubeless and just a little bit sore.  I have to take it easy for a few days while I heal.  The port is just an incision.  The tube is an open hole the size of the tube.  It will scab over and close on its own.  Both have dressings.

My job now is to continue to eat, not lose weight, and slowly broaden the variety of foods I eat.  I'm looking forward to sandwiches, but bread (being dry) is one of the last foods I'll be able to eat.  Next Wednesday, the Nutritionist and Swallow Therapist will give me more suggestions on where to go (and how) food-wise.

I went into work yesterday and spent a few hours getting my workstation updated and more, my brain updated.  Getting back into the swing of things will take me a while, but I'm ready.  Next week, if I'm healed sufficiently, I'll start going in for afternoons daily and work my way back into a full day's schedule.

Thanks everyone for your support and comfort.  It means more than I can say.

Love...

Richard

Penne bits

We went to Pizzeria Uno and my meal there was less successful.  Found myself choking on penne with vegetables in a tomato sauce.  Also had french fries and a little salad.  (How I love salad - got to keep trying!)  Last night, I ate the penne leftovers with a plan.  I cut each piece of pasta into thirds and swallowed each third before trying another.  It worked.  I'm feeling better about eating and more confident. My swallow muscles are getting stronger and the food more diverse.  Hopefully, on September 22nd, when I meet with the Nutritionist and Swallow Therapist, they'll ok my stomach feeding tube coming out.  My weight has to be stable and they have to approve my diet.

My Power Port is being removed on Wednesday, September 15th (not the 13th as I wrote before) - it's simple day surgery.

I keep walking everyday.  It's hard to see progress with my stamina, but I'm sure it's there.

Thanks everyone for your support and comfort.  It's been a long process but I finally feel like I'm getting close to being normal again.

Love...

Richard

Real Food

Happy Labor Day!

Saturday, Dan visited and we went out to El Basha, a Middle Eastern restaurant here in Worcester.  I was able to eat some salad (how I've missed salad!), a entire bowl of thick lentil stew, and some french fries.  It didn't go perfectly but I was able to swallow the food.  This is a pick-me-up!

Tonight, we're going to Pizzeria Uno with Larry & Laura.  I hope to be able to take on more salad and pasta marinara.  Keep you posted.

I'm having my Power Port out on September 13th - simple day surgery.  If my weight is stable on September 22nd (same as my last weigh-in), I can have my stomach feeding tube removed!  I'm working (eating) hard to meet that goal.

Thanks everyone for the kind words of support and comfort.  I've never felt alone through this whole journey.

Love...

Richard

Eating is the thing

We are lighter knowing the cancer is gone.  It's been a long road since I started treatment on February 2nd (my birthday.)  My big challenge now is eating.  Since September 1st, I haven't used my stomach tube to feed.  On September 22nd, I see the Nutritionist and Swallow Therapist and if my weight is stable, the stomach tube will be removed.  On September 13th, my Power Port (a device that sits below my chest skin and hooks into a large vein - chemo, other medications, and blood draws are accessed via the port) will be removed.  It's day surgery.  My understanding is the stomach tube is just yanked out in an exam room!

Eating is a challenge because food doesn't have much flavor and I need to eat about 720 calories per meal.  My body is still healing and needs the extra calories.  My taste buds are still coming back and I still have areas in my mouth that are raw (sensitive to acidic food/drink).  I have to be patient and keep eating.

I went to the dentist yesterday and had my teeth cleaned.  Head and neck radiation is hard on the teeth (well, hard on every part of the mouth, tongue, and throat) and I was concerned that the cleaning would be tough and that I would have other dental issues.  The cleaning felt like any other cleaning, probably easier because my mouth has gone through a lot.  Dr. Jeff came in and checked out my mouth.  It's in good shape, just an old filling that needs replacement (we knew about that before cancer treatment.)  Radiation weakens the teeth and I need to brush twice a day with a prescription fluoride toothpaste, let my teeth "marinate" for half hour after each brushing.

Thanks everyone for your comfort and support, for your greetings and celebration of cancer free me.  You all carried me through the chemo and radiation and recovery and I was heavy.

Love...

Richard

Cancer free!

We're just back from Boston and Dana-Farber Cancer Institute.  My scans were good.  I'm cancer free!

They stuck a rubber hose up my nose (after spraying no pain stuff) and looked around.  I avoided some of the potential side effects (the extreme ones) of the radiation, but still have plenty. 

Now I need to work on my eating.  I'm still dependent on my stomach feeding tube.  Once I can consume the necessary calories (720 per meal, three times a day) orally, they'll remove the tube.

Anyway, great news today!  Thanks everyone for your good wishes, prayers, and support.

Love...

Richard

Scans

We're back from Boston.  It just seems like a long day.  We left Worcester around 8:00 am and arrived on time at Dana Farber at 9:30 am.  My first task was to visit the blood drawing room.  I know all the staff there now and each greets me as they walk by.  Nice to have a friendly environment especially there.  Because I was having a PET Scan, I needed an IV (the nuclear material needed for the PET can damage a port) put in.  Since it was a month since my port was accessed, my friend had to flush both sides of the port.  I had a triple stick!  Though they are really good there.  My IV was in a vein no one has been able to successfully set a line in before.

I'm still nuclear (watch out small children and pregnant women) from the PET Scan. They put me in a lead lined room, opened a lead walled pass through and pulled out a fat syringe coated with (yes) lead.  Then they injected me with the stuff and had me spend an hour quietly. I listened to music on my iPhone and read the latest The New Yorker short story.  Brother Trucker had just finished the song "Bobby" when they came and got me.  It's 90 degrees outside, but in nuclear medicine it was about 65.  I laid down on the PET bench and was covered (thankfully) by a warm blankie.   Then, the scan started and I went in and out of this tube for a half hour or more.  Typical for me, I fell asleep during the scan.  They woke me and told me I was still and they got good images.

Next, I went to CT World for a Neck Scan.  I filled out their paperwork, saw a screener with long red highlights in her hair.   She asked me if I had a port or an IV.  I said both.  The IV was active so that's the way the contrast for the CT would be administered.  I went back to the waiting room, sat, and waited to be called.  Tim came out and called my name and brought me into one of the CT rooms.  Just like the PET machine, the CT scanner was new and state of the art (nice machines!)  I bet it could tell if I were lying!  Again I laid down on the bench.  They took a few "pictures" then let the contrast go through my IV.  My whole body felt warm which was helpful given the cold temperature in the CT room and yes, they also gave me a blankie.  A few more "pictures" and I was done.

Both these tests required fasting of at least 4-6 hours.  I was hungry and packing formula and my stomach tube apparatus.  I asked if there was a place I could feed myself - I thought I might gross someone out in the waiting room who'd never seen a tube feed.  Hey - it's just a tube that disappears in my belly and opens to the stomach.  They set me up in a nice holding room and I fed.  Then, we headed back to Worcester.

Now we wait until Wednesday morning when we get the results of the scans.  Dr. H. feels that I am cancer free but there is no guarantee.  He projects a 20% chance that I may need surgery for a maverick lymph node.  We're hoping I fall into the 80% cancer free range.  Say a prayer or the spiritual equivalent.  Thanks.

A side note: last Friday, Mom & Dad had lunch at The Wexford House, their usual Friday routine.  Dad fell on the steps after eating and broke & dislocated his arm.  Wexford is conveniently located across the street from UMass Medical Center (where Ann trained and) where Dad gets his medical care.  He was ferried to the E/R where they decided that surgery was risky given all of Dad's health factors.  The doctors were able to manually set/reset the arm.  Later on that night, Dad's blood pressure dropped and he needed a unit of blood.  He was bleeding internally in the arm, blood thinners complicating the situation.  He is stable and will be released soon (whatever soon is).  He may have to go to rehab though he prefers to go home.  We'll see.  So, we have this going on, too.  Never a dull moment in our family.

Thanks everyone for the support and comfort over the past week.  This can be stressful, especially the waiting, and the emails have really kept me focused and made me feel the energy carrying me.  It means a lot.

Love...

Richard

Big Week Coming!

Next week is a big week for me.  On Monday, I have a CT Neck & Head Scan and a PET Scan scheduled.  Wednesday, I find out if I'm cancer free.  Say a prayer or commune with your spirits for me.  I've started to eat solid food though it has little taste (my taste buds sill haven't rebounded.)  My weight has been rock solid on the liquid formula diet (via stomach feeding tube), but now as I cut out formula for real food, my weight is dropping.  We are trying to address this.  Part of the problem is that my appetite is non existant.  It's my job to eat and I eat when full.  If my scans are ok, getting back on a solid diet and losing the stomach tube are the major challenge.


Today is Ann & my 32nd Anniversary.  We walked Institute Park this morning.

If you'd like to help in the fight against cancer, consider a donation to Dana Farber Cancer Institute.  It's the research facility where I'm being treated.  I've joined the Team Head & Neck (the specific department where I get my care) for The 2010 Cancer Walk.  Please view my page at:

http://www.jimmyfundwalk.org/2010/fox

Thanks everyone for your support and comfort.  It means more than I can express.

Love...

Richard

Learning to eat again

I'm doing much better with my eating.  Each meal starts with real food followed by a can of formula.  Two cans of formula three times a day has maintained my weight - so steady that the Nutritionist jokes about it.  So, my weight will suffer but hopefully for a short period of time only.  Food still doesn't taste good and Imodium is my companion.  Eating is my job.  I am grateful that I can eat with little discomfort - I'm off of pain medications - and that my swallowing has improved so much.  Still a ways to go.  I'll be happy when my taste buds bounce back!

I take a walk everyday.  Getting stronger, on a good day my walk is 45 minutes.  I hope to be over an hour soon.  If the weather's bad, I head over to The Greendale Mall and walk there.  I think of what a showplace it once was and how rundown (empty storefronts) it is now.

My CT Scan and PET Scans are on August 30th.  I get the results (am I cancer free) on September 1st.  Say a prayer, please.

Thanks everyone for your support and comfort.  There are days I have the blues and knowing you are out there with me helps beyond words.

Love...

Richard

Back home last night

Internet is down in the rain. Checked myself out of the hospital last night. Was waiting a second day for an MRI that my DFCI oncologist didn't think was necessary. My oncologist wanted a CT brain scan which was done out of the ER and showed no problems.  There was no guarantee when the MRI would have been done if I stayed another day or another day or another day. I was admitted to have the MRI, frustrating.

Feeling tired but ok. Ate well today- half bowl Cheerios for breakfast and two Eggbeaters for lunch! So, progress.

Thanks everyone for everything.

Love...

Richard

Back in the hospital again

Couldn't close my right eye yesterday and my smile drooped. So went for a brain scan - nothing wrong there. We're waiting for a maybe MRI. All tests show no sign of a stroke, so likely I have a case of Bells Palsy.

The hospital is so much fun. Gotta love those three hour sleep nights!

Thursday Afternoon

Time to 'fess up.

Monday, I had an appointment with my Swallow Therapist and Nutritionist, the two disciplines are close, so they are scheduled together.  I was doing well.  My routine of meds followed by a half hour break to do swallow exercises followed by two cans of formula (720 calories) followed by a semi-solid snack of real food was working.  I was eating three snacks a day.  My weight was very stable.  The next step given to me was to begin with my real food and in greater quantity, then fill in with how much formula I need to fill up.   They gave me a nice yellow cookbook, too, filled with easy to swallow recipes.

Tuesday morning, I started out with great enthusiasm and a cup filled with Cheerios and soy milk.  To my surprise, I finished the cup.  I then followed it with a can of formula.   The Cheerios swelled in my stomach and soon I was lying on the couch bloated.  The rest of the day, I took it very easy with food.  On Wednesday, I ate most of a soy pudding first and then followed with formula, still not having confidence in larger than snack real food portions.  Again, the rest of the day, I took it very easy with food.

Today, I tried a cup of Cheerios for breakfast.  I finished about a third of it.  I had one can of formula, but did not feel satisfied.  I should be doing better.

On the plus side: I am close to being off pain meds.

My short term goal is to get out of the house more.  Today, we had repair people in all day.  Tomorrow, I walk the park or mall (depending on temperature) and go grocery shopping.  I need specific foods based on the Monday appointment to vary my meals.  I need a change of scenery.

I am angry with myself.  I can do better than this.  I must do better than this.

On Monday, I was feeling great.  I was with the program and progressing.  Today, I feel off.  It and I are not as bad off as I think.  This is just a tough day.  I have to bounce back.  I'm stronger and in less pain than anytime since radiation.  Cancer recovery is very challenging.  Time for me to buck up!

Thanks friends and family for your support, comfort, and love.  Special thank you to Renee who drove me on Monday - I stayed awake to and from Boston - a great sign that I am getting stronger.

Love...

Richard

Sunday Morning

Woke up around 5:00 am today, slept fitfully for an hour, then got up and coughed out my morning dry mouth which was a bit worse than usual.  I generally sleep with my door open so air and moisture can circulate, but yesterday Lacey Dog decided it was time to play ball (with the bell in the center ball) around 4:15 am.  Guess I have a choice of how to wake up.  Good sleep is elusive.  My best sleep is a deep nap.  I don't know if it's a factor of the medication or the experience, but nighttime is often nightmare time.  I did have a good walk yesterday, but don't/can't push myself to sleep with exercise.

Poor Lacey is likely senile at 4:15 am, wanting to start the day and play.  Today, she sleeps - what does she dream?  Dog dreams...

So I sit here at 7:13 am.  Voluntary.  It started as an overcast wet morning, but now the sun is sneaking out through the clouds.  Guess I'll get up and see what the day brings.  Hey, maybe I'll get one of those max naps!

I am wondering about Webster College/University Reunion 2010, the end of September, next month.  When I started treatment, I though I was a lock to be there.  Now it appears iffy.  Fatigue is part of the equation, but so is eating.  I don't think I want to go with a feeding tube still in place and the need to carry canned formula.  I am eating semi-solid snacks three times a day which is good, better every week.  But snacks of odd foods don't cover a recovering body's needs.  I see the Swallow Therapist and Nutritionist tomorrow.  Maybe they'll have some nice things to say.

Thanks all for your comfort and support.  You brighten my day and give me balance.

Love...

Richard

Light is relative

Maine was a wonderful break.  We're all back at our homes.  I napped most of the way on the ride to Worcester, when the city was announced I opened my eyes and everything seemed gray outside in the bright sunlight.   The lake cottages are dark; that way they hold the cool air on hot days.  We don't need the light away from the lake.  Worcester is urban gray, such a change after days on Sebago.  Funny how dark becomes light.

I'm doing my swallow exercises, eating semi-solid "meals", napping, trying to stay positive about my my solid food intake.

Thanks everyone for your words of comfort and affection.  They are much appreciated.

Love...

Richard

Maine via iPhone

My computer lays in it's bag. Posting via phone from Lake Sebago.

The weather is beautiful and the breezes sweet. This is a happy place for us. There are moments when the challenges of the past six months fade and life is simpler again. At lunch today, felt extraordinary happy - here with Ann, Dan, Adam; no particular reason, just blessed and grateful.

Still don't have that texting a post down yet. Thanks for your comfort and support and love. Rudy loves Maine and I love you.

Richard

Will I Have WiFi?

We're off to Sebago Lake tomorrow.  Charlene and Terry will be here with the animals.  I will check in during the trip if I have Interent access (my guess is yes).

Thanks all and safe travels Oyra & Luis.

Ready for Maine

The days are the same, getting ready for Maine.  I tubed my formula, ate vanilla pudding and baby squash, did a number of errands.  It was after lunch until nap time called so I napped the afternoon away.  Sleep, sweet, sleep!

Roster for Maine

Wind In Pines is special for our family.   We called Adam to let him know what was going on and he quickly decided that he was in and ordered his plane tickets.  Surprise family vacation in Maine!  Rudy is also coming with - here's what he & I will be doing some of the time.

Had a great eating day yesterday as far as semi-solid foods; breakfast - baby food apple sauce, lunch - one eggbeater equivalent of one egg, dinner - soy pudding.  Today, not so much, nothing went down.  The nutritionist and the swallow therapist warned me about days about days like this.  No bruises.  Tomorrow, I'll wake up with a clean slate.

And days like today are days that I rely on you to keep me focused.  Without you, I am lost.  Thanks for your comfort and support. 

Love...

Richard

Pattern of a day - with a travelin' twist

Not much news on the health front.  Still hurts when I yawn and do swallow exercises.  It'll be that way for a time.  I take meds through the tube (one of which makes it easier to digest and "move" the formula), wait a half hour, have my formula (yum-yum), then do swallowing exercises and east semi-solid food while the pain med is most effective.  Today my lunch times match yesterday.  Big whoop - I need something to find wonder in.

Ann is brilliant, ok you all know that!  Yesterday, Ann realized that her vacation (week after next) and Dan's vacation (next week) matched an open week at one of the cottages at Wind-In-Pines on Sebago Lake in Maine.  Dan moved his week to match and now we're going up to WIP a week from today through Thursday.  The trip probably would be too much for Ann to pull off alone, but with Dan's help, we can make it a real vacation.  Yum - more formula!  The folks at WIP are going to do some stuff to make it even easier.

WIP (link one official site---  link two my photos) is a rustic cottage colony that the four of us (Ann, me, Dan, & Ad) have been enjoying for well over two decades.  It is our place to relax.  This is a surprise bonus this year!

Thanks for all your consideration and concern.  I'll be carrying you up to Maine with me next week, we can revel together.

Love...

Richard

Fountain of Youth

Yesterday was a productive day at Dana-Farber, a day of reassurances.  I hear that the traffic into Boston wasn't too bad (the car rocks me right to sleep).  First stop was a dual appointment with Nutrition and Swallow Therapy.  I have been concerned that my inability to swallow more than one to three "bites" of semi-solid food at a time was marking me behind in my recovery from the radiation treatments.  Not so, I was informed.  My primary tumor was located on the base of my tongue - an area of muscle that pushes food down the throat.  It needs more time and work before it will have recovered enough.  We went and made up a list of foods to try - eating builds strength.  We reviewed the exercises and set up goals for the next two weeks.  Oh, and my weight has been stable (+/- 2 kilograms) since the tube went in!

Next, I had blood drawn and my ports flushed, then headed down to acupuncture for a session.  The only issue with having acupuncture in the middle of the day is that it makes me very relaxed and full of desire to operate on low speed.  

Side note: my hair (top of the head) growing in from chemo is soft and baby like, though brunette and gray.

Our last appointment of the day was with Dr. H. & Dr. H., medical oncology.  We reviewed my general state of being, pain and medications, and eating.  Once again, I asked about where I should be eating-wise and got the same answer.  Patience and work, boy.  Dr. H. felt that having my stomach tube removed in October was a good goal.  But the tube only comes out if the food coming in though chewing and swallowing (i.e. without out the tube) for a couple of weeks is able to do so without weight loss.  My CT and PET scans are now scheduled for August 30th.  On September 1st, we'll meet with the two Dr. H.'s and Dr. N. (surgeon) to review the scans.  The senior Dr. H. does not believe I will need surgery on my lymph nodes but they want to be certain all remnants of the cancer are gone.  If there is any doubt, they will remove a node or two. (I'm hoping for no surgery, but we'll follow the science.)

Thanks everyone for being here with me.  Your support is carrying me through the tough days and making me laugh during the easy ones.

Love...

Richard

Mirror daze

Yesterday and today are mirror days.  Three formula meals, swallow exercises, attempts to eat semi-solid/solid food mixed in with a mall walk and naps.

Tomorrow would be very much the same except it is Appointment Day at Dana-Farber.  There is a very busy day planned.  I get blood draw, have an acupuncture session, meet with the Swallow Therapist, the Nutritionist, and see the medical oncology team.  We have lots of questions centered on my swallowing progress.

I have no problem with the physical act of swallowing.  The substance being swallowed burns and/or the tongue and throat muscles hurt (they are still healing.)  I know that I must learn to swallow with comfort to fully recover, I know that I can.  The advice is "keep trying".  Plus, I have such hankering for real food!

Today, Dan started his day in town; his first appointment was here, so he stayed overnight, short commute, extra visit for us.

Thanks everyone for your words of comfort and love.  I think of you, friends and family, when the healing is most challenging.  I never feel alone.

Love...

Richard

Sorry promise

Friends and family, sorry I have been inconsistent in my posting to the blog.  And then I get concerned messages from folks worried how I am.  So here's my new promise.  I will post three times  a week to the blog.  I'm really sorry if I've caused concern with my negligence.  To say that little has been going on, or that each day is like the one before, is no excuse.

So where am I?  Still having little success with semi-solid/solid foods but am being patient.  Have appointments with oncol, nutritution, swallow therapy on Wednesday.  Maybe I need a kick in the pants, maybe I need to continue with patience.  We'll see.  This is getting tiring, just formula. If I need to toughen up, so be it.


On Friday night, Ann & I joined Jesse & Susan and Pam & Mark at Jazz At Sunset, a now twenty year series held at Worcester's Ecotarium  (indoor/outdoor science museum).  Ann & I stayed for the first set and had a really good time. The concert was a veteran big band featuring a young jazz vocalist.  The vocalist's parents are close friends of the big band players.  That added a special twist to the music.


Dan's in town today.  We visited my folks.


Though I have not posted as often as before, I think about you, my support network, every day.  You are my anchor and your love and concern keep me centered.  


Love...


Richard

Hurry up and take my time...

Last week, I saw the medical oncology team, today the radiation oncologist.   The message is about the same.  The med_oncon folks cut my pain patch level in half (50 to 25) and placed the primary goal on eating semi-solid food (scrambled eggs, pudding, yogurt, etc.)  The rad_oncon gilded the the pain patch up 12 to 37 because I've been hurting.  This seems to be a good compromise.  We'll drop back down to 25 in a week.  Healing is a slow complicated  process.  I'm being sold patience and it's the only show in town.  But one that makes sense.

My treatment started with curling as the background, then the general Olympics, and now the World Cup.  The NBA Finals were in there somewhere, too.  Sports makes an odd metronome!

My old plan is out.  I'm not back at work in late-June to mid-July.  The new plan is pretty similar - one day at a time - and follow the oncon rules.  When I reach a milestone, act surprised!  There's no book on cancer treatment recovery with set and dry times.

BeJae - our shivering bones cry out for this unrelenting heat - has always been a favorite verse.  I hear your guitar echoing the truth.

I'll write when the seas are calm and I'm awake.  My spirits are good.

Thanks everyone for your support and comfort.  You draw the roof and floor on my days.

Love...

Richard

Update

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

Love...

Richard

Busy week to come

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

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

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

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

Love...

Richard

Ann says I'm doing better

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

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

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

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

Love...

Richard

Why one day is different than another

Two days - yesterday and today.

Took a 30 minute walk each day
And a nap

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

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

It's going to be a fun few weeks!

Dan is on his way in from Cambridge.

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

Love...

Richard

For once, adverts on TV for food are delectable!

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

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

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

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

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

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

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

For once, adverts on TV for food are delectable!

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

Love...

Richard

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

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

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

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

Much to think about.

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

It's in the 80F's today!  And muggy!

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

Love...

Richard

Chicken or the egg?

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

Progress.

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

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

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

Love...

Richard

Sprung impatience

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

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

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

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

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

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

Love...

Richard

I must be patient.

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

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

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

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

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

Love...

Richard

 

I am a patient.

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

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

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

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

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

Love...

Richard

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

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

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

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

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

Love...

Richard

June 2, 2010 – Radiation 35 [treatment completed]

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

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

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

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

Love...

Richard

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

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

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

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

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

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

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

Love…

Richard

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

May 29, 2010 – Quiet weekend

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

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

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

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

Love…

Richard

May 28, 2010 – Radiation 33 [2 to go]

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

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

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

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

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

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

Love…

Richard

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