Living Well with a Bad Diagnosis - Lung Disease

Monday, May 31, 2010

Happy Memorial Day















We have been having an interesting holiday – food shopping, dinner with friends, a little time in the garden and continuing to recover from my cold.

This weekend – Memorial Day weekend – evokes images of sunshine, BBQ’s, friends, and fun.

In our family, it means so much more. We have always grateful that my dad made it home to Chicago after four years in Europe during WWII only to return at the age of 23 and fall desperately in love with my 17-year old mom.

We are grateful that his brother – my Uncle Bill – was not killed in an accident in the Pacific that haunted him the rest of his life. He also carried shrapnel in his body as a constant reminder of that event.

We have also been reminded every year to pause and give thanks for those who didn’t come home. One of those was my mom’s brother. He was 19-years old, a brilliant navigator, pianist, actor, composer, mathematician, and engineer. He wasn’t supposed to be flying that day in December 16, 1943. He was filling in. He was based at an airstrip near Cambridge, England.

They flew east from the airstrip then directly south to bomb a submarine base in Hamburg, Germany. There was a problem with his plane. It lagged behind the rest of the group. It was a sitting duck.

It crashed. Several men survived. Two made it back to England; one became a POW, the rest died.

They never found his body.

My family was connected politically and, after the war, my grandmother was able to get a congressional investigation into his death. I have all the records. I even have the hit recorded in the Nazi documentation. I have the exact location of the crash site. I have the dreaded telegram dated just before Christmas. I have a letter from the newly released POW to my grandmother describing the crash.

My mom was 13-years old. It changed her life forever. Her mother never recovered from the loss of her son. Her sister was eight years older, in the WACS and gone from the area. She was alone. Her mother was so angry with her father for not showing his grief yet he undoubtedly felt it even deeper than she did.

In 1995, Michael, William and I traveled to the cemetery near this airstrip in Cambridge where so many American soldiers are buried. His name is inscribed on a wall of those who never returned. So many crosses. So many names.

I think about this same tragedy playing out in so many households today as we are still in a war. War.

Memorial Day. A day to remember.

Sunday, May 30, 2010

William's in Town

For the first time in over ten years, William is walking onto a stage to play a bass and perform in a band. I am so thrilled that he has returned to his roots of playing an instrument. He was invited to join a band that is opening for a much more famous band. He is replacing a woman bass player who just had a baby. The group has the right management group, producer and people behind them. We’ll see how far they can go. We don’t know if it is just a temporary gig or if he will be asked to perform with them in the future.

On this quick tour, they had already played several concerts before heading to our area. We tried to arrange to see him before the concert but he ran out of time. There was a huge rainstorm throughout the state and they were driving up from LA for the concert. They were running late. I finally texted him to ask if he was going to have time to see us and that the answer “no” was okay. He replied that they were running late, he wasn’t going to have time to see us but the concerts have been going really well.

I never liked my name, as it was so short. Boring. No nicknames can be made from it and it is such a 1950’s name. When we named William, I loved it because he could choose from a variety of nicknames.

He is always William to me and Michael calls him Willie, which he hates. It is interesting that professionally; he calls himself Will when he is a sound engineer but William when he is a musician. Different hats.

So, we look forward to him flying down for a few days or maybe we will plan a quick run up to Seattle to see him. Road trip!!

Saturday, May 29, 2010

Farewell Lunch with Friends

I had my final lunch with some friends from rehab over a week ago. She is the woman who finally had her kidney transplant last December and her husband who is in my rehab class. They are moving to the big city to be closer to my university hospital because her kidney transplant requires a lot of continuous testing.

We met at a sweet French café after I worked out at rehab. I had not seen her since the transplants last December. She looked fantastic and the bloating she had in her mid-section was all but gone. I think she has lost at least 30 pounds. It was all fluid from the bad kidney. She only had one kidney left and it was failing. The new one is doing well. (Her perfectly matched donor was her adopted son.)

It was so great to sit and talk and just be with these two marvelous people. I will miss them both.

We promised to keep in touch.

Friday, May 28, 2010

Hairy Situation

I met John when he was at the funeral of one of our neighbor’s. He had cut and colored her hair for years and I was so touched that he would take the time to go to her funeral; I asked if he had room for another client.

We have been together for a long time. His family is from Jordan but he moved here when he was quite young. His wife is beautiful and they have two boys who are growing up so quickly. One is already in middle school and we share a birthday.

He bought the salon from a woman who now rents space from him. I got a phone call from her with the bad news: John had a debilitating back injury. They have since tried several different treatments including shots. Nothing helped.

As he is the sole wage earner of the family, this must be financially devastating for him. He has been off work for over four months.

The doctors think that the injury was caused by years of working on his feet. They finally decided to do surgery on his back and the news is that he is coming back soon. It was successful. I am so happy that he can put this behind him and to begin again. Maybe not as fast or not as many hours but it will be good for him to reclaim his life.

I wish him all my best.

UPDATE: Picture this lovely vision: Sneezing, nose blowing, coughing, whining woman I have turned into with this cold. It has gone to my lungs. Talked with Dr. K. who began a 10-day run of antibiotics.

Thursday, May 27, 2010

Continue Dreaming

I was listening to one of the morning show while getting ready for rehab when the subject of living your dreams came up. The context was a father who discovered that he had cancer and elicited his male friends to help raise his children after he died.

He is currently cancer free but I found one part of the interview interesting. One of the men said that his job was to work with the children to encourage them to follow their dreams in a very organic manner.

Follow your dreams. Hmmmm.

I thought about that all the way to rehab. Since I have a limited future, I think I may have forgotten to dream. There was no future to dream about.

I have decided to dream again. I have decided to make it a point to dream.

  • I dream of running. Do you remember how it feels to run, to hit your stride and you feel like you could run forever? I crave that.

Okay, it’s a beginning. It is the one I think about more often these days. I know that if I keep working out in rehab, I will be able to run again.

Wednesday, May 26, 2010

The Decision Has Been Made













Photo of Alice Tully Hall at The Juilliard School.

I received an e-mail from my former student who is an internationally ranked pianist. He has been accepted to many colleges and was trying to make the hard decision of choosing which will forever shape his life.

Here is a portion of his e-mail:

After deliberating over the decision almost a month, today I enrolled at Columbia University and Juilliard, as part of the Exchange, and so will be studying with Mr. XXX in the fall. I believe it is the best option for furthering my potential in both academic and musical fields, though I feel sort of bad for turning down Harvard and Yale.

Juilliard. I have such mixed feelings. It is supposed to be the best. It really is the best. But there is always a “but…”

Through the years, I have performed and worked with a number of Juilliard graduates and Juilliard dropouts. When the school is mentioned, there is a reaction almost like post-traumatic stress syndrome from both groups. One said it was the most horrible experience of his life and he still had anxiety so many years later. He had been a young teenager when he was accepted into the school and moved to New York on his own. There was no local emotional support. Another said that after she left the school early, she did not play her instrument for a decade.

When one is accepted into Juilliard, the student is usually considered the finest musician in their area. They are accomplished. They often have artistic sensitivities. But, Juilliard is like boot camp. They take each student, then break them down to get rid of bad habits, then rebuilds them to be the finest musician they can be. Sometimes, the process just breaks them.

David’s piano teacher at the school (where I got sick) was tough on him. Really tough. I can only hope that she prepared him well for this challenge that awaits him. We hope to be in New York some time next year and will plan to see him.

Tuesday, May 25, 2010

Sneeze






























Well, it came for the first time in almost a decade. I have a cold. It is day four.

My dad always said that a cold is:

3 days coming

3 days here

3 days going

If it lasts longer than that, something else is cooking. I don’t want anything cooking in my newly good lungs.

The PFTs and CT Scan that were scheduled for Wednesday have been reschueuled for two weeks from now and I sent a FAX to Dr. K. to let her know the bad news. This may really send me backwards or even into the hospital if it goes to my lungs.

All plans must be changed. No rehab. Nothing but staying in and resting.

Boring. Scary.

Monday, May 24, 2010

Meet the Future










Photo of a fountain in Oslo, Norway

which is always a stop on the world tours.


During William’s first tour with the band, we met them when we dropped him off at the hotel after dinner the night before their concert in our area. They came to the car, looked us in the eyes, shook hands and introduced themselves to us. No tattoos! No piercings! Short hair! Geeks!

As we were driving off, I said to Michael, “I feel so much better now.” The next year, a documentary of that tour received many awards and it continues to be shown on premiums TV channels. We were able to see what it was like to travel and work with this band. Even now, we will get a phone call from someone seeing this documentary for the first time and spotting our son.

In the years since, we have met several of the other parents and have had conversations with all of the band members. They are well-educated, creative, bright adults who view their band as a business. Smart.

William worked the monitors for them for a while until they offered him the front of house position, which means he is head of their live sound. It is a big job. It is a very stressful job. He has done very well.

During this time, they became very popular. Some years William was touring with them on four continents. The past three years, they have received numerous Grammy nominations.

It was such a shock when he surprised us with his first Gold Album, which now hangs on our hallway wall. That album has since gone Platinum and the next album went Gold. He was the recording engineer on the last album.

While the band is taking a break before recording their next album this summer, he has picked up other work and is currently in Europe running sound for another band.

After he gets back home, he will leave to perform in an opening band for a famous group in major venues. I am thrilled that he is back to performing music. It makes my heart sing.

He loves his work. He loves the travel. Instinctively, he knew he could not have found this in college.

People in the industry have told us that what has happened to him is a one-in-a-million shot. It just doesn’t happen.

William is lucky, hard working and talented. I am clearly proud of his success.

Sunday, May 23, 2010

Back to Our Son

We enrolled William into a Catholic middle school at the last moment. His public elementary teacher said he would be lost at the local school and not to send him there. He was a solid student but very quiet so the teacher felt William would fall through the cracks. What were we going to do? I contacted one of the Brothers at the church where Michael and I had met and explained that we needed help. William was enrolled in their school by that afternoon. From there, he graduated to the Catholic boy’s high school near my work.

William did very well in high school. He made the honor roll every semester and graduated near the top of his class.

During the graduation ceremony, they awarded the Bank of America Award for music along with awards for science and math. He won the music award. We were not surprised, as we knew he was an excellent musician, but we were pleased that his hard work was recognized.

Off he went to a private college in the Northwest. We thought all was well. It was not. It was not a good fit for him and he was failing. He was also feeling guilty for costing us so much money and not taking full advantage of the opportunities.

He phoned one day to tell us that he was dropping out after the second year and was going to travel through Europe for a year. We told him that we wished we could travel for a year but couldn’t afford it. We wished him luck and said that we will continue to pay his rent, bills and food when he returned to college.

He moved to Seattle with a friend and they nearly starved to death. We made a pact that if he was going to become homeless; he had to let me know. It never came to that but it did come close.

As a middle class child, he had all that he needed though certainly not all he wanted. It was good for him to have to struggle and appreciate each dollar. He is currently very good with money, has excellent money management skills and carries no credit card balances. He says he never wants to be that poor again.

He knew he wanted to work in the music industry so he went to the best venue in Seattle and tried to talk them into allowing him to work there. They turned him away for several weeks. Finally, he got his foot in the door and began working his way to being in charge of the stage monitors then to the front of house sound engineer. He was running sound for the venue after a very short period of time. He was being paid! He was eating! He was paying rent! He had money!

In 2003, a local group asked him to go on tour with them. No way! He was stable with a good job that he loved.

In 2004, they insisted that he join them as their monitor engineer. We got the phone call. He had quit his job and was going on the road with a group we had never heard of with a horrible sounding name. We had visions of piercings and tattoos and skuzzy people.

We were so wrong.

Saturday, May 22, 2010

Pirfenidone


















It didn’t happen. After such promise, the FDA did not approve the “miracle drug” for Pulmonary Fibrosis. Here is a note from the head of the Coalition for Pulmonary Fibrosis regarding this huge disappointment:
The CPF would like to inform you that the FDA decided to request further study of Pirfenidone and not approve the drug at this time.
The CPF understands the disappointment that will be experienced in the PF community as a result of this decision by the FDA, but we remain hopeful that the company that owns Pirfenidone, InterMune, will be able to present the FDA with additional information studies that may alter this decision in not-too-distant future. We encourage our members to remain optimistic, to continue to do the wonderful work you have done to generate Congressional support for H.R. 1079, and to stay informed via our website for any updates or changes to news about PF research.
Please see below for content of the CPF press release sent out earlier today.
Sincerely,
Mishka Michon, CPF Chief Executive Officer
Coalition for Pulmonary Fibrosis Responds to News of Further Review of Pirfenidone By FDA
Decision Marks Delay in Potential First Treatment for Deadly Disease
San Jose, Calif. – May 4, 2010 - The Coalition for Pulmonary Fibrosis (CPF), representing tens of thousands of patients, is responding to the news that the FDA chose to ask for further study of Pirfenidone, which will delay potential approval of the first drug in the treatment of Pulmonary Fibrosis (PF), a lethal lung disease that is irreversible, progressive and deadly in an average of three years. On March 9, 2010, an FDA Advisory Committee recommended approval of the drug by the FDA.
“This news is disappointing for the Pulmonary Fibrosis patient community,” said Mishka Michon, CEO of the CPF. “Although the drug is not seen as a cure, it offers the first-ever option for treatment and some hope for these dying patients. This is a setback for those patients who are anxious to gain access to this treatment now. We look forward to results of further review of the drug by the FDA. We are hopeful that more attention to the disease will come and much will be learned that will encourage even more companies to research PF. The need is profound and urgent.”

Friday, May 21, 2010

Tourists in LA

One of the reasons we planned this trip was that I knew that I would be exhausted. With my mom’s surgery, Mary’s visit, the orchestra rehearsal and concert, I was unable to gather my strength when it all ended. What worried me is that I have an appointment with Dr. K. next week for a full run of PFTs and a CT Scan. I wanted to be rested and feeling great for those tests.

We planned this trip to rest, get out of our routine and just relax. For the first time in a few weeks, I started to feel good again on Tuesday. My strength was coming back. I think all the walking through the gardens and the museum was good for me.

On Tuesday, we played tourist! We went to the hot and hip “The Grove” which was nothing more than a lot of fancy chain stores. I guess this is where the stars go to shop. Not impressed. What was impressive was the old Farmer’s Market right next door. We had been there years earlier with Mary and Joe and we were happy to see that it has been cleaned up and much less of a maze. We had breakfast sitting on a stool at a small table across from an old character actor. Another well-known face joined him and we listened as these old friends chatted. It was such an LA moment.














Afterwards, we drove to Grauman’s Chinese Theatre where we strolled the avenue of the stars and compared our feet to the footprints of many stars. There were just a few other people there. We strolled across the street to see where Jimmy Kimmel tapes his late night show – William has worked there many times. From there, we made our way to the Griffin Observatory. On the way up the mountain, we passed the Greek Theatre where William has also worked. It was fun to see it. The Observatory had great disability parking and we were able to walk around the entire observatory to see the glorious views. It was breathtaking. We chatting with people and just drank it in.

The weather kept changing throughout the day from cloudy, showers, rain then sunshine. It did not stop us from doing anything. It was cool enough for me to breathe well so we were happy.

For lunch, we tried a famous Tommy’s hamburger! We had to try them. They were amazing. All their hamburgers come with a bit of chili on the patty. The heaven’s opened and the angels began to sing! Heavenly.

We hopped back into the car and drove Sunset Blvd past all the famous comedy clubs, nightclubs, and theatres. It was so LA. We headed to the beach. That was so interesting as we just don’t have beaches like those in LA with their wide, flat beaches leading to warm waters. We walked the Santa Monica pier to the very end where we sat in the sunshine. I spotted something in the water. It disappeared. There it was again. It’s two! There were two dolphins swimming just off the pier. We were there all alone – a rarity on the pier – and we grinned at each other as we shared such a treat together.

We walked back to the beginning of the pier and I knew that there was no way I would be able to walk up a huge hill back to our car parked on the street. Michael had to drive back down to pick me up. We then drove north on the Pacific Coast Highway to Malibu then back to Sunset Blvd. to head east. We wove our way through several communities and arrived back at our hotel. Dinner was again some appetizers and a cocktail for Michael.

We left LA by 8:00 Wednesday morning, stopped to pick up an engine for a friend, grabbed some lunch at Harris Ranch and arrived home at 3:00PM. What a great getaway. It felt like we had been gone for weeks. We slept like babies.

Thursday, May 20, 2010

Home Again with Stories to Tell












Miss me? We’re back! What a great few days!

We drove to LA on Monday morning and headed straight to the Huntington Library near Pasadena. The Huntington’s – he being part of the Big 4 Railroad monopoly – moved to LA in 1902 and began collecting books, papers and plants from all over the world. The Mansion was built in 1911 and the collections found a home.

We arrive just as it opened at noon and walked through the vast gardens to the new Chinese garden. The tea garden, water features and structures were so worth the trip and we wandered through them totally alone. We continued strolling through the Japanese gardens, the Zen garden and the Bonsai garden. Walking down a trail to the larger gardens, we paused under a canopy of a huge grove of bamboo of various varieties.
















We chose the long path through the large garden past all the exotic plants including huge succulent gardens. One large tree had horns; yes horns, sticking out of every branch and on every inch of the trunk. The part of this visit that made me the happiest is that I was able, with the help of oxygen, to walk the gardens, up a number of stairs and a huge uphill back to the library. I was not out of breath. Yes, we took it slowly but I did it.

We went into the library to see the permanent display including a Guttenberg bible, the last photo of Lincoln, historical papers and books. We then entered the current exhibit call “A Clash of the Empires” The Seven Years War and British America featuring a very young George Washington. It was a lot to take in and wished that we had spent more time in the library in general.

Sadly, we realized that this was probably my final visit to one of our favorite places. It is not set up well for disabled people. The parking itself required a huge amount of walking, the disabled trails are not well marked and some trails will be impossible for me in the near future. I tried to drink in every moment of it and sear it into my brain.












We drove a few miles from the Huntington to the Norton Simon Museum right on the famous Rose Parade location of Colorado Blvd. in Pasadena. It is one of our most favorite museums. It felt like home as we strolled past all the Rodin bronzes on our way to the front door. The museum is divided by centuries from the 14th – the 20th. We re-visited wonderful works by Monet, Renoir, Matisse, Gauguin, Manet, Rembrandt, Picasso, Degas paintings as well as bronzes of girl ballerinas, Van Gough’s active paintings, Rousseau, and very old altarpieces dating from the 1300’s. We wandered and greeted each remembered piece like an old friend.

























As we finished, Michael said, “Let’s go eat lunch!” And so we did. We headed to Philippe's, which is one of the oldest restaurants in LA. It was opened in 1908 and some fool in 1918 dropped a roll into beef juice, slapped thin slices of beef between the wet roll halves and voila! The French Dip was born. We had to have one! It was not in a very nice neighborhood. In fact, the inside of the restaurant probably looked pretty close to what it looked like in the beginning years. Sawdust was on the floor. You just don’t see that in your fast food places. The ladies making the sandwiches were lovely and walked us through the process. The French dip sandwiches were small by today’s standards but really a perfect size. They were also only $5.95. Unbelievable!


We headed across town to our hotel, which was the former iconic circular Holiday Inn featured in so many movies as well as noted when OJ Simpson drove by it on his famous car chase. Bundy is just a few blocks away. It is now a sleek boutique hotel, which we have stayed in many times through the years. It is in a perfect location – across the freeway from UCLA, at the foot of the Getty Museum, several blocks from Wilshire and is actually on Sunset Blvd. It also has a great bar/restaurant on the top floor, which overlooks the 405-freeway rush hour traffic, which was fascinating to watch. For dinner, we had two appetizers and Michael had a cocktail to end our day. He was snoring by 6:30. I soon followed.

Sunday, May 16, 2010

Another Birthday












It is a birthday month! We missed our friend’s birthdays and even though we have known them for almost eighteen years, they got lost in the black hole of my calender! Rick’s birthday was in March and Natalie had one just a week ago so we celebrated both together last night. They live down the street and have a 13-year old daughter in 8th grade. It has been a pure pleasure watching Melanie grow before our eyes. I must add that she is a fine musician who plays both the piano and saxophone. She missed our birthday celebration because she was in Disneyland with the school band. Good for her!

We hosted them to a superb dinner in a restaurant with an amazing view usually filled with people celebrating birthdays, weddings and anniversaries high up in the hills at the top of the pass.

Michael and I split the following: an appetizer, a steak dinner, and dessert. It was still too much food. Our friends had surf and turf and a thick Filet Mignon dinner. We were all stuffed to the gills. We sat, looked at the beautiful views and enjoyed being together for over three hours. It was lovely.

I looked around the table at one point and said a silent prayer of thanks. I am so grateful that these people are in my life. Then I looked at the handsome, charming man next to me and I am so grateful that he didn’t cut and run when I was diagnosed. It has not been easy for him to watch helplessly as the disease and it’s ramifications unfolded.

He is a good man.

Saturday, May 15, 2010

Leaving Rhoda Behind




















I was still very close to Lindsey when the whole blowup happened with the twin. She was also dealing with marriage issues, which culminated in a very nasty divorce.

I had noticed that she always needed a Rhoda. You know, The Mary Tyler Moore show of the 1970’s. She cast herself as Mary Tyler Moore and always needed a side partner. I often wondered about the other women we would visit on occasion and it wasn’t until after another Rhoda replaced me that I figured it all out.

The new Rhoda liked to hang out at night and drink in bars with her.

Suddenly, there was no time for me. I would call, listen to all of her problems, I would start to talk and she would have to go. Sorry, no time. This happened every time I called.

I decided not to phone to see how long it took for her to miss me. It was almost a month before she phoned me. I knew it was over. She had moved on.

I vowed to never be a Rhoda again.

By this time, the drama with the twin was going on, Michael had quit his well-paying job to work for a friend in his new shop 60 miles away for very little money. I was feeding us on $25.00 a week. I would do things like buy a chicken and make four meals from it. The final one would be homemade chicken noodle soup. I even made the noodles to save money. I grew to hate it.

Years later, William asked why we never had chicken noodle soup anymore. He had loved it. He never knew that we were almost broke. We gave up everything including life and health insurance. Everything was gone except our house and we came close to losing it.

Michael was in his two-year fog of not believing me about what happened with his twin. He was cold, distant, sarcastic, and very absent. I considered leaving him. My dad stepped in. He said to get my marriage back because it was important that William had two parents who loved each other.

I took control. We ended up taking long evening walks together in the downtown area and dad told me not to even mention the twin which I didn’t for at least ten years. We talked about very benign stuff. After a long while, we fell back in love again.

I went back to work. I had worked at William’s school as a paid aid and was head of both the Education Foundation and the Site Council. I had learned about education.

When it came time to find a job when William was nine-years old because we had no money and insurance, I applied for a job as a kindergarten aid at the school where I got sick. It was 1990. I earned $4.35 an hour but I had access to insurance for the family.

It was still a hard time. We still were living on very little money. My paycheck bought William’s shoes or clothes and haircuts. That was it. I cleared just under $70.00 a month after paying for our insurance.

Working for the school, I was still able to be at home with William during vacations and holidays. It was the perfect solution.

Finally, Michael gave up working for his friend and got a job working at another friend’s shop. He was being paid a good wage again. Life suddenly became easier but I never forgot how it felt to be broke. I learned not to waste a dime and continued to manage our money wisely.

A year later, we planned a vacation. We rented a van, and the three of us drove to Yosemite, stayed in a B&B in the Gold Country and even panned for gold. It sounds so simple but it was such a big deal to us. It was the first time in many years that we had money to do anything extra.

I left the school when William was in 6th grade and returned to work for a lot more money in the Music Department when he was in 8th grade. It helped pay for his high school private education. It also took my entire paycheck to pay our monthly bill for his college tuition for two years.

What happened next is a whole other story.

Friday, May 14, 2010

Group of Strong Women

I was lonely. During the first year of William’s life, we never left him with anyone. Our families did not live locally and we had no back up. I so envied people who could get away even just for an evening together. Because of that, we brought William with us to family restaurants and movies as an infant and later as a toddler.

All my friends worked and really didn’t have a lot of time to talk about a baby. They had their lives and we all drifted apart.

On the news one night, I saw a spot about Gymboree. I phoned the next day and joined a class over the hill. That first day, I met a group of women who changed my life.

Thea became our group leader; she was from the Holland and a former stewardess for KLM Airlines. She gathered six women together whom she handpicked and arranged for all of us to meet for a playgroup at her house after the series of classes ended. Her husband worked for Bank of America in their department in the Shipping Industry. She later introduced us to the head of the Dutch consulate in SF. His wife was lovely and we even had a formal tea at their home. Thea’s husband was soon transferred to Hong Kong so they were never to be seen again.

The other women in the group were all taking time off from their careers and we were all first time mothers of boys. We met at each other’s homes every week for several years. They were a teacher, stewardess, airline rep, owner of a company, CPA, nurse, and me.

I especially loved Lindsey and her son Robb. (The photo above is of Robb and William.) She was married to a lawyer and returned to working as a nurse after her children were older. As time went on, she along with everyone else in the group had another child.

I tried. We tried. Nothing.

We tried to have another child for five years and it wasn’t until many years later that we discovered that it was my fault that we could not conceive. I had an internal sonogram and the doctor was shocked that I had given birth. Apparently, I should never have been able to conceive let alone give birth to a full-term baby – all 9 pounds 5 ounces of him.

Lucky William.

Lindsey and I became very close and we spent most of William’s early childhood together. We would enjoy whole weeks at their beautiful vacation home up in the Gold Country with horses and a swimming pond. I can never thank her enough for sharing her life and good fortune with us. When William was in second grade, the teacher told me that he did not have the issues of an only child. I give that credit to the many years we spent with Lindsey and her children.

As our boys grew older and started different schools, life happened and we saw less and less of everyone in the group.

Lindsey is now divorced for the third time, is in the advanced stages of MS and is wheelchair bound. I can’t image this active, bright, and beautiful woman who had it all having to adjust to such a solitary, financially devastating and physically challenging life.

Thursday, May 13, 2010

Our Son


I don’t write a lot about our son because he is very protective of his personal life. He was a huge happy baby. Papa Joe used to love to hear him laugh because he had a deep laugh, which came from the bottom of his toes. It made everyone smile. He was an adorable blond and often people would stop me to say that he should be a model. Forget it. He was not one to smile on demand. Ever.
When he was a child, we were talking about how he was going to buy Christmas presents. We were walking out of Safeway when he started to run and began picking things up off the pavement. It was a very windy day and money was blowing towards him. It was almost $80.00. We stood and waited for someone to come and claim it. We waited. We then sat in the car and waited some more. No one ever came to look for the money.
When he was around 8-years old, we spotted San Francisco's Pier 39's ring toss game where the prize was a large stuffed California Raisin. Michael grabbed William and said, “You can win this.” And he did.
These are just two examples. He has always been very lucky almost like he was born under a lucky star.
We had been married eight years before he was born. We had really nice cars, amazing vacations and cruises, great jobs, a house that we could afford before making the decision to start trying to have a child. I think both families had given up that we would ever have children. I knew that it would have been a disaster to our marriage if we had a child too early. I wanted to be financially stable in order to stay home for the first few years.
We tried. We vowed not to think about it. Within 2 weeks, I knew I was pregnant. Fate.
The company I worked for was based in Indianapolis, Indiana and they had made the decision to close the local division. They asked if I would stay on after the baby was born, do the payroll at home and go into the office once a week for an hour or so. For doing this, I would receive my full pay. Of course! This arrangement lasted for six months.
When William was about 4 months old, Michael announced that he needed a vacation. The stress of a newborn baby was weighing on us. We arranged to stay with my high school friend who was living in Hawaii. She invited us to stay in her guest room in a house way back in the Manoa area of Oahu for as long as we wanted. As they worked in restaurants at night, we were out of the house during the day so they could sleep then we were alone at night. She even loaned us her car so we could drive around during the day.
Caroline was also a pilot and she flew us to Maui for a stay at the Hyatt Regency in Lahaina. We stayed a week then flew back for our final days on the islands. We were there for almost a month. It was a time that we will never forget and often tell parents of newborns to get away from home. No laundry, no meals, no grocery shopping, no phone calls, no nothing except bonding with the baby and resting.
After we got home, Michael started a new job that included a pay increase that made up for my loss of income, almost to the penny.
Also after we got home, I realized that we needed to move. The house was on a really busy street with no sidewalks and I was worried that he would be killed riding a bike. He also had begun to crawl and suddenly it felt too small.
So, within six months of returning from Hawaii, we had sold our house in a horrible real estate market of 18% interest rates and bought our current home. It took every dime we had and we began to rebuild our lives once again. The house closed on William’s first birthday of January 20, 1982.

Wednesday, May 12, 2010

Visit with My Favorite Doctor - Dr. K.













Example of good lungs. Perfect lungs. Normal lungs.

I had an appointment with Dr. K. yesterday. The long drive up is always so stressful though I arrived very early. An ILD Meeting was also taking place elsewhere on the campus at the same time as my appointment.

Presenting her with a list of all the things I am doing so differently this year, she was thrilled that my health has improved so dramatically. I did warn her that I was not in the best of shape at the moment due to the concert and Mary's visit.

She is arranging for me to have a high definition CT Scan, full pulmonary function tests and an appointment with her to happen all in one day as soon as possible. It probably will happen sometime in early June.

After listening to my lungs, she said that they are the clearest she has ever heard them and the crackle when I had inhaled the coffee almost two years ago is no longer there. She was stunned.

Changes are happening and they are good changes.

I ran across the street to catch most of the ILD meeting. I didn’t learn a whole lot but was happy to be there as the people were really wonderful. One was a man waiting for a heart/lung transplant. He said that they are rare these days as heart patients needs come first on the list. Hard to get them both. Not like the old days. Learning that reminded me to go to rehab today. Have to keep my good heart!

Left the hospital at 3:30 and got home after 4:00. I was tired but so happy with my progress that I had a hard time falling asleep!

Tuesday, May 11, 2010

Foot Pain





















I began to notice that the outside of my left foot was beginning to be sore. It started getting worse until it felt like I was walking on cracking bones, though there was no swelling. It would be better in the morning but then the pain would grow worse throughout the day. It started to interfere with my rehab.

Finally, I decided to see a foot doctor next week. While writing the blog on the weekend, I noticed when I had the laptop on my lap resting on my crossed legs, the left foot was on the floor and on its side. The weight of my legs rested solely on the side of that foot. The side that hurt. Ouch!

Yes, I was re-injuring it every morning writing the blog then continued to damage it throughout the day as I checked my other sites and followed the stock market on my laptop. No wonder it hurt!

I feel so stupid! Thankfully, I have no pain today. At least I didn’t go to the doctor before I figured it out! Cancel the doctor appointment!


Monday, May 10, 2010

Fly Away Home













Mary flies home this afternoon. We had so much fun. I think I have had too much fun!!!

We visited some friends yesterday then had a great dinner after a nice drive down the coast. We shared some oysters then had crab sandwiches. Oh, and I forgot the pies for dessert. Nice to spend a Mother’s Day with Mary, probably for the first time ever.

I phoned my mom and we had an honest talk about her future living environment. She does not want to leave her friends and doctors to live closer to my sister. I told her that was fine and that I would help her find a great place in her hometown. I guess that this year is going to be one for more changes than I expected.

After dropping Mary off at the airport, I am going to swing by the other rehab and work out for the first time since last Wednesday. It’s going to hurt!

Sunday, May 9, 2010

Concert Review












Happy Mother’s Day!

I hope that each of you is able to enjoy the day with your mom or have lovely memories of your mom. My son is out of the country on tour so I may hear from him via e-mail. Michael’s mom is here with us this year. What a treat!

The concert came off really well. We arrived early – what a surprise! –so Mary and Michael were able to claim good seats before the doors were opened to the public. The hall was packed and the concert started a bit late as they were trying to seat everyone. Nice.

We played some pieces the best we had ever played them. I was not 100% as I am exhausted but I did just fine.

I thought the highlight of the evening was the presentation of the scholarships from the orchestra to three music students from the community. One student was presented money to buy a trombone; one violin student was given a scholarship to a summer music camp and the last one awarded brought tears to my eyes.

It was presented to a young girl who played piano every week at the local convalescent home/hospital for the patients. Her scholarship application asked for money to tune and work on the piano so that she would play better for the patients. What a wonderful young woman.

My best to all Mothers on this special day.

Saturday, May 8, 2010

Mary is Here






















We have been having so much fun. Mary arrived on Thursday and we are looking forward to the concert tonight.

She has been to see her brother in Texas since she was here, so she had lots of stories to share. We ran up to Japantown to buy a pair of earrings to match a pearl we gave to her last year for her birthday. We seem to celebrate it in May even though it is in July. Once we went to see her on her birthday and it was 124 degrees. She lives in Las Vegas. Crazy. We swore never to repeat that trip.

We found some beautiful earrings and a ring! We than ran to my favorite Hong Kong resturant for Dim Sum. Mary has never tried it before but was willing to try anything. She did pass up the duck tongues and jellyfish. She was a trouper and tried lots of different foods. It was so good!

With all this, we still found time to have our toes and fingers done so they are perfect for tonight's concert! She and Michael are planning to practice their waltzing this afternoon. I am mentally gearing up for the concert tonight.

If only I had a few more hours of sleep...

Friday, May 7, 2010

Brahms, Sort of



















Often an orchestra will take a survey of their members to determine which composer they most enjoy playing. By huge numbers, Brahms is always the winner. Brahms. It took me many years of playing to totally get Brahms. He is still not one of my most favorites but lovely to play.

Although I also love to play Bach, I am a true lover of post-Romantic era music. During this period (1850-1900), composers began to write music associated with their national folk cultures. The Russian style of music began with its composers including Mussorgsky, Rimsky-Korsakov, Tchaikovsky and Borodin. Also my very favorite composers from the other areas of the world began writing music from their roots as well. Those composers included Smetana and Sibelius. (One of the piano teacher’s at my school was the great-grandson of Sibelius.)

But one of my most favorites, Antonin Dvorak was also a composer of this era. I will go anywhere to play Dvorak. I will go anywhere to play Tchaikovsky. I love to play music that has a Slavic feel to it.

My most favorite piece of music to play is Tchaikovsky’s 5th Symphony. It is very bass heavy and it is the only piece of music that we basses were not told to quiet down! It is hard. It is a blast to play. It is the one that has the famous horn concerto in one of the movements.

I will always remember reading through it the first time. We were playing the final movement furiously then turned to the last page of the piece. There, on top of the page was written PRESTO. That means: No matter how fast you are now playing, hang on because it is going to be REALLY fast. And it was. The entire orchestra was in a deep sweat when the piece was finally over.

Buy it on iTunes and listen to it. If you listen really hard, you may hear the final page turn when every member of the orchestra takes a deep breath to gather enough strength to make it to the end.

Thursday, May 6, 2010

Surgery and the Family Curse










Photo of the best hams - a Honeybaked Ham. My mom's favorite!

Mom’s cancer surgery was Tuesday. We arrived early bearing Mother’s Day presents, some Honeybaked ham with a bone for making soup and a pound of my famous Sugar-Glazed Walnuts. Yes, I am trying to put some weight on her!

We left home well before dawn and got to the doctor's office early. Being early is a curse in the family that goes back generations. At the age of 18, my mom’s maternal grandfather was a striking young Irishman who was late and ran through the train yards in Chicago when something happened. Mom never learned the full details, but he lost a foot.

From that point forward, he never hurried and made sure he was never late again. For anything. The curse has followed everyone in the family since then. In fact, once one marries into the family, they too are no longer late. Ever.

The railroad gave him a job for life and mom tells stories about how he would leave his wooden leg under the bed at night. Yes, wooden. Imagine how uncomfortable that was? He walked with the help of a cane when he was older.

So, we were early to the doctor’s office, naturally. It all happened in a small office where the doctor would slice a piece off the cancerous area, test it to see if the cancer was even deeper, take another slice until the slice was free of cancer. Mom needed two slices, others in the office needed up to 5 slices.

We had so much fun. We got to know the other five people also having cancer removed from various areas of their bodies. We kept everyone laughing all day. We arrive at 8:00AM and left just after 5:00PM. It was a long day. Mom is recovering and will have the stitches removed in a week.

She told us that she is ready to give up her house and move into an independent living environment. I passed this along to my sister and brother. My sister is the executor of the estate and will need to be close to mom, as she gets older. She also lives in a less expensive area so we will begin a search for a place for mom in her town.

Last night was the orchestra dress rehearsal and I am feeling pretty good about the concert. We will be fine. Dress rehearsals don’t mean that everyone dresses up; it means that the rehearsal will be a run-through of the all the music in concert order with very few stops. The threat of a performance makes everyone focus and play their very best.

Mary flies in this afternoon.

Here we go!

Wednesday, May 5, 2010

Dress Rehearsal

































The dress rehearsal for the orchestra is tonight. Working with the other bass player will be a challenge. I am used to playing alone.

The concert line up is:

  • Invitation to the Dance by Carl Maria von Weber
  • Capriol Suite by Peter Warlock
  • Swedish Dances by Max Brunch
  • Danse Bacchanale by Camille Saint-Saens
  • Emperior’s Waltz by Johann Strauss

Yes, it is basically a dance concert. The Capriol Suite will also include a performance of Renaissance dances. It will be fun to watch. This is the piece of music that I am most concerned about because it appears easy on the page but is difficult to play correctly.

The hit of the evening will be the raucous Danse Bacchanale (French spelling). You have heard parts of it if you have ever watched old cartoons. Four high school kids have joined the percussion section, which adds to the excitement. It is one great piece of music, a real challenge to play and very satisfying.

The Strauss. Ask any musician and they will moan when a Strauss waltz is mentioned. It is a bit dull to play. Audiences love them. There will be several couples from a dance class at the rec department who will rise and begin to waltz. They will then turn and invite others to join them. Hopefully, the entire room with be dancing by the end of the piece.

Michael and his mom will practice waltzing before the concert!

Tuesday, May 4, 2010

Girls Softball












Our neighbor was a huge kid. She was extremely tall for her age and just big. She has two older brothers who are both extremely good athletes but both her parents agree that she is the best in the family. College scholarships are definitely in her future. She wants to go to Stanford.

She plays volleyball, basketball and soccer but her true passion is pitching softball. She is extraordinary. When she was younger, she wanted to go on a diet. NO! She would lose a lot of her pitching power. Finally, she continued to grow, matured and naturally slimmed down.

She is currently a freshman in high school and is playing in a higher-level league as well as her high school team. Her parents invited us to watch her pitch at the local school.

So, that is where I found myself on a recent late afternoon.

I dressed in a long-sleeved shirt, heavy kit jacket, raincoat and brought along a heavy poncho. Ha! It was a sunny day and there was no wind up on the campus where wind is a constant issue. For the entire game, I sat in my t-shirt, enjoying the game and the sunshine.

My neighbor’s team was at home so she pitched first. Having never seen girls softball, I thought that she was pretty good. It wasn’t until the other team’s pitcher threw her first pitch that my jaw dropped. By comparison, it looked like half speed.

It was at that moment that I realized that my neighbor was a truly extraordinary pitcher.

The final score was 6-1. They are at the top of their league and have lost only one game the entire season. It’s the pitching.

I sat in the sun, cheering on the team surrounded by friends and even made a few new ones. At one point I had to smile at the thought of me sitting there between 4-6PM enjoying once again doing something outside of my normal routine.

Monday, May 3, 2010

It May Just Kill Me


















My calendar. It has gotten crazy. There are busy times ahead and it may just kill me. “What did she finally die of?” they will ask. “Her calendar done her in,” will be the reply.

It will be a long day tomorrow with my mom having same day surgery including a total of four hours of travel time. I really want to be with her.

Wednesday night is the final rehearsal for the orchestra concert on the 8th. It is a must. They hired another bass player to play with me so I have to go over all the music and stress the dynamics. I have played with him before and he doesn’t pay attention to dynamics. It is going to be more stressful than if I just played alone but they had a two concert contract with him before I arrived on the scene.

Thursday, Mary will fly in for her five-day visit primarily to see the concert on Saturday night. The housekeepers have the week off so somehow I have to dust and vacuum the house. She stays until Monday.

My much-anticipated appointment with Dr. K is on Tuesday the 11th. I have been pushing it so much lately that I am coughing. Not a good sign. I hope I feel back to normal before my appointment.

On the 13th I have tickets to see the play “In the Heights” with my friend Christein, which always includes dinner somewhere. We never get home before midnight.

We have missed both birthdays of our dear friends so we are taking them out to dinner on Friday the 14th. Their calendar is even crazier than ours and this was the only date they had free until mid-June. So looking forward to getting caught up on what is going on in their lives.

The following week, we are sneaking off to LA for a few days. I think I will be in a catatonic state.

After all of the above, my calendar is empty.

Blank.

Nothing but glorious nothingness.

HALLELUJAH!!