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