We have Closure!

Today we have closure.  The open wound that Paul came home with has official closed as of this morning.  I check it daily when I clean the J-Tube site and wound area.

 

This is a picture of the wound he was sent home with.  It measured 5 1/2 by 2 1/2 centimeters at the widest part and was approximately 2 centimeters deep.

March 23, 2013

It was a trial and error with which tape to use, most of the medical tapes, including the paper tape which the nurse highly recommended, caused Paul's skin to blister, tear away or become raw.  After finding a tape that would hold the J-Tube in place and not blister the skin, I was given permission to cut and pull the stitches from the J-Tube site.  The stitches had started to tear through the skin, pulling when he slept at night.  It has been a long process of cleaning the open wound site every other day which included cleaning the site internally and externally. Needless to say I now have proven to myself that I can do more then I ever thought possible.  Especially when the surgeon explained that I needed to remove any dead tissue from the inside of the healing wound so that it would heal correctly.

This morning it looked like this! 

May 31, 2013

I teased Paul that he now has two belly buttons.  Cleaning the J-Tube site will continue to be daily, and it is healing well.  Without the stitches pulling the skin, it is much less painful then when we arrived home two months ago.

The human body has amazing capabilities of healing itself.  The largest organ in the human body is the skin. Our skin creates a barricade that prevents harmful bacteria from hindering the body's natural operations. Openings not covered by the skin such as the nose are covered with mucus membranes that carry chemicals in the secretions that can destroy bacteria.  The human body is constantly restoring old cells with new cells that repair the damage that we create in and on the body. Our bones and muscles contain nerve fibers that grow and repair themselves. Even the liver can have as little as 25 percent of it remaining and can regenerate back into a full-size organ. 

Other updates:  The radiation effect of unpredictable vomiting has subsided dramatically over the last two days.  This is a cause of great celebration for me as I was terrified of leaving him alone because of the chocking and the bloody nose that would accompany the episodes.  Paul has actually eaten normal food today and yesterday.  Not a lot, but food nonetheless.  And it stayed down!!  His sudden onset of headaches has also diminished slightly.  It seems that the side effects of his chemo and radiation treatments are quieting down and slowly allowing him a more normal day to day life.

Paul had his Ultra Sound Endoscopy, Echo Stress Cardiogram, PET and CT Scan over the last two weeks.  We made three trips to Los Angeles and back and have one more trip coming up on June 6th, 2013.  This upcoming appointment is with the Thoracic Surgeon.  We will be discussing all the test results and date of surgery to remove the esophagus.  Paul and I are trying to write down all our questions so we can be prepared physically, mentally, emotionally and spiritually.  

We want to thank you all for the cards, prayers, well wishes and generous support.  The out pouring of love and caring has been tremendous.

Jo and Paul

 You don't have a soul. You are a Soul. You have a body. ~C.S. Lewis

Paul's Interim Bucket List 2013

Now that he has finished chemotherapy and radiotherapy, Paul wrote down a few items he'd like to see happening before the end of 2013. He fully realizes that a lot of it could change after his possible mid-June surgery.

One day (the first of many to follow) when I actually feel well.

Being able to swallow without fear of throwing up.

A barefoot walk along a beach, preferably on an island.

A walk through a forest.

Being able to get into a pool, and play waterball as well.

An end to daily fatigue.

An end to daily nausea.

Get back to work.

Able to eat a proper meal, and taste it.

No more tube feeding.

No more medications.

An uncomplicated surgery (esophagectomy) and rapid recovery.

Sail a real sailboat.

Watch waterfall create rainbows.

Soar in a glider.

Shower without having to repack wounds and clean up J-tubes.

No more diuretics or stool softeners.

See something I like and actually eat it.

Do a sunset hike.

Feel human again.

Paul

Update on Paul

Paul has officially finished with his Chemotherapy treatments.  I have mixed emotions over this since he was supposed to get 6 - 8 chemotherapy treatments and ended up only receiving 4 treatments. I am concerned and wonder did he get enough chemotherapy to kill of the necessary cancer cells? But I must trust in the doctors and continue to pray.    His white count was too low for them to continue with the treatments.  The Oncologist feels it is safer to let his body heal before having surgery than to take the chance of creating more problems.  He did receive four shots of Reupogen to help the body produce white blood cells.  The shots are working as his count was up yesterday.

We are keeping on schedule with his radiation treatments.  He will be finished with those on Wednesday.  Then on to tests,  rest and healing before surgery.  We do not have a surgery date yet, that will be discussed with the Surgeon on June 6th, after his Stress Echo-cardiogram,  PET scan, CT scan and the Ultrasound Endoscopy scheduled for the end of May.

Paul is not eating any foods but continues to get his nutrition via the J Tube.  He can not take any medications by mouth so those are all crushed and dissolved into a liquid state to be given via the tube.  So far this is working well. With all the medications going into the J Tube, they have to be spaced apart at intervals where they will not interact with each other.  It has been a challenge to create a schedule that works, but I think we did it!

Paul sleeps a lot during the day.  I believe this is good as it sleep allows the body time to regenerate and heal.
The last week he has been under "House Arrest" to keep him from being exposed to anything out there.  I know he wants to get out.  He is tired of being cooped up.  You can only watch so much T.V.!  He has been having waves of nausea and vomiting.  According to the doctors, this is a normal reaction.  I always thought it would have happened right away, but in Paul's case, his body held on and is now suffering the effects of the Chemo and Radiation treatments.  I guess we were lucky in that aspect, it could have started at the beginning and carried through to now.  Paul's comment from this past week.... "I would like to feel normal, just for one day"  I keep telling him that it will happen, maybe not right away, but it will happen.

On a good note to all this. Paul should be able to get out of the house next week and enjoy some sunshine and fresh air.  He always seems to do so much better on days when he is able to interact with people, whether it be sitting at the pool, a visitor to the house or even a walk to pick up the mail.

Thank you Deb for the Lavender Girl, it brought back wonderful memories of Paul's grandmother.
Thanks to everyone for your prayers, cards and well wishes.

Jo and Paul

A man walks into a bar and orders three beers.

The bartender brings him the three beers, and the man proceeds to alternately sip one, then the other, then the third, until they're gone.

He then orders three more and the bartender says, "Sir, I know you like them cold, so you can start with one, and I'll bring you a fresh one as soon as you're low."

The man says, "You don't understand. I have two brothers, one in Australia and one in the Ireland. We made a vow to each other that every Saturday night, we'd still drink together. So right now, my brothers have three beers, too, and we're drinking together."

The bartender thinks it's a wonderful tradition, and every week he sets up the guy's three beers. Then one week, the man comes in and orders only two. He drinks them and then orders two more. The bartender says sadly, "Knowing your tradition, I'd just like to just say that I'm sorry you've lost a brother."

The man replies, "Oh, my brothers are fine -- I just quit drinking."



Research has shown that the mere physical act of smiling, without actually feeling like it, triggers internal biological reactions that stimulate emotions and contribute to a better mood - in you and others.  In other words, when you feel down fake a big fat smile and you will lighten up automatically.  So keep smiling and while you are at it, why not share a joke or two!

Mother's Day ... A Memory of Mom

 It's been 3 years since mom left this earth. Mother's Day and so many memories fill me with a love that can not be compared to any other love.  A mother's love is different, it is unconditional, accepting.  Well, at least my mother's love was that kind of love.  I learned from her, that no matter what your children do or say, you love them, because they are your children.  But today is not about children, it's about mothers and especially my mother.

It was while visiting her on the farm, not long after my dad had died, she and I had come to a turning point in our relationship. I drove to her Wisconsin home from Chicago, my four kids in tow, for a weekend visit.  After the kids were safely tucked into bed and asleep, mom and I went out for a walk under the moonlight.  I am especially fond of moonlit nights for many reasons, one being that they remind me of my mom.  But that in its self is another story.  After walking around the pond and checking the chickens, mom and I sat at the old worn out wooden picnic table, under the massive trees beyond the big garden where my brother had built a tripod grill over a small cooking pit.  It must have been Spring because I do not remember it being hot or cold and there were no mosquitoes. We sat there watching the moon rise up over woods beyond the neighbors plowed field and talked.  We talked about everything, her life, my life, children, love, families.  I remember feeling at peace with her on a level I had never experienced before.  As we sat and continued talking, she decided that we needed a drink and a bit to eat.   I was sent to get the bottle of Polish Blackberry Brandy hidden in a drawer of her bedroom dresser, 2 glasses, a couple hamburgers from the freezer, bread and plates.  Off I went, back to the house to fetch what momma ordered.  By time I came back, she had a fire going and she was smiling.  We cooked the burgers over the open fire, enjoyed a drink and talked more.  I remember being sent back to the house for ice and to check the kids.  We talked and laughed, sharing stories, feelings and a love that is beyond any words that I can write here.  By the time we were done the moon was well above us and the bottle of brandy half gone. I think this was the first time mom and I shared a drink, just the two of us, as neither of us are big drinkers.  For the life of me, I can not recall the exact conversations, but I can recall the feeling of shared love.  It fills me, even now, after all these years.  

After that visit I saw my mom for being who she was.  She was not just my mom, she was this extraordinary woman who bound an entire family together.  Not just her family, but every family that came in contact with her.  She was the oldest of 13 children and took that position very seriously.  She was an anchor for everyone in the family.  Her opinions were valued, her advice sought and her never ending love filled all those around her.  She had a heart that never stopped giving.  I watched her many times give when she didn't have it to give.  Her door and home was always open to anyone who needed a cup of coffee, a meal or a place to spend the night and many times longer.  No one ever left left her presence empty handed or empty hearted.  Momma just had a way of making everything okay.

 

I can go on and on with memories and stories, but I lack the ability to convey them with words that would do them justice.  So instead I’ll just post a few pictures.

A family picnic

Yosemite National Forest

On the beach of the Pacific Ocean

Still teaching me the finer points, sewing lessons at 87 year old. 

88th Birthday surprise

One of my favorites... Look at that smile... Feel the love!

Cocoa beach on the Atlantic Ocean

89 years old and still dancing the night away!

Christmas 2009

 I was blessed with being with her during her final weeks.

The last picture, March 30, 2010, two days before mom died

I love you mom, Happy Mother’s Day

Latest update on us!

We had Gage here for a few days last week as mamma Elizabeth had some commitments to attend to in L.A..  Gage lit up our lives with his laughter and love, hugs and kisses.  If ever you are feeling weighed down by the tribulations of life and you need your soul fed, just have a two year old stay with you for a few days! His inquisitiveness and fresh look at life was just what the doctor ordered for me.  We fed the fish bread in the pond outside of the Clubhouse, fed the ducks the leftover bread from the fish in the pond behind the clubhouse and took a short joy ride in the desert.  Gage loved driving the golf cart and even managed to get the hang of steering it in the right direction.

Me and my boy!

Since Paul was feeling up to it, we spent a couple of hours at the "Children's Discovery Museum of the Desert."   The Children's Museum offered "hands-on" activities.  There was so much to do from learning about a pulley system, with Paul assisting in the pulling, to becoming an Archaeologist and digging for long lost treasures.  Playing with trucks, shopping in a small "right size" Grocery Store with shopping carts that were his size, making a pretend Felt pizza in a Pizzeria and climbing over and under in a String Maze are just a few of the things Gage enjoyed doing while at the museum.   Gage even got the chance to paint an old Volkswagen car!  How cool is that?

Putting on the safety belt.

Pulling up.

My little Archaeologist

Getting a closer look.

Don't forget the tires!

 Since Paul is not able to get in the water, Gage became my swimming buddy!  Gage and I had so much fun swimming together that Paul took a video of us.  I had bough Gage a pair of swim trunks and then found a swim vest.  I attached the vest to the trunks and he took off swimming.  Yep, I'm an protective Grannie who was terrified of "letting go"   We can't wait for his next visit and more swimming together

 After two weeks of being able to eat, Paul has once again quit eating via mouth.  He can no longer swallow as a result from the radiation causing the esophagus to become inflamed.  He is not even taking his medications by mouth.  Everything is being crushed and/or diluted and given via the J-tube through the intestines.  The Ensure and Boost drinks don't go down well anymore but he is able to get down very small sips of thin liquids ...water, green tea and coffee.

Paul's blood count has dropped so low that the Oncologist has stopped all chemo treatments.  He received a shot today that is suppose to help his body produce White Blood Cells.  He will receive the shots over the next 4 days, yep, including the weekends!  I didn't think the doctor's office would be open on Saturday and especially Sunday, but it will be for these shots.  Paul is now taking a strong antibiotic since he has been running a low-grade temperature over the last 2 days.   Needless to say, I will be making sure he gets plenty of rest and stays away from crowds.  I teasingly told him he is under "house arrest" and "quarantined."  If I have to I will make him wear a mask when leaving the house, I do not want him exposed to the lingering flu germs that the nurse said are hanging around!  The Oncologist was adamant in stating if Paul's temperature rises above 101 degrees, he is to be taken to the hospital for intravenous antibiotics.

Moving forward to the next stage ... Paul has appointments at USC for a follow-up Endoscopy, P.E.T scan and a C.T. scan all before the end of the month.  We will then meet with the surgeon on June 6th to discuss  the details of the esophagectomy and set a date for surgery.  I know that Paul is looking forward to this all being behind us and returning to a normal life, even if it  is going to be a "new normal."  I have read many encouraging  things from different support groups on the internet.  Yes, there is  a lot of complications that can arise from surgery and in the weeks following, but we are going to focus on the positive.  Besides, we know there are so many people praying,  things have to go well.

I want to send a special Thank You to Chris and Bryan, Thank you for the help, you will never know how much it is appreciated.  To Mic, thank you for your ongoing "helping hands"  Joyce, Cindy, Joanna, Ted, Elaine, Ron, Kathy, Terri, Sue, Dick, Jean, Anne, Zana, JC, Garrett, Donna .... the list goes on and on..  we can never thank you enough for the prayers, cards and well wishes.  One more special thanks, my Big Sis, thanks for putting up with my tear filled calls, always understanding and being there, even if it is a thousand miles away!

 Jo and Paul too!


Surrender to what IS
Let go of what WAS
Have faith in what WILL BE.

The Journey Continues ...

Paul is now half way through the treatments.  His biggest complaint is the  fatigue that he feels on a daily basis.  He tires very easily so our routine is not a busy one.  He also has been getting headaches, but we hope that will resolve itself sooner rather than later.  We saw all four of his doctors last week.  

The Radiologist says he is doing wonderful, and is happy to hear that Paul is not suffering any of the serious side effects to the radiation treatments.  

The Primary Care Physician thinks Paul is doing very good and is obtaining the needed referrals for the pre-surgical heart testing requested by the Thoracic Surgeon.  

The Thoracic Surgeon feels that Paul is healing remarkably well and wants to schedule surgery for 4 weeks after the last radiation treatment.  He will be ordering a PET scan and performing an Endoscopy before he goes in to remove the esophagus.  Tentatively, surgery could occur mid June.

The Oncologist has stated that because of low blood counts Paul will now be scheduled "week to week treatments" instead of giving him a monthly schedule for Chemo and if needed the dosage will be reduced or treatments stopped due to the blood counts going too low.

None of the doctors had an explanation to the almost daily reoccurring headaches.  We have tried to track a cause as to what could be the trigger to the headaches, but there is not a set pattern.  They come on suddenly, last 15 to 30 minutes and are then gone. It may be one a day or as many as five but almost always in the evening or wee hours of the morning.  My hope is that it is an unusual effect from the treatments and will stop when the treatments stop. 

Paul is eating at least once a day ... something ... a small bowl of soup, a fried egg, mashed potatoes and gravy.  I keep asking if he is hungry, but he has no appetite.  He has not lost any more weight, in fact it is up to 148.5 pounds and for that I am thankful.  We have some wonderful friends who invite us out/over to eat and Paul has managed to get down more then a couple of mouthfuls.  I think he wants to show off how well he is doing.  Right now we are feeling optimistic that things will continue to progress on a positive note and he will continue to gain weight before surgery.

The Winter season at the resort is winding down and most of the snow-birds have headed back North.  Once again the resort is unusually quiet, laundry room empty, golf course empty and the traffic on Dillon Road is returning to it's slower Summer pace of one car at the stop sign instead of 5 or 6.  The hot  Summer weather returned with a surprise this week with a record breaking 106 degrees but a promise from the weatherman that the normal 80's will be upon us next week.

We had friends from Arizona, Terri and James, stop for a visit while they attended the Stagecoach Country Music Festival in Indio, which is a hop, skip and jump from us.  It was great to spend time with them.  We met them at the College of the Desert Street Fair which is a weekly open market/swap meet selling new items at good prices.  Before heading back home they stopped by for a visit and a chance for some goodbye hugs.  Anyone who knows me, knows I can never can get enough hugs!   

Speaking of friends ... Ron and Elaine, thank you for sending the funny card!  Your cards always make Paul laugh out loud.  They say laughter is a great medicine, so thank you both for the "Shot in the arm!"  On that note, do you know they actually make cards for people dealing with "Cancer"?   Paul received one and it just blew our minds.

Dick and Rick, thanks for the Swamp Cooler and all the other blessings you  have bestowed upon us.  We'll figure out that Swamp Cooler if it's the last thing we do!

Mick, where do we begin?  Thank you for getting our home back to a livable condition. You are a blessing!

Karen and Bob, thanks for the dinners, conversation and camaraderie.

To all the people that allow me to collect hugs every week, thank you!  
You have no idea how much it helps me get through the coming week.
You fill me up when I am running low.  
You are a soother to my soul.

Thank you for the prayers, well wishes and cards.
We are truly blessed and surrounded by angels.  

Jo and Paul