Saturday, December 28, 2013

Christmas Presents

I have always been a big fan of Christmas.  Early on I'm sure that presents had a lot to do with that.  But my early memories included the joy of the big family gathering on Christmas Eve.  All my cousins on my Mom's side of the family were there.  Such great fun!

As we grew older with families of our own, the cousins celebrated separately.  Dottie and I have been hosting Christmas Eve quite a few years now with my siblings and hers, and other family and friends.  It still is a highlight of the year for me.

This year, as we started to get ready the the party, I was having trouble swallowing.  I could not even get a drink of water down.  It never had been that bad for that long before.  You could imagine my dismay when I envisioned having to call off the party and go to the emergency room.  YIKES!  Luckily, after my nap, the pipes opened up again.  But that was not the end of the evening troubles.  As everyone was arriving, the fire in the fireplace was lit and we soon discovered the flue was closed.  The house was filling with smoke and people at the same time.  YIKES, again!  Luckily with the help of the attic fan and open doors and windows, we were able to clear the air and proceed with the festivities.  We ended up having a wonderful time with everyone.

I am still counting my blessings for my early Christmas present (swallowing) and sharing a precious evening with our loved ones.

More pictures to illustrate the presents that brought Dottie and I joy.

Lucy with that smile for grandpa dyno

The joy in Lucy's face playing with her new Elmo doll.

We hope everyone was able to find love and joy this year.

p.s. I have been able to swallow much better since Christmas Eve.

Thursday, December 19, 2013

Waiting Rooms...

…can be tough too.  Here is our experience this last week: 2 Rooms, plenty of waiting.

Last Wednesday I had an appointment with my dermatologist.  Dottie decided to go with me since we were running errands afterword.  That was a big mistake.  We waited an hour and a half in a small fairly crowded waiting room.  That was bad enough, but Fox News was on their TV the whole time.  Those of you that know my political leanings can imagine how this compares (for me) to some of the treatments I have been through.

That shot was of my last skin treatment this past spring.  Ouch! Forehead only so as not to break the blaug site.

On a side note, this visit reminded me of an old George Carlin routine where he talked about cancer.  He maintained that if you had cancer, you needed another kind so they could kill each other off.  I must be in great shape.

This Wednesday, Dottie and I spent about 5 hours in the Barnes Jewish surgical waiting room.  It was a much better room than last week, but still a long time.  We were there because our son, Nathan had surgery to remove part of his colon.  While our wait was tough, Nate had a harder go of it.  Luckily, the surgery was a success. He'll be in the hospital 5-6 days and will be somewhat recuperated by the time I have my surgery in mid-Jan.

That is enough for now, but I'll leave with a couple of shots of what I do when I'm not in a waiting or treatment room or fixating on music?

   Watching birds from my kitchen.

Friday, December 13, 2013

Beginnings and Endings

Radiation - While the number of treatments decreased this week, the side effects escalated.  The  swallowing problems became more like I was warned about.  They dogged me most mornings this week and the pain level increased.  The pain may have been partly from my frustration and anxiety.  I know I must have scared Dottie with some of the faces I made.  Sorry honey.  I guess I knew it wouldn't be a cake walk - I would like to have eaten some of the cake.  Luckily, during each day, things got better and by dinner, I was able to eat solids fairly well.

Today, Friday, was my last treatment.  Hooray!  I was able to eat breakfast.  Woo Hoo!  BUT, I was told this past Monday that "the effects from the treatment will continue to work for approximately 5-7 days."

Be that as it may I was upbeat on the drive in.  As usual Outlaw Country (music) came through from the start.  "Joy", by Lucinda, "You took my joy.  I want it back!"  Great song, upbeat.  I AM getting my JOY back.  Next up was "Movin' On" by Justin Townes Earle.  Another great song.  It made me think about Beginnings and Endings - one thing Dottie loved about teaching.  I ended Chemo.  I am ending Radiation, Movin' On to healing.

Next up… We'll talk about that later.  Gotta enjoy the moment. 

Speaking of that, check out the quote on the Radiation Bell I rang today.

I want to thank the Doctor and Radiation Therapists for getting me to this moment, this Ending.  Great people.  Great Job!

In fact, one of them, Ben had this very cool display up in the waiting room…

...and now, Let the Healing Begin.

Thanks again!

Saturday, December 7, 2013

Next Steps

Getting tired is getting old, or is it getting old is getting tired.  Swallowing has been easier this week: hydrate, hydrate, chew, chew.  Side effects continue of course, but they are definitely manageable.

From here we have 5 more days of radiation and then some time to heal.

I met with the Medical Oncologist this week and he set up a couple of follow-up dates.  Jan 10th for the next PET scan.  This will help staging for the upcoming surgery.  I will meet with the oncologist again on Jan 13th and then the surgeon on the 15th.  The surgery should be very soon thereafter. 

While we are anxious to get that done.  We know it will be tough.  All I can say is, "Bring It On!"  We have so much support from everyone, cards and letters, thoughts and prayers.  We know we are not alone.  Thank you ALL!

Our diversion this weekend, besides the weather, has been Lucy.  Such a cutie.

She also some how wangled a new addition to our animal crew.

Al need a little company.

Monday, December 2, 2013

One Down…

Monday was my last scheduled chemo.

I got a nice send-off from the Infusion Center crew as we thanked them and I rang the bell signifying the final treatment.  It was kinda weird, kinda bittersweet.  I didn't mind the actual treatments, the staff and volunteers were great, very positive and caring.  Side effects were not as bad as I expected.  They still suck.

So what else do I say about it?  I keep thinking of the others in the large treatment room:  older, younger, too young.  Everyone calmly (probably gladly) accepting their drugs.  The loved ones hanging out with them.  Everyone working towards their goal: Cancer Free!  I feel like I may miss the place - and miss it for a long time;)

Check out the IV break in the Infusion Parking Lot.

I celebrated my last chemo with an order of sweet potato curly fries from the cafeteria as I was being infused.

My condition is relatively the same.  Still suffer some swallowing problems and I get pretty tired during the day.  Emotionally we are hanging in there, staying positive.  I still have 9 more radiation treatments to go.  Those are quick and easy.  Later comes the surgery.  We press on.  … Two to go.

Friday, November 29, 2013

Giving Thanks

Dottie and I are very grateful for all the support.  Thanks so much to all Family and Friends.  We love you all!

What? No Turkey?
Lucy chows down on Deer Sausage on Thanksgiving.

I'd be disgusted, but I did the same thing most of my life.

...and now for something completely different....

Anybody remember this?

Enjoy the Holiday weekend.

Tuesday, November 26, 2013

That's How We Roll

Swallowing problems return for the weekend.  Quite frustrating when you are hungry and trying to eat tasty food (that you fixed). 

Frustration gets the emotions a little sensitive.  I spent a little time Saturday night seeking refuge in some music.  Came across a cover of one of my (many) favorite songs, "Wagon Wheel."  Found more versions, got choked up.  Love that song.

This experience reminded me of a quote from "Freuds Last Session" that Dot and I saw at the Rep the other night…
Freud:  Works of art have a powerful effect on me, but music mystifies me.  Something within me, something rebels against being moved by a thing without knowing why it moves me.  It's like being spoken to in a foreign language and being asked to agree to a statement you can't comprehend.

Sunday continued with the problems swallowing.  It sucks!  This time I diverted myself by running to the store.  Started the car.  The radio came on with Old Crow Medicine Show doing "Wagon Wheel" my favorite version.  Coincidence?  I think not Dr Freud.  While I agree "Musik kann furchterregend sein," it can also be uplifting.  I laughed and cried all the way to the store, loving it the whole way.  That's just how some of us humans roll Sigmund, understand it or not.

Sunday night and ever since, I can swallow again!  Hooray!

Monday I had my 4th out of 5 Infusions (chemo) and my 13th out of 25 Zappings (radiation).  I even had the honor of being zapped while connected to my IV.  It was a little tricky, but they made it work.  It was a good day!

All I got left for now is…

Rock me mama like a Wagon Wheel, Rock me mama anyway you feel,
Oh.... mama Rock me...

Thursday, November 21, 2013

My Chemical Romance

Wednesday we met with the Medical Oncologist.  His plans are for only 2 more Chemo treatments for a total of 5, the last one being Dec 2nd.  Radiation runs through Dec 13.  After a recovery period and another PET scan, surgery will probably follow in January.  The doctor said that the current plan is to NOT have additional Chemo after surgery (if all goes well). 

I guess I can handle the Chemical breakup.  Did I hear a Woo Hoo?

Current conditions include appetite okay, swallowing okay, but feeling more tired and sleeping a little restless.  The Doc says I should not lose all my hair, but I am noticing increased shedding.

Not much more right now.  Continued thanks to everyone for the support.  I'll leave with a couple of pics of young ones that keep me smiling.

Thanks Antonio for the "stand up"

Thanks Lucy for being so gosh darn cute!

Monday, November 18, 2013

So Much For Pancakes

1) Pancakes

Sunday morning we had pancakes and fake bacon for breakfast.  While some people might find the idea of fake bacon hard to swallow, I just could not get the pancakes down.  I worried this was the beginning of the real swallowing problems I was warned about.  Even before breakfast I seemed to have problems the small pill I take before I eat.  I wondered if I would be able to eat solids or take my pills.

I had a smoothie for lunch and then luckily I was able to eat dinner, careful to chew it into small pieces.

Monday I met with the Radiation Oncologist and his nurse.  When I told them about the difficulty in swallowing the nurse asked how bad the pain was on a scale of 1 to 10.  I said there was no pain, I just couldn't swallow the pancakes.  The Oncologist explained that the radiation and chemo are making the tumor shrink and the opening wider but people will feel a lump when they eat some things.  Some foods in particular (bread-like) may pose difficulties.  They stressed to keep hydrated and sip water frequently to keep the throat clear.

I felt relieved.  I was able to eat and take my medicine okay today.

2) Pillars

In the MoBap Cancer Center they have structural pillars that are decorated with hand painted tiles from patients, family and friends.  I find these inspiring, offering support to all.  It makes me think about the pillars in everyone's life, the people who provide support during times of trouble.  Those pillars of strength, hope, faith and love are real heroes.

A couple of examples come immediately to mind. One is my niece Ashlee who is such a pillar for her young son Jack and his health problems.  The other is Dottie.  She is my pillar, my strength.

I know I'm getting schmaltzy.  Tough.  Thanks to all the pillars.  Thanks to all those that offer thoughts, prayers, love, strength and support to everyone.  You Rock!


For a little less inspiring example:

Talk about STRENGTH: Here is Al providing support for a good buddy's company…

Thursday, November 14, 2013

Magic Carpet Ride

Today was day 6 of the Radiation Ride.  On the Radiation Room Radio they play KLOU (oldies): sometimes soothing, sometimes poignant.  Today I heard, Somebody to Love and Dr. My Eyes, yesterday was Lean on Me.

The Coolest was the 1st day of Radiation.  As I lay on the moving table, Steppenwolf came on the air with Magic Carpet Ride.  The table stopped.  The Radiation ensued, "bzzzz".  I felt the hairs on my arms and upper body quivering.  Wow!

It's not so dramatic anymore.  My hairs still quiver (while I have them) but it has become a routine.  A good routine.  I feel happy to work this problem through.  It will be tougher as it goes on, but it is worth it.

Here is my buddy posing on the Magic Carpet...

"Close your eyes girl.
   Look inside girl.
    Let the sound take you away."


Monday, November 11, 2013

Full House

Today I had my 2nd Infusion (chemo) and 3rd Radiation Treatment:  a pair and 3 of a kind.  Mondays are my long day (4 hours at the hospital).  Everything went well, still no bad side effects, but got warned that in a couple weeks it might get painful to swallow.  Just in time for Thanksgiving!

Still can't complain.  Everybody is great and no nausea!  And yet I did have one disappointment: no Animal Crackers this week!  What gives?

Dottie came to the rescue with Sweet Potato Fries from the Cafeteria.

Another bright note is that today I heard from Debbie E., an admin on the team, who is still pursuing my records.  She had contacted St. Alexius which merged with Forest Park/Deaconess Hospital (thanks Sal) and they continue to dig through the stacks.

One last shot.  This one from 1990.  Is this look in my future?

Saturday, November 9, 2013

2 Zaps, No Waiting

The start of radiation was quick and easy this week.  Wednesday was a dry run with Thursday and Friday bringing the real thing.  It only took 10 minutes each and I didn't notice any ill effects.

Luckily the Chemo from last Monday didn't make me feel too bad.   I've been warned it gets worse.  In the mean time, so far so good.  One week down!

Thanks for all the support.  It helps tremendously!

Speaking of help, my good friend Becky Blackfoot introduced me to a new companion to help me through this.  I named him Al.  He accompanies me to my sessions...

Monday, November 4, 2013

Sex, Drugs and Rock & Roll

Well 2 out of 3 ain't bad!

Day 1:  Chillin' in my chair diggin' on chemical infusion.  Rockin' on my roost to the roar of the Rolling Stones.

Dottie warned that some people may get queasy over details.  These asterisks are my attempt to notify of such sections...

                >> Detail section you may want to skip <<
On arrival the nurse accessed my Port A Cath pushing a needle through my skin and into the port.  I did not flinch.  She said, "You are going to be good patient."  I thought, "just you wait."

She drew 3 vials to run my chemistry and hooked me up to a Saline drip.  I was given about 11 small pills (4 different kinds) to help manage the side effects; then a half hour wait.

Next came 2 separate Chemicals each for an hour.  Overall we were there about 3 hours.

This is a big place and there were a lot of people coming and going with quite a few people getting treatments.

 At one point I noticed a two different people leaving that had started treatments after me.  I felt like jumping up in my chair and shouting something like, "why them?" or, "this is wrong."

Honestly, it was fairly easy day.  We read, played Words with Friends, listened to music, and had several visits from staff and volunteers to provide help and info.  Below is the Dietician Gorilla Animal Cracker saying, "eat me."

So Far So Good.  The people were great.  I have not experienced much in the way of side effects except being light headed, but HELL, I have been dealing with that for years now.

We do this for at least 2 or 3 more Mondays, see the Doc and probably set up for a couple more if I tolerate the chems well.

Radiation this week:  Dry run on Wednesday and treatments Thu & Fri.

p.s. they say my hair WILL fall out.  Can any one say HEISENBERG?  Gots to get me one of those hats!

Friday, November 1, 2013

Schedule is set ( for now )

Today I got a Portacath put in the front of my right shoulder to make it easier to administer the chemo and draw blood.  Monday I start my six weeks of chemo, all administered on Mondays.  The chemo treatment changed since Radiation is now in the mix.  I will not have the pump doing the 48 hour treatment (just 2 hours on Mondays).

Radiation starts Wednesday (11/6) and goes Mon-Fri thru 12/18.  Surgery will follow after a recovery period.

Thursday, October 31, 2013

>>>> New shit has come to light. <<<<<<

They found 1989 Radiation Records and have added the Zap machine to the regimen.

Got that call on Wednesday.  We met with the Radiation Oncologist again on Halloween and got set up for Radiation next week.  The scary part is,  I was excited about getting Radiation.

The long ride begins

I had occasional problems swallowing problems that got more frequent this fall.  On Monday 10/14 I had an Upper Endoscopy and was told I had Barretts Esophagus and High Grade Dysplasia (pre-cancer).

On Monday 10/21 I had an Endoscopic Ultrasound which revealed cancer, but it was contained.

That Wednesday we met with a Surgeon who planned to remove the Esophagus and cancer.

Thursday I had a PET scan which revealed the tumor was bigger than first thought so the surgeon wanted to consult with Oncologists.

Friday (10/25)  we met with a Medical and then a Radiation Oncologist.  At this time the plan was to do both Chemo and Radiation followed by the surgery.  The problem was they needed to find my old Chemo and Radiation records to see if this plan was feasible.

Monday (10/28) the medical Oncologist called and said they would only do Chemo then Surgery because they could not find Radiation Records.

What a Roller Coaster!  We are hanging on Tight!