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

Happy Easter

Happy Easter.

We are home and relaxing.  My goal was to make it to morning services, but that didn't happen.
1. I over slept, nothing like sleeping in your own bed.
2. Had to get Paul's food started, it ran out in the wee hours of morning.
3.  Paul really needed a haircut and shave, I don't mind the "Mountain man" look, but I like him better clean shaven.
and it just felt so good to lay in bed and have my husband next to me.

It is now 11:30 and I am finally sitting down to my breakfast.  I really need to work on getting a new schedule for us to be more productive.

Changed Paul's wound dressing as it was wet and seeping through the bandage.  I like when the hospital had the wound vac on, it kept it dry.  I will bring that up to the doctor as it seems to be seeping and I really don't feel good about a moist, seeping wound in the heat.  Seems to me a good place for bacteria to grow.  Might be a bit paranoid, but after everything Paul has gone through in the last 3 weeks, I really want things to stay as uneventful as possible.
Paul is on a feeding tube with food going in 20 hours a day.  He gets 4 hours off for doctor appointments or getting out of the house.  The traveling nurse said some people go out with their I.V. pole and food, but Paul wouldn't hear of doing that.  He is feeling better but tires very easy.  So a lot of relaxing and naps for him.

I have to get laundry done, run and get prescriptions filled and take a couple hours of "me" time, well, not really, but doing laundry and running a couple of errand will get me some time alone to think and reflect on our new journey in life.

Happy Easter.

Thank you for all your good thoughts and well wishes.

Jo and Paul

P.S.  There is no place like home!

Good Friday

It is indeed a Good Friday...
We are going home.
Paul is discharged from the hospital

Holy Thursday 2013

Paul is tolerating the J tube feeding well. They will be increasing it during the night and if all goes well we should be heading home tomorrow. Paul has not had a breath of fresh outside air in 23 days.  I know he will take a deep breath and delight in it!

We know that it is still a long road ahead.  We have the chemo/radiation therapy and the esophagectomy surgery to get through.  But this has given us an idea of how his body may or may not react in the future.  The next few weeks will be a learning experience for us both and we have renewed strength and spirit to face it head on.

Thank you all for everything.

Jo and Paul

Moving forward

This afternoon the doctor had ordered a X-ray with contrast, but a different type of X-ray, as the technician explained it was a video X-ray.  They had put a contrast solution into the J tube and had Paul move around.  When he laid on his right side, the solution made its way through the J tube.  It seems the problem was the way the tube was laying inside the jejunal intestine.  Arriving back at the room we were hopeful that the problem was solved and all Paul would have to do is position himself on his right side.  The radiologist came to the room to test the theory.  Not to be, nothing...
The doctor was called.

When the doctor assessed the situation, he decided to cut the anchor stitches and pull the tube out a few inches.  Low and behold, it worked.  Thank you God!  Paul sighed in relief of not needing another surgery.  The doctor taped it in place until they could gather the necessary stuff to do a bedside restitch.  I was fortunate enough to help the surgeon do the bedside procedure, well not really, I just moved the tube when he requested and flushed it three times during the stitching to make sure that it remained open.  I am a bit guarded in being completely relieved.  I will Happy Dance when we are discharged and on our way home.

Next step is the food solution.  Paul will be monitored for any adverse effects..... Nausea, cramping, vomiting and anything else that would cause concerns.  Paul's weight is down to 147, but we are hoping that once home and the feeding are given on a regular basis, his weight will return back to 160  -  165.

Doctor feels if all goes well we may be able to be home for Easter.  That is something I am looking
forward to.  I told the doctors that we had prayers and good energy being sent from over the pond in England, from Washington D.C to California,  across the upper and lower the Mid-west, from Canada to Mexico.    He smiled and nodded his head in affirmation.

Thank you all for your prayers, encouraging comments, cards, emails, and healing energy.

Hugs,
Jo and Paul

Wednesday morning

The J tube could not be used for nourishment last night as hoped.  Even after a thrid attempt to dislodge whatever the blockage is, iT is still clogged or as the P.A. said possibly kinked.   We are not sure why or how, but it is not usable.

We are waiting to hear what can be done to fix this newest stumbling block on the road to recovery.

Thank you for the prayers
Jo and Paul

Tuesday March 26, 2013

We are doing a Happy Dance.
NG tube has been removed from the nose.
Paul has been given the okay for small sips and a few ice chips to moisten the mouth.

We are now waiting for Rita, the RN who is going to work on unclogging the J tube.
If all goes well, the feeding will start,very slowly and be monitored very closely as a preparation to going home.

We miss all our friend at Caliente and are looking forward to returning home and to work.
Thank you for all the cards, they are now hanging in Paul's hospital room for him to see.

Jo

Monday March 25, 2013

Update on Paul....
This afternoon the doctor clamped off the NG tube in Paul's nose.  If all goes well and he doesn't experience any nausea during the night there is a good chance that it will be removed.  The doctors want to make sure things are "flowing south" before removing the NG tube, which means checking to see how much bile is in his stomach in the morning.

The nurses will also be checking on the J tube and will use a small brush inserted from the outside to clean away any thing that would be causing the clog.    If all goes well they will proceed with trying a feeding, which is the reason for getting the J tube.  It will take a couple of days, but it looks like Paul's body is finally accepting the changes and on the road to healing.

I will say one thing, I am I awe of Paul's oncologist from Ranch Mirage.  Dr. Driesbach called on Paul's cell phone to see how things are going because we had cancelled the last two appointments.  He was just checking in to see how Paul  was feeling.  He didn't know we are still at USC.

I did get a chance to go home and pick up our mail.  Thank you for all the beautiful "Get well" and "Thinking of you" cards.  Paul enjoyed reading every one of them.

Jo and Paul

Palm Sunday

Yesterday they removed the J tube drainage bag.  Yea, one more little achievement.  The drainage bag was put on to help relieve anything that would need to drain out and any air the that would accumulate in the intestines.

On a not so good note.... The doctor went to flush the J tube, which is Paul's feeding tube for the next few months until the esophagus is removed, and it is clogged.  She tried Coke and then Vinegar she even left the vinegar in for several hours and came back in the evening to try again.  she was here this morning and the J tube seems to have a little less resistance but is not opened enough or all the way to be used for feeding.  She will be back later as Paul needed to use the bathroom.  

On another good note, Paul has been walking and sitting in the chair more and more each day.  This is great as it helps the intestines do what they need to do, help the stomach secrete the correct fluids, keeps the legs and ankle from swelling  and it continues to help Paul feel better.  The wound vac will be cleaned and changed today, replacement of bandage and suction device.

  

I hope to make a trip home over the next few days to pick up mail and a few items needed here... Paul's houseshoes, laptop, another book to read, some yarn as I've used up all the yarn I had brought with me.  I may get more of Paul's blanket crocheted then I thought possible.

All these stumbling blocks that I am trying my hardest to look at as stepping stones.  

Hugs to all,

Jo and Paul