Living Well with a Bad Diagnosis - Lung Disease

Sunday, September 30, 2012

A Night to Remember

They just left. My niece Shelley and her friend Tracy came to spend some time with my mom yesterday then the night with us. They loved mom's apartment and we took them to a beautiful restaurant called TOWN where we ate outside. It was perfect. Mom so enjoyed being with them and the conversation never paused for a moment.

The traffic over the pass to our house was as miserable as predicted and it took over an hour to get home. Pumpkins. All because of pumpkins! Once home, we threw out the plan to eat dinner at a restaurant at the top of the pass. No way were we going to sit in traffic again! We sat in the garden and they had champagne and some white wine before we headed north for dinner. It was all Michael's idea. He is to blame.

He has a friend who owns a restaurant inches from the ocean. It is the same restaurant where we went to their anniversary party a couple of months ago. It is in a time warp. Very 1950s and the people there were often still dressed in clothing of long ago eras: velour shirts on some women, 60s go-go boots, long hair and weird facial hair on some of the men, old fashioned hair get the point. Well, they loved it. They loved the bar, they loved the people, they REALLY loved the food, they loved the live band. Michael and I highly encouraged them to dance and they were off! We have photos! They were having a ball. We ordered some appetizers and a champagne cocktail for them, Angel's Envy for Michael and water for me. Guess who was driving home? They are known for their crab sandwich on sour dough bread. It is the best we have ever had. They split one, had some very tender strips of steak and hot goat cheese with sun-dried tomatoes, olives, roasted garlic. We also order their garlic bread. I think Michael ate most of it! But, he didn't eat much else....a big mistake.

We arrived around 6:00 and left around 10:00. They were picked up on the dance floor by a gay woman who wanted to dance with them, so they did! Tracy slow danced and was even dipped! Shelley was twirled. She wanted to buy us all another round of drink. Nope. We were done and out the door.

After we got home, I put out a bit of food, a bottle of wine and music. We stayed up talking until midnight. Everyone had a brilliant fun time.

Except Michael. It began around 3AM. Sick. 5AM. Sick. 7AM get the idea. It is now 1:30PM and he wanted some McDonald's and a real coke. He is keeping it down. I think he drank three drinks on an empty stomach. Not smart.

So, the girls just left for home over two hours away. It will be a night that will be talked about for ages. I really enjoyed myself.

Today at 3:00, there is a string concert in town featuring some of the orchestra members. I love one of the kids who is heading to college next semester. He is a brilliant violinist and was part of the other group of young violin students I played with during the holidays. He is performing the Bach Double Violin Concerto. A great piece of music. I really want to be there for it.

It was so fun to get out of our routine and spend some time with Shelley who is terrific and smart and funny and so confident. And a good dancer! What a night!

Saturday, September 29, 2012

The Visit

It has been cool and even wet most of the day yesterday. The temperature here on the coast is expected to be in the 70s today, tomorrow in the high 70s and Monday in the 80s. Unusually warm.

The problem? My niece Shelley and her friend Tracy are coming for a visit today. After seeing mom's place and a nice lunch, we have to drive the pass. A pass that is going to be packed with people trying to escape the 90+ degree heat on that side of the hill. It's going to be ugly.

Tonight, we are heading back to the top of the mountain to one of our favorite places for appetizers and cocktails. That means we will be in the traffic of people leaving the coast to go home. More traffic.

We keep reminding ourselves that it is the price we pay to live in a resort area. October is always the biggest challenge. We are the pumpkin capital in this part of the state and the fields are lines with pumpkins ready to be chosen for Jack 'O Lanterns. There are also farmers who go a bit crazy and offer everything from hay rides to haunted houses to pony rides. It makes for impossible traffic for the entire month. After pumpkins, the Christmas tree fields are opened for people to cut their choices for the holiday. By January, we are all happy to get the coast back to ourselves.

But, for today I am so looking forward to being with mom, Shelley and Tracy. I will bet that there is not a moment of silence and lots of laughter. The house and gardens are ready for company, a breakfast quiche is in the refrig for Sunday and a bottle of champagne is cooling to be enjoyed tonight out in the garden after dinner.

Friday, September 28, 2012

Just a Friday

The run of antibiotics are finished. I don't know if I am totally healed. Thought I would see how I feel through the weekend and e-mail Dr. K. on Monday.

The rehearsal on Wednesday night took the stuffing out of me so I was low energy on Thursday. But, the gardens needed to be addressed as my niece and her friend are due on Saturday afternoon. At 11:30, I began. Two hours later, the front was finished. While working in the back, the housekeepers arrived to do their magic. After three hours in the back gardens and washing all the windows, I was finished. Done.

But, NASA we have a problem. Michael couldn't get home. A huge garbage truck flipped over on the pass just before rush hour spewing garbage as well as causing injuries. He couldn't get home through the pass. It was closed.

So, he headed north to another pass then the plan was to drive south along the ocean to our community. Because the normal pass was closed, this one was packed. When he finally got home, it was over 1.5 hours of sitting in a car surrounded by heavy traffic. This normally should take 25 minutes.

I am going to take it easy today. I need to buy a few items in town, make a breakfast quiche, shower, iron a few things and a nap. Yes, definitely a nap.

Thursday, September 27, 2012

No Love for Elgar

It was a rather weird orchestra rehearsal last night. Elgar's Cello Concerto. First read through. It was rough.

The first chair cello is an older man who is a fine musician. For some reason, he just doesn't like me, or I try to believe that he just doesn't like bass players in general. I am not sure he even knows my name. He had made snarky remarks about Gerry and me in front of the orchestra during rehearsals last year. Remember, Gerry was just returning to the instrument after 40 years and is doing an amazing job. She should pass me in a short period of time! But, he was constantly directing negative comments towards us. I spoke with the conductor about it towards the end of last season and it has calmed down a bit. I think the conductor got a whiff that I was not going to hang around if it didn't stop.

Last night, Mr. Cello took full control of the orchestra and it took twenty minutes to get through the first eight measures of his big show piece. The conductor gave his power away. No one in the orchestra had performed this piece before. Usually, we start with just playing it through then we will go back to tweak the emotional elements with the remainder of the rehearsals. Not last night. He talked. He had hold and was not letting go. Each measure had to be discussed. It was painfully long. The piece itself is a conversation between funny clown and a straight clown, the latter being the orchestra. It had difficult time signatures and not a lot of fun to play.

After we ran through it, we played a first reading of the 4th movement of Beethoven's 5th Symphony, which I had not played in at least 20 years. It felt fantastic to go from the showy and non-intuitive Elgar to my dear Mr. Beethoven. Then, it happened. During this movement, my hand memory returned. It knew what was coming. It knew where to go and the music just poured out of my instrument. I love when that happens.

When Gerry's husband came to haul her bass to their car, I told him to not mention the name Elgar or, in fact, any words beginning with the letter "E" for the rest of the week! Gerry and I moaned then laughed. It was a tough rehearsal and next week's is going to be the same as Gerry will be on a business trip. I will have to face it alone!

Wednesday, September 26, 2012

Final Foods

Food. It started with a conversation with mom yesterday. We talked about which foods we would choose if we were dying or having our final meals. Serious final food choices.

Mom’s list:
1.   Mac “N Cheese like her mother used to make
2.   Pizza with cheese
3.   Grilled cheese sandwich.
She clearly has cheese issues!

My list:
1.   Thin crust Italian-style pizza with great flavors but little cheese
2.   A BLT on toast with a bit of mayo
3.   A full bag of Lay's potato chips. Okay, many bags of Lay's potato chips.

Clearly, I have a carb issue! I couldn’t remember what I had listed as my third choice during our conversation so I phoned mom and she couldn’t remember! From the couch Michael said, “I bet I got it!” This man has been married to me too long! He nailed it!

So, I turned to Michael to ask for his top three choices:
1.   Clam Chowder with French bread
2.   Steak and fries
3.   Pecan Pie

It’s fun to think about the naughty foods when my food choices are so limited. I even find myself dreaming about certain foods. It would be fun to see other’s lists. Comment, if you wish.

Tuesday, September 25, 2012

Orange County, CA Walk for Pulmonary Fibrosis

If you are in Orange County, CA and wish to help fund raise for Pulmonary Fibrosis research, please read the below e-mail I received from the Coalition for Pulmonary Fibrosis folks. Good people. Great organization. All the needed information is below.

2012 Orange County Walk for PF - Tribute to Carlos Juarez Saturday

2012 Orange County Walk for PF - Tribute to Carlos Juarez
Saturday – October 27, 2012
2nd Annual Orange County Walk for PF
Laguna Niguel Regional Park
28241 La Paz Road
Laguna Niguel, CA
8am Registration
9am Walk (course is approximately 2 miles)
Individual Registrations: $20
Couples Sponsorship: $100
Family/Corporate Sponsorship: $250
Underwriter: $500
($5 Per Vehicle, collected by Park)

**Please register by Mon, Oct 15th to ensure a t-shirt**
If you are unable to attend but would like to support this event with a DONATION, please click here:
For additional sponsorship or volunteer opportunities, please contact Sandra Juarez-Runyon at  or call Su Hwang at            888-222-8541       x704.

Su Hwang
Director, Special Events
Associate Director, Development

Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd #343
Culver City, CA 90232

888-222-8541 x704

Monday, September 24, 2012

CT Scan Results and a Fly By

I had the CT Scan at 8:00AM Friday which meant leaving home at 6:30. So early but Friday light traffic made it an easy drive. Thankfully. The CT Scan really takes just minutes. Afterwards, I was approaching the elevator to go to the blood draw area and there she was. Dr. K. arriving to work. We shared the elevator, she asked how I was, I responded that I had sent an e-mail to her Friday evening; she told me she would reply after seeing the CT results.

So there I sat for almost an hour while waiting for my number to be called for a fasting blood tests for cholesterol and thyroid levels for Dr. M.

While sitting and waiting, I swear I saw and chatted with over a dozen people I knew; everyone one from doctors to people working in the clinics. It was fun and made the time fly.

I left the hospital around 9:30 and got to my mom’s at 10:15. It was going to be a big day in the Bay Area. The last flight of the Space Shuttle was making its final fly by from Edward’s Air Force Base in the Southern California desert to Travis Air Force Base in the East Bay, then a few passes over the Golden Gate Bridge where it then headed south to Moffitt Field near Palo Alto.

Mom’s apartment was going to be right under the flight path. We heard on the news how close it was getting, ran to the car and drove up the hill. Then suddenly, there it was, flying right over our heads. It was HUGE. It was thrilling. It was something we will never forget. We looked at each other just repeating, “Wow!” So cool.

I needed food. Fasting blood tests. No coffee or breakfast. Now it was lunchtime. Serious food. We did a quick look for a dress at Anthropologies before lunch on the Avenue. Fresh turkey slices on greens with beets, carrot salad, cranberries, cucumbers and a half of a hard-boiled egg. A big lunch for me. It as exactly what I needed.

I checked my iPhone to find this e-mail from Dr. K:

Here is what the radiologist said about the CT Scan from today: Unchanged bilateral diffuse reticulation, traction bronchiectasis
and air trapping, consistent with hypersensitivity pneumonitis

I selected levaquin for the current antibiotic; 500 mg/day for 7 days.

At least it is not pneumonia but my over 6-week outing with acute bronchitis continues. What I am worried about is if this is the natural progression of the disease or if it be cleared up with the new antibiotics. Fingers are crossed for the latter. It is keeping me up nights worrying about it.

So, still no rehab yet. I really miss it. I am not feeling any better after three days of taking the new drug. Nervous.

Sunday, September 23, 2012

More Menus for the Week

Those of us on long-term prednisone often have problems processing certain foods. Our pancreas is tired and overworked. The foods, which help the pancreas and our waistline, are non-starchy vegetables and protein. Only 3-4 ozs of protein and, in my case, a total of 1,400 calories a day. With those parameters in mind, I mine the Internet for recipes that can be adjusted to these proportions. Low fat. Low carb.

I hope sharing these recipes offers better food choices while dealing with the prednisone side effects.

I baked the breakfast quiche in the new oven yesterday. It turned out perfectly. I realize now that the old oven was really not consistent heat and it had been failing for quite a while.  The quiche, which includes non-fat cottage cheese and eggbeaters, was made with pancetta, caramelized onions and low-fat shredded Mexican Blend cheese. It was delicious.

First, we had Basque-Style Shrimp from Prevention Magazine and a side salad.

Then in two days, I will use my new wok to make Mongolian Beef with a side of cabbage with a lite Asian dressing.

The final recipe for the week is Michael’s most favorite – Pizza Chicken served with a side salad.

Happy cooking!

Saturday, September 22, 2012

Lastest Pulmonary Fibrosis Research and Clinical Trials

I received this very informative and interesting email from The Coalition for Pulmonary Fibrosis. If is full of information regarding the latest research and clinical trial information. This organization has spent over $2M in specific research. 

I write to tell you of the increased hope and enthusiasm as the work of the Coalition for Pulmonary Fibrosis (CPF) continues the fight against Pulmonary Fibrosis (PF).  I want to share some of the good news with you as we prepare for the2012 Pulmonary Fibrosis Awareness Month, this September.
Every day progress is made in PF research and we are very proud that, to date, the CPF has invested more than $2 million towards these aggressive searches for answers.   Recent examples of important research progress include:
-Newer understandings of genetic markers and proteomics in PF - the study of proteins that are linked to PF --- in the biomarkers signaling rate of disease advance, as well as other recent projects looking at stem cell research and PF;
-Better defined disease pathways that are key, most notably chronic injury to the alveolar epithelial cells, cells that covermost of the interior surfaces of the lungs;
-Ever more information about the effect of surfactant protein mutations  - the proteins that reduce surface tension in the alveolus of the lungs where gas exchange is critical, and other cellular challenges that are being linked to PF;
-At the University of Southern California (USC), here in Los Angeles, researchers are looking at the signaling pathways between Wnt/β-catenin, a signaling pathway, and transforming growth factor-β. TGFβ is a protein that regulates proliferation.  The apparent increased expression of the a-smooth muscle actin protein, a fibrosis source, may be treatable with ICG-001;
-At the University of Pittsburgh’s Simmons Center for Interstitial Lung Disease, researchers are looking at biomarkers that could signal the rate of disease progression in patients, alerting some patients to the need of getting listed early for transplant;
-In the pharmaceutical world, Boehringer-Ingelheim is in a Phase III study for a PF
treatment; InterMune continues its Phase III study of Pirfenidonewhich is approved
for use in Western Europe; Fibrogen is in a promising Phase IIB study; Celgene
has a Phase II study in CC930; and there are more!
The CPF works to foster an ever-greater expansion of studies. The science around PF is absolutely advancing, with ever-expanding teams of researchers taking on PF!  If you are interested in further in-depth information, we have made multiple research papers available on the CPF website at
Add to these achievements the new FDA Safety and Innovation Act, enacted in July, that contains the most groundbreaking measures for rare disease patients and their families since the Orphan Drug Act of 1983. Specific to the rare disease community, the Act provides the following:
  • accelerated patient access to new medical treatments
  • the development of Humanitarian Use Devices (medical devices for small patient populations)
  • accelerated development of "breakthrough therapies" -- those that show early promise
  • enhanced FDA consultation with rare disease medical experts
  • a rare pediatric disease priority review voucher incentive program
  • resolution of conflict-of-interest issues that kept voices of rare disease medical experts from being heard
And, looking at your Coalition for Pulmonary Fibrosis:
- In May the CPF announced the winners of the annual CPF Awards given
in two categories for 2012:  the Marvin I. Schwarz award to Dr. Andrew Tager for his outstanding contributions to PF research (his discoveries in Lycophosphatidic acid
receptor activity in PF now resides with Bristol-Myers Squibb (who purchased
Amira), and the Francis Cabral Humanitarian Award to Tami Rippy for her extraordinary commitment to generating awareness of, advocating for, and raising money for the efforts around PF. The Marvin I. Schwarz award carries a monetary grant to be applied towards further PF research.

-Every month the CPF sees an average of 45,000 unique visits to our website,which tells us that people are hungry for information.  The actual number of monthly “hits” to the website is about 240,000.  Our Daughters of PF Linked-In site and Facebook sites help to further assure that we are sharing the most useful PF informationand we have added a “Know Your Risks” section to the website, which alerts people to the kinds of illnesses, toxins and drugs that may contribute to PF.
-  Every  day the CPF takes calls from patients and caregivers throughout America who need answers and help now. These include everything from medical referrals, to questions about where to get personal support and information, to simply wanting to understand better what is known about the disease.  We arm callers with
information and resources, so that they can better empower themselves as patients or caregivers.
-  Every day, just as importantly, we actively encourage  people to tell others about PF – we are spreading the word, reaching out everywhere, from the NBC Nightly
News, to daily newspapers, to actress Rose McGowan’s vibrant fan club, and
countless other national and local media resources.
The September PF Awareness month and Capitol Hill efforts on the
Pulmonary Fibrosis Research Enhancement act will help us recruit an expanded chorus of voices demanding change.

Fifty-two weeks a year the CPF staff is working to make certain the nation understands the impact of PF and to energize the American public to support our urgent work.   With your collaboration and support, positive change continues, and more is on its way!
Mishka Michon, CEO

Treatments for PF cannot be found without patient participation.
Please consider joining a trial to help  find treatments.  Go to the CPF or for more information.
This is a partial list:    
- Phase III –InterMune – Pirfenidone-Visit
- Phase II:  Fibrogen - FG 3019
- Phase II:  Novartis – QA576
-Phase II: Stromedix – STX100 
-Phase I:  Gilead – GS6624
-Phase I: Promedior – PRM 151
If you’re interested in joining a clinical trial, discuss the option with your doctor and contact the company holding the trial in which you’re interested.
To our Donors:
It’s difficult to compress in a short letter everything we are able to do because of your support and how grateful we are for that support.   The over $2 million invested in research grants, the aggressive and productive advocacy work in Washington D.C. to protect our patients’ rights and to advance federal attention to PF,  the ongoing effort to engage the press in helping tell the world about the threat of PF, the partnerships with key organizations that can make a difference in a rare disease such as the American Thoracic Society, the National Institutes of Health and key PF centers around the country, and the building of programs like the Daughters of PF to help generate unified efforts to fight this disease, are all possible because of our donors.  Nothing we do is possible without those who care enough to make this battle possible.  

To our Volunteers and all other Activists: 
We offer our humble gratitude for your contribution to this fight, whether you are
an advocate for change, a caregiver, a volunteer, or in any other way help to
advance this work.  The wonderful events around the country that build awareness and funding are all due to those who take the time to help make a difference.  There is no progress, no hope, and no real investment in the future without all of you who add to the impact of the work we do!

There is still a lot of misunderstanding about who gets Pulmonary Fibrosis.  There are
millions of people who don’t know what the words mean, and many who think there
must be “some reason” that you get PF, having to do with bad health habits, such as smoking.  Though some toxins can generate PF, the vast majority of people have yet to fully grasp that PF can strike completely randomly, and that there is actually no known cause. 
Just ask Heather S., who was blindsided by the diagnosis in her 30’s;
Or ask Elliott W., who was utterly shocked by his diagnosis in his 60’s, after having lived a very healthy lifestyle;
Or ask Heather D., who has struggled with PF since her fifties, and had a difficult and long wait for Medicare even though she was unable to work;
Or ask Olene W., who has always had extraordinary stamina and been very active, but whose life was suddenly changed when she was diagnosed with PF;
Or just ask Kitty L., a healthy and phenomenally active woman who has been a
lifelong tennis player and was struck with PF last year.
We know, very clearly, why this work is so important.  It is because every patient with this diagnosis is facing a terrible truth, and they deserve the best support possible along with a truly passionate effort to build a crescendo of voices demanding progress in research.    
DON’T FORGET – PF AWARENESS month is coming!  We’ll be asking you to contact your legislators to support our Congressional bill.
If you can contribute to support the fight for research, please do so.  Every dollar counts!
Your gift at this time will support our September PF month

Friday, September 21, 2012

Beethoven and Other Friends

Boy, am I rusty. Wednesday night’s first orchestra rehearsal was rough! By the end of the evening, I was sweaty, my fingers were beginning to work and my brain was fried. It felt fantastic!

My string bass is large and heavy. I have been hauling it in from the parking lots and, especially at the concert venues; I would be short of breath from carrying it. But this summer, I finally bought a wheel that slips into the peg hole at the bottom of the bass. I used it for the first time last night. It was magic. No shortness of breath. It will allow me to play longer the more ill I become.

I also got some new strings. They don’t have as loud of a sound coming from them. I usually played with the heavy gauge strings and I bought ones with a slightly lighter gauge this time. It is so much easier on my hands but I am going to have to get used to the different, lighter sound.

So, we read through Beethoven’s Fifth Symphony. Yes, the really famous theme – Da-da-da-DAAAAAAA. I had not played it in probably twenty years. When I was given the music last night, I was shocked to see my own pencil notations on the music! Funny.

The first famous movement is lovely and simple and dramatic. I had remembered that one of the movements was miserably difficult. I began the second movement with a bit of fear but it was the scherzo – the dance movement. It was fun but it has ten measures at C that are going to be a challenge.

Then, the third movement. Within seconds, it all came back to me. This was the movement. This was the movement to fear. The Allegro. It is going to take a lot of work.

The final movement ends with Presto. That means so go faster than you can possibly play, or at least that’s what it feels like.

But, it is Beethoven. I love playing Beethoven except for the Lenore Overture. Overture No. 3. I have very bad memories about that music.

Also over twenty years ago, I played it under the current conductor. It is not easy. It is, after all, Beethoven. It also ends with Presto. We rehearsed it. We were ready for the concert. All was well except the conductor that night decided to conduct it twice as fast as we had ever rehearsed it. It was a brutal, bloody mess. I never wanted to play it again.

Well, it also is on the current schedule to be performed this concert. We have not read through it yet but we’ll see how it goes.

The other piece for the concert will be Edward Elgar’s Concerto in E minor for violoncello and orchestra.

It is going to be a long, heavy, thrilling concert. It is going to take a lot of work but it should be very satisfying to perform.

Thursday, September 20, 2012

American Thoracic Society's Webinar on Fibrosis

I received the attached e-mail yesterday from the Coalition for Pulmonary Fibrosis regarding their Webinar next week. These are always so interesting and well worth your time. I have a met a few of these outstanding doctors who will be discussing the latest research on fibrosis. The information to join the Webinar is below.

The Coalition for Pulmonary Fibrosis (CPF) is pleased to invite you to a free webinar on September 26th entitled The Future of Pulmonary Fibrosis Research: Fibrosis Across Organs. Reserve your Webinar space now at:  (note: do not reply to this email to register - click on the link provided).  

It is part of PF Week at the ATS (Sept. 23-29) - and also in tandem with National PF Awareness Month happening the entire month of September.  This patient-education web event is presented by the American Thoracic Society (ATS) in partnership with the CPF and features Dr. James Kiley and Dr. Jerry Eu from the National Institutes of Health's National Heart, Lung and Blood Institute.  Dr. Kiley is the director of the Lung Division and Dr. Eu is in charge of PF-specific research within the Lung Division. It will also feature PF expert physician and researcher, Dr. Greg Cosgrove, a pulmonologist at National Jewish Health in Denver.

You'll want to invite your family, friends and caregiver(s) to join this free event, too!
What?  Join us for a Webinar on September 26
The Future of Pulmonary Fibrosis Research: Fibrosis Across Organs
 Wednesday, September 26, 2012
 2:00 PM - 3:00 PM EDT

Space is limited.
Reserve your Webinar space now at:
System Requirements
PC-based attendees
Required: Windows® 7, Vista, XP or 2003 Server
Mac®-based attendees
Required: Mac OS® X 10.5 or newer
Mobile attendees
Required: iPhone®, iPad®, Android™ phone or Android tablet
After registering you will receive a confirmation email containing information about joining the Webinar.
See below for information on registering for the webinar.
Here is the URL to register for the event:
Important information for attendees:
Once you register, you will get automated emailed information on how to join the webinar. For your reference, see details below.
1.      After registering, each attendee will get a web link to use to access the webinar the day of. Each link is unique to individual registrants and should not be shared.
2.      Attendees will automatically connected with the Voice-over-Internet-Protocol (VoIP), which simply means you will be able to hear the talk and speak (if you have computer microphones and headsets) through your computers speakers.
3.      All attendees will have a second option to listen, which is the old fashion “dial in to a toll free number on your telephone” way. This dial in information will also be on the confirmation email sent to you when you signed up. 
4.      Once logged in on the day of, attendees will see a screen showing the  PowerPoint presentation, i.e. they will be seeing the ATS desktop.
5.      After the presentation portion, webinar attendees may ask questions in two ways:
a.      By clicking the little “raise hand” icon and wait to be acknowledged by the Admin for the webinar
b.      By clicking the “question” icon and typing a message into the chat box that pops up. The message goes to the Admin who will relay the question to the presenter(s).
6.      The entire presentation will be recorded and made available on the ATS website within about a week of the event at 

Wednesday, September 19, 2012

Cleaning Mode

Five hours yesterday. It began with the goal of removing some plates from the top of the new microwave and finding room for proper storage into a cabinet below. I removed everything from the cabinet, cleaned it then re-organized the plates, both large and small. Done. From there, I eyed the pan cabinet. Emptied it, cleaned it then re-organized the variety of cooking pans. All other baking pans went into storage in the back of another cabinet. All this took hours. Finally, I was drawn to a cabinet in the hallway where my platters, large bowls and all holiday decorations live. It was a total and complete mess. Three large shelves of madness. Everything was removed and cleaned and re-organized. I tossed a lot of just old stuff. After all this cleaning and organizing, I wiped down the floors and vacuumed the rugs to pick up all the mess from cleaning.

After five hours, I was finished. It felt fantastic. Michael arrived home and I gave him a tour. He was so impressed. Following right behind him was a friend who came to removed the old appliances from our garage. They are now gone forever!

After dinner, we took a walk along the coastal trail, only this time we walked south from Monday's walk. It felt fantastic. It was cooler and there were stronger winds than on Monday so it took a bit more effort to walk. Tonight, I will try to remember to take some photos. The vistas are stunning.

A visit to the other rehab is going to happen this morning followed by a visit with my lovely butchers and Trader Joe's. My first orchestra rehearsal is tonight. After putting new strings on my string bass, I want to tune it throughout the day to be sure they are stable and don't slip. It takes a bit of time to settle them in. I used to hate to sight read new music but, as I gained confidence through the years, it really is my favorite part of working with an orchestra. During the first run through, the challenging spots are reveled. Just plain fun.

Tuesday, September 18, 2012

Lost and Found

It has become a joke between us. Going to one of the satellite campuses of mom's university hospital has been a challenge. I got lost three times yesterday! It should be simple. Freeway south. Exit. Turn into driveway. We had one hour before the appointment. It is was just 10 minutes away...

First, I took the wrong exit. Returned back to the freeway heading south.
Second, we decided to get lunch at an In-and-Out Burger. I thought it was the next exit south. Wrong exit. Returned to freeway heading north.
Third, decided to take hospital exit and get lunch at the small airport at the end of the road. Turned wrong direction after exiting. Found the right road, had a marvelous lunch and made the appointments on time.

We should NOT be allowed out in the world without handlers!

All this happened after we hit Orchard Supply and Best Buy. I bought our new microwave. Mom had done advance scouting on the weekend and found the perfect one. During a moment of brilliance, I questioned why we were thinking of buying a stainless one when it will be sitting on the counter surrounded by black granite. So, mom found a 1200 watt black one that disappears into the granite. It was $134.00 on Sunday when she found it. It was $109.00 yesterday. It was meant to be!

We did go for our walk after dinner last night. We drove to Wayne and Jill's near the beach, parked the car then walked north to Surfer's Beach. Three miles. It was a great walk along the cliff's with hardly a breeze with beautiful vistas of the harbor and the coastal hills. We were walking so fast that I needed to kick up my oxygen to 6 liters! The bad news: just before the walk while getting into the car, I twisted my right ankle. Duh! It was tender afterwards, I iced it down last night but it is really tender this morning. And my one bunion hurts. NUTS! So, I will ice it today and we will try to walk again tonight. It felt so great to be out and moving. It felt great to hold hands and chat while we walked.

Betty and I had been texting during the day. She was feeling too weak for a phone call and sounded down. Her brother-in-law suddenly died of a heart attack at the age of 66 a few days ago and Betty had been responsible as her other sister's driver and support through her current chemo treatments. She feels she has let everyone down. She can't get to the funeral in Montana to give her support to her one sister who had planned to drive to New Mexico to help with the other sister's treatments while Betty recovered. She feels badly that Chip has been taking care of everything including her. I told her to try and not feel that way but...I also told her I was so impressed with burst appendix, not just the normal appendix surgery. She replied that she does everything big! We wrote back and forth and I think I left her feeling better. I told her to phone me in a few days when she feels up to it. The baklava will arrive on Thursday so that should lift their spirits!

Monday, September 17, 2012

Baking and Eating and Walking

Success! The first attempt baking with the new oven worked really well! I made two plates of baklava and leftover phyllo with a bit of sugar and cinnamon for fun. A smaller pan of this goodness will be sent to William and Kimberly this morning while another will be sent to Betty and Chip in celebration of her being released from the hospital yesterday. Michael had to taste a piece from each pan last evening. They passed his test!

I also made the stuffed zucchini for dinner last night. It, too, turned out well. I am gaining confidence dealing with my new convection oven.

It was a warm, gorgeous day yesterday with some high clouds to keep the temperatures in the 60s. We put the top down on the car, drove over the pass and down the Peninsula to a liquor store for Michael. He was in search of an award winning unique cognac made in Ukiah by Germain-Robin called Old Havana. We couldn't find it anywhere. So, we went to an Il Fornaio in a beautiful hotel in Palo Alto and had brunch. Well, appetizers and salad and iced tea. Specifically, their Antipasto was above the norm and we split a hot spinach and other greens salad topped with grilled scallops, shrimp and calamari. It was so delicious we moaned.

We also were talking with the manager who mentioned a local winery. I paused. I then said I couldn't remember someone's name. It came to me but how do I bring it up gently? He was a man who managed the winery who was in a horrible bicycle accident. He was going very fast downhill and went around a parked truck. What he didn't realize is that the truck was parked on a slight curve, he went around it and hit the curb. He entire face and a number of other bones was shattered. He had no jaw. He had no nose or teeth. His cheek bones were shattered. He spent months in hospitals and rehab centers. He was in horrible pain. I met him years ago at the school where I got sick. He was a great guy married to the Pre-K teacher who had taught there for over 30 years. She was devastated. About six years after the accident, he committed suicide. He lived daily with an extraordinary amount of pain. So, when the manager passed by our table again, Michael told him that I remember a name of a person connected to the winery. The manager paused. I told him how I knew him and we talked about the man and beautiful service at the winery in his memory. The manager knew him well.

It seems so petty to complain after the above story but I am just not sleeping again. I know it is the prednisone but I have been awake since 2AM and I have a busy day ahead. Mom and I will once again search for a microwave, have a bit of lunch then she has an eye test followed by an appointment with the doctor this afternoon. We will be there a few hours and won't be home until rush hour traffic. Thankfully, dinner is already cooked and ready!

I have two goals this week. I am going to work out at the other rehab each day while waiting for approval to go back to the rehab class. Also, Michael and I are committed to walking after dinner each day this week. We'll start off slowly and see how we do. Additional exercise. Much needed additional exercise.

Sunday, September 16, 2012

Cleaning, Organizing and Breathing

It was a day of organizing and cleaning. House and garden. It began with paperwork for the appliance rebates and continued to medical test paperwork. I read the entire book about how to clean and cook with the new oven/stove. The test will be today when I use the convection oven to bake the baklava for William and I decided to send an additional package of the gooey good stuff to my brother. For dinner, I'll try cooking the stuffed zucchini. We'll see how I do...still a bit nervous.

I hit the gardens after lunch beginning with a quick cut, blow and watering in the front before getting serious in the back yard. The huge Burmese Trumpet Vine needed massive trimming and I filled two huge buckets for disposal in the garden bin. After filling the bucket two more times with other trimmings, I cleaned it all up then watered everything really well. While working in the garden, I also had the dishwasher going and loads of laundry, which I folded and transferred loads between trips of dumping the garden waste.

Then, I noticed the windows. Then, I washed all the windows, which is a big deal. The entire back of the house are windows and glass doors.

Several hours later, I was finished but I noticed that I wasn't totally exhausted. I was wearing my oxygen backpack while working, along with a mask, and felt pretty good afterwards. I also noticed that my face is really exploding in roundness from the huge prednisone dosage and my waist feels like it is exploding, too! I need to get back to rehab. The orders for the CT Scan are near the phone so the appointment can be made first thing in the morning.

My brother phoned to let us know that Betty was having a CT Scan yesterday to determine if she is well enough to be released from the hospital, a week after surgery for burst appendix. Last evening, they were still waiting to hear from the doctor. Nothing moves slower than medicine and law.

Saturday, September 15, 2012

First Meal, Menus and Microwave

Our first meal on the new stove happened last night! Michael did the final gas hook up while I marinated the meat and vegetables for Fajitas. I used the extra hot wok burner, which browned the meat in just minutes then the peppers and onions were added and were also beautifully cooked. Tomorrow, I am going to bake two pans of baklava for William and a friend of Michael's. It will be a challenge to learn how to bake with a convection oven.

Menus for the Fajitas and the two other recipes for this week are:

Fajitas -

Caribbean Chicken -

Stuffed Large Zucchini (Thanks to Ron's garden next door!) -

The workout at the other rehab was a challenge yesterday. Even my friend Kent noticed that I struggling. The saturation levels were good but, I am out of shape! Maybe it was partially due to the lack of sleep because I struggled the entire day.

After the workout, Mom and I went to the florist where we were given roses while she ordered flowers to be sent to Betty. She was then enthralled with the restaurant supply place where we bought my wok and tools. Everything is so less expensive compared to a department store. We wandered through the store just looking at all the commercial grade stuff. We then continued to drive south to the appliance store. Our search? A microwave. Nothing. We were looking for 1,200 wattage stainless small microwave. After a lunch at of three fish taco's for mom and an appetizer of shrimp and steak for me at Max's Cafe in Redwood City,   we continued our search for a microwave.

We drove to the other end of the county to JC Penney's and Sears in our quest. Nothing. Penney's had one microwave. One. Sears had many but they were huge and just not right. We did find one but they didn't have any in stock. After telling Michael about our struggles, we decided to look for just a plain black one as that might be easier to find.

The weather is going to be sunny in the mid-60s today and my garden is calling to me. I plan to spend most of the day hand trimming bushes and just tending it. It calms my soul. I also need to season the new wok, defrost the phyllo dough for tomorrow's baking day and fill out all the appliance rebate forms to get them ready for the mail on Monday. A busy day.

Rumor has it that if the weather is as lovely on Sunday, the convertible top may have to come down on the car and we just might to have a bit of a drive in the hills or along the coast. That would be nice.

Friday, September 14, 2012

Life, Death and Appliances

I realized yesterday that I am breathing better. I just began another reduction of the prednisone dose to 30mgs. as I continue the march back towards my former level of 17.5mgs.  It will take over another month to get there. I am planning to phone to schedule a CT Scan for next week then get permission from Dr. K. to return to rehab.

I spoke with both Sherman and Dick, my rehab boys. Sherman has also been struggling with bronchitis for the past two weeks. As he is 87-years old, I was worrying that he might never fully recover but he sounded terrific. He is feeling improvement and is looking forward to returning to rehab, possibly next week. Dick's wife did have her hip replacement a week ago and is in a rehab facility doing well. She is now walking and has no pain. He is so happy. So, I would suspect that within a week or so, the three of us will be back in the rehab class together. It must be awfully quiet there without us!

Yesterday, the electricians worked on the new stove/oven issues, Wayne arrived last evening to help with the installation but it is still not finished! Michael needs to tighten the gas connection - didn't have the right tool - and he also needs to install a stainless panel. When it is all finished, I will post photos, which will explain it all. We have a galley kitchen and we can't believe how the stainless appliances make the area appear so much larger than it looked with the old white ones. So, all fresh food is in the new refrig waiting to be cooked on the new stove or oven but it is going to have to wait until the weekend! Now the other problem is the dishwasher. We thought we could just buy stainless front panels, we looked it up online last night and they cost over $600.00 with shipping. Crazy. Might as well buy a new one!

This morning, I am going to the other rehab for a light workout to judge how I am breathing and to check my saturation levels. Afterwards, mom and I have plans. I am introducing my mom to the most amazing florist so she can send some flowers to Betty. My new stove/oven has a wok feature so we are going to a restaurant supply store to buy one along with the cooking tools then we are planning to return to where we bought the appliances to buy a small stainless counter microwave. Should be fun!

Betty has shown a sign towards improvement yesterday. Her bowels are beginning to make noises and she suddenly got hungry, a good sign. She was able to keep a grilled cheese sandwich down and that has been the first food in over a week. She is now in the dangerous period for infection and since she is allergic to most antibiotics, we are all just praying she is able to avoid any problems. Fingers crossed.

And finally, Michael's mom phoned to let us know that her old friend of 60-years had died suddenly. Eleanor and Dick scandalously lived together in the 1960s and married just before Dick died many years ago. As they had kept their monies separated through their relationship, she suddenly inherited Dick's money. It was a lot of money including income property and she kind of when crazy with the power of it all. She turned into a real jerk. Mary put up with it for years but the past few years, she refused to have anything to do with her. She was just plain abusive. But, she and Mary had been communicating for about a year and had really reconciled. Just a week ago, Eleanor and her granddaughter drove from Palm Springs to Las Vegas to visit Mary. They had a wonderful day together. A week later, she was discovered in her bed, having died of a heart attack. There is a lesson somewhere there for all of us. 

Thursday, September 13, 2012


I am stumbling around in a bit of a daze at the moment after sleeping just over 12 hours last night! I feel a bit goofy! Mom and I drove back to her hometown 100 miles away then north another thirty minutes to visit my dad. She likes to change the flowers on the crypt and to clean the name plate. She also gave the marble a quick kiss goodbye. We then drive to another area of the cemetery to clean a bronze plate she had made in memory of her brother, who died in Germany in WWII. More cleaning.

We drove back to her old area to visit her friend Ellie. She and mom just hugged and hugged and it was so clear that they both deeply missed each other. I kept quiet while they talked. Mom also shared the photos from Shelley's wedding with her. It was a quick hour before we had to leave to meet six other dear friends for lunch.

What a lunch. One of the problems with eating my diet is Chinese food. The other is Italian food! We met at a lovely Chinese restaurant with gorgeous Chinese watercolors on the walls and a classical piano CD playing softly in the background. The portions are nice and small and there is very little oil used. The entire group has been eating there every week for years. The owner just asks what they all wish and makes it. No menus. It was absolutely delicious. 

 It was a quick 100 mile drive home. No drama though I did arrive home with a hoarse voice! Mom and I talked the entire day! There was never a moment of silence.

The appliance drama continues. The electricians are here as I write but we still need Wayne to bring some kind of coupling so we can connect the gas for the oven tonight. The possibility of homemade food is in our near future.

Wednesday, September 12, 2012

Cleaning and Questioning

It was a busy day yesterday. I reorganized the kitchen, threw a ton of old stuff in the trash or recycle bins, cleaned the old refrigerator which is now in the garage and just worked most of the day. The sun showed itself for a bit so I grabbed a book, a bottle of water and sat in the garden for an hour.

I am convinced that while waiting to be born in heaven, God gathers all the males together and gives them information. That can be the only explanation of why, since I have known him, Michael is able to just KNOW stuff. I am often stunned. "How do you know that?" I ask while he just shrugs. He did it again last night. While listening to the Giant's game, he installed the new range hood. It was a lot of work. He never looked at the enclosed pamphlet with all the little drawing and tons of warnings. After just more than an hour, it was finished. Perfect. How did he know how to do it all? I still don't know.

The electrician is coming at 8AM on Thursday to change out the wall plug so Michael can install the new stove/oven that evening. I can actually buy real non-microwave food on Friday! I also promised William that I would send him plate of baklava from the new oven. That will happen before the weekend!

Today, I am going to take mom to the cemetery to visit dad then to lunch with a group of her old girlfriends. They miss her a lot and it is good for her to see them again. It is a full day of driving so I had to cancel the first orchestra rehearsal tonight. I will be too exhausted.

Busy day ahead.

Tuesday, September 11, 2012

Betty Update and Other Stuff

Rehab yesterday - amazing. On 2 liters of supplemental oxygen, I was steady on the treadmill at 98% saturation levels. Last time I tested these levels before our trip, it was in the 91-92 range. So, something is healing. Thursday, I will reduce my prednisone dosage to 30 mgs, down from the current 35 mgs. I also will be phoning to make an appointment for a CT Scan this week then the results from that will determined if I can return to rehab.

We just spoke with Betty and she sounded horrible. Her throat was raw and her voice was very raspy. The scary news is that she is on 5 liters of oxygen just sitting in bed. As a decades long smoker, I fear that a lung disease is reveling itself. The good news is that her son Jesse is there in support of my brother, who is an emotional mess. He is also there to help his aunt with her chemo appointments.

At the end of the conversation, I mentioned to Betty that mom had one of the Mexican candles lit when I visited her yesterday. We both laughed as it is so out of character for mom - a lit candle! Ever! Left to burn 24/7! She was touched. As we said our goodbyes, I told her we loved her so much and she started to cry.

We are still waiting to hear from the electrician so we can install the new oven/stove. Microwaved food is in our near future for a few days.

Today, I am going to rearrange all the cabinets in the kitchen. Tomorrow, I will be leaving at dawn to drive mom out to the valley for a visit with my dad at the cemetery, a visit with one friend, picking up another friend then meeting several of her oldest friends for lunch. It will be an emotional day for her.

Monday, September 10, 2012

A Sunday and Peeking into Monday

I am finally seeing mom this morning. I haven't been with her since the end of August. Seriously, it is going to be non-stop talking! Also, I am going to sneak into the other rehab to see how my saturation levels are doing. Dr. K. ordered a CT Scan for this week so I will not be returning to the rehab class until that test is reviewed. I guess I am feeling that I am home from vacation and back to the work of everyday life. That is not a bad thing!

We tried to hook up the new stove/oven and discovered that the wall plug was 110 voltage instead of 220. It was set up for 220 at one time but was switched to 110 for some reason. So, the call goes out to the electrician today and maybe we will have some homemade food before the end of the week! Tomorrow, I begin the reorganization of all the cabinets in the kitchen. We lost some storage space between the cabinets and the refrigerator and everything just needs to be clean and sorted. Michael is going to buy a new range hood this afternoon so the electrician can also hook it up.

Yesterday, Betty was more aware but still highly drugged so she was feeling pretty good. Her son was on his way to help Chip. Betty has been driving her sister the 60 miles into Albuquerque five days a week for chemo therapy. Hopefully, Jesse will step in and take care of his aunt.  He is a really good guy who adores his mom and Chip and I feel so much better having him with there.

We had such a nice time with British Don yesterday. With the top down on the car, we drove through the city then down along the Marina with its world famous views. The weather was warm but not hot so it was perfect convertible weather! Michael even got a bit red! We discovered that his famous friend, who is the executive chef, was not on site. It was a beautiful restaurant on a gorgeous site where we sat outside overlooking amazing views among the new Lucas Arts Center. But, it was rather a fiasco. Everything went wrong. After ordering and leaving fresh cocktails on the table, we left the table with the waitress to look at the inside of the restaurant. Well, the table bussers thought we had walked out. We returned to a totally cleaned table. What no one realized is that they also cancelled our lunch order with the kitchen. Finally, after an hour, they brought out free food and our order finally arrived ninety minutes after we were seated. And it went downhill from there. The good news is the food was fantastic. Throughout lunch, we just kept our humor, had a nice time with the waitress but I think the chef will hear from Don. He was not amused.

So, into Monday I jump. Gently, I hope! Rehab, mom, electrician, dinner out somewhere....Another good day of living well with a bad diagnosis.

Sunday, September 9, 2012


Betty is recovering from her appendix surgery in the hospital. The surgeon said it probably burst on Thursday or early Friday making a huge mess and that she is one strong woman. That we all knew! I spoke with Chip last evening after he was home and headed for his own bed for the first time since Friday morning. He was totally exhausted.

She will stay in the hospital for at least another day then home. The dangerous period for infection is 5-7 days after surgery. As she is allergic to most antibiotics, this time is going to be scary. The doctor told Chip that if she gets an infection, she will go back to surgery to clean it all out again. The week-long Mexican candles are lit throughout the family at his request.

Yesterday morning, our new appliances were delivered. We installed the new refrigerator late yesterday afternoon. It is a counter depth, very tall and a heavy stainless monster. What a pain to unwrap; lots of tape and packaging and huge bolts attaching it to the pallet. It took so much time just to get it to a point of plugging it in! Finally, we waited for it to cool down enough to transfer food. Well past dinner, the transfer was made, the old refrigerator removed and both of us feel pulled muscles in our necks and backs this morning. But, it is not over. The new stove/oven will be installed today, hopefully. We didn't realize we needed a few things before it can be installed and we have a last minute lunch date. I so want to be able to use an oven again since it has been broken over three weeks.

Our date? Don. British Don. We are going to here  for brunch at noon to celebrate Michael's birthday. We met Don and his former wife when they moved into our neighborhood in the 80s. Their daughter was William's age and they played well together. They were three-years old. Through the years, we have stayed in touch and he and Michael have become very best friends. When visiting William in Seattle, he mentioned that he invited Don's daughter to the concert in Nashville where she lives and they had a ball with her. She brought her boyfriend with her and hung out with the entire band afterwards. William said everyone loved her so much that they all stayed out a lot later than prudent. Not normal.

Don is having breathing issues and one doctor commented after a test, "You have a restrictive lung disease." No referral to a pulmonologist. No other tests. Nothing. I coached him into the system at my university hospital and he has an appointment in October. I am going with him.

With all yesterday's drama, I did take some time to work in the gardens and got everything watered. I went to bed early and exhausted.

Saturday, September 8, 2012

Prayers Needed, Please

I am waiting for our new refrigerator and stove/oven to be delivered sometime between 9-1 today. We have been without an oven for over three weeks after our 18-year old one finally just stopped. It was time. We still need a new microwave and stainless steel covers for the dishwasher so all the appliances will match. Oh, and a new oven hood. Ouch.

It has been a slow re-entry into life since the trip. It really took a bit out of me. Natalie and the kids came for a visit yesterday and that was about all I could handle. I slept like a baby last night.

This morning, I awakened to an alarming e-mail from my brother, Chip. I phoned right away. His wife Betty had been in pain, he took her to the local hospital where the only doctor on call was a true quack. I could give horrible examples, but I won't. She refused to let this doctor touch her. Betty tried to talk Chip into just going home but he was driving. They headed the 60 miles north to Albuquerque while she writhed in pain. On a scale from 1-10, she said it was an eleven.

After three hours in the ER waiting room, they finally got into a room where the pain increased. Everyone thought it was kidney stones. Her appendix actually burst in ER. He thought she was probably in surgery while I was talking with him. He was heading back to the hospital after a quick run home to get the phone chargers and to feed the animals, no sleep, no food and terrified. He was so concerned as she has a hard time coming out of anesthesia. Very scary.

My brother is a scientist. He earned and EE and also a PhD in Atmospheric Physics. Factual. Scientific mind. He asked me to pray for Betty. He had already lit two of the Mexican week-long candles. His favorite is of Mary of Guadalupe. I love that he believes in the power of prayer.

Their 25th anniversary is later this month and I so hope they are able to go on their planed trip.