Living Well with a Bad Diagnosis - Lung Disease

Monday, February 29, 2016


Happy Leap Day! I was always so relieved as a child that I didn't have a leap year birthday. No birthday cake? Now, I think it would be kind of cool to only have a birthday every four years!

I was dead all day yesterday. One night out playing music and it took an entire day to recover. After a long nap, I did make some shrimp stuffed eggs for several days of Michael's breakfasts, cooked some artichokes and helped him make dinner. Then, I cleaned the kitchen while keeping an ear on the Oscars. Finally, I fell into bed and slept the entire night. Exhausted.

This morning, I feel great so far! Mom has a dentist appointment at noon in town so there will be a few trips over the pass. That, in a nut shell, will be my day today.

Here we go into March. We are still in a drought and the rain has subsided through February. The forecast for the week is for a small storm to blow through but next week, it looks like the storm door will be opened again. Bring it on! We need it so much!

Sunday, February 28, 2016

"The Red-Haired Boy"

What a day. I didn't know I still had it in me! It began with several hours cutting the grass and working the gardens. They look clean and trimmed and happy. I even watered all the pots. Afterwards, I drifted off for almost two hours. I would need it.

We wandered next door to Leslie and Joe's house at 5:30. The Irish fiddlers band was due to rehearse before everyone arrived at 6:00 to await the arrival of Joe for a surprise 50th birthday party. Well, we arrived. Leslie's sister and brother-in-law were there. The time ticked away. No band. No Joe.

Apparently, Joe's ex-wife decided their son needed Joe to take them to the emergency room because he had taken some medication and his lip swelled. He is 17-years old. After a lot of tests that determined nothing was wrong and after saying no to the ex-wife's request for them to eat dinner together, he finally got home to the party at 9:00. It really was a surprise.

He loves Irish music like the title of this blog. He loves that his wife took lessons in Ireland to play Irish fiddle music. He loves the group she put together but he was stunned to see and hear my bass. Happy birthday! I must say it made a huge difference to the music. It was fun to play, I was sight-reading, it was not difficult but there was so much more I could do with the music if I had more time. Now, they are begging me to play with them. The next big concert is St. Patrick's Day. Of course. I also heard Michael mention that he used to play guitar and they invited him to join them as well. My goose is cooked.

After we got home, my plucking hand was not used to hours of plucking, I had developed a blister and my hand kept spasming. My toes joined them in a spasm protesting standing for hours in heals. Then, I realized that I hadn't had any dinner but it was late so I went to bed. When I don't eat enough calories in a day, I can't get warm at night. I had four huge blankets piled high and yet I still was shaking. Finally, about 3AM, I settled down and was able to sleep. I am whipped this morning.

I think I have to run over the pass to pick Michael up later this morning. I hope to be awake enough to get there!

Saturday, February 27, 2016


We have a great group of neighbors. Ron and Susan next door live next to Joe and Leslie. Joe held Michael while he was having convulsions in our driveway almost two years ago. Leslie and I play in the local orchestra but for a couple of years, Joe has been begging me to play my string bass with her Irish fiddling group. It would mean another evening of rehearsals and then performances, especially on the weekends. I am just not in the best of health for an additional commitment, which he does not seem to understand as I look good and he sees me working in the gardens.

This evening, Leslie is throwing Joe a surprise 50th birthday party. Being from Ireland, he loves beer, though not Guinness! He is a pilsner man. Michael is going to take time to find a unique beer as a present and I am going to play with the group as my present to him.

He is going to flip.

Now the hard part, I will be playing in front of a small audience (so much harder than a larger audience) with no rehearsal and no music. The challenge will be to make sure the guitarist is seated at an angle where I can read the guitar chords as he plays them. Scary.

In high school, I played with a banjo player and a guitarist in a bluegrass group. Foggy Mountain Breakdown! It was the most boring music to play on the bass. The music I will be playing tonight reminds me so much of those days. It is not difficult. It is just the matter of hitting the tonic notes (the lowest note of a chord) and to end well. Everyone likes the solo last low note, which rings after everyone else silences their instruments. Wish me luck, I'm going to need it!

Friday, February 26, 2016

Easy Day

My numbers were good in the rehab class. Saturation levels were in line and I did not cough very much. Sherman looked great and Richard returned after being absent for five weeks. He is a pilot who is having so eye issues and wanted to take one final trip in his plane. It was rather shocking yesterday when he told us his plane could seat 22 people! That's some plane! He flew to Florida and back with his non-pilot son. It was so good to see him. We thought he was having health issues not out having a good time!

I had a long chat with a 68-year old who received new lungs just months ago. He was only in the hospital for eleven days and has had no setbacks. He told me that they are now doing double lungs to everyone, not just people under 60-years old. That was hardening for me to hear. Double lungs have a much better long-term outcome. He told me he set some goals for himself. Days after the surgery, he would push himself to walk a bit further everyday. He is counting the days before he is allowed to travel. His story is very heartening to me. It gives me hope.

It was a beautiful day with lots of sunshine and highs in the 70s. The drive home, with the windows down and music on the radio, was just beautiful. I suddenly lost 30 years!

Then, the phone calls began. Christien phoned from So. Carolina and we had a nice chat. While on the phone, Michael's sister Anna phoned via cell phone. They talked a bit and I returned her call. Then, his mom phoned later in the evening. Somehow, I carved out the time to pull together a fantastic dinner of lamb kabobs from the La Tortilla web site HERE.

It is going to be a high of 68 today while I am spending the day with mom. Nothing is planned. Nothing is on the calendar. I may even haul out my white jeans a few weeks early even though a bit of rain is expected sometime today. A very little rain!

Thursday, February 25, 2016

Which of the Two New Drugs Would I Choose?

We were back by noon. The tax appointment was as delightful as it was with mom earlier in the week, we ordered new sunglasses for Michael at Costco over the pass, the butcher was happy to see us and we did a quick dance through Trader Joe's. Did I mention an early lunch?

Michael has been struggling with allergies. He has been miserable. I forgot that we had some Flonase we bought for him a couple of months ago. Bingo. Cleared up within the hour. We both also took a nap before we headed to the city for the Board meeting at my university hospital.

It was fun to see everyone at the meeting, we started talking music and discovered that half of us were musicians! Love that! Also, one of our members had been going through a bone marrow transplant and, for the two years we have known him, he never looked better than last night. That was so great to see. It was a fun meeting. An interesting meeting. We drove home feeling like we contributed to the discussion.

Today, Sherman will be waiting for me at the rehab class. I am excited to see if I do as well today as I did on Tuesday. When we were walking back to the car last night, there was a slight uphill and I became short of breath. I have walked that same sidewalk and never was that short of breath before. Maybe we were walking too quickly. We'll see what my saturation numbers are today.

I have been asked which of the new anti-fibrotic drugs to treat IPF I would personally choose. One is Ofev and the other is Esbiet. I have been referring to them by their drug trial names: nintedanib and pirfenidone. The drugs have come to the public from two different pathways (drug joke). Ofev is an old cancer drug that was relabeled while Esbiet is a brand new drug. One took a few short years to get FDA approval while the other took over a decade and $100M. The old drug, Ofev, has been around, the researchers understand the pathways and how the drug works. Even after a decade, they do not understand exactly how Esbiet works only that it slows down the march of the disease and the loss of lung capacity. The story of who realized this old drug actually slowed down IPF and developed Ofev is HERE.

So, which would I personally choose? The old drug. We understand it. We know why it works. We know about any long-term issues with the drug. It's been around.

But, here is the BUT: If I was not getting the expected slowing of the disease after being on Ofev, I would switch to Esbiet.

Sadly, since I have HP, I am not allowed to take these new drugs until it is proven that they can also help my disease.

Wednesday, February 24, 2016

Good Numbers

I had a fantastic workout in the rehab class yesterday. My saturation numbers were better than my average, I felt very loose and was breathing well. What was most surprising was that I did not cough. At lunch yesterday, I took a sip of iced tea after having a bite of leftover tri tip wrapped in a low carb tortilla and it went into my lungs. I was coughing trying to get it up and then I vomited followed by clear mucus. I expected to have a difficult time in rehab after that but was so pleased that I did so well.

Both of my rehab boys looked so much better than last week. Their color was good. It was nice to spend some time with them.

Since Michael's retirement, Wednesdays have become our day together. My dance card is often filled with my mom and rehab classes and yard work, but Wednesdays have been our day to run errands, see people, have lunch or just hang out. Today, the fun begins in our tax appointment followed by a run over the pass to Costco to replace Michael's broken sunglasses then a quick stop at the butcher's and Trader Joes's. We will drive home, unpack and hang out for a bit. Mid-afternoon, we will drive into the city for the Board meeting at my university hospital. No time for orchestra rehearsal tonight!

I love these days. I love just hanging with Michael. I guess that is a good thing after being married over 42-years.

Tuesday, February 23, 2016

Feeling Stupid

We both felt a bit stupid yesterday. Mom and I went to her tax appointment with the new CPA here in town (Michael and I meet with them Wednesday) because of issues with our former CPA. Her bill had increased dramatically for several years to a point where mom was ready to leave her a year ago. With her trust and personal accounts, mom negotiated $200 off her bill so last year, she paid $1,700.00.

Mom was very impressed with the professionalism of the new CPA's office and the beauty of the building. We met Cindy, was escorted to a conference room where she went through the documents, asked a couple of questions then I asked, "Just ballpark, what will this cost?"

Cindy said it was a simple, straightforward return, which should not take a lot of time. The total should be between $450 and $500. There was silence in the room. I said, "If mom was standing near you, she would hug you right now."

Here is the feeling stupid part:  Why did we stay with the former CPA for decades?

After lunch, we went to Costco to order replacement sunglasses for her and a new pair of distance glasses for a grand total of $353.00. She said she felt that it was free money from the $1,200.00 she was saving with the new tax company. It was a good day for her.

I am feeling great, sleeping even better and came home yesterday to Michael, who had cut the grass and watered the pots. What a guy. What a gift. Better than flowers or diamonds!

Today, my rehab boys will be at class so we will have a good chat. I am interested in seeing my saturation rates and if my cough returns during the workout.

Monday, February 22, 2016

A Good Move Forward

I love and deeply respect my 82-year old mother-in-law. From the very beginning, our relationship was a friendship. We are close friends. We can talk about anything. I am often her sounding board and have never betrayed her trust. I can be honest with her because, after all, she is not my mom. She is my friend.

After Michael's youngest brother died a few years ago, Mary moved into a mobile home owned by her older sister and has been renting a bedroom. It has not been easy. It has become a very difficult situation. Recently, Michael's sister has been trying to find alternative housing for Mary in two counties but no one is accepting application. As of Friday, Mary decided to try to stay positive and try to live in the somewhat hostile situation.

The phone rang on Sunday. It was Mary. Her daughter Debbie in Tennessee had invited her to move there, rent a house together and live happily, ever after. Debbie is the person in the family who totally understands Mary emotionally and spiritually. Anna, her other daughter, is fantastic with the facts and her needs and the "blood and guts." Debbie is the soft place to fall.

Mary was conflicted. I asked her if she enjoyed the two weeks she stayed with Debbie, her daughter Valarie and her grandson Josh when she visited last year. She loved being there. I asked several more questions then the final one, "What is the negative? What is the downside?" With a pause, she replied, "I can't think of one." I laughed and said, "I think you just made a decision!" She said, "I guess I did!" And with that, she phoned Debbie right back to tell her she was moving!

The back story is that Valarie and her fantastic long-term boyfriend are moving in together, will include her 18-year old son Josh but the boyfriend was a bit nervous to also including a mother-in-law into the mix. At least he was honest! And really, he is a good guy. So, Debbie was going to be alone, knew her mom was having problems in her current situation and saw a solution for everyone. A win-win.

There are lots of details to figure out, which will probably be handled by Anna. I think we will all sleep a bit better each night knowing Mary is in a loving home with her daughter.

Sunday, February 21, 2016

List Completed

I did everything but the garden work yesterday! My list is completed. Done.

  • Taxes are now ready for Wednesday's meeting with the CPA.
  • I made out checks to pay some bills.
  • I cleaned out my closet and a bag of clothing to be donated is ready to be picked up on Wednesday.
  • I vacuumed.
  • I noticed that both vacuums needed to be torn apart and cleaned.
  • I re-organized my recipes and made out my list of food for the week.
  • I looked up low carb recipes and found about a dozen new ones to try.
  • I cleaned the stove top.
  • I phoned my mother-in-law.
  • I texted my sister and left a message for my brother-in-law to wish them a Happy Anniversary.
  • I texted my brother to congratulate him on his first day of freedom from his job. 

It felt marvelous to keep moving all day. Michael got home in the afternoon and took me out for a ride into town. Tourist traffic was not horrific and we got home to enjoyed a nice, simple dinner.

This morning, we are expecting a visit from a glass guy to replace a windshield on a car. So, we are up and dressed and together. He is due any minute. After he goes, we have the rest of the day together. The grass is now dry enough to cut so the gardens are calling to me. A nice day. We will see how it unfolds.

Saturday, February 20, 2016

Enjoying the Roaring Ocean

Mom and I ran from one event to the next before a quick lunch and a fast ride home. I made it! Michael also made it with 20-minutes to spare! We drove along the ocean through a light rain to our favorite place right on the ocean. The waves were huge as a storm was blowing through. Our car got wet from the waves and overspray in the parking lot. It was that close to the ocean. We met British Don in the large lounge near the bar. They feature a large dance floor and the live music was due a few hours later. The place was going to be packed. It always is on the weekend.

The owner was there. He surprised us with a beautiful platter of teriyaki sirloin strips, grilled calamari, hot goat cheese with olives and sun-dried tomatoes, six huge grilled prawns and eggplant fries to the table. We were able to spend some time together and get caught up. A couple of hours later, we were home, in our pajamas and ready for a good night's sleep.

Our appointment with the CPA is next week so I will be spending most of today doing the final paperwork in preparation for that event. This is the first meeting for our new tax company, which is here in town. We had been with another company over the pass for decades but the woman became outrageously expensive. She also did not know computers and never filed electronically. Lots of people were paid to complete the returns thus the higher costs. Mom was also done with her so she has an appointment with this new company on Monday morning.

When mom had her last eye surgery, the former tax woman showed up in the waiting room. She thought I was someone else, accused me sending her an email that she didn't like then realized who I was. At that point, she asked me about my mom, who was sitting next to me. I pointed, she was surprised and still didn't really recognize her. It was then that we realized that the medical issues she had been dealing with for the past couple of years had affected her memory and brain. Within a couple of months, we received a letter stating that she was having medical issues and that the business was being handled by a new person. Time for us to depart.

Friday, February 19, 2016

Weigh In

There was very light traffic while driving to the far end of the city yesterday morning. What a pleasure. I think everyone was on vacation for President's week. I arrived very early but saw Mr. B. and was in the car at my appointment time. Nice. It was also nice to have only gained 4 ounces. I was happy it was under a pound. It is already gone this morning. I can feel it.

Since I arrived so early, I walked to the Starbucks for an Americano. While ordering, this beautiful woman behind the counter asked if I wanted a pastry. Yes, of course I want one but..."I have an appointment with a nutritionist. I've lost 100 pounds." She smiled and said, "I lost 125 pounds." We gave each other a high five! She told me she will never gain it back as she now has the life she dreamed about.

I will never allow myself to gain it all back. I can feel when I gain a pound and am miserable. I hate the feeling.

A short nap did happen after I got home but Michael needed me to shuttle a car over the pass. We bought another auto so we can save the Porsche for weekend pleasure trips. The new (very used) car will also be perfect for road trips as it has a HUGE trunk!

Today is going to be wild. Mom has her shot in her eye to fight macular degeneration then we are running up to the northern end of the county to order a replacement of her sunglasses she lost last week. Costco. That should take some time and we will still need to find some lunch somewhere. The big push is because Michael and I are meeting British Don mid-afternoon north of us. I hope we make it on time! I am so looking forward to taking it easy this weekend!

Thursday, February 18, 2016


It is raining at the moment. There is even talk of some lightening, a rare event here in California. After an orchestra rehearsal running last night, I am tired this morning but there is no rest for the...weary! After a shower, I need to take the long drive deep into the city to meet with the nutritionist. I am just a bit worried after eating our way through Seattle a week ago but I do feel okay in my tightest clothing. It should be interesting.

With the rain and the drama of driving through rush hour traffic to get to the appointment, I have decided to come home afterwards. I want to nap. I want to rest. I am really tired.

Friday afternoon, we are meeting British Don at the restaurant right on the ocean in the town north of us. I haven't seen him since the computer incident though Michael has been meeting him for lunch almost once a week. He is doing so much better, exercising and trying to watch his diet.

We are also planning a quiet weekend. I need to gather my strength.

Today, William leaves for a tour through Hong Kong, Malaysia, Singapore, Australia and New Zealand. I am sure I am leaving some destination out. My sense of wanderlust kicks into high gear when I think of him off into the world. How I would love to see Singapore. We are always a bit on edge when he is out of the country and our hope is always for a safe trip.

Wednesday, February 17, 2016


Still down to one car between us, Michael dropped me off at a little coffee shop across the street from my pulmonary rehab class yesterday. I met my friend Lois, who had developed her photos from her annual trek to the Mozart Festival in Salzburg, Austria. It was a shock to see that her late January photos reveled NO SNOW. None. Spring temperature. Usually, she is knee-deep in snow as she walks between the three to four concert venues a day. Nothing. Zero. Flowers were in bloom. We sat together and enjoyed ourselves so much that I missed the beginning of my class.

I met Lois years ago when I began to work out at the other rehab. We chatted and have been friends ever since. She was a drug designer and worked for the company that developed how to break down DNA, often used in the legal system. One smart cookie.

Yesterday, she handed me a page she had ripped out of the March 13 Science Magazine and said, "There is your proof." It was a very short article on the RESEARCH page:

Exercising away the effects of lung injury

We all know that healthy people benefit from exercise but recent evidence suggests that it also helps the sickest patients in the ICU. Files, studied mice with acute lung injury to understand why exercise is beneficial and confirmed their findings in human respiratory failure patients receiving therapeutic exercise. Exercise prevented muscle wasting and limited the number of immune cells infiltrating the lung by decreasing levels of growth factor called G-CSF.

I always contended that daily exercise provided increase stamina and possibly a longer life but I could never prove that it actually helped the lungs. Now, there is proof.

Let me just say that a nice walk is not enough. I am talking a variety of exercises for at least an hour a day for as many days of the week as possible. Yoga, gyms, biking, hiking, gardening. From the time I got my bad diagnosis and learned about pulmonary rehab, I worked out six days a week for years and years. Later, I worked out eight times a week. I know that I would not be alive today if I had not been aggressive with my routines. 

Please, please seek out a pulmonary rehab program in your area. Please get off the couch and move. You will feel so much better and it will help your lungs and quality of life. I now have proof! 

Tuesday, February 16, 2016

Just a Passenger

We had such a nice holiday together after our week away but today feels like we are back to work. Back to life. Oh well, it was fun while it lasted! We are also still dealing with having only one car this week. Today will be dicey. Either I meet Lois for coffee and a run down of the January Mozart Festival in Salzburg before rehab class or not. I sent her an email last evening trying to arrange it for today but she misunderstood and thought I was arranging to meet tomorrow. Even if I don't hear from her, I am having Michael drop me off at the coffee shop anyway. It will be an interesting day.

I spent the day with mom yesterday. We talked for hours before lunch, talked through lunch and talked in the parked car on the way up to her apartment. We didn't notice that Michael had beaten us there and was watching and waiting for us from the balcony. He spent time with her before we had to drive the long way home. Holiday traffic to the coastside was bumper to bumper and apparently even worse later in the day.

We watched the entire Grammy show last night. I think that was a first for us. William's group did not win. Again. Most of the performance were...okay but the tribute to David Bowie was the best performance of the night. Lady Gaga is a true artist and she can sing.

My cough sounds like it is from the throat and not a deep cough from the lower lungs. Whatever was causing this last bout, it is fading. It will be interesting to see how my workout today will affect my coughing and saturation rates.

Monday, February 15, 2016


Stop the presses! After I wrote yesterday's morning blog, it took me awhile later in the day to realize that the cough had lessened. It had calmed down. Maybe it was the massive three-hour work fest in the front gardens on Saturday. Maybe I just needed to sweat after sitting in a car for 15 hours on Thursday. During rehab class on Tuesday, I am going to be interested to see if the cough returns and if my saturation numbers hold.

I actually felt pretty good all day yesterday.

So confusing!

It is going to be in the mid-70s today, my car is in the shop so Michael is going to drop me off at my mom's house for the day. We will fight holiday traffic coming home but I really need to spend some time with her.

Enjoy the holiday.

Sunday, February 14, 2016


My breathing has changed. My cough is different. I cough a lot. I cough for no reason.

Monday morning, I am going to send an email to Dr. K. regarding the cough, shortness of breath and the general changes. In the email will be a suggestion that it might be time to be evaluated by the lung transplant clinic.

Deep breath. Here we go.

If I begin the process, this year will be interesting and I will have lots of information to share. First hand experience of the whole process from soup to nuts. The good, the bad and, I am sure, the ugly.


Saturday, February 13, 2016

A Few Days Away

We're home! The road trip was stress free. Traveling this time of year was so different from our usual May road trips because the traffic was light in both directions. Even the weather cooperated. It was in the 60s in Seattle and rained just a bit one morning. The snow on Mt. Shasta was the most we had ever seen and Lake Shasta reservoir was half full, a miracle. We have been in such a drought, it had been down to almost a creek!

It was so good to see our son. We met a The Walrus and the Carpenter (HERE), a cool, small restaurant hidden down a long hallway. They featured fish. We noticed that the current food trend was small plates and large plates ordered for the table and arrived as they were ready. Nothing was held in the kitchen. We had eaten very little on the road so we were starved. Michael and William shared a variety of oysters before the small plates of fish arrived. Besides some sunchokes, we had fried oysters, grilled sardines, steamed clams, whole fried herring and octopus. All in delicious herbs and spices.

We talked and ate and got caught up. It was good to see him. To be with him. To let the conversation just flow. We went back to the hotel and William opened his Christmas presents. Finally!

The next morning he retrieved us from the hotel and we went to Cafe Presse (HERE) for breakfast. It is a funky, fantastic French place on Capitol Hill. Michael and I split a Croque-Madame. We are always amazed by the parks and the waterfronts that make up Seattle. We walked through the Volunteer Park Conservatory, which was built in 1893. The flowers and plants were beautifully displayed. The conservatory sits in a large park filled with meadows and walkways. I had been struggling with coughing and being short of breath so we walked as much as I could, mostly on the less challenging paths. The views from the park to the downtown area were spectacular. The photo at the top of the blog was taken in this park and if you look carefully, you will see the Space Needle in the center of the "donut,"

We drove to the new Filson flagship store (HERE) and took a tour. It was beautifully designed and even featured the manufacturing room on the entire first floor. Women and men on sewing machines were making luggage and bags. Michael tried on a jacket but everything in the store was for a colder climate. He would rarely need it here in the Bay Area.

We needed a snack so he took us to the best bakery in Seattle for a little something and coffee. I can't remember the name!! It was a good stop. Afterwards, we drove to the old military base that is being developed for a variety of housing options from the buildings already on the property. After a short walk, we were able to make our way to the waterfront. The views of the entire Puget Sound were beautiful, the different islands were to our left and further away was the Olympic Peninsula. All of downtown was on the other side of the sound. We watched the harbor and small boats drift in and out. Very quiet and lovely.

We needed a nap. After a couple hours at the hotel, we cabbed to Stone Burners on Ballard Ave (HERE) for the best meal of the trip. Again, small plates to share. The very best of the whole trip was their cold-smoked albacore tuna served in a small pot with slices of sweet potato chips (photo). We also ordered a large plate of meatballs (7) to split and: Grilled Octopus, Roasted Brussel Sprouts, Black Chimaera pasta with clams. Did I mention the donuts and chocolate sauce for dessert. They were tiny, thankfully, but I still only had one.

The next day, we met for breakfast/brunch at Seatown (HERE) right on the water. Michael and I shared an egg sandwich with CRAB! Yes, that's right, crab. It was delicious. He even had an Irish Coffee to start the day. It was a vacation, you know. We drove around, through the different areas. After a cup of coffee, he drove us to West Seattle. It is a peninsula that sits across the Sounds and has magnificent views of Seattle. It felt very much like home. In the summer, the road is bumper to bumper tourists enjoying the beaches. It reminded us of our little beach town. Nothing fancy.

After another nap at the hotel, we met William and his roommate at Bramling Cross, also on Ballard Ave. It, too, featured small plates. (HERE). We began with a Dungeness Crab Dip and seasoned fries while we waited for them to arrive. We ordered to share: Roasted Brussel Sprouts, Seattle "Hot Wings" which were fried oysters in Frank's Hot Sauce, Pork Osso Buco and housemate sausages served with cannellini beans, kale and tomato sauce.

As a thank you to Ron for watching our house, I tried to buy some salumi from Mario Batali's father's place in Seattle but they only take Internet orders. The line to have one of their sandwiches was long and the wait was going to be over an hour. We didn't wait. After we got home, I ordered some to be delivered to Ron and gave him the information. Here is their web site: HERE

I know this sounds like a lot of food but I really did not overeat and we walked a lot. A good balance. Most of the time, I would take a small helping, just to taste it. I was also grateful that I had lost some weight before we left for the trip but I still don't think I did much damage. As I have an appointment with the nutritionist later this week, I will still watch every bite to be sure any weight I gained is gone.

After the 15-hour drive home, it felt fantastic to sleep in our own bed. It was a short vacation but it felt like we were away forever.

Sunday, February 7, 2016

See You in a Week

I am exhausted but so excited for tomorrow. The orchestra concert last night was a bit weird. Gerry and I did fine but the solid, strong players who always perform so well seemed to have problems. Lots of mistakes. The first violins also had issues. What was maddening was that everything was excellent and well played during the dress rehearsal. Problems happened that never showed up in any rehearsal. Mom said she noticed one or two but there were many. We knew. The musicians were looking around at each other like, "Get it together."

Mom arrived earlier in the day with Michael, we chatted, they had cocktail while I made dinner. The Brazilian Coconut Shrimp Stew turned out great and mom loved it. A success! We arrived to the concert venue early so I could get settled in. The place soon filled up. It was a nice sized audience. We drove mom home afterwards then we fell into bed.

Today, we are already planing a nap later this afternoon, probably right when the Super Bowl begins! The to-do list is long, packing needs to happen, we need to meet with Ron to hand over our house keys and instructions and one car will be dropped off over the pass to be worked on while we are gone. We need to have everything ready so when the alarm rings at 3:30AM tomorrow, we just have to climb into our clothes, grab a quick Nespresso and a bit of food then hit the road.

There is no other feeling when we pull out of the driveway and the trip begins. All the problems and doctors and issues are left behind and we both feel total freedom. And, as a big bonus, we get to spend some time with our son. Win-Win.

This is my final blog until next Saturday. Stay healthy. Keep moving and exercising. Eat well. I will be back with stories and photos to share.

Saturday, February 6, 2016

Concert Tonight

So much is on my plate today. I have a list in preparation of mom joining us for dinner, followed by my orchestra concert. Michael will drive her over the pass to our house mid-afternoon for an early dinner. Before they arrive, I need to pick up a few things in town, vacuum, set the table and generally pick up the house.

In all my years of performing, I have always taken a shower before a concert, whether I need to or not! It is a tradition. Okay, it is a superstition. Once, I had just showered so I skipped it and I really did not perform well. So, there will be a shower this morning!

Mom and I spent the day together yesterday, her house looked and smelled great after the mold specialist worked for three days. She had spent two days dusting every single item in her house and vacuuming the rugs numerous times. She was exhausted, her back was bothering her but she was sleeping really well! We just shopped, everywhere from the Dollar Store to Home Depot to Target and other stops in between. We ended our day with a great lunch at Mimi's Cafe, which was delicious. We had a great day.

Michael and I have been checking the weather and it is all clear for our trip Monday. But, when we are driving home Friday, it's all rain all the way. I won't be posting while we are gone as I will only have my iPhone but no iPad or computer with me. I will blog again next Saturday, after a good night's sleep. I will take lots of photos!

Friday, February 5, 2016

Mr. Negative

In rehab class, the new guy Don has been opening up a lot and Sherman and I are trying helping him. He was making huge insurance decisions right now and will be officially on Medicare on March 1. It is a scary time. There were so many confusing choices of gap insurance for both medical and medications. He told us that he made his choices yesterday but was still worried about how it all will play out.

Another relatively new guy at rehab, who had a lung transplant, tends to be very negative and vocal. Don was talking about being new to Medicare in a couple of weeks while we were cooling down after exercising when this other guy said, "You better get your oxygen set up before Medicare begins because I went through hell. The oxygen company kept screwing up. I refused to pay. It was horrible." Great. Just when I had Don calmed down. I said, "I have the same oxygen company and I had no problems getting my oxygen." The guy repeated how horrible the experience was. I repeated that I had no problem.

This guy is always negative. Before class even began yesterday, I wanted to stand after sitting for an hour with Sherman. I wandered over to the door of the gym, looked in, there was just one person left before we would be allowed in, Sherman came to join me which made our other friend to join us. Don also joined us. We were talking with our other friend and Don about our diseases, all ILDs, when from across the lobby this negative guys was yelling, "Why are you guys fighting to get in and blocking the door?" We ignored him and continued our conversation. He got louder, we all turned to him and I said, "Don't worry." He was yelling stuff at us again and I repeated, "Don't worry." He was now yelling and I am now saying, "Don't worry" several more times. He finally said, "Well, I'm just a shit disturber." Really? We turned back to each other to continue our conversation.

So, I did my workout without any contact with him until I was outside waiting for my car. He drove by, I smiled and waved. I'll keep trying but this guy is really one negative person. I don't think I can change that.

It was my last day of the class for a week.

Thursday, February 4, 2016

Professional "Ringers"

The dress rehearsal went well last night. The room was very live so we strings could be easily overwhelmed by the brass and woodwinds, who sit in front of a wall. It always takes the final rehearsal in the concert space to tweak these sort of problems. Gerry and I played well, bumped into a couple of oops moments but we will be very focused during the concert itself. Amazing what an audience can do to increase the level of competence of an orchestra!

One of our trombone players is in the middle of bone marrow transplant treatments and the other has been told to not play nor drive until they can find the cause of severe dizziness. Three "ringer" trombonists showed up last night and made such a difference to our overall sound. They were pros. They were fantastic. I spoke with them during the break and discovered that one was an elementary school music teacher. We talked music and kids.

We also talked about their friend who was a trombone student of mine at the school where I got sick. I have known this kid since he was in 4th grade. He had kind of a bumpy road but I was thrilled to learn he finally graduated from a top university as a music performance major. But, I was horrified to learn that the reason he didn't take our gig was that he is struggling with Bell's Palsy. Often, the residual effects are so severe that musicians can no longer play their instruments. Apparently, he is at the final recovery stage and feels he is close to being able to return to performing. That is very good news.

The concert space is not well ventilated and with it packed to the gills during the performance, it gets really hot. Thankfully, Gerry and I are backed up along one wall with two small windows. We begin the concert by cracking open both windows but by the second half of the concert, we have them fully opened. Last year, I was struggling with the flu and wore my oxygen during the concert because it was just so warm and I couldn't breath well.

Sunshine is forecasted for our road trip! That is fantastic news! No snow in the pass! It will be a wild few days to pull everything together before we take off. I have a list. A long list!

Wednesday, February 3, 2016

The Long and Windy Road

I made it through my rehab class workout yesterday but it was tough. Lots of sweat! Not easy. Some days are just harder than others. Sherman was there and was looking pretty good! Glad to see him. Dick was not there. Worried. I will be phoning him this morning.

We had a wild ride yesterday. Since the stoplight was not working at the far side of the pass, traffic backed up as each car had to come to a complete stop. Usually, a CHP officer will be there directing traffic to avoid the backup. Well, the backup was the worst I had ever seen it and it took an hour to go just a short distance. We were on our way to the Porsche dealership, I was leading with Michael following me. At the top of the pass was one of our favorite roads that snakes through the redwoods with views of both the peninsula to the east and the ocean to the west. We decided to take that road instead of staying in the stopped traffic. We worked our way to a road, which took us down the mountain right to the area near the dealership. It was a very twisty road, wet with the rain, sometimes one lane, loading with 15MPH curves and a rather scary drive. We made it! We got to the main road to take us to the dealership! Great, until it came to a complete halt. More stopped traffic. On a whim, we turned down a side street.

All I can say is, "Thank goodness for iPhones!" I mapped the dealership and it showed me how to get there. We saw some areas we had never seen before! Huge mansions block after block! We finally made it to the dealership on time then Michael drove us back to enjoy coffee at Madame Colette's. He went crazy over the place and the croissants, made with imported French butter. What a difference! He was very happy. I dropped him off at his hobby shop while I went to rehab, then retrieved him afterward to drive him back to the dealership to pick up his car.

I felt I was in a car all day!

In happy news, my black cords were loose yesterday! I have lost the weight I was worried about and am now ready for the road trip! I made a list of things to do before we leave, which is long. Today, I am staying home until the orchestra dress rehearsal tonight in order to tackle some of those chores listed.

Tuesday, February 2, 2016

No Fluid!

During Sherman's 90th birthday party in January 2015, someone passed along their germs to me. It turned into a flu along with both eye and ear infections. Three months later, I was finally fully recovered from the flu. Since then, I have been struggling with fluid behind my eardrum. Apparently, if it is still present after three months, other options must be considered like the installation of tubes in the ear for drainage.

I was preparing myself for having to deal with tubes in my ears before seeing the ENT doctor yesterday. I got a referral of Dr. L. from my friend Lois, who is currently enjoying three concerts a day at the Mozart Festival in Salzburg. What a doctor. She went to my university hospital for her medical school and personally knows several of my doctors. She is now a mom in private practice.

We talked, I gave up the Flonase a week ago, I gave her the timeline of the problem then she looked into my ear. Nothing. No fluid. My ear was clear. She then took pressure reading of both ears to insure there was no fluid. Both ears passed. She mentioned that if I started to have problems again, like ringing in my ear or feeling like the fluid is back, I should consider an MRI as it might be nerve damage or brain tumor or a number of other problems. I paused, thinking of my brother-in-law Doug and his brain surgery last year after dealing with the same symptoms. If I feel anything thing, I will call her to set it up.

Then, I met mom for a late lunch. Her apartment was a total mess. The wall heaters had blocked drains and with the rains, there was a problem with the roof. Her bedroom and living room walls and carpets were soaked. Clearly, there had been past problems as the walls had been patched. The complex hired a mold company to come in and take care of everything. She was miserable. The heat must stay at 75 with dehumidifiers and fans running 24/7. Walls had to be removed and replaced, lots of sanding and prepping the walls had caused dust on everything. She was trying to dust everyday but it was really overwhelming. The bedroom smelled.

I tried to get her to come home with me for a few days. I tried to have her come home to just spend the night. Nope on both. She just wouldn't do it. She is going to contact her primary to tell her that she just found out she had a long term exposure to mold and she wants her lungs to be checked. I also want my housekeepers to clean her place after the work is finished on Wednesday. The complex should pay for it. She is worried that they won't clean as well as she would clean.

In other news: I have been really watching my food intake. Because of several parties, I was feeling that I had gained some weight. It was uncomfortable. For the past several days, I have really watched every bite and now feel like it is gone. I am ready for our trip to Seattle. On our way to drop the Porsche off at the dealership this morning, I am going to take Michael to the wonderful Madame Colette cafe, thanks to Dolores for the introduction. What a great find. I will watch Michael try a few pastries while I have an excellent cup of coffee then take off for the rehab class with my rehab boys.

Monday, February 1, 2016

New Doctor Today

We had a cleaning Sunday. The oven exhaust hood was taken apart and totally cleaned, Michael installed a piece to cover the little opening between the oven and the wall, I scrubbed down the grates and everything now sparkles! Michael also took care of the laundry while I ironed the sheets. We began compiling stuff for the trip and thinking about what clothing to pack.

The road trip to Seattle begins one week from this morning.

While cooking dinner last night, the power went off twice when the winds kicked up. There were 50 MPH gusts, which brought down trees and blew sand across the main highway. Lots of sirens all afternoon. We had no damage and all the trees and fences are still standing!

Mom and I will be together for only a short period for lunch after my first appointment with the ENT regarding the fluid behind my ear. I know I have mentioned it before but I want to pass along that my dad noticed that he was treated so differently by doctors if he was dressed in a suit compared to shorts and a golf shirt. The suit offered gravitas. He was taken seriously.

I always dress for doctors. Nothing fancy but what we used to call Sunday clothes. Church clothes. And, I make sure I am very clean as I noticed that was not always the case as I sat in waiting rooms with other patients. I am sure the doctors appreciate that the most.

Yesterday, I made sure to print the updated list of medications, surgeries and illness and family history documents.

I am ready.