A lot of time goes by and...

I posted this as an answer to a comment, but thought I should add this as a blog entry.  Thanks, everyone:


Everything is well.  I paused posting during my rehabilitation from radiation.  The rehab period was the most difficult period for me, partly because I was at home and not interacting with other patients and clinicians (partly because the impact of treatment peaked.)

I am cancer free and now over 15 months since completion of treatment.  My body has reached its new normal.  My stamina is fine but well below its level before I got sick.  Need a daily nap.  Can exercise and do most days.

My swallowing is very good - just eat slowly and avoid super dry foods.  My taste buds & sense of smell have "evolved."  Food that used to be my favorite (West Asian, Italian pomodoro) are not real enjoyable.  Food that I used to rarely eat (Indian, East Asian, in general spicy food, poached eggs) I now love.  Not sure if it's good or bad, but I haven't found a dessert that I like.  Thankfully, coffee - my prime vice - is once again delicious.

I wake each morning grateful for the day.  I have no bad days; each is precious and should not be wasted.  Cancer takes but gives.  I learned a lot about myself, gained perspective, and had the wonderful gift of seeing friends & family gather around and help me.

Next Sunday, I'll walk the Dana-Farber Cancer Walk (opted for the five mile).  Last year, I could only be a virtual walker.  A year later I look back and recognize how lucky and blessed I am - with friends & family & strangers who prayed - and with the care and expertise of the clinicians and physicians at Dana Farber.

If you know anyone who is going through diagnosis or treatment for cancer - especially head & neck/throat & tongue - who needs someone to talk or correspond with, please let me know.  I relied on the experience of others and am happy & fulfilled to share hand-hold whatever.

Thanks again everyone.  You walked the path with me and I never felt alone.

Love,

Richard

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