Merry Christmas

To all who love Joy as I do, we wish you all the best in the New Year. May you be blessed with good health and prosperity. 

Here's a picture of Joy using a mirror to check out her new hat (a gift from sister Susan) and her scarf that was knitted by our dear friend Jackie Hill:

A very 1960s hat, to be sure.  But having lived through the 60s, 70s, 80s, 90s and the aughts, we are comfortable in any decade.  

Love to you all . . .

A Christmas Blessing

Joy and I got up at 3 a.m, this morning (12/22) to go to the hospital for her angiogram procedure scheduled for 7 a.m.  But before I tell you about that I want to tell you about other events this week.

Joy had a fall yesterday.  She was in the bathroom being dressed by nurse Susan.  Sue had bent down to help put her shoes on when Joy lost her balance and fell between the toilet and the wall.  The right side of her face bumped against the toilet.  Because of this,  she has a bit of swelling and blackeye-ness around the edge of her right eye socket.  She had a small abrasion on the top of her head and another on her cheek plus a scratch on her hand.  I got there a minute after it happened and she looked bewildered but not noticeably in pain.  Sue was very upset, but accidents will happen and we were probably due for one.  It's difficult to be alert to such possibilities every second of every minute of every day.  Joy has fallen twice before, both times outside the house and both times was rescued before she could hurt herself.  We will be more attentive now.

Sister Susan's son (and Joy's nephew) Jonathan Fowler came for a three day visit this week with his wife Jennifer.  They were here for the holidays last year when Joy was first in the hospital, but couldn't visit because Jon had the flu.  But they had spoken to Joy on the phone in her room before the stroke felled her.  Joy and I went over to Susan and Paul's for dinner on Monday night so that Joy could see Jon and Jen.  Joy was cognizant of who they were and the love between them flowed.  You could tell she knew they were family.  Here's a picture of the gathering:

Jon and Jen are both graduates of UC Berkeley.  Jen has a doctorate in physics and astronomy and is a professor at the University of Denver.  Jon also is an instructor in physics there and teaches physics for the Princeton Review.


Now the really good news:  Joy's procedure went so well it has further convinced me that some one up there is indeed looking out for us.  All of you who are praying regularly for Joy have my gratitude.  A couple of months ago, Dr. Sanchez told us he thought that Joy's aneurysm, the one that had bled and caused her stroke, was growing again and that the growth was "not insignificant."  He based that on viewing CT scans, MRI and MRA images.  He thought he might have to install a stent of some kind, that Joy might have to take blood thinning drugs for several months and that her recovery might be set back for a while.

This morning when I spoke to him, he was also very concerned about Joy's head injury due to her fall and ordered another CT scan before the angiogram procedure.  I was dreading the outcome of the procedure and what the next few months might bring when he called a very short hour after she went into surgery and said that the angiogram had shown that all her arteries and both the clipped and the coiled  aneurysms were in very good shape, that there was no sign of internal injury from her fall,  and that nothing needed to be done.  Wonderful news!  He further explained that the scans and images really don't give them a very good view and that you really can't see what's going on until you get inside to get a closer look.  He suggested we do another procedure in a year, just to keep an eye on things. 

I could not have asked for a better Christmas present.  I said last winter in emails that Joy always tried to give presents that were more than the recipient was expecting and she did it again this year with the gift of her stable angioplasty diagnosis and improving health. Now it's back to facilitating her recovery as best we can.

Merry Christmas and a happy and prosperous New Year to all friends and family of Joy.

Love,

Doug and Joy

Waiting For The Procedure

Dear family and friends of Joy:  

We had a great Thanksgiving with enormous amounts of food and too much  football on tv. Sister Susan perfectly roasted yet another holiday turkey and the side dishes were all delicious.  Below a picture of the celebration:

 
Lots of smiles all around.  From left:  John, Mary Anne, Joy, Sue, Susan and Paul.

On December 4th, Joy and I went by ourselves to a Christmas party down the street at the house of our good friends Jackie and Craig Hill.  At first Joy saw all the cars outside the house and didn't want to get out of our car, but I persuaded her otherwise and as we got inside she was enveloped in the warmth of all her old friends in the community.  Of the 25 people or so who were there, half had not seen Joy since her stroke and all were overjoyed to see her out and about.   We ate heartily of the Christmas Chili and casserole and later from a dining room table filled with every conceivable kind of dessert.  It was our first night out together in a long time. 

Sue Thomas regularly takes Joy into town now for shopping trips and an occasional lunch.  Her constant interaction with (and devotion to) Joy is the reason that Joy is continuing to recover at a slow but steady rate.  One day we took Joy upstairs to our second floor master suite for the first time in a year and Joy got to visit her walk-in closet which contains clothes and accessories she had gathered over the past 40 years.  This was a thrill for her and her smile indicates how pleased she was to be there: 

 
It was wonderful to see her go up the stairs.  She did it fairly easily and surprised us.  We were hoping she would carefully take one step at a time and put both feet on each step, but she insisted on taking each step with one foot. She had a little problem with balance, but compared to the first time we tried climbing the stairs, she was very adept.  Two months ago she struggled terribly to get up the stairs to the landing halfway up.  When she got to the landing, she became afraid and decided she didn't want to continue on.  So we sat her down and slid her back down the steps on her rear. This time she was much more sure of herself, intrepid and determined.  It was yet another sign that she is improving, often in ways that we don't see until something dramatic like this happens.

I found this old photo of Joy and me and thought some of you might like to see it.  It was taken a few months after we met in 1991 when Joy was living in Los Angeles and I was in Oakland.  Back when we were courting, you might say.   She'd fly up to see me once a month and I'd fly or drive down to see her once a month.  This photo was taken at her condo at Rancho Palos Verdes which is just below all the beach towns in LA:

 
It was taken just before we went out to dinner at some fancy restaurant.  Joy looked stunningly beautiful that night.

Back to the present:  Joy's angioplasty procedure will take place this coming Thursday the 22nd, precisely a year and a day after she was struck down by her aneurysms last December.  I am feeling the dread I always feel before these procedures, although I feel she is in very good hands with Dr. Sanchez-Mejia.   We have to leave the house at 4 am to check in at 5 am at Scripps Green in La Jolla.   Surgery is scheduled for 7 am.  Please keep her in your thoughts and prayers. 

The landscape around here is often dramatically beautiful this time of year and I have a couple of photos to prove it.  The first shot is looking north out our backdoor at the San Bernadino Mountains at around 7 in the morning.  The sun had not yet risen above the mountain to the east of us.  The day before a moderate-sized Pacific storm had passed through.  The tallest peak in the San Bernadino Mountains is Mount San Gorgonio at around 11,500 feet:

Here's one of our house at sunset with the full moon rising and then another closeup of the full moon above the hills:

We live in a beautiful spot and we are grateful for it.

I will try and update everyone as soon as possible after Joy's surgery.  They think she might be able to come home after a night in the hospital and I hope that is the case.  We are also praying that her recovery is not interrupted in any serious way, that she can quickly regain her equilibrium after general anesthesia, although Dr. Sanchez has warned us that her recovery could be set back.

Merry Christmas to you all and may you have a happy and prosperous New Year. 

Love,

Doug and Joy

We Are Still Here

It's been sometime since the last post, so here's an update.  Joy is slowly progressing and we see countless little indications of that every week that are too numerous to list.  She is responding appropriately more often to verbal queues and doing little things like removing her socks when her feet get too warm.  Purposeful things.  Tonight she opened the door for Heidi after she scratched on it to come in.  In the picture below you will see that she has crossed her right leg over her left and is resting her right hand on a box at the kitchen table.  Six months ago, she could not move either her right leg or right arm. 

Joy with attitude

Tomorrow we go for a series of tests that we hope will assure the doctors that Joy will be ready for her angioplasty procedure that is now tentatively scheduled for December 22nd.  If vacancies in Dr. Sanchez's schedule occur before then, he will move the date up.  December 22nd will mark a year and a day since Joy's aneurysm burst, a sad and frightening day that I will never forget and one which changed our lives forever.  On December 23rd of last year, she had her craniotomy, which she tolerated well.  In fact, Joy was lucid and fully herself for nearly 9 days after her craniotomy, but then the vasospasms from the blood from the other aneurysm that had burst and leaked into the deepest part of her brain caused her stroke on January 3rd.  Later in January, the doctors at Loma Linda seemed to have given up on Joy and were planning to release her to a rest home where she most certainly would have died.  At that point a miraculous rescue occurred that was engineered by Dr. Chuck Smith and Dr. Rene Sanchez-Mejia and, after Joy was moved to Scripps Green Hospital, her recovery began in earnest. 

Yesterday Susan, who had just returned from a business trip to Las Vegas, came over to plan Thanksgiving with Sue and Joy.  Sue's family, which includes her sister Mary Anne and her brother John, will join us for Thanksgiving.  Given that all these ladies are excellent cooks, it should be a day of great food and happy times.  Here's a picture of Susan, Sue and Joy planning the menu:  

Here's another picture of Joy outside after a walk :  

After some problems and delays, we've downloaded selected programs from the apps store on Joy's iPad and she seems to be fascinated with the device.  We hope it will become a useful tool in her journey to recover her ability to speak. 

Finally, a photo of a black phoebe who has taken a liking to our new pool and the dead insects he finds on the surface in the morning.  Although my camera is not the greatest and I don't shoot from a tripod, I'm starting to get some pretty good photos of the wildlife around here.  I will post some on occasion. 

Happy Thanksgiving to you all.  I am profoundly thankful to the Creator to still have my beautiful wife here at home with me.  In the past two years, three men who live within half a mile of me suffered the loss of their wives.   All three of the women who died were younger than Joy.  I am also thankful to my family and friends who have supported us in our difficult time and helped in whatever way they could.  


Our Love to you all,  

Doug

A Good Visit to the Doctor

Friends and Family of Joy:  

We saw Dr. Sanchez again today.  Everything is looking good.  Her incision is healing nicely and next Tuesday they will remove the sutures.  Joy had another CT scan today to document the results of the downward adjustment to her shunt flow and it also looked good.  Her ventricles had increased in size a little, but that was what Dr. Sanchez was hoping to see.   Her infection appears to be under control and we will soon take her off the anti-biotics.

Dr. Sanchez's assistant Brenda came into the room today and asked Joy, "How are you feeling?'' Joy replied, "Okay," and nodded her head.  All of us have noticed that she is talking more and responding more appropriately to verbal queries since her surgery and shunt adjustment 8 days ago.

Her angioplasty procedure will be scheduled for sometime in the next two to four weeks. After that, there will be the procedure to fill the voids in her skull plate.  Dr. Sanchez believes the latter should be scheduled for sometime early next year.  It depends on her health, her rate of recovery and how she responds to the angioplasty procedure.

We are making slow, but steady progress. 

This weekend I will take a brief vacation and travel to San Antonio, Texas to watch my undefeated alma mater, Centre College (7-0), play the undefeated Trinity University Tigers (8-0).  I played four years of football for Centre and started every game as a wide receiver.  Last year I went back to the campus for the first time and attended my 40th reunion.  While there I watched the Homecoming football game, which re-infected my blood with football fever.  From an historical standpoint, this is the most important football game the team has played in over 50 years. (Not as important, however, as a game the team played in 1921 when they upset Harvard for the National Championship. You could look it up.)   I want to be able to brag to my teammates,  several of whom I still correspond with, that I was there when the Colonels knocked off their rival on their way to an undefeated season.  

My Aunt Janice and her husband Courtney are putting me up in San Antonio and I look forward to seeing them.  One of the first things that endeared me to  Joy when I met her in 1991 was her laugh, which was almost identical to my Aunt Janice's laugh.

I am loathe to leave Joy, but I know she is in good hands with her sister Susan and our able nurses Sue, Angela, Natalie, and Misty.

Love to all of you and yours,


Doug

Looking Good

Dear Friends and Family of Joy:

Joy's surgery appears to have been a success.  The procedure was a little more problematic than I understood it to be.  There was a chance that they would have had to remove a portion of her skull if it showed signs of osteomyelitis.  Although tests are being performed in the lab on the plate and screws that were removed, Doctor Sanchez was in general pleased at what he found.

Joy will spend at least tonight and probably tomorrow night in the hospital.  She is responsive, but needs to rest and recover.  She does not appear to be in pain.

We had one of those small and subtle instances of progress on the way down to the hospital.  I was driving and Joy was sitting in the front passenger seat.  At one point, she reached over to the air conditioning vent in the center of the dashboard and deftly turned the knurled dial to divert the air away from blowing on her.  This suggested to me that she may be recovering some of her memory and her motor skills.  It was all very natural.      

Thank you for your kind thoughts and prayers.  I'll post another update in a few days.

Love,

Doug

[UPDATE, Tuesday, 10/25]:  Joy is home and doing well.  She's had a low grade fever off and on, but is lively, energetic and glad to be home.  Tylenol should take care of the fever.  We will spend the next couple of days replenishing her with the nourishment that she didn't get for nearly 24 hours.  Dr. Sanchez also adjusted her shunt so that it was pumping less and will want to see her again next Tuesday to see how that is working.  Joy will likely have her angioplasty procedure sometime in the next two to four weeks.  We will keep you posted.  .......... Doug

Change In Schedule

Friends and family of Joy:

We have had an abrupt change in plans for Joy's procedures.  The angioplasty scheduled for Tuesday Oct. 25th, has been postponed.  Doctor Sanchez-Mejia and Dr. Redfield, an expert in infectious diseases, determined that the metal plate that is exposed on Joy's incision line along the edge of her scalp should be removed before any more procedures are performed.  That will occur tomorrow, Monday.  It had been contaminated with a MRSA infection but we have been treating it for several weeks with doxycycline and the more the infection went away, the more  the plate installed to fasten her skull flap has become exposed.  Dr. Sanchez commented that the skin appeared to be growing back under the plate which is approximately a half inch wide and an inch long and attached by surgical screws.  This has been a problem since at least March, although we didn't really know what it was until a month or two ago.  Why it was not diagnosed correctly by the doctors at Carmel Mountain Rehab when we first began to notice in March, I don't know.

We saw Drs. Sanchez and Redfield and Dr. Sanchez's assistant Brenda on Thursday, the 20th.  Here's a picture of Brenda checking Joy's vital signs:

Brenda and Joy

Brenda is a capable and caring medical professional and we feel lucky to have her working with Joy.  

Dr. Sanchez believes we can schedule the angioplasty procedure sometime in the next month.  We will keep you posted on that. He told me that there have been advancements in coiling and stenting procedures since Joy had her first angioplasty procedure back in early January and that he will be able to do things for her that could not have been done then.  Then there is the matter of the repair of the voids in Joy's skull.  I believe it will be several months before we attempt that, but we will continue to consult with Dr. Sanchez on when the best time would be.

We missed some physical therapy dates because Joy had a low grade fever for a couple of days and Nurse Sue's new dog suffered some bite wounds from her two other dogs, which led to surgery and made Sue unavailable.  But we went Friday the 21st and had a good session with Rachel.  Here are two pictures from that day:

as photogenic as ever

learning to rake again

Joy looks lovely and healthy these days.  She seems happy and contented, although occasionally she asserts her will at what seem like inopportune times for us.  For example she sometimes balks at getting into the car before and/or after an appointment or outing.  This can turn into a test of wills, which I think is  good for her.  Although she is improving, she has a long way to go in terms of recovery.  In the parlance of stroke terminology, she has "deficits."  Her deficits are described medically as "aphasia," "apraxia" and to a lesser extent "dysphagia."  She cannot speak except in occasional phrases, she can't do most simple tasks, and while she can swallow and will eat heartily, she tends to "pocket" her food at certain times, which means she doesn't always swallow things immediately and will hold food or liquid in her mouth for half an hour or more.   Her deficits are abating slowly, but it is going to be a long process.  There is much she will have to re-learn.  That said, her progress is frequently noticeable in small and subtle ways. 


One day last week, Sue saw that a great blue heron had landed on the wall of our spa, perhaps 25 feet from our back door.  (It often feeds on the small fish in our neighbor's large koi fish pond next door.)  She brought Joy over to the glass door to see the creature, which is nearly four feet tall when standing perched.  Joy looked at it and said slowly, "Oh my!"

I bought Joy an Ipad this week and also one for her sister Susan.  The money for this came from the generosity of Joy's co-workers who way back in January donated $1650 in gift credit cards to show their appreciation and help in her recovery. I will never forget the day that Cyndy Smith, Joy's friend and associate at Pitney Bowes, first came to visit Joy at Loma Linda UMC and brought the gift with her.  It came at a very difficult time and it moved me to tears. (Cyndy and I went through quite a few tissues that day.)  I'm hoping the Ipads can help in Joy's recovery.  There are apparently a number of applications at the Apple Store for disabled people  to help in their recovery.  Susan and I will be looking into them.  I am very grateful to Joy's co-workers and thank them from the bottom of my heart for their generosity.

Yesterday,  Joy, Susan and Sue went shopping for shoes for Joy, since the ones she usually wears are getting old.  Joy loves shoes and was a fearsome and legendary shopper for them before her ordeal. Think Imelda Marcos with coupons.  Yesterday, she clearly favored a pair of stitched and studded red shoes with straps.  Susan swore that she could tell that Joy fell in love with the shoes and was looking at them from all angles in the mirror.  So they bought them for her, even though they cost $300.  If Joy--who had a rule to never buy something that wasn't on sale--had known what the shoes cost, she would have had a heart attack.  The good news is that we finally got our tax refund this week after filing late this year. Here are the (quite handsome) shoes:

 

I will try and post a quick update after Joy's procedure on Monday.

Love to you all,

Doug



    

October 2nd, 2011

Just a quick post to update everyone and to post some pictures.  Joy is moving ahead with her  therapy at Scripps Encinitas Rehab Center.  She's had four one-hour sessions of physical therapy and two one-hour sessions of occupational therapy.  She's showing some dexterity. For example, she can unscrew and screw back on the cap on a tube of toothpaste.   She's walking longer distances with better balance every day.  Below a photo of her with her therapist Rachel putting a case on a pillow.

Rachel has been teaching Joy how to get in and out of bed more easily (and safely).  She also walks Joy and they look at a series of paintings on a wall that are to Joy's right in order to expand her field of vision on that side.

Joy's angioplasty procedure to coil her slowly-growing aneurysm is scheduled for early in the morning on Tuesday, Oct. 25.  The hope is that she will be able to return home that afternoon once she comes out from under anesthesia and recovers sufficiently.  Then we hope she will quickly be able to resume her therapy sessions. We are in this for the long haul. 

We went for a walk this morning out to the street.  Here are a couple of pictures:

Our brother-in-law Paul recently asked, "Did Heidi come with that ball installed?"

left to right:  Beauty and the Beast 

 As you can see (or at least those of you who've seen me in the past two years), I've added some facial hair and some pounds.  Time for that diet again.  Joy's healthy cooking is sorely missed. 

Now here's a treat: a couple of pictures of one of our more regal neighbors in Pala.  We see him twice a week on the way to rehab in Encinitas.  He's over five feet tall, at least seven feet long and probably weighs between 1500 and 1800 pounds: 

Glad he's not a carnivore

Thanks to everyone for your prayers, calls and cards.  I'll try and post a few new pictures every week. 

Doug

A Temporary Setback

 "Into each life some rain must fall," wrote Longfellow and for Joy it seems that this year is her monsoon or Hurricane Katrina.  We saw Dr. Sanchez on Thursday the 8th and he delivered the bad news:  The MRA (magnetic resonance angiogram) performed the week before revealed that Joy's aneurysm, the one that had been coiled in early January in an angioplasty procedure, had grown in size and the growth was "not insignificant" according to Dr. Sanchez.

This was the aneurysm (one of two) that the doctors at Loma Linda had initially diagnosed as small and not an imminent threat, but Dr. Sanchez now believes it was the one that had originally bled on Dec. 21st when Joy was stricken.  After they had performed her craniatomy on Dec. 23rd on the larger of the two aneurysms (the one that was clipped), it quickly became apparent to the doctors at Loma Linda that the small aneurysm was a problem, that the reason that it appeared small originally was because it was the aneurysm that had bled into her brain, and may have caused her stroke.  On January 4th, a Loma Linda physician named Dr. Jacobsen performed the angioplasty coiling procedure in an attempt to fill it. That coiling attempt has now proved to be a failure,  but Dr. Sanchez says that even under the best of circumstances the coiling procedures over time have a 40% failure rate.  Dr. Jacobsen was the Doctor at Loma Linda that treated Susan and I with the most respect and spent time with us in front of his computer going over the charts and scans in an attempt to explain the procedure.  His office has since followed up to inquire as to Joy's progress.  I thank him for his efforts on Joy's behalf.

The end result is that Joy will have another angioplasty/coiling procedure at some point in the next four weeks.  Dr. Sanchez will also install a stent to reinforce the coiling of the aneurysm.  Although the aneurysm is deep in the back of Joy's brain and consequently difficult to treat,  the procedure has only a 5% chance of complications.  

It was also determined that the growth on Joy's scalp that Dr. Sanchez's assistant Brenda Mann had removed the previous week was the result of a mrsa infection and needed to be treated with antibiotics.  Suspecting as much, Brenda had prescribed the proper antibiotics to treat the infection.  A week later, the wound looked like it was finally healing properly to Dr. Sanchez.  A mrsa infection is still a dangerous infection and will be monitored closely.

I might as well get all the bad news out at once.  During her craniotomy in December, portions of Joy's skull were removed and not replaced, apparently to allow for swelling of the brain if that were to occur post-procedure.  She has deep depressions at her temple and on the side of her head near her right ear that will require patching of the skull plate.  Dr. Sanchez said he will consider doing that surgery after the angioplasty is performed.  So there will likely be another procedure after the one now scheduled. 

I have complete confidence in Dr. Sanchez's ability to successfully perform the angioplasty procedure and anything else he feels is necessary. Everyone I've spoken to about him--nurses, doctors, patients and their families--has said he is a special, talented doctor and my experience with him so far has confirmed that.  Joy is in very good hands.

Dr. Sanchez did say that the angioplasty procedure could affect Joy's recovery and that she may experience some setbacks because of it.  We believe that the danger of the aneurysm bursting again overrules all other considerations and that Joy is strong enough to tolerate the procedure and will resume her recovery in earnest when she is able.

Here is a picture taken on September 8th of Dr. Sanchez, Joy and Joy's nurse/therapist/neighbor Sue Thomas, who has been invaluable to us since Joy returned home in May: 


 

Another picture of Dr. Sanchez and Joy:

Yes, we have hit a rough patch.  But when I consider what befell the country and some of our fellow citizens ten years ago on this day, and what is happening to some of our neighbors in this economy, I consider us lucky.  Joy's prospects for recovery are still good.  Her rate of recovery so far has surprised everyone.  I'm sure she will continue on that journey once we get her fully healed from procedures and reconstructions.  Next Monday, we will interview and Joy will be evaluated at the Scripps Rehabiliation Center in Encinitas.  I believe Joy will benefit greatly from the therapy she receives there. 

I would like to thank my lifelong friends Jim and Marg Simpson for their support and wish Jim a very Happy Birthday on September 13th.  Joy and I have vacationed with Jim and Marg at their place on beautiful St. Croix on a couple of occasions and always had a wonderful time.  They adore Joy and have stayed in touch with us throughout our ordeal.  One of my goals for us is to be able to go back to St. Croix and visit Jim and Marg.  Another is to visit Gary and Lynn Jensen Nagle in Costa Rica, where we vacationed in 2007.    

Here is Longfellow's poem, The Rainy Day, in its entirety: 

The day is cold, and dark, and dreary;

It rains, and the wind is never weary;

The vine still clings to the moldering wall,

But at every gust the dead leaves fall,

And the day is dark and dreary.

My life is cold, and dark, and dreary;

It rains, and the wind is never weary;

My thoughts still cling to the moldering Past,

But the hopes of youth fall thick in the blast

And the days are dark and dreary.

Be still, sad heart! and cease repining;

Behind the clouds is the sun still shining;

Thy fate is the common fate of all,

Into each life some rain must fall,

Some days must be dark and dreary.

It's not that bad, folks!  The reality is that the sun is shining here and it's a gorgeous, temperate day. Joy is out walking with her nurse Crystal and the dogs.  We are blessed with good friends, a loving family, and a wonderful climate.  God bless you all for your continuing concern and expressions of love and support,

Doug

Labor Day, 2011

Joy and her team had some excitement this week.  Last Monday, a fire broke out in Pala.  It was caused by someone knocking down an electrical pole with their vehicle, which ignited the surrounding area.  It started in the flatlands of the Reservation but quickly moved into the surrounding hills and headed north on southerly winds toward our development of Rancho Heights.  It roared up the backside of  Tourmaline Queen mountain, then down again and up the next ridge.  Here's a picture (looking south) of the fire as it crested the Tourmaline Queen peak, about a mile south of the Rancho Heights border:

Photo by Keenan Murray

To the right of the fire on the western slope, you can see the excavated area of the historic Tourmaline Queen mine, which is in itself an interesting story:  

http://www.palagems.com/tourmaline_queen.htm

The Pala Fire was complicated by the simultaneous outbreak of the Wildcat Fire roughly 25 miles away near Ramona.  That fire was more of an imminent danger to homes, so some of the CalFire crew and air support were pulled off our fire to fight it.  This meant inadequate air support to fight the Pala Fire which, because it was spreading and the winds were increasing on a very hot day in the mid-afternoon, led county and state officials to issue a mandatory evacuation order for Rancho Heights.  The sherriff's deputies, loud speakers blaring,  drove up and down through our development ordering us to leave.  We live among a bunch of ruggeds up here who don't like to be issued orders and only a few people, mostly those with horses, felt it necessary to leave as requested.  I was driving up to the highest ridge in Rancho Heights periodically to view the fire with binoculars and saw no imminent danger.  Barring an extreme change in conditions, at the rate it was moving it would have taken at least two days to get to our house. It would also have had to burn past or through 20 or so other houses before it got to us.  However,  Joy's nurse Misty Kent requested she be allowed to take Joy to safety at her house nearby in Temecula and who am I to question the judgement of medical personnel? 

I was reluctant to let Joy leave, because I knew that once she left she'd have a difficult time getting back in, but Misty was insistent, so I let them go.  The fire was somewhat contained a few hours later, and as I predicted, people were not being let back into the area.  Joy's sister Susan was refused entry after returning home from work and decided to go to Misty's house to wait it out with Joy.  A few hours later Susan called after learning that they would let residents back in if they had identification to prove they were residents.  At around 9 pm I met Misty and Joy down at the sheriff's roadblock and they were let back in.  Here's a picture of the fire area the next morning from a slightly higher elevation:

The white stuff is the fog/marine layer that came in overnight and made it easier for the fire fighters who were mopping up. Here's closeup of what the burn area looked like:  

The orange color in the foreground is from the retardant the planes dropped to stop the fire.  The chaparral burns very hot. It doesn't look it, but most of the brush you see is probably 6 to 8 ft. tall and very thick.  

* * *

Joy continues to improve.  She's showing more signs of her old personality, which was independent and assertive.  She's standing up for hours on end, and studies everything.  We are taking longer and longer walks, sometimes over rough terrain.  Her balance is improving, but has a way to go.  We are reducing the amounts she is being fed through her feeding tube and increasing her intake of solid foods, which she really enjoys. Nurse Sue Thomas and Sister Susan have been cooking nutritious meals for her.  She's communicating a little more all the time.  

On Thursday last we went to Scripps Green Hospital for tests and a visit with Dr. Sanchez's assistant Brenda, as he was away in Germany at a wedding.  A piece of metal installed during her craniotomy (a staple?) has not allowed an area of her skin at her hairline to heal properly and she had developed a growth which Brenda removed.  She may need some kind of corrective surgery to allow that area of her scalp to heal properly.  There are also voids in her skull that Dr. Sanchez at our last visit suggested might have been left that way in case her brain started to swell after surgery.  She has a very deep depression at her temple that is an area devoid of skull and potentially dangerous if she was ever hit by something there since her brain is just below the skin.  He hinted we might want to do something about that.   We will see Dr. Sanchez again on this coming Thursday and there will be much to discuss.  

While at the hospital, we had lunch in the cafeteria between lab tests. Sue Thomas and sister Susan were with me caring for Joy.  I sat with Joy while they went through the cafeteria line.  The room was crowded at lunchtime and Joy said something that sounded like, "This is like K-mart,"  which was interesting, since Sue Thomas had taken her into Walmart the previous week for a quick shopping spree in a motorized cart.  

Misty Kent has a neighbor who analyzes and strategizes complicated surgeries for doctors and has a lot of experience with patients like Joy.  He helped Misty get Joy in the car for the ride  home after the fire and his opinion after observing Joy was that she  has a very good chance of a significant recovery and that we should be pushing her to accomplish as much as she can.  I'm hoping that Dr. Sanchez will order an evaluation for her at the Encinitas Rehabililitation Center, which specializes in the rehabilitation of neurological patients.  I'd like to get her in therapy there a few times a week as an outpatient.  We could really use some advice from the experts there on how best to facilitate her recovery.  We've had therapists come and they've been helpful, but I think it's time for a more comprehensive program now that she is beginning to respond to commands and communicate more. 

In each post I have thanked someone who has been instrumental in our path to recovery.  In this post I would like to express my gratitude to Dr. Charles Smith, who saved Joy's life by intervening with the doctors at Loma Linda University Hospital and demanding that she be sent to Scripps Green where his friend and associate Dr. Rene Sanchez-Mejia could care for her.  The doctors at Loma Linda had given up on Joy and were unable to alleviate her acute hydrocephalus problem.  They were ready to ship her to a rest home in some backwater town where she would most certainly have died.  Once Joy was at Scripps Green and recovering, Chuck offered me a room in his and his wife Pat's condo nearby so that I, like him, would not have to drive back and forth between Pala and the hospital every day.   Pat also was gracious enough to drive all the way down to the rehab facility at Carmel Mountain one day with a spare set of keys for me after I had locked myself out of our car.  They are very special people and I am indebted to them. 

The nurses have been putting make-up and earrings on Joy and styling her hair.  She looks wonderful.  Here she is at rest the other day (She's been smiling a lot, but in this case she wouldn't give me a big one):

I will try to post every two weeks or so.   Thanks to everyone who continues to show their love and affection for Joy.  We feel it every day.  

God Bless, 

Doug

Happy Birthday to Joy

On Saturday, August 13th, friends in the neighborhood of Rancho Heights came to our house to celebrate Joy's 59th birthday.  In attendance were Susan Thomas, her sister Mary Anne Schetter and her brother, John Kilker;  Joy's sister Susan Fowler and her husband Paul Polena; Chuck and Pat Smith,  James and Cori Szepkouski, Ron and Cherrie Steffey, and Dave and Donna Wilbur.  Susan Thomas, who is Joy's nurse and therapist, and her sister Mary Anne catered the affair and the food was perfectly delicious and diet-busting.  Joy's sister Susan baked a tasty chocolate short cake with strawberries and whipped cream for the birthday cake.   Our good friends, Jonathan and Jan Geller and Craig and Jackie Hill, who've been very close to Joy and me since the beginning of her crisis, were out of town and unable to make it.  We missed them. Below two  pictures of the assembled guests:

 

Chuck and Pat Smith standing in the center

The Birthday girl is on the right.

Joy tasted bits from the wide variety of foods. Because she had her favorite blouse on and because she wasn't sitting at the table, I fed her from her plate.   At one point while I was feeding her, she calmly reached over to the side table, picked up my glass of white wine, took a sip and put the glass back on the table.  This elicited applause from the guests who witnessed it. 

Joy shares her birthday on August 13th with my good, generous and loyal friend Gary Nagle, who I've known for nearly 50 years now, having mis-spent our youth together.  Happy Birthday to Gary down in Costa Rica! 

 

We also heard from Joy's friends from around the world.  In particular a lovely card was sent by Colin and Linda Carr, who now live on the coast of Spain. (They also called all the way from Spain, but unfortunately we were out at the time.)  Joy knew Colin from working with him all those years ago with the Royal Mail. Colin and Linda have kept in touch with us and came for a visit here a few years ago. Linda makes exquisite hand made cards and she put together a spectacular one for Joy's birthday.  Here's the image:

It's hard to see from the photo, but the image is layered and has a 3D effect in your hand.  Linda also included an original poem in the card: 

        

Count your garden by the flowers,

Never by the leaves that fall, 

Count your days by golden hours,

Don't remember clouds at all.

Count your nights by stars not shadows, 

Count your years with smiles not tears.

Count your blessings not your troubles, 

Count your age by friends not years. 

And that about says it all. 

God bless you all,  

Doug 

August 6

Hello, friends and family of Joy: 

Joy continues to improve.  I apologize for not posting earlier, but we've been busy.  Joy went to see Dr. Sanchez-Mejia on July 26th at his office at Scripps Green Hospital near La Jolla.  He had not seen her since April 22nd.  She had an MRI and then we went up to see the doctor.  We wheeled her wheelchair down the hallway to his office and then helped her stand up and walk inside.  Dr. Sanchez said, "I'm shocked to see her walking like that.  She has made amazing progress."  Later he said that when he released her from Scripps Green on March 1st that he didn't really know but wasn't optimistic that she would have a significant recovery.  He said, "Now I'm more optimistic."  At that time he told me that we would have some idea of what her recovery might be like in three to six months.  We are now five months out from that time and Joy is impressing everyone including her nurses, therapists and friends with the rate of her recovery.

The trip down to Scripps-Green was not all smooth.  Joy got carsick as we entered the parking lot and then again when we arrived back in Temecula.  She tends to focus intently on small things, e.g. the cup holder in our Toyota, which probably had the similar effect of trying to read a book in a moving car.   It's an hour drive and she made it for 55 minutes both ways before she got sick.  We'll stop for a break part way to our destination next time. 

She has begun to eat more solid food.  She's eaten hamburger, ground turkey, corn, beans, omellettes, egg salad, fruits, vegetables, soufles, pasta  and cookies in small quantities.  We had been told by most professionals that she shouldn't be eating until a swallow test is performed, but we've proceeded ahead anyway, with Dr. Sanchez's blessing.  We've reduced her canned liquid food intake down to five cans a day from seven and half.  She still has a tendency to hold liquids in her mouth and not swallow them, but she always seems eager to chew and swallow solid foods.

On Wednesday, Joy's nurse Sue Thomas, who has been wonderful for Joy and acts as much as a full-time therapist as a nurse, took Joy to the movies and out to lunch.  They went to  see the animated feature "Rio," about a blue Macaw.  Afterward they went to lunch at Chick Filet.  Joy slept a little during the movie, but Sue said she smiled through most of it.  Joy needs assistance when she walks but can walk for ten minutes or so at a time and stand for even longer periods than that.  Lately she's been puttering around the kitchen  opening drawers, cabinets and the refrigerator,  seemingly to re-acquaint herself. (We keep her away from the knife drawer.)   I hope some day she will recover enough to be the superb cook that she was. 

Yesterday, Joy's good friends from Pitney Bowes, Cyndy Smith and Georgia Schweitzer, came for a visit.  Joy laughed heartily for the first time.  She's smiled a lot before, but yesterday she laughed a couple of times with her full frame.  Cyndy had cooked some excellent chicken and made her world-famous potato salad, which Joy (and everyone) loved.  We all had a fun time.  Here's a picture of the Pitney Bowes gals and sister Susan on the back porch (from left: Georgia, Cyndy, Joy and Susan):

In each of these posts I want to thank someone who has helped Joy and me through this ordeal and no one has done that more lovingly than Joy's sister Susan Fowler.  We went through the very difficult early days together and Susan never once flinched.  While Joy was in Loma Linda, Scripps Green and Carmel Mountain she visited regularly several times a week.  She and her husband Paul Polena took care of our dogs Heidi and Jax when I was spending nights at the motel in Loma Linda and at Chuck and Pat Smith's condo down near La Jolla.  She helped me make some sense of our financial affairs, which was something Joy handled for the most part in her own inimitable way and which took some deciphering and wading through four jam-packed filing cabinets to find the proper documents on several occasions.  Thank you, Susan.

I'd also like to thank Cyndy Smith, who was with Joy when she was stricken, went with her to the emergency room, and who has visited her in each of the hospitals/facilities that she's been in.  She's been a true and loyal friend.  

Speaking of Heidi and Jax (aka Lucy and Desi), here they are:

Heidi's job is to retrieve the tennis ball, and Jax, who has no interest in retrieving but does love to kill small animals, feels it is his duty to harass her while she is retrieving. Jax had rattlesnake avoidance training a few months back and recently cornered one in our pool equipment shed without getting bit.  I dispatched that one with my shotgun.  I've had to kill at least a dozen over the past 4 years or so.  I hate killing them, but if one bites one of the dogs, the vet bill will be over a thousand dollars, even if they don't survive. If they are inside our fences, I have to eliminate them.

Joy is interacting with the dogs much more now, petting them and watching them play.  When she first got home, they moved too fast for her to even see them.  Now they come up and lick her hand and face on occasion and she looks at them in wonderment and pets them before they are on their way again.  Heidi has a habit of dropping her slimy tennis ball in Joy's lap, which I interpret as a sign of optimism on her part.  Eventually, Joy will throw the ball for her and Heidi seems to know it. 

Joy is still not communicating very well, although she does seem to follow conversations and reacts to things that are said.  She can't speak in fully formed sentences, but does try at times.  Occasionally she says an appropriate word or phrase during a conversation.  She is still much like an infant with a fascination for all things that she can pick up and hold in her hand.  She will study them for long periods of time.  Her curiosity is boundless.

Her recovery will be a long one, and we are all hoping it will be a significant one.  Thank you all for your thoughts and prayers.  I will try and write another post in a few weeks. 

Doug

A couple of pictures

Friends and family:  I am going to post a couple of photos of Joy in this message.  I'm learning to publish a blog for the first time, so bear with me.

Yesterday I took some photos of Joy which are slightly out of focus.  Since Joy is not wearing make-up, she would probably approve of them being out of focus.  She was in bed and woke up in a pretty good mood, which happens when she sleeps well.  Here's the first:

 Here's another:

I've got a new computer which is my first Mac, a new camera, and a new blog, so bear with me.  I'll try and improve on the quality as we go.

Here's the picture I spoke of in the last entry:  

Joy is eating some solid foods and chewing aggressively.  We are a bit apprehensive about feeding her solid food until we get another swallow test from the hospital, but she's eaten little bits of ground turkey, corn kernels off the cob, chopped up pesto and pasta, and a full one-egg omelet with cheese, which she ate with a fork by herself.  We are looking forward to getting her off the feeding tube.  She's walking a little better although she has days when her balance is off.  Her cold is improving although she's still got a runny nose.

With each of these posts I'd like to thank someone who has been instrumental in helping Joy and me get through this.  First I'd like to thank my mother Dorothy  who has been praying for Joy and even has her entire church praying for Joy every Sunday.  (Joy's name has been printed weekly in the program for each Sunday's service.)  My mother has been sending cards and letters weekly and calls frequently.  She adores Joy and we adore her.  Thanks, Mom.

Please send me an email any time if you have questions or want to come for a visit.  My dear cousin Andrea Atkins Boldt from San Antonio will be visiting in the next couple of weeks.  My sister Meg D'Ullisse (who is a nurse) and her husband Frank visited several weeks ago.  For a long time I didn't feel visitors would feel comfortable or that Joy would respond to them, but I think the time has come for people to visit when they can on occasion.  Just give me a call or send an email letting me know.

Love to you all,

Doug



 

Welcome to Joy's New Blog

Dear Friends and Family of Joy:

Since I've been remiss in posting updates and because I'd like to keep people updated more readily and without having to send out scores of emails around the globe, I thought I'd start up this blog for those of you who know and care about my beloved wife, Joy.  I will do my best to post on a weekly basis or whenever something meaningful happens during Joy's recovery.  It's been almost two months since I sent out an email to you all and I apologize for my inactivity, but since Joy has been home my responsibilities have multiplied and I've been busy.  Our home is now a bustling hospital for one. 

Joy's first full day home was the 1st of May.  Since that time, she's had nursing care provided by four nurses who work two alternating ten-hour shifts a day from 8 am to 6 pm and from 8 pm to 6 am.  The nurses are great ladies and  give Joy constant care, which she needs and appreciates.  She's still on a feeding tube, but is eating jello, soup, and applesauce at times.  She is now able to pick up a small glass of water with her left hand, sip it, and put it down without spilling it.  Her coordination is improving daily.  One day I gave her a small glass of fresh-squeezed orange juice.  She sipped it, smiled and said, "Niiiice."

About three weeks ago Crystal (her nurse) and I noticed that Joy was trying to lift herself up out of her wheel chair.  So we helped her stand and then walked her a few steps to her bed.  She was putting one foot in front of the other and actually walking, which was a great sign of progress considering that a mere 8 weeks before that time she could not even move her right leg or right arm.  Now she's moving both regularly and we are able to walk her from room to room several times a day.  

Yesterday she treated us to another wonderful surprise.   She  put both hands on the arms of her wheelchair as if they were parallel bars and after a few unsuccessful attempts, lifted herself up to a standing position.  She did it again a half-hour later.  She can now stand for several minutes with both hands gripping the railing I've installed along the dining room wall and she does it with no assistance.  When we walk her with one person on each side, she does well,  although she tends to list to the starboard side, which is her weaker side. 

She is speaking more with a full-throated voice, but she speaks mostly in disconnected fragments, often phrases that have to do with her job.  Occasionally she will respond appropriately to a question with a one word answer or a nod.  For example, after she walks for a while and is tired, and I ask her if she wants to sit back down in her chair, she will say, "yeah." 

Unfortunately, the insurance company (United Healthcare) did not approve payment for any in-home nursing care, so we are paying for all of this out of pocket.  They've also denied coverage for an ambulance bill for $3600-- the cost of the trip from Loma Linda UMC to Scripps Green hospital.  They claim it was "non-emergent."  I will probably contest that decision since I moved her to save her life when it became clear the doctors at Loma Linda had given up on her and were no longer interested in treating her.  United Healthcare also paid part of the bill for the ambulance ride from Scripps Green to Carmel Mountain Rehab, but we have been billed $1300 for our share of the cost.  We are additionally being billed for our share of medical services she received at both hospitals.  Arrrgh.  If we can get through this year, we should be all right. 

On a more positive note, Joy's strength is increasing daily and her physical therapist is thrilled with her progress. (The insurance company is paying for in-home therapy.)  By the eager look on her face, you can tell Joy wants to get better and stronger.  The condition of her brain will take longer to improve, so all we can do is get her as healthy and strong as we can and let nature take its course.  The term "neurological plasticity" means that undamaged parts of the brain can sometimes assume the responsibilities and tasks performed by the damaged parts.  I hope that will happen with Joy. 

I greatly appreciate all the prayers, letters, cards, flowers, gifts, emails, phone calls and good thoughts that have come our way from all of you who know and love Joy.  Please stay in touch and don't hesitate to call if you want to know the latest.  At some point I will learn how to post photos on this site so that you can see how she looks. (When she's not tired, she looks lovely. Radiant even.)   Yesterday I took a shot of her reading the Wall Street Journal.  Of course, she wasn't actually reading it, but was instead fascinated by the pictures and complexity of the thing .  That is how she is with a lot of objects.  She stares at them endlessly and seems to absorb their essence.

I have my down periods when I wonder if Joy will ever recover to the level she would find acceptable, but her progress while at home has picked up my spirits some and I've become more hopeful.  Most importantly, she is actively trying to get better and seems more aware of the process and her role in it.

Love and best wishes to you all,

Doug