Friends, celebrations, and life .......

We have had a great week with visits from our wonderful friends here at Caliente Springs.  Dick and Rick brought over a Swamp Cooler for us to use as the summer heat is starting.   Joyce, thanks for the fresh veggies, they were delicious.  Breakfast with Bob and Karen where Paul proceeded to eat an egg and a couple tablespoons of potato, he even ate a breakfast sausage!   Time spent with Carolyn, it was so nice to get-away and relax.   Joanna and Ted, you have been amazing, thank you for filling up our truck with gas for this upcoming week of appointments!  We can not thank everyone enough for their love and support.  

Grandma Barbara joined us in celebrating Paul's daughter Jennifer's 25th birthday.  It was a wonderful dinner and we talked about so many things including Jennifer and Jason's plans for their wedding within the next year or two.  No date set, but the plans are in the making.  Where have the years gone?  

Proud dad!

Grandma Barbara

On to the update on Paul .......

Paul has had three chemo treatments and seven radiation treatments.  He is holding up well.  Fatigue is his biggest complaint. With the possibilities of all the side effects he could experience this is really a blessing.  Thank you for all the prayers as I believe this is what is helping.  His blood pressure has been great and he has managed to gain a pound or two.  

Over the last few days he has started to suffer sudden onset headaches.  They are on the right side mid-forehead.  Throbbing, stabbing, increasing intensity, within fifteen to thirty minutes they are gone.  These headaches are reoccurring a few times a in a 24 hour period.  I am tracking to see if there is something setting them off, but so far nothing is creating a pattern.
  
Paul suffered Cluster headaches for years back in the late 1990's to early 2000's.  They had stopped in 2004 as suddenly as they started.  The Radiologist gave him a prescription for Imitrex.  Problem is the pills would have to be crushed and dissolved, and I'm not to sure how that would work with the chemo medications so will be addressing this with the Oncologist.

We have an appointment with the Primary Physician today to obtain a referral to a Cardiologist for some pre-surgery testing. I am writing down questions.  We not only have our weekly chemo and daily radiation appointments this week but we also have the added appointments with the Radiologist, Oncologist and Thoracic Surgeon in Los Angeles, for a follow-up from J tube and Chemo Port surgery.  I am hoping the surgeon can give us a tentative date for the Esophagectomy surgery. Paul's wound continues to heal beautifully and has diminished in size.  It is less then half of what it was when we arrived home from the hospital less then a month ago.  The human body is amazing and God is good.  Onward to this week of doctor visits and treatments.

Looking better all the time!

Thank you all for your prayers, visits, cards, and support.  We are blessed with the most wonderful family and friends in the world! 

Jo and Paul

Life isn't about waiting for the storm to pass...it's learning to dance in the rain.

Paul has been blessed with not having any side effects from the radiation and chemotherapy.  Well, not yet!  He has had a bit of muscle aches and headaches, but no vomiting or hair loss. The Radiologist has recommended that he drink a shot glass of Aloe Vera Juice a few times a day to help relieve any discomfort in the throat.  Luckily he can swallow that without a problem.  He is not really eating as he tried some scrambled eggs on Friday, it got stuck in the throat and made for an awful experience.  He is trying to eat a bit here and there. A tablespoon of yogurt, creamed soup, a sip of a fruit smoothie, and even a teaspoon of mashed potatoes with a lot, and I do mean a lot, of gravy.  All in all we are doing okay.

We have been continuing with daily walks around the neighborhood.  Some walks take us to the  clubhouse where we pick up mail. Other walks end up taking us to friends homes where we sit and chat for a bit.  We even ventured out to Whitewater Park where we walked around for 20 minutes before Paul tired out.  When we were getting ready to leave Paul spotted a Big Horn Sheep up on one of the hills.  A great reward for a wonderful walk.

Big Horn Sheep Saturday April 13, 2013

I am slowly dealing with all the paperwork for insurance companies; COBRA and California State Short Term Disability for Paul. We had filled out all the paper work for the Short Term Disability when at the hospital, but upon a follow-up call Monday morning, I learned the Social Worker at the hospital misplaced it, so it was never filed with the State.  Just one more set-back in a long line of things that have gone wrong over the last few months.  According to the State web-site it will take 4 weeks to receive the paperwork to fill out.  We will get it filled out as quickly as possible then ask our Oncologist to fill out his part.  Hopefully the wait won't be too long to see if he will qualify.  We have both been out of work since March 4th.

Some of you are aware that 2 weeks after Paul was diagnosed with Esophageal Cancer, our new Park Model home was flooded with sewage.  A RV traveler who rented the spot next to our place put his sewer hose from his RV into the sewer line.  Well, he had it in so far in that it caused a blockage.  Us being the first home coming down the sewer line from the hill above took all the damage.  Paul called the insurance company immediately and was told to hire a clean-up crew as this is a bio-hazard.   I filed a claim with our insurance company, Foremost, providing letters from witnesses.  Foremost sent out their insurance claim adjuster.  We were stunned when informed via a letter that Foremost Insurance will not cover the damage because it was from the sewer outside of our unit.  I questioned "Why do I even have insurance if you are not going to cover it?"  They replied, "We don't cover sewage back-up"  Funny, their web-site states it covers sewer back-ups.  I wonder how many people in the resort are thinking they are covered.  I even went to my Foremost agent, but he wasn't much help other then stating the Resort should cover it.  My question to him was "Why is the resort responsible when I have insurance that I bought from you to cover it?"  He couldn't give me an answer.  Our only option is to try to track down the person who made the blockage and try to talk with him.  Hoping that he is honest enough to cover the cost of the damage he caused by putting his sewer hose down the sewer line. If not, Small Claims Court might be an option. Needless to say, we were having a string of crappy luck!

But on a not so crappy side of life... We have great friends who are offering to help get our Park Model home back to a livable condition.  Put in the floor, and get the cabinets and bathroom fixtures back into place. We have had wonderful emotional and spiritual support from everyone around us. My goal is to help get Paul through the rough times and not let depression or despair set in as one thing after another comes our way.  He is feeling stronger each day and put on 2 of the 20 plus pounds he lost while in the hospital and his outlook on life is good. We have had some wonderful visits with friends in the resort that have brought laughter and maybe a few tears into our daily lives.  We look forward to visits from friends.  Even though they may feel that they are tiring Paul out, he really looks forward to the distraction of an otherwise monotonous day of television and computer.

Never get enough hugs!

It's Wednesday!

EEK!  I woke up this morning to the coffee making being on but no coffee.  It seems the coffeemaker has come to the end of it's journey in life, on to the Big Kitchen Counter in the sky, or in reality, the dumpster.   So this morning I made coffee the old fashion way, boiled water and dripped it through the coffee grounds.  Desperation for caffeine is not a pretty site! Thanks goodness we have a backup at the house that we used for company.  I'll go get it later today after we get out for our daily walk.  

Paul is scheduled to receive his first radiation treatment this afternoon.  From everything I could get my hands on to read, it should not be too bad and the side effects are not instant.  He will have a few days to adjust to the changes in his body.  Chemo is scheduled for Thursday this week and next week.  We are looking forward to getting all these reoccurring appointments on the calendar then we can create some sort of schedule for ourselves.  Having a schedule will give us time to plan walks and get out to do some visiting with friends. I'm looking for a little bit or normalcy and routine.


The abdomen wound is healing and looks great.  The Home Health nurse is pleased with it and there is no sign of infection.  Yea!!!  I will continue to change the bandages, clean the wound and do what I've been doing...it seems to be working.

Yesterday I put a call in to the surgeon as the bottom stitches on the J tube have been pulling the skin and creating the area to become very tender and swollen.  With the surgeon's approval I snipped them and pulled them out.  We will tape it in place until our follow-up appointment in a couple of weeks. It took a bit or maneuvering to get under it and snip, as the stitches were in very, very tight.  Paul took a couple deep breathes and  even yelled "Ouch" a couple of times...after a few attempts to get under the J tube and with very shaky hands on my part...  snipped! Relief covered his face.  He laughed and said, "Now take the other two stitches out!"  My reply, "No way!  That is all that's left holding the J tube in place." 

We appreciate the visits and well wishes from all our friends.  
Thank you for all the hugs we've gathered over the last couple of days.  

Jo and Paul

Reflection of my early morning thoughts.....


I asked God 
"Why do I have to climb so many mountains in my life?"

Mount Diablo

He replied 
"So that you may have a better view"

Change

We have made it through the week being home and are adjusting to the changes in our lives.

Paul getting his nutrition through a J tube with a feeding of liquid nutrients is going well.  I find the J tube becomes hard to flush if the feeding goes more then a couple of hours, but we are working on getting that resolved with frequent flushing during the day, every two hours, and cleaning the J tube in the morning after the nutrition going overnight with a wired brush one of the doctors had given me at the hospital. I am striving for 6 hours of uninterrupted sleep instead of the four that I have been getting.  It's a change I'm looking forward to.

His open wound on the abdomen is healing beautifully.  To watch this change in his physical body as the hole slowly heals has me fascinated.  Who the heck can look at something like that and not accept  the "Intelligent Design" of the human body?  Our God is an awesome God!

Thursday brought Paul's first Chemotherapy session.  It went well with the exception of it running longer that we were told.  This created a conflict with the scheduled Radiation therapy session.  The oncology staff was very good about contacting the radiologist to let them know of the delay.  It all worked out and Paul now has three new tiny tattoos that will aide in the radiation being pinpointed to the exact place it needs to be.  So far, with the help of anti-nausea medicine, he has not had any real side effects from the treatment.  I know it is early in the course of treatments but I'm optimistic that he will do well and not go through anything horrific.

Being home has been wonderful.  We've been blessed with friends bringing food, dessert and hugs!  Can never get enough hugs!  Paul has journeyed out of the house for short walks in the sunshine.  I can already see an improvement in him just from being home for a week.  His weight is stable, not gaining, but most importantly not losing.  He has even tried to take a few things by mouth.  Not much, a few sips of a protein shake, chicken broth, tea, a couple spoon fulls of yogurt and even a bite of chicken!   Heck, he even requested a tea and it's been over a month since he has done that.  You know these Brits, they must have their tea!  We are feeling encourage that something good may have come from having the NG tube in  for a week.  It may have dilated the esophagus just a little, which is enough for some food to get through.  As long as the esophagus is opened enough for the food to go down, he'll keep trying to eat.   His taste is a bit off, but I'm sure that will improve with more eating.

The change of winter to summer is taking place as many of our winter residents are preparing to leave or have already left for their summer homes up north.   We look forward to them returning in the Fall.  Paul is already looking forward to returning to work after all this is over and so am I.  This being home everyday is nice, but we both miss the interactions of our community which our jobs bring to us on an everyday basis.

We know that this cancer has already changed our lives and we will need to adapt to more changes as we continue down the road of treatments and preparing for the next surgery.

So tonight, I will leave you with the words of Socrates,

“The secret of change is to focus all of your energy, not on fighting the old, but on building the new.”

Hugs, love and peace,

Jo and Paul

On to New Routines

We have had a couple days to try and create a routine for ourselves.  One thing that is definitely different for me is that since Paul is not able to eat solid foods, I don't have to cook.  Well, not really cook.  My wonderful neighbor Irene brought by some carrots, cabbage and apple for the food co-op she works at, so I have cooked up that for myself to have during the week.  Thanks Irene!  ll in all being home is wonderful.  Sleeping in our own bed makes for a much more restful night and as Paul has shared he is not being awaken between midnight and 2 am by the USC vampires (blood draws).  He is looking and feeling better day by day.  He is trying to get some food down his throat before it closes up completely again.  Chicken broth and juice seems to be okay.  Solid food is too much as no matter how good he chews, it just isn't enough.

We thought that the Chemo treatments were going to begin on Monday, but the oncologist wanted us to wait a few days to get the radiologist on the same schedule.  Paul will begin Chemo on Thursday morning and see the radiologist on Thursday afternoon.  We will make a trip back to USC for a Follow-up appointment with the surgeon next week.  Home Health nurses are scheduled to come twice a week to check on Paul's progress with the J tube feeding and overall well being.  They will probably make it once a week in the future as he gains back his strength and his open wound on the abdomen closes.  The next two weeks will be busy with us adjusting to this new routine.

I have enough paperwork to keep me busy for at least a week.  I created a log book to track Paul's daily vitals, amount of food intake and also all his doctor appointments, blood work and any that will be vital for his care.  Then there is the tracking of Health Insurance deductions and EOB's, trying to settle things regarding the sewage flooding we had in February to our new Park Model home, and trying to plan the enclosed stick built enclosed room for that park Model so we can move in.  This year has really thrown us a couple of curve-balls, but we are not striking out yet!  In fact, I think we are on the way to getting a few Home Runs!  It is Spring, right?  Baseball season should be starting, so I think hitting a few "Out of the Park" is just what we need!

Will keep everyone up to date as much as possible.  Thank you for all the hugs I have collected so far since arriving home, I'm looking forward to collecting more!

 Did you know as quoted by American Psychologist and Educator, Virginia Satir (1916-1988)
We need 4 hugs a day for survival.  
We need 8 hugs a day for maintenance.  
We need 12 hugs a day for growth.  
Paul and I wish each of you enough hugs so you can grow into being the person God meant you to be.

\Hugs,
Jo and Paul