New journey!

 All roads lead somewhere, but we never know where they may lead.  Over ten years ago, I thought I had my future all figured out.  Plans were made, set into motion, outcome for the future all ready to go.  But that all changed.   I stumbled, took detours, had some minor breakdowns, maybe even a couple really bad decisions but with a few repairs, some self talk and change in direction,  I feel I’m back on my road!

Learning new things, meeting new people and looking forward to spending my future with a wonderful person who has given me hope, security, understanding, unconditional acceptance and love.   It’s been a long time since I’ve felt this way.  I like this road.   It suits me.  

As I sit in a hotel room, looking out the window at the beautiful cloud covered Organ Mountain range of New Mexico, I see a new road that I think I will journey on for some of my life.   This road will lead somewhere for sure.  Where?  Who knows!  But I’m sure it will be a great adventure.   And with Mike at my side, it’s going to be a great shared adventure!

Thanks for popping in.   Maybe now I have a reason to start writing again.  Do I start a new blog or maybe just continue writing here?   Write a comment, let me know you stopped by.  And remember…  as my momma always said “ Once you are born, you start dying, so…. Live  Life!”  I know I am.

Jo

It’s Not the Years in Your Life That Count. It’s the Life in Your Years

Abraham Lincoln

July 27, 2020

It has been too many years since I’ve traveled to this blog.   But I still believe, with all my heart, that “All roads lead somewhere”.  The thing is, sometimes you are traveling on a road and you have no idea where it is going to lead. Other times, you know exactly where you are going.  

 

  Have you ever found yourself on a road with a destination all planned out, knowing exactly when you are going, when you will arrive and Bam!  You hit a detour or a roadblock!   Out of the blue, your planned trip is no longer the same as what you had intended.   The destination is the same, but the road changed, the scenery changed.  In fact, the whole dang trip has changed!   So what do you do?  You follow the detour signs and hope to get back on the road that you had started out on at the beginning of your trip.  But you know, the road changed and in changing it has become a new road.  Well...... that’s where I am in life.   When this blog started it was all about the travels and experiences that Paul and I had together and were to continue having together.  It changed.  Paul died.  I hit a roadblock.  I had to detour.  My road changed.   

For the last 7 years I have been traveling on different roads.  Sometimes following the signs and other times just wandering aimlessly.  Hoping to see a glimpse of the road I was traveling before.  Well, I have come to realize that the road I was traveling no longer exists.  It’s been demolished.  Torn down!  Wiped out!    It has taken me a while to realize that sometimes, just sometimes, you have to accept that the road you thought you would be on is completely gone and you have to find a new direction.   You long for the old road, the familiar road.  The road you know like the back of your hand.  You know in your heart and your head, you can not get back to that particular road.

 

In my belief that all roads lead somewhere, I am on a new road.  Maybe not physically traveling as much as I did in the past, but following a new road nonetheless.  I hope to pop on here every once in a while and leave a bit of ramblings, thoughts and stories.  So feel free to come in and peek at the new road I am traveling.  Hope to see you and as always….. the kettle is on and there are biscuits to be shared!

 

Oh, if you are so inclined…… one of my detours has led to a new road with an interesting destination  https://www.justjocrafts.com/

 

 

Thanks for stopping in.  

 

Just Jo

 

“You are never too old to set another goal or to dream a new dream.”     

C. S. Lewis

I have often wondered.  Should I come back here to write my thoughts, the ramblings of my mind?  
Do I start something new?  A different blog?

   This blog was created for the adventures of a wonderful dream.  Things change, life changes, the road turns and you move in a different direction.

I come here often and read the posts, over and over again.  Living in the past?  No, not really, maybe holding on to the dream.  A dream that will never come true.  It can't. The main participant is missing.

Too many thoughts tonight.  3 years ago today, a nightmare started, the beginning of the end to the dream.  The dream of all roads leading somewhere.  The road came to a dead end.

Dealing with too many emotions tonight....too many thoughts to clearly put it into words.

I miss....... You!

Note to self....

When you are sick with a cold and not thinking clearly, do not... I repeat DO NOT turn on the kettle for tea and go to bed!   The fire alarm will wake you up when the kettle has completely boiled out all the water.

After that bit of excitement, how can I go back to sleep?

No fire, just my beloved copper kettle is well scorched and I have the fan going full blast to get the smell out.

La la la la Life goes on........

Jo

New Year Wish

New Year Wish to my family, friends and all those who's path I will cross.

May your days be filled with radiant soul warming sunshine.
May you seek and find happiness that fills you with joy.
May you find peace with the very things that caused you anguish.
May your arms always be able to wrap around those you love.
May your hugs be so welcoming that the receiver feels your heart loving energy flow into them.
May you know that you are loved in a way that will sustain you through the turmoil of dismay.
May your nights be filled with the comfort, rest filled sleep and pleasant dreams.
May your journey on the path called life bring you abundant blessings.


Jo

A written random thought.

Life is not fair!

We've all heard it said or said it ourselves. 

Life is not fair because…..

You didn't get the job you interviewed for and your credentials were impeccable.

You had a flat tire on your way to meet with friends.

You lose a leg to a disease that you never thought could happen to you.

Your boy-friend and you had a fight breaking up the relationship.

You bought a new outfit and the first time wearing it you notice a seam is ripped.

You make plans for the perfect vacation and the weather is rotten.

You’re right!  Life is not fair, but neither is death.

We all expect to grow old, die in our 80’s, 90’s or if we have the right genes and are lucky maybe even 100.   But we never think that death isn't fair instead we blame life.

Let me tell you something, death is not fair either.

Someone riding a trolley, possibly on their way to work dies because some jackass blows it up killing everyone on board.

A baby so desperately wanted after trying for years dies at birth.

A 46 year old man dies from undetected diabetes.

A teenage girl dies after complications from a routine surgery.

A mother dies from undetected ovarian cancer leaving behind 3 young boys, ages 2, 6 and 8.

The man you had planned your whole future with dies in your arms and there is nothing anyone can do to save him.

Yes, life and death are not fair.  There is no promise that your life will turn out the way you drew it in your head. There is no promise that you will live to be 80, 90 or 100.  We can not dwell on life and death.  It is all part of the cycle of being human.  What we can do is make the most of what we have and know that life is too short no matter how long you live.

Life is to be celebrated.  Everyday that you wake up you are living!  Each day is a new beginning, a clean slate, a moment in time to be lived. Take every morsel, every minute  and relish it. Death will come for all of us. There is no escape.  It’s only a matter of time.  As my mother told me many times “From the moment you’re born, you start dying, so live life!”  She was a very wise woman.

I wasn't sure what I was going to write.  I had the thought today “Life isn't fair” and with that thought came another, “Death isn't fair either”  I can say with a smile on my face that you now have my thought of the day. 

Tomorrow.  A new day.  Soon a new year.  What will 2014 bring?  I can guarantee it will bring life and death.  But don't dwell on life and death instead relish the waking moments. With the new year coming I made a New Year resolution.   ”Each day I will strive to be a blessing in someone’s life.” 

What is your New Year’s resolution?

Thanksgiving Day... Every Day

Thanksgiving Day.

I spent the morning visiting across the miles, via cell phone, Skype and Face Time with friends and family.
With the technology of today I was able to be part of a lazy morning bed cuddle with my grandson, joined in the making of Challah bread  from scratch, be a shoulder to lean on and a comforter to someone who is part of a journey to a very special person who is nearing the end of their physical journey in life and share laughter and hugs with friends.  I even managed to catch a part of the Thanksgiving Day Parade!  All of this before 2:00 in the afternoon.  I was later blessed to spend the evening with friends where there was shared memories, new faces and laughter.

I took some time and looked at Face Book.  So many people giving thanks a questioned popped into my head.  Why do we wait for a Holiday to give thanks.  I understand that we are Thankful on a daily basis, but do we express it?  Do we tell the person bagging our food in the grocery store "Thank you"?   Or how about the person on the other side of a work phone call?  Okay, so we may say it, but do we truly mean it?  Are you really thankful for the Gas Station attendant behind the counter, or do you feel they are just doing their job?  What about the person who picks up your garbage, reads your electric meter or delivers your mail?  A few years ago I made it a point to look at the name tags of anyone who is doing a "job" for me, the teller at the bank, the cashier at the grocery store, the guy at Best Buy who helped me figure out my new phone that has way to many options and buttons for me to understand, and said  "Thank you Theresa for ringing up my groceries" "Thank you Albert for helping me figure out this button"   You would be surprised at some of the reactions.  Most are genuinely grateful that you recognize them as a person, some look a bit confused, thinking they should know you from somewhere else, others look a little perplexed.  But all smile.  All are validated that they are part of my journey whether they realize it or not.

If you give a smile, the simplest act of kindness, most times you will get one in return.  Now I do know there are some people in this world who are on the "Woe is me train" and no matter what you do they are going to be negative, mean and no matter what you do, it is never enough.  You know what I do with them?  I smile, thank them and refuse to carry the burden they are trying to give me.

So even though Thanksgiving Day is over.  Why not try to carry the spirit of it everyday in a different way, by simply acknowledging that everyone around you deserves to be thanked for crossing your path on this journey in life.  We all influence each other as we walk down the path of life maybe a little bit of thanks will help someone over the bumps in the road.

Jo

Okay, I did it!  I got through the first week of work and only had one instance where I had to leave the desk and have a quiet moment to myself. 

It feels good to be back at work.  The interactions with travelers, residents and co-workers has done my spirit a world of good.  It is wonderful to feel needed and appreciated especially by those I help whether it be a simple thing of retrieving their mail when they have forgotten their mailbox key, filing a three inch stack of paper or taking a reservation for a 3 month stay at the resort.  To be needed, to be helpful, to serve one another.  After all, isn't that what humanity is all about? Isn't helping one another get through this journey we call life the thing to do?  

I was amazed that my brain retained and brought forth the things I needed in the short amount of time I had to "get back into the swing of things"  The brain is an amazing organ.  It tells us to breath, keeps the body safe by distinguishing danger, is able to recall good memories that bring smiles to our faces and joy to our hearts  but can also shut out painful memories.  The brain is the most complex part of the human body. This three-pound organ is the seat of intelligence, interpreter of the senses, initiator of body movement, and controller of behavior. 

Upon some research I learned some very fascinating facts about the brain.

1. Water. The brain is made up of about 75% water.
2. Blood. As with oxygen, your brain uses 20% of the blood circulating in your body.
3. No pain. There are no pain receptors in the brain, so the brain can feel no pain.
4. Fat. The human brain is the fattest organ in the body and may consists of at least 60% fat.
5. Size at birth. At birth, your brain was almost the same size as an adult brain and contained most of the brain cells for your whole life and stops growing at age 18.
6. Oxygen. Your brain uses 20% of the total oxygen in your body..
7. Unconsciousness. If your brain loses blood for 8 to 10 seconds, you will lose consciousness.
8. Speed. Information can be processed as slowly as 0.5 meters/sec or as fast as 120 meters/sec, about 268 miles an hour.
9. Wattage. While awake, your brain generates between 10 and 23 watts of power–or enough energy to power a light bulb.
10. Tickles. You can’t tickle yourself because your brain distinguished between unexpected external touch and your own touch.
11. Gray matter. The brain’s gray matter is made up of neurons, which gather and transmit signals.
12. White matter. The white matter is made up of dendrites and axons, which create the network by which neurons send their signals.
13. Gray and white. Your brain is 60% white matter and 40% gray matter.
14. Neurons. Your brain consists of about 100 billion neurons.
15. New neurons. Humans continue to make new neurons throughout life in response to mental activity.

Now that we all know a little bit more about the brain... go out and learn one new thing today... create a few new neurons!

Thanks for stopping by to read my ramblings.  

Jo

“Rabbit's clever," said Pooh thoughtfully.
"Yes," said Piglet, "Rabbit's clever."
"And he has Brain."
"Yes," said Piglet, "Rabbit has Brain."
There was a long silence.
"I suppose," said Pooh, "that that's why he never understands anything.” 
― A.A. Milne, Winnie-the-Pooh

Saturday, November 2^nd was Paul’s Memorial.  It was well attended by family and friends, or so I’ve been told.  I don’t remember much of it.  I feel that my brain has decided some things are best remembered in very small doses.  There was a wonderful sharing of memories by several family members and friends, even an email read from a nephew in New Zealand.   It touched my heart to hear that Paul’s journey in this life touched so many others in a very special way and that he shared so much life with others.

 They say a picture can say a thousand words.  A few pictures that I shared at Paul's memorial.  

The pictures will never show, the man I came to know.

I have been trying to convert the PowerPoint presentation that I made, into a video, but for the life of me, I can not figure out how Paul did it!  I have the program on his computer, but after four tries, it still is not turning out correct.  I guess I should have sat and watched how he did it in the past. He always did the conversions for me.  It is just one more thing that reminds me of the loss I suffer with him gone.  His absence overshadows various parts of my life and will do so for a long time.

In my heart, I believe that Paul will always have his loving arms wrapped around me.  He will always be my love, my knight in shining armor, my M'Lord.  I know there is no single "should have done" or "could have done" or "did" or "didn't do" that would have changed a thing.  I also know that if love could have saved Paul, he would still be here at my side.

Many have approached me or sent emails asking that I continue writing this blog.   I will attempt to write something….  thoughts, feelings, observations, in the coming weeks.   Not sure how it will turn out, but I’ll give it a try.

 The family who came to share their support, love and precious thoughts have all gone back to their own lives.  Walking their own paths, as they should be.  Their presence was the greatest gift they could have given me.  

Today, I start back to work.  I begin to walk a path of near normalcy. *smile

I do not know what the future holds, none of us do.  We make our plans and never really give much thought to the “What if’s” in life.  

To everyone who shares my journey.  May you always hold love in your heart, peace in your mind and know that you are a very important part of my journey.

Love and those all important hugs,

Jo

Ramblings

I've been wanting to write something on this blog for the last couple of weeks.  Every time I sit down to write I either find myself overwhelmed with thoughts and emotions that can not be put into words or I come up completely blank.  If nothing else, this is my rambling for tonight.

The last few weeks have been filled with doing the necessary paperwork that one has to do when there is a death of a loved one.  Bills continue to come in and need to be paid, food still needs to be purchased, prepared and eaten, appointments still need to be kept.  Life does go on.  It’s a different life.  A singular life.  A odd life when you have spent so much of your everyday sharing life.

Some days I find it difficult to move forward.  There are the everyday obstacles that hold me, coffee for one, no need to cook, laundry is reduced, no one to share my everyday non important ramblings, thoughts and feelings.  I know this is all part of the grieving process and I know what is expected of me from those who see me as I deal with the grief of losing Paul and going through this period of mourning.  The quandary is…. I feel I no longer know who I am!  In losing Paul, I have somehow lost me!  I knew who I was with him.  I was his wife, his love, his m’lady.  I knew the expectations of the day.  I knew what needed to be done.  The relationship with Paul was clearly defined.  We shared not only every evening, but also in working together, we shared our days.  Our life was  defined in togetherness… our coffee in the morning before work, tidbits of communication throughout the day, dinner in the evening between 5:30 and 6:30 pm, do the laundry when the “magic box” was full (It’s what he called the hamper), plan our future.  Whether it be the future of the next day, week, month or years to come.  Now?  Well, a pot of coffee can last two or three days, there’s no need to make a proper sit down meal for one and since I don’t go out as often as before the “magic box” is rarely full!  The routine of life has taken on a new and unfamiliar dimension that I know will someday become the new normal. 

I am fortunate to be surrounded in the love of family, through telephone calls and emails. This continues to give the support needed.  There are also the friends who share this beautiful community that I call home.  They offer dinner invitations and much needed snatches of conversation when I walk to get the mail but… yes, there is always a “but” in life… but my identity has been changed.  I am no longer the person I was a mere few weeks ago.  

In Paul’s dying, part of me has also died.   Part of who I was, has changed.  I now have to take the journey of rediscovering who I am.   Who is the singular Jo that is not Paul’s wife… Paul’s m’lady…. Paul’s partner in life?   That is what I am going to have to find out.  When you share your life with someone, no matter if it is for a few years, ten years, twenty years or longer, you become dependent on them for support, understanding, camaraderie, validation, sharing the "pop in the head" thoughts and the mundane everyday happenings.  You must go through a process to redefine who you are because you no longer have all of those things.  When you find yourself singular after being a couple, you  question your decisions.   You began to wonder  “What am I suppose to do now?”  

The enjoyment of  basic sharing is lost.  

With any death, the loss is not just the person and all they meant to you, it is also the loss of shared memories. Memories of those shared experiences, the laughter, the smiles, the knowing and understanding.  Shared experiences that even when put into words, lose something because only you and the person who shared it fully understand.

I know “life goes on”.  I know that the need for structure is important.   Returning to work and having a schedule of things "To do" will help in returning to the land of the living.  I will find structure, I will find life does go on and I will live it to it's fullest. Returning to the things Paul and I shared will be different but it is essential to moving forward.   One day, I know the laughter, the hope of tomorrow and the dreams of the future will return.  

Jo

   

“When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” –Kahlil Gibran

Life goes on?

Yes, the title is a question.  How does life go on after losing the one person who completed you? I find myself waiting for Paul to walk through the door or to call me on the phone.  The realization of him not being physically with me has not set in.  I've been too busy with paperwork.  Settling everything that needs to be done. Contacting the U.K. to inform them of his death.  I am "going through the motions" of life.  

My daughter and my grandson has been a great distraction to the reality of my life.  They have been here for the last two weeks so I've not had time alone to ponder what is next.  

I continue to tell myself  "Things will be okay"  "My life will go on," but and there is always a but..... How do I know what to do next?  How do I determine where I should be?  Who will be here to help with making the decisions that need to be made?  I depended on Paul for his wisdom, sensibility, intelligence and input into our lives.  Now it is just me, my life, alone without the one person who was my confidant, my love, my life.

Several friends have asked about a Memorial Service.  Yes, there will be a  "Celebration of Life" memorial service for Paul.
November 2, 2013 at 2:00 pm.

Caliente Springs Resort
70200 Dillon Road
Desert Hot Springs, California
Ferris Hall
You may be able to obtain accommodations here at Caliente Springs Resort  which is a 55+ resort or at the sister resort Sky Valley resort for those under the 55+ requirement.  If you prefer there are several casino/hotels within a 30 minute drive.

No matter what the future holds, I will always be grateful to everyone who has followed this blog and thankful that you were all a part of Paul's Journey in life. 

All roads do lead somewhere, now I need to continue and find out where my road leads.

Jo

I am where I am suppose to be...

How can time pass so slowly yet seem to fly by?  Has it been one week?

The days and hours no longer are on the same wavelength of time that I am experiencing.  I can hear Paul's voice in my head, laughing as he says "There's been a disruption in the space/time continuum" Yes, we were both a bit geeky and loved watching Dr. Who, Star Trek, The Big Bang Theory and anything on the Discovery Channel.

Last year at this time, during the Perseid meteor showers, I climbed up on the roof of the RV, laid there counting "Shooting Stars".  Forty in an hour.  I was so excited because in all my years, my lifetime of star gazing, I had never see so many in such a short time period.  I came inside and said "You need to come out here, this is amazing"  Paul came out, sat in the chair next to me and gazed up at the sky.  "I don't get it" he said as he watch them streak across the horizon, "It's all just dust and grains of sand "   I still smile today as I think of how his scientific mind took this awesome event that most of us look at in awe and wonder and he could be so factual at it being just "dust".  So I watched the dust and remembered our life together.

Where do I go from here?  No, not in the physical sense.  Paul and I had long discussions about the "What if".  He made it clear... no major moves, no major decisions, no drastic changes for 6 months.  Things need to continue as planned.  The house will be completed, I will move in.  I will continue on with the plans we had made for the next 6 months.  But I will do it alone. I will do it without him physically standing at my side and holding my hand.  I guess my question is more for myself as I know there is no one who can give me the answer.  Where do I go from here?  How do I walk this new road that is laid out before me?  Where do I find the courage to face the future without the man who completed me?  And he did complete me.  Paul made me whole.  He was my life, my soul-mate, my love, my beloved, my M'Lord. I will carry him in my heart until my last breathe.

Several of you, who read this blog, have asked me to continue writing.  I have always loved sharing our life and adventures on this blog.  This blog was created to the testament of my mothers life.  She loved to travel. Loved experiencing all that life had to offer.  She often said "From the minute you are born, you start dying, so LIVE life"  That is what Paul and I set out to do after her death in 2010.  We took to heart her wisdom and advice "Climb the mountains, walk the beaches, hike the forest".   Paul and I sold all our worldly possessions, bought the RV and set out to travel.  We have always somehow ended up being exactly where we needed to be.  Near family to enjoy grandchildren, visits with family, close enough to experience the birth of the latest grandson, touching lives.... sharing stories.... laughter..... and love. I will continue the blog with updates of my life, my thoughts, my travels, my journey of this life.

For now, I know,  I am where I am suppose to be.

So I leave you with this quote.......

You Are Where You Are Supposed to Be 

"God puts you where God needs you. 
You are where you are supposed to be. 
The job you are doing may not be any easier on account of this, indeed it may be harder, even more urgent, but now you are centered, focused, clear." 
So this is where I'm suppose to be.
I always thought I was suppose to be somewhere else, doing something else, being someone else.
But I realize now that I was mistaken.
This does not mean that I can't or will not be doing something else.
Just right now, I am where God wants me to be.
Lawrence Kushner

Paul M. Hine

January 27, 1950 – August 4, 2013

It is with a heavy heart and an emptiness in my soul that I let go of the love of my life.  Paul has started a new journey on Sunday  August 4, 2013 at 11:00 pm.  He fought a great battle to overcome all the trials of his fight with Esophageal Cancer.

Paul was the middle child of Joan and David Hine from Redhill, England.

Paul is survived by his wife Josephine, brother John Hine and Sue, Charles Hine and Kerri, daughters Natalie Laura Hine, Joanna Kate Hine, Jennifer Marie Hine.

He will be missed by many.

God saw he was getting tired 
and a cure was not to be.
So He put His arms around him,
and whispered, "Come with Me."

With tearful eyes I watched, him suffer,

and saw him fade away.
Although I loved him dearly,
I could not make him stay.

A golden heart stopped beating,
hard working hands to rest.
God broke my heart to prove to me,
He only takes the best.

Home and healing

Finally, a few moments to sit down and do a quick update for all our wonderful friends and families.  Yes, my few moments today is at 4:00 am. 

We have been home 6 days and the reality of what is to come has slowly set in.  Paul is still very weak.  He needs assistance to climb the 2 stairs to get into our bedroom, to stand and to adjust himself in the bed.   On the bright side, he is home instead of being in a Nursing Home where he would not get the attentive care that he needs to accomplish a full recovery so that he can be ready for the next round of this battle with Esophageal cancer.

Sleep is a thing of the past for both of us, as his lungs continue to fill with secretions that need to be suctioned out every couple of hours when he is sitting up or hourly when he lays down.  I only wish the coughing and suctioning coincided with the timing for him to get his hydration water put into his jejunostomy tube, which is every 2 hours during the day.  But alas, it doesn't…so this makes for a very busy day and night. 

I've always wondered why men stopped going to the Barber Shop to be shaved.  It seems  much easier to have someone do it for you.  So to all the men who read this blog, a question… Is it easier to shave yourself or would it, if convenient, to have someone shave you?  I have improved with helping him become clean shaven and no, I've not cut him … not yet!

We are managing with all the medical supplies that are needed for Paul to continue his battle and stay on the road to recovery.  Our living room looks like a mini hospital room: a walker, an I.V. pole,  a suction machine, a small oxygen machine, boxes of gauze, I.V. bags, tubing, 5 pillows for added support when he lays on the couch and an array of syringes, tapes, and 2 dozen white washcloths.  The wheelchair is currently in the back of the truck.  There is only so much room in an RV and I think we are utilizing it all! 

They say necessity is the mother of invention.  Paul’s ostomy bags for his esophageal  neck fistula were suppose to arrive by Friday.  I was given 5 bags when we left the hospital.  Due to our Insurance number being written down incorrectly at the company who was suppose to fill the hospital order,  they never were delivered.  They said delivery would take place no later than Saturday afternoon.  So, on Saturday evening, I took one of the cohesive rings and attached it to a Zip Lock bag, cut a small hole and made a makeshift Ostomy bag.  I am hoping this idea will hold us over until Monday. I have 3 cohesive rings from the hospital that I didn't need with the ostomy bags.  We’ll see how long the makeshift bags will hold, keeping my fingers crossed.   Because of the esophageal fistula location, the proper ostomy bag holds in place approximately 24 hours.  Most ostomy bags, in a normal setting will hold for 3 to 5 days.  The one problem with the location of Paul’s is the enzymes in the saliva break down the adhesive.  With having the tracheotomy so close to the esophageal fistula, it leaves very little room for any additional adhesive to be added or space for positioning the bag with a full ring of adhesive. As the Ostomy Specialist at the hospital stated “This is a rare and unique case, so there is nothing out there made for this situation”  “We’ll just have to get creative!”  I guess she wasn't kidding!

 With all this we have the added dilemma that the incorrect suctioning catheters were delivered.  The company sent what they thought were the correct catheters, but because of the trachea repair, Paul can not have anything with a flat edge as it may inadvertently cause damage to the repair area.  I had a few round tipped ones from the hospital, so that is what we are currently using.   I've spoken with the company and they will be sending out several different samples to see what will be flexible enough to get down through the tracheotomy tube and yet not so thin that is will not be able to suction the thick secretions created by the healing and the expansion of the previously collapsed lung.

I have little uplifting quotes hanging around to help keep up the positive spirits.  I thought I was hanging them for Paul, but I find myself repeating them throughout the day.

“It doesn't matter how slowly you go, so long as you don’t stop”

“Trying times are not the time to quit trying”

“Two steps forward and one step back is still forward progress”

“Life is only traveled once, Today’s moment becomes Tomorrows memory. Enjoy every moment, good or bad, because the gift of life is life itself”

And of course…  “God grant me the serenity to accept the things I can not change, courage to change the things I can, and the wisdom to know the difference”

I've heard it said that God will only give you what you can handle.  God must think that Paul and I are very strong indeed!

  

Thank you to all the family and friends who continue to support us with their positive energy, good thoughts, my dinner, well wishes, prayers, love and those very important hugs.

Jo and Paul too!

P.S.  Now off to get some sleep before Paul wakes up needed suctioning or my 5:45am alarm goes off to remind me not to miss the 6:00am medications.

Home, now onto healing

We are home.  Now the healing begins, and the chaos of scheduling medical appointments, nursing visits, and supplies being delivered or not!

Paul's strength and stamina is very low.  He barely made it up the stairs last night, saying "I can't do this!"  I continued to encourage him with "Yes, you can, you are stronger than you think!" "Besides, I'm right here behind you if you think you are going to fall!"  I didn't stop to think who would be behind me if he fell backwards, but then again, I think my Guardian Angel got it covered!   He he did it! I think I should have had a ramp installed or asked if anyone had a ramp that was not in use.  I know how hard this is for him, the everyday struggle.  To walk up the 2 steps to the bedroom leaves him gasping for breath.  It will take time and a lot of effort.  I am encouraging him to do a little more each day as I feel it is the only way he will regain the muscle in his legs.   And he has to gain back that muscle because he is a little bit too big for me to carry!  *grin   Paul lost 30 pounds again, but in losing the weight, he also lost muscle and fat. Anyone who knows Paul, knows he didn't have any fat to lose.

On another good note, as soon as Paul is strong enough to make it down the stairs, then he can get in the pool for some water exercise.  I told the doctors about the wonderful Underground  Hot Spring Mineral pools and Spas at Caliente Springs, and they all think it is a fabulous idea for Paul to get in and take in some of the healing energy that it would provide.

Below is a a flow-sheet I created to stay on top on everything Paul needs during the course of the day. I'm sure there is going to be more then what is reflected on the flow-sheet, but this at least will help me stay on track with what he needs from 6 am to bedtime.   Somehow we will fit in our weekly visits back to L.A., time for the oncologist to do a follow-up visit and me to get my medical appointments.  I'm not worried, I know it will all fall into place and be exactly as it should be.

Thank you to all who continue to share in our journey.

Hugs,
Jo
   
P.S. Thanks for Chicken Soup, it was delicious!

On our way......

Wheelchair - Check
Walker - Check
Medications - Check
Pillow to hold to stomach - Check
Sleeping Wedges - Check
Portable Suction Machine - Check
Prescriptions filled - Check
Discharge Instructions - Check
Medical supplies to get through the next 24 hours - Check
Last dose do Pain medication - Check
Paul - Check

And we're on our way..... Homeward bound.

July 29, 2013, Homeward Bound

After 49 days in the hospital for what was suppose to be a 14 days stay, we are going home!
Even if Paul is not able to "Jump for Joy!" we are elated at the thought of being home.

Not sure what time the discharge will happen, but it will be today.

The Discharge Case manager is in the process of gathering the things we will need: Wheelchair, Walker, Suction supplies for the tracheotomy and esophageal fistula and whatever else we may need.

Homeward bound.

Hugs to all who follow our blog and give so freely their strength, love, prayers, hope, well wishes, positive energy, good thoughts and smiles and hugs across the miles.

Jo and Paul

Sunday July 28, 2013. Hospital Day 48

Paul had a rough night last night and is feeling very tired today.
12:30 AM Coughing, choking....  I suctioned the tracheotomy
1:30 AM Heavy coughing, choking....  I suctioned the tracheotomy with a small amount of sterile saline.
3:10 AM Coughing ...... I suctioned tracheotomy
5:10 AM Paul requested something for pain as his stomach muscles and right back/shoulder are sore from all the coughing.
6:00 AM. Blood draw...... The start of our morning routine...Chest X-ray to follow then morning medications.

Sometime today I will get Paul up to take a shower.  I know it will tire him out and zap any energy he has, but I also feel it will be good for him to have the water run over his body and rehydrate his very dry skin.  I teased him this morning and told him he looks like a snake with all the skin he is shedding.  I will warm some lotion and try that too!

I'm hoping that later today he will have the energy to do his daily walking (Physical Therapy) and his arm exercises ( Occupational Therapy).  I don't want to push him too hard, but I don't want any set backs either. He has worked too hard and come too far to let a bad day send him backwards.   We know this will be a long recovery.  Paul weight loss alone is going to take time, probably months to recoup some of the fat and muscle back to his body.   I wish there was a way to "suck out" the fat from my body and give it to him.  Lord knows I have enough to spare, especially after this hospital stay.   I tend to stress eat all the wrong foods.  *smile

It is fairly early and I am hoping as the day progresses so will his energy and strength.

Thank you all for you constant encouragement, well wishes and shared energy.

Jo

Friday - July 26, 2013 -Day 46

When I look over everything that Paul has endured over the last 46 days, I can understand why Chris, the Case Management R.N. was so surprised when she walked onto the room and saw Paul sitting up watching T.V.   Chris said "I expected to find a man curled up in a fetal position unable to respond"

Paul has come a long way and we know there is still a long way to travel before things can have any resemblance to normal.  But, he is one "Stubborn Bastard" and we will continue the journey together, hand in hand, side by side!



Paul is struggling to gain back strength.  He continues to walk as much as he can but after 50 feet tends to run out of energy and breath.  But each day brings a step or two more.  He may not be ready to run a marathon anytime soon, but it's okay, we can walk slowly and stop to smell the flowers, examine a piece of grass or pause and enjoy the breeze as it flows through our hair.

You want me to walk how far?

Our biggest battle at the moment is finding a way to place his ostomy bag on his neck without it interfering with the tracheotomy.  The problem is there is less then a half inch space to work with.  This is not your everyday problem as even the Ostomy R.N. doesn't have an answer. The saliva eats through the adhesive ring and there is the danger of it infiltrating the trachea site thus infecting the bronchial  and lungs.  I continue to cut and date each new trial ostomy bag hoping for one of them to be the answer!   I'm going to write to the companies that I have found on line, send them a picture and ask for help.  I know Paul is not the first person to have to deal with this and someone out there has to have figured out a way for it to work.  I am almost at wits ends as Paul skin is becoming very red and irritated from having the bag put on and taken off because of it leaking several times a day.  It would be fine if he didn't want to drink something to soothe his mouth and feel the coolness in the back of his throat.  Even the doctor has said this is a very unique situation.

Yes, I love that man of mine!

Since Paul can not get any nourishment or hydration via his mouth, I am adding water every two hours via his Jejunostomy tube.  This is going to be especially important when we go home as the danger of him dehydrating will increase.  One of the nurses suggested that I get a small humidifier to keep near Paul so that his throat and nasal passages don't become dried out.  This is something I didn't even think about in all the planning to go home.  Today the doctor removed the last chest tube.  Paul is now tube free, with the exception of his feeding tube, which he will probably keep for a few months even after the future reconstructive surgery.  If all goes well this weekend and Paul can get out of bed on his own, climb a few steps and stand without assistance, then come Monday we can go home.  It would be so good to sleep in our own bed and relax in our own home.

My daughter  gave me a small gift.  She said I was Wonder Woman. I've never thought of myself as anyone other than just Jo.


Not Wonder Woman...Just Jo!

Things I have learned with this hospital stay:

• the difference between a stome and a fistula
• How to put on an Ostomy bag.
• Cleaning a tracheotomy twice a day, which includes taking it out, scrubbing it and putting it back in.
• Suctioning down inside the tracheotomy to prevent choking.
• Keep a chair handy on walks.
• Trust your instincts.
• Never ever, ever, ever, give up hope.
• You never know how strong you are until you have to be strong.
• Taking care of someone you love, makes you love them more.
• Almost losing the one you love makes you realize how much you love them.
• Never take an "I love you" for granted.  You never know if it's the last time you will hear it!

On a side note.  I'd like to send out a big "THANK YOU" to all those who have contributed to our Funding Site, http://www.gofundme.com/35f77o  I can not believe the response we have received.  I am overwhelmed by the generosity of our families and friends.  Paul and I thank you from the bottom of our hearts. 

Hugs,
Jo and Paul

“Why did you do all this for me?' he asked. 'I don't deserve it. I've never done anything for you.' 'You have been my friend,' replied Charlotte. 'That in itself is a tremendous thing.”
― E.B. White, Charlotte's Web

Paul walked from his room in ICU to the doors of the unit and back.  It was an amazing feat.  He did struggle and had to stop frequently, but he made it. 

Paul walked all the way to the double doors and back!

It seems as if the reward for his labor was getting one of the two remaining chest tubes removed.  Now mind you, the chest tube goes into his side and is the diameter of my thumb, so this is not as innocent as removing an I.V.   Dr. Tatum was great, he told Paul, "I'm going to count to three, you need to hold your breath so you don't take any air into the chest cavity"  "I will pull the tube out and then pull the stitching to close the hole"   "It should take about 2 seconds"  Paul said "Okay, I'm ready"  Well.... 1, 2, 3, tube out, some very loud moaning, stitches pull to close the wound, some more moaning and DONE!  Paul looked at Dr. Tatum and said "That was more than 2 seconds!"  Got to love my husband.....*smile

Leaving ICU.

We are out of ICU.  Paul stayed off oxygen all morning and into the afternoon, his vitals all are holding steady, he is coughing better so out to a regular room...Finally!!!  The nurses sang him a "Graduation" song.  It was bittersweet to leave ICU.  So sweet that Paul has mended enough to go into a regular room but so sad to leave the nurses and ICU doctors that had given awesome care and encouragement.  The staff on 7 West ICU are to be commended for their dedication and hard work.

I have learned how to put on an ostomy bag to the stoma on the side of his neck, which is currently where his esophagus ends.  And I am getting better and better at it every time.  I have also learned how to suction his tracheotomy when he can not cough up what needs to come up and also how it will have to be cleaned on a daily basis.  The nurses in ICU have been kidding with me that I should get CNA certification and come work here.   I've graciously declined and told them that taking care of Paul is enough for me.

We are on a roll and making progress to going home.   I know it will be a lot of intense work to get him strong enough for the next surgery, but I am confident that being home and surrounded by the love of family and friends will do more good then all the medicine in the world.

We continue to have Hope and Strength....
Hope that things will improve every day and Strength to hold on until it does.

Love and hugs to all our friends, families and loved ones.  
Jo and Paul