Living Well with a Bad Diagnosis - Lung Disease

Tuesday, August 31, 2010

Vegas, Baby, Vegas

The arrangements have been made. We are driving to Las Vegas in late September with my mom. It is her birthday present from us. She is thrilled. She loves to gamble and is so looking forward to a vacation.

When I made the reservations, I requested connecting rooms. The woman said that she would note that Mom is incompetent and needed our assistance so we would be assigned connecting rooms. Ha! I laughed! Please don’t have that written anywhere my mom could read it. We began to talk about our moms and had a fun conversation.

Betty and Chip are meeting us there but they will be on the smoking floor!

Michael’s mom lives in Las Vegas. Our annual trip routine is to arrive in time for an early dinner then we gamble until midnight, sleep in, have breakfast delivered to the room, meet Mary at the hotel entrance, sit and talk then take her to a nice lunch. Afterwards, we usually find a lounge and chat for a few more hours before putting her in a cab for home. We then have dinner, gamble a bit then head to bed. We leave early the next morning. Too much time in Vegas is not a good thing.

For this trip in September, we still plan to have a great lunch on the second day with everyone including Mary but afterwards I think Betty, Chip and mom are going to take off to do some serious gambling. Mom will be in heaven. She is known not to eat at all while in a casino as it wastes time. Since we are going to be there for a few days, we will insist she takes some time out to eat. She is also known for leaving the hotel room about 4:00AM to get an early start to her gambling day. This is a real vacation for her. She will be so happy. I hope she does well.

Monday, August 30, 2010

Back to School

It usually began around the first of August - the quiver in the pit of my stomach. I would begin to count the days before we had to be at the school for workweek. The new school year. Back to work. Back to working 12-15 hours a day, six days a week.

I loved my job but reflecting on the work ahead for a whole new year was a bit overwhelming in August. By September, I was back in the saddle and off we galloped.

Since I have been gone, the first year was the very hardest. I deeply missed the children. At the rehab class, the gym overlooked the play area of a school so I was able to watch the kids at recess. It helped so much but I still felt like I was being left behind.

But, a funny thing happened. When the following August came around, I realized that I had no quiver in the pit of my stomach. I really didn’t miss the hours or the administration of it all.

Time moved on and this year is the first time in many years that I am longing again to be at the school. Impossible, of course but still...

What probably brought this on is that the local school started this week and all the parents we know were sending their kids off for their first day. It was a bit sad. I wish I were still in the game.

Sunday, August 29, 2010

37 + 58 = Happiness

My calendar somehow got crazy again. With Dreamgirls, followed by an early morning breakfast with a dear friend followed by a party at Rick and Natalie’s house to celebrate our anniversary and Michael’s birthday, I am done.

Next week, our 37th Anniversary is Wednesday, September 1st and Michael’s 58th birthday is Friday, September 3rd. He loved the dates being so close together because he said he would never forget our anniversary!

One year, when I was working at the school, Michael surprised me on our anniversary when I arrived home from the school’s workweek. He was dressed up in a sports coat and nice slacks, had bought a CD of music from 1973, and set the table for dinner. It was the same menu as the picnic we shared together all those many years ago when we were dating. He even found the horrible wine we used to drink. It was truly awful but fun to discover that our tastes had become much more refined.

What was the best is that he brought out our wedding album. We had not looked at it in probably 20 years. We roared with laughter. Were we ever that young? Did we really have such horrible style?

We danced and sang to the music, sipped the wine then ate French bread with salami and cheese and some fruit. It was so thoughtful and sweet.

Usually, we go out to dinner to celebrate his birthday or our anniversary and I cook something special for the other day. For years, I made Ming’s Chinese Chicken Salad for our anniversary. I learned to make it years ago and just might share the recipe. It is the best.

Mark and Marianne gave Michael a gift card for dinner at a really nice restaurant as thanks for rescuing them in Oregon. This year, we are planning to celebrate Michael birthday there. I just don’t know what to cook for our anniversary dinner yet as it usually is a decision we make together. I like to get his input. Guess that is one reason we are still married!

Another year. Another year grateful that I had another year.

Saturday, August 28, 2010

Dreaming of One Dreamgirl

What a night! We ran into a bit of traffic on our way to dinner at the Grand Café near the theatre to see Dreamgirls. Christien loved her salad of heirloom tomatoes followed by the fish special. I chose a wonderful special of a small chicken over gnocchi covered in an heirloom tomato sauce. We were even gifted with a box of cookies for intermission – Christien commented that the waiter was flirting with me!

We walked the half block to the theatre and arrived within five minutes of the curtain raising.

The musical was great. The wigs and costumes were magnificent. The actors were all wonderful.

When I was young, I learned to sing and expand my range by singing along to Broadway show albums. I had a good voice but an underdeveloped head voice. That changed when I began to sing with the choirs at the school, which really expand my range.

I could sing. I sang for lots of weddings and one funeral. It was fine.

But my inner secret is that I would give anything to sing like Aretha Franklin. I loved her as a teenager. I adored her as adult. I love her effortless vocal gymnastics. It is not only Aretha; it is that style of singing that I love. I also love to listen to a young Whitney Houston. What a voice. So sad it is gone. I always wanted to sing on an empty stage in a tight spotlight and sing like them. From my guts. From my soul.

I clearly do not have those chops. I clearly do not have that type of voice. Damn.

So, last night the musical was fine but there was a moment, which sent chills up and down my spine. I will never forget it or her.

Her name is Moya Angela. She played the role of Effie White, the Dreamgirl who could really sing but unfortunately did not look the part…the Jennifer Hudson role in the movie. Let me tell you, this woman can sing. I can’t imagine performing her role six shows a week.

Just before intermission, she had been thrown out of the group. The stage was cleared of everything. She came downstage, stood in the spotlight and sang the famous “And I’m Telling You I’m Not Going” wearing a simple shirt and slacks. But it was so much more than just singing. I have never seen anything like it in my life. She had the entire audience in the palm of her hand.

She took us on a ride with her. I really can’t describe it any better. People were on their feet before she was finished. I will remember her performance of that song forever.

Remember her name. Moya Angela.

Friday, August 27, 2010

Dreamgirls and DreamWorks

Christien has wonderful tickets to the latest plays and musicals in the city. Expensive productions. Her tickets are usually $85.00 each.

We have seen so many shows together because of her having these season tickets. Some were excellent shows and some just stunk! We were at the opening night of Legally Blond before its Broadway run and Wicked before and after Broadway. So many more.

Tonight we are going to Dreamgirls. We have reservations for dinner near the theatre at The Grand Café where the car will be taken care of until the musical is over.

Also tonight, I was invited to join Michael at DreamWorks. Yes, that DreamWorks. It will be his second time there. Last year, they were hosting a car show of their employees and Wayne’s friend, who works there, asked if Michael could bring some cars. So, he arranged for about eight of the cars he finished to arrive together. Fancy cars. Very rare and expensive cars. Everyone was stunned. They were a smashing success. Michael told them that he would bring better cars this year. And he will.

Last year, they were given a tour of the entire facility and were talked through the process of producing animated films. They even were given a present for coming. Nice people.

So tonight, I will be at Dreamgirls while Michael is at DreamWorks. Too cool.

Thursday, August 26, 2010

Hairy Situation

I had to leave my hairdresser after over twenty years. While he has been out of work with his back injury since January, a woman in his shop has been doing my color and cut. Michael turned to me about two weeks after my last appointment and said, “I hate your hair.” He has never made such a comment our entire married life.

Michael’s hairdresser is wonderful. I go to his appointment with him and all three of us chat the entire time. He says that she works on his hair longer if I am there.

So, I called her and begged for help. I was in her chair the next day.

“How far are you willing to go?” she asked.

“All the way!” I said.

It is now short with chunky highlights pushed back behind my ears. It takes the focus off of my moonface. It is amazing. It works.

Michael loves it.

So, I went to her again for my second cut and color yesterday but I just heard from my old hairdresser that he is now back and taking a small number of clients.

What to do?

Wednesday, August 25, 2010

Hot Weather - Can't Breathe!

Heat hot. Hot weather. We who live along the coast love the cool evening ocean breezes, the fog that seems to hang on all summer and the mild winter temperatures. It is often 15-20 degrees cooler than the other side of the hill during the summer months.

But, it was hot yesterday. Unusually hot. It was 91 degrees here along the coast and it was nearing 100 on the other side of the hill.

I went over the hill to the rehab class yesterday, one of only eight people, and the air conditioning system was broken. No fans, either. People with lung disease need a cool environment with air movement. The air was slightly moving but it was all hot air! Not what we needed! The RNs told us to cut our time on each machine, drink plenty of water and not push too hard. It was difficult and I left totally soaked in sweat.

From there, I drove to the butcher shop and Trader Joe’s because we were totally out of food. It was a struggle. Driving home, the traffic was slow as everyone was heading to the beach to cool off.

So, I finally got home in the late afternoon, unpacked all the groceries, placed the three new garden plants I had bought that morning, then opened all the windows. It felt great. I needed some oxygen to recover from the day, which is very unusual for me.

The heat is exhausting. I just can't breathe. I plan to stay in tomorrow to recover.

I am so looking forward to the Fall!

Tuesday, August 24, 2010

Double Rainbows

The photo above is from the Internet but most closely resembles the intensity of color of the double rainbow I saw over the lakes in the watershed.

I really want to add one final story about my Uncle Bill.

On a whim, I phoned him in December of 2008. He always called us on a Sunday morning, we had not heard from him for a while and I was growing concerned.

His stepdaughter, Pam answered the phone. She told me that they were going to call me when they had some news but Bill had fallen down the stairs, was on life support and they were doing tests on his brain. I asked that they let me know when he died. She promised to call.

I shared the news with my family and then cried. He and I had talked often about my dad’s death and he really did not want to be on life support.

No phone call came.

The next day, I drove to the other rehab and crossed the bridge where I had first spotted the rainbow I felt was from my dad over an area he loved. I had asked for a sign that he forgave us for removing him from life support.

That morning, there in the same area were TWO rainbows. A rare double rainbow. The first one I have ever seen in my life. I pulled off the road and stared to be sure I was actually seeing what I thought I was seeing. One rainbow was bright and vibrant and the other was soft and delicate. They were side-by-side.

I knew at that moment that my Uncle had died and was with my dad.

The phone call came later that evening.

Monday, August 23, 2010

Book Number Two

Okay, I am now into book number two in the series of three of the Stieg Larsson series. It is “The Girl Who Played with Fire.” I ended up loving and being unable to put the down the first of the series.

Yes, I am hooked. My new heroine is a 90-pound punk girl with eight tattoos, a photographic memory and issues. It is those issues that make her so interesting. Someone told me that these books are like the Harry Potter series but for adults. I can understand the correlation. Like all the kids in their Harry Potter costumes, I will need to dress as Lisbeth Salander for Halloween. Hmmmm. Maybe not. I don’t have the body or tattoos.

As it is a smash hit, I fear that there are going to be a lot of similar but second rate stories suddenly appearing in the book stores – sort of like the tons of new vampire stories after the Twilight series ran its course.

I have tried to slow down my reading. I don’t want to finish the books. But, just give me ten minutes and my nose is back in its pages.

Again, get through the first 100+ pages of the first book and join me in this divine addiction.

Sunday, August 22, 2010

Romance and Trouble a'Brewin' in Rehab

Barbara came to rehab recently and gave Sherman a card. It was lovely. It was sweet to watch them greet each other with a little kiss. Clearly she is waiting for him to take the next step.

Apparently, Barbara had fallen down and was not allowed to stay to work out.

Sherman, Dick and I held a conference on the recumbent bikes and we told Sherman that he had to send a card to Barbara with an offer of coffee or stronger! We also suggested that if he didn’t, Dick and I would bring in a card and help him write it! We all laughed.

I worked out. Then I joined others waiting to be checked out. So, there we sat in a row waiting for our vitals to be taken and dismissed. Sherman, Kathy, Doris, and me.

Sherman is dismissed and takes off for home. Musical chairs. Amelia usually works the front two chair at a time so there is a lot of leap frogging into the seats.

While I was sitting next to Kathy, I told her to watch and that before we would be checked out, Doris was going to make some nasty comment to me.

Kathy is moved into the first chair, she is checked out and gone. I am now in the first chair with Doris next to me. I was talking with the beautiful Amelia, who was taking my vitals, and Dick about Sherman. We told Amelia that we threatened Sherman to send Barbara a card or we would! She said she loves to be a part of it as it is so lovely and sweet.

Not good enough for Doris. “What? What are you going to do?” I explained that were teasing Sherman that we would help him send a card to Barbara.

She replied, “If I were him, I would tell you to keep you damn nose out my business.” Nasty. I softly said, “You don’t understand our relationship.” And then she got agitated and screamed, “Oh yes, I do! Yes, I do! I have known Sherman a lot longer than you have and you have no right to involve yourself. I know him. I know him really well.”

This from a woman who has not been to rehab in almost 3 years.

So, in the lobby waiting for the next rehab class two days later, I explained to Sherman that he is in the middle of a controversy involving three women – Barbara, Doris and me! He laughed then said she knew him from the rehab class before I came but just barely.

As we waited for the class to begin, I was growing anxious knowing I was going to see her. She didn’t come to class. Absent.

So, my plan moving forward: to stay away from her.

If all else fails, I have planned a polite response in a polite tone to any of her comments: “I have noticed that you make a nasty comment to me every day in rehab. I don’t know if you realize what you are doing but please stop.”

I know it won’t stop her so I have backup.

The RN of the rehab class has told me if Doris doesn’t stop after my pointing it out to her, the RN will move her to a later time of arrival. That will take care of it all.

I swear I am back in high school.

Saturday, August 21, 2010

Mom's Birthday Visit

Tuesday was mom's 82nd birthday. Michael drove her to our home for a four day celebration. I was a bit worried about this visit. It was the first time we would be together since we saw each other at my sister’s house. I suspected I would hear all about Chip’s smoking and Lee eating bread and I really didn’t want to hear it.

When they were in the car together, Michael pointed out to her that all her children have succeeded on their own and live good lives. The grandchildren are all fine and living great lives. She needs to remember the larger picture and not focus so much on the small things that may bug her.

She stayed positive the entire visit.

The most beautiful weather in months suddenly appeared just for the one day on her birthday. We sat outside to enjoyed every minute of it and talked until 6:00! Even Ron and Susan came over to share some wine with Michael.

My job was to be sure she ate while she was here. For her birthday dinner, we BBQed two racks of lamb served with a salad of heirloom tomatoes, roasted rosemary potatoes and asparagus followed by a homemade chocolate cake covered in chocolate ganache and pralines. Oh my.

She cleaned her plate!

Wednesday, we drove down to the Santa Cruz county line to see the wind surfers and just breathed in the cool, clean air. We said a quick hello to the Elephant Seals at Ano Nuevo then split a chicken sandwich at Costanoa. Perfect. That night, we served her very favorite dinner: hot dogs, cole slaw and cranberries. Cleaned her plate once again. We even had leftover birthday cake for dessert!

On Thursday, we went to our favorite store on earth. We shopped and both of us found cute clothes for our upcoming Las Vegas trip. We chatted with the most interesting people. One woman just found out she needed a knee replacement and was reeling from the news. We talked for just minutes but I think I made her feel a bit better about it all. Another woman stopped us and began talking about her MS. We must have talked for 20 minutes! So strange how they were drawn to us.

We arrived at Mom’s yearly appointment right on time. The nicest woman and her 15-year old daughter sat next to us and so, yes, we started talking together. Well, after mom was called in to see the doctors, we continued to have a conversation. The daughter was delightful and was fighting a rare disease. She was in great spirits. Great kid. Great mom.

Mom passed all of her tests and the mycosis fungoides has not returned after 20-years. She is amazing!

That night, we had leftovers and some scrambled eggs for dinner. Our friend Wayne and his two handsome teenage boys dropped by. Thankfully, they finished off the cake! My mom once again fell in love with them. They both have the ability to engage in an interesting conversation with anyone about anything. They are such great kids.

So, I drove her home yesterday, enjoyed a bit of sunshine then drove back home into the fog. Yes, it is back. Again. Nuts!

Friday, August 20, 2010

Boston Med

Have you seen it?

I find it absolutely fascinating. It is a new TV show that follows several doctors, residents, and patients at three of Boston’s world famous hospitals. What makes it so different from other shows is that it follows up on all the stories– I noticed up to a year later – so we are shown what happened in the long run with all three of these groups of people.

It is filmed while it is happening. Not everyone survives. Sometimes it is really hard for me to watch.

One recent show featured a wonderful woman cardiologist who had developed a lovely friendship with a man and his wife. He needed a new heart to survive and she fought for him to be placed on the transplant list. She then fought to get him to the top of the list.

He waited for a new heart but began to quickly deplete.

While they were filming, his nurse broke into the conference room and said his heart just stopped. We all watched as they revived him enough for his entire to family to talk with him to say goodbye. He and his wife thanked each other for a wonderful life. The cardiologist just stood and watched with tears in her eyes. I was also crying.

He died. He was such a lovely man and so young to die. There just was no heart available.

Often, the stories have better endings. Last week, it followed a baby who was born with a heart defect. After surgery, baby Michael was not improving. Three months later, it was determined that the surgeon made a error. The baby had corrective surgery and he was recovering and being sent home. The parents had no anger. This is medicine. This is not so much as a science but an art. They were thrilled that their child who they told would be blind and have other issues was fine and going home that day.

Life and death in one episode. Just like real life.

Thursday, August 19, 2010

Not Board

I did a stupid thing.

I went to the dentist and found out that she is now the head of the board of the little local orchestra I played with last season. We talked. I gave some opinions and suggestions. She asked that I put them in an e-mail to her.

What I have observed is that they need to work on their choices of repertoire to maintain the large audience that was present at the last concert. The number of people was a surprise to everyone. Proof that there is an audience for classical music here on the Coast. We just have to keep them coming.

With that in mind, I was rather disappointed that the next concert in January will feature Brahms, Beethoven and Copland. All very nice. All very good. But, is this what you want to follow a well-attended concert of classical dance music? Many members of the new audience will return for one more concert but will they then attend another concert ever again?

Wait. It gets worse. There is a proposal that the May concert will feature a Schubert Mass. A Mass. Good for sophisticated audiences but not here. There will be few people in attendance after that, then we will have to re-build to try to get an audience back.

So, what I proposed is to plan ahead for a series of concerts for the next two or three years thinking of terms of balance for the audience. I didn’t want them to think that I am talking about Pop Concerts – which I really hate to play. I do not want to dumb down any music for any audience but we can be more creative in our choices. For example, advertise classical music everyone has heard but may not know. For example, every movie trailer recently features Wagner’s “Flight of the Valkyrie” or Carmena Burana’s “O Fortuna.” In other words, we are educating the audience but they have already heard the music.

I also want to bring back a short Children’s concert in the library at 10:00 on a Saturday morning. Let’s grow the audience.

Sound good?

Well, here comes the stupid part.

I opened my big mouth. I think I am going to be asked to either sit on the board or at least work on a committee to choose repertoire.

I may have to duck and weave. I really had so many committees and task forces and meetings at the school that I swore I would never go another one for the rest of my life.

Note to self: Keep your mouth shut.

Wednesday, August 18, 2010

In the Beginning

One morning, I was in elevator at the other rehab going to the 6th floor gym. It was September 2009. Another woman in a white coat joined me. She was very tall and pretty and looked so very official. I assumed she was a doctor.

She asked about my oxygen system as we both got off on the 6th floor. We stood for well over 20 minutes and talked about my illness and how it was dealing with a fatal disease before she handed me her card. She was a nurse but one who dealt with end of life issues. We said our goodbyes. The end.

Not quite.

Just over two weeks later, I was in a full sweat as I hopped onto an elevator heading home after working out. There she was in the elevator. Dana. We greeted other like old friends and stopped to talk in the lobby. She had been telling so many people about our previous conversation that she wanted my e-mail before we said another word. She didn’t want to lose me again. It was one of her final days as she had taken a new position at a different hospital. It was just a fluke that we ran into each other again.

She wanted me to consider writing everything down – everything we had talked about. Starting at the beginning. Talking about the process. It needed to be shared with others facing similar issues, not just a lung disease.

A blog.

I am a very private person. I didn’t want to be sued by the school. I had to swear on the record during the Head’s deposition that I would never discuss any of it with teachers, former teachers, parents or former parents of the school.

How can I write about it without exposing the Head, the school and myself? Am I really willing to toss my life into the vast void of the World Wide Web?

Dana suggested that I write it anonymously. Brilliant.

My bottom line was that I wanted to be honest which was so much easier to do without my name attached. I do not allow family and most friends to even know about it. I would have to edit my comments otherwise.

So, dear reader, today’s blog is number 314 and I am closing in fast on one year of blogging. I am considering having it bound for William’s children. They may get to know me only through these blogs, which was never the intent in the beginning.

Thank you, Dana. You changed my life.

Tuesday, August 17, 2010

Uncle Bill

This blog has been a long time in coming even though I have written so much about my dad’s brother’s life in previous blogs. There is so much I could say about him but I will try to capture his essence.

Bill was the third child born 21 months after my dad was born. They were inseparable as children. Dad would take him alone into Chicago on the streetcar when he was five-years old and Bill was only three! They had the whole city to themselves. Freedom to roam.

They were a bit mischievous. Okay, maybe a lot mischievous. One summer, they just couldn’t take the oppressive Chicago’s heat of summer for another minute, so they flooded the basement of their apartment building to make a swimming pool. They move shortly afterwards.

Bill was willing to do anything my dad said. Once my dad told him to put his finger in an empty light socket. Dad demonstrated, with the power off, then prompted Bill to try it. As he attempted it, dad would flip the switch. Zap! He actually talked Bill into putting his finger into that socket several times. That was their relationship.

During the war, dad was sent to the European theater while Bill was sent to the Far East. He was about 6”2”, which was considered tall in those days, and assigned as a turret gunner. These poor souls were encased in a bulge below the plane so they could shoot. But, they were also very exposed.

Years before he was died, he told my parents about what happened during the war: They had been on a mission and were having engine problems as they had been hit. The plane was going down and would land in the water. The exit from the turret was damaged and they could not get Bill out. He was also injured. If the plane went down in the water, he would drown. This scenario played out for a terrifying amount of time. The pilot did not give up and they were finally were able to limp back to land. Bill told mom and dad this story with tears in his eyes when he talked about how all the others took a chance on losing their lives just to save him.

(During the hurricane years later, as he sat in the tiny space in the darkness, this caused him to remember this vividly as the feelings of helplessness were so similar. He had an emotional breakdown. We had long conversations about it. It scared him. He was on anti anxiety medication for the rest of his life.)

After they finally landed, he had many injuries including shrapnel in his legs. These injuries followed him all throughout his life and gave him a definite limp.

He was evacuated to a base in San Francisco. He was depressed and feeling very low. What he didn’t know was that the family, at great sacrifice, sent his mother from Illinois to San Francisco to be with him. When he saw his mother at the doorway, he was sure he was seeing a vision. From that moment on, he was no longer depressed. Makes me cry just thinking about it.

After the war, he went to Northwestern University on the GI Bill for a very brief period of time. When he applied for and got his job with a major corporation, they asked where he had gone – not graduated - to college. “Northwestern,” he said. When he retired as very wealthy man who sat on the boards of many corporations, they announced that he was a graduate of the great Northwestern University. All those years and no one ever checked!

He had moved to Tennessee for business as a young man and I remember him as a person who looked a bit like dad but had a twang. I was fascinated. As a child, I studied him.

He and Marie never had children. Well after his divorce, he met a lovely woman who he was married to until the day he died. She had a daughter from a previous marriage. It just was not the same. He really didn’t understand my parent’s relationship and that dad clearly placed his family ahead of his career. This never happened to Bill. Business always came first to everything else.

After dad retired, they all spent more time together in Florida. Bill paid for several cruises for them and was so very generous to my parents.

The final decade he worked, the corporation sold off some of its properties. As part of the deal, Bill was to be CEO of the newly formed company or there would be no deal. He accepted and loved not having to answer to anyone but the Board of Directors. He was in his element. I remember that they paid him $1M signing bonus every year he worked over the age of 65. It’s tough to turn down that kind of money. He worked for several more years.

Alma, his wife, told me that he had no popular knowledge –no books, movies, TV shows, music – anything. The business channel was always on the TV. He worked in his office at home.

Bill could be gruff and tough but as he grew older, we realized that he really was a very tenderhearted and very generous man. I will always have great respect for him and all the wonderful things he did for his mother and sisters. He bought his mother her first home. He never accepted but brushed aside any applause or thanks.

After Bette’s services, he called to tell me about it. I said to him, “I know that you don’t like to talk about this but you have been an amazing brother to your sisters all of their lives.”

There was silence and, for the first time ever, he finally accepted a compliment. Very quietly he said, “Thank you.”

We were in Chattanooga in May of 2009. One of the reasons for the 6,000-mile trip was to visit my Uncle Bill’s grave. I promised him that I would.

Monday, August 16, 2010

Rehab Class Update

Barbara came to the rehab class. We all greeted her but were rather surprised by her appearance. She was moving so poorly and actually had an assistant to help her walk as well as drive her to all of her appointments.

This is a woman who was so trim and active just two years ago and is now so heavy – due to the drugs – and depressed – due to the drugs – and is in such poor health. She is embarrassed by her appearance. We all told her we were happy to see her. So, she is back. Her doctor is insisting on it. We hope she continues to come to class. (She has fungus in her lungs, which continues to grow, which also makes it harder for her to breathe. Anti-fungal drugs are horrible and not working plus she is on a large dosage of prednisone.)

Sherman seems to be getting more and more healthy by the day. The sleep apnea is under control and he is feeling great. He is laughing a lot and just plain fun. I tend to forget that he is 85-years old. So young.

Dick is keeping us all fed. As is wife continues to not address her health issues, he heads to the kitchen and hauls out the pots and pans. Michael is in heaven.

Anne, the woman I talked about who kept standing me up at the other rehab, is back in the class after being gone for many months.

Doris, who she used to hang out with, is also back after being out for a couple of years. They are once again best friends. Both have depression issues so they spin each other out of control. I politely try to stay away from them. So negative.

Doris does not like me. “Why do you sweat so much?” she asked last Thursday. I replied that I want to sweat. If I don’t, I add time or speed to my workout. “I never sweat,” she said. I made no other comment but my inner voice said, “Maybe if you went faster than 1.5 miles per hour on the treadmill you might get a real workout!!!” Instead, I just smiled.

She usually makes those types of comments in front of a lot of people trying to embarrass me. When Sherman and I tease each other, she thinks I am picking on him and defends him to me. She doesn’t get it.

Sherman doesn’t like her either.

I try to be kind to her, as I know she has a lot of issues.

Sunday, August 15, 2010

Black Thumbs/Black Orchid

As you know, dear reader, I love to garden. What I am not so good at is houseplants. I tend to kill them. I tend to forget them. I don’t know why. Just a fact.

Our friend Don loves orchids. Before his divorce, he used to have hundreds in a greenhouse. He and the orchids moved out and, for a high fee, he paid someone at an orchid warehouse to take care of them, as there were too many for his new loft. Apparently, they are all about the proper water, food and light. They have always been a mystery to me.

A few years later, he went to check on them only to discover that most were stolen, dead or neglected. He removed the remaining ones and brought them home to his loft. Last year, he gave me three of his babies, ah, orchids. I had to be a responsible mother to these plants. I haven’t killed them yet but they certainly have suffered neglect.

Then, a miracle happened.

The top photo is of a rare Black Orchid. It is in bloom! My first one! My baby!

The next photo is of an ordinary one beginning to produce a bloom. It is also is my first one for that plant. The other orchid is just hanging out having fun. No flowers.

I now have begun to pay attention to them. I am watering them more often, feeding them, adjusting the light and will probably end up killing them with all this attention.

My black thumbs have suddenly turned green!

Saturday, August 14, 2010


Things that make me happy:

Michael laughing

The smell of my son

Foghorns at night

World Series of Poker

Good music – any genre

Ironed sheets

My gardens

First night in Las Vegas

Smell of a baby

Planning a road trip

Mad Men and Breaking Bad

Breakfast in a tiny town in the middle of nowhere

Good health

A very bad joke

Sleeping in


The smell of coffee in the morning

The Giants

A great book


Lunch with friends


A clean house

So much to be happy about. So little to whine about.

Friday, August 13, 2010

Dragon Tattoo

Okay, I got hooked. I swore I wouldn’t. I did.

Carol in the rehab class loaned me two large paperbacks of “The Girl with the Dragon Tattoo” and “The Girl Who Played with Fire.” She warned me that they were like a drug and that I would not be able to put them down. I swore I would keep them as treadmill books – only to be read at the gym.

For those non-readers, Stieg Larsson wrote a series of three books – the hard cover of the third book is in stores now – delivered them to the publisher then promptly died. There is a Swedish movie made of the series, but alas, it is in Swedish.

The first 50 pages were weird. It was hard to remember all the Swedish names and sentences were often impossible like the ones towards the bottom of page 64. Finally, I realized that it was all a set up for what is really a multi-layered murder mystery. A who-done-it.

At the moment, I am on page 200 and am hooked. It is in the house and I am sneak reading it during commercials, before I get ready for bed, while waiting for the mail, ten minutes before I have to leave for rehab and while I eat lunch. Oh, and the treadmill, too.

I have ordered book number three – “The Girl Who Kicked the Hornet’s Nest.”

If you are up for an unusual book full of unusual characters, it is an interesting read.

Thursday, August 12, 2010


I don’t know.

I just have this feeling like I am in a waiting mode. I don’t know why.

I don’t feel like I am moving forward or in any direction.

Stalled. Waiting.


  • Life is very slow at the moment as I am waiting to feel stronger.
  • Michael is waiting for another shop to come together.
  • I am waiting to see William.
  • We are waiting for the end of the summer-long yard project.

Wait! Stop!

I hate waiting but I have learned not to push when the timing is not right. That is so frustrating for me. Another learning experience. Just waiting.

Wednesday, August 11, 2010


I am so happy that we have no lawyers in our lives anymore. It is never good when you have lawyers on your cell phone’s recent call list.

Mark and Marianne are beginning the process after his serious auto accident in Oregon. We talked recently about how law, like medicine, moves at a snail's pace. Can’t fight it. Just is.

Their case will never go to trial but the lawyers are going to want to depose both Mark and the driver then play, “Let’s Make a Deal.” He says he wants his medical expenses covered and reimbursement for his loss of income. There is also a concern over possible long-term affect from the accident like headaches.

The process is beginning. I shared with them what I have learned:

  • In a deposition, I thought it was your chance to get your side of the story on the record for the judge to read. What I learned is that you expose your hand to the other side in doing so. The smartest of people answer yes or no in a deposition. If one has to answer a question, do not elaborate; simply state the fact in a sentence. No long explanations.

  • I also learned never to answer in a sarcastic manner. Everything is written down, not recorded. Example: “Yeah, right” said in a sarcastic manner appears on the record as “Yeah, right,” as in, “You are correct.” Bad.

  • I realized about half way through the process that I was the meat they were fighting over. Who I was and my story were secondary. It is not personal. It is business. Keep emotions out if it. It only makes you say something that you really don’t want on the record.

In his case, Mark will do well in a deposition, as he has no memory of the accident or the following four days. They will still try to get him to “guess” how he would have reacted to something but his lawyer should shut down that line of questioning.

Last week, I suggested to Marianne that it would be wise to begin several lists on their computer:

  1. List of all out-of-pocket expenses – co-payments, etc.
  2. List of all physicians and hospitals, their names and addresses
  3. List of which doctors he saw on what date and what was discussed.
  4. List of medications and when he began or ended taking them.

It is funny how quickly it all becomes confused.

One of the reasons I was able to negotiate a settlement is that I had kept amazing records. I encourage anyone with a major disease to try to update their medical history. I still keep a list of my medical costs for my taxes, medications and doctor's visits.

So, Mark and Marianne begin. It is a process that moves at its own slow pace. I predict that they will settle in about two years. We’ll see.

Tuesday, August 10, 2010

Rumors of a Visit

There is a rumor that we may get a visit from our son. Sons. They certainly are not daughters. Talking with other parents, he is quite typical. They grow up, are the independent people we raised them to be and they take off to live their lives. Damn. Daughters, on the other hand, tend to stay more in touch. They allow their parents to be somewhat involved in their lives.

We have a son. We are thrilled anytime he phones or comes to visit. There was even a mention of a girlfriend coming with him. This is good. Last year, he broke up with a woman after four years together. I am so happy he found someone he is willing to introduce into our family.

He once said that he would only marry someone who would fit in with us. I told him that it is more important to marry someone for him, not us. We don’t have to live with her! He has great taste in women. They have all been very smart and strong. They also are similar in appearance: very pale skin and dark brown hair. Wouldn’t it be funny if he married a blond haired, blue-eyed woman?

He begins a new tour featuring a woman from New York beginning mid-August so hopefully he will be here before that tour.

His sheets have been ironed, I put a new feather bed on his bed and we are ready for them on a moment’s notice.

Monday, August 9, 2010

Roles Changing

It is funny how roles change. As we grow older our parents tend to revert to being in our care. This transition is happening right now in our family.

We had the issue with my mom saying things and focusing on the minutia of life instead of seeing the happier bigger picture. I know that it is related to her health issues.

She phoned a few days ago and, during the conversation, asked if I had heard about her phone call to Chip regarding his smoking. She told him that he is the same age as dad when he was diagnosed with emphysema and Chip needed to quit smoking.

Deep breath. I had planned to talk about this in person when she comes in for her birthday next week.

I began.

I explained to her that there was more to the story. He was very concerned about her appearance, as it had changed quite dramatically since he had seen her just 17 months ago. For the first time, he realized that she is not going to live forever and was actually crying after he left her a few weeks ago.

At first she denied that she looked any different but as I reminded her about her sudden height and weight loss, she quietly agreed that she had depleted a lot.

I told her that he had been dealing with that for about a week before her phone call. It hit him hard. He was really depressed. She looked so awful that he is worried that she could die soon from a cold or worse. I said there was nothing he could do and that was the hardest for him to hear.

Silence on her end of the phone.

Finally, she said, “I feel badly that I said anything.”

I said nothing and just let it sit there.

Then, I told her that he and Betty were so looking forward to meeting us in Las Vegas this fall. (We have invited mom to join us on a trip to see Mary. As her birthday present, we are taking care of the hotel bill.)

Their weekly phone call tonight should be interesting.

Sunday, August 8, 2010

Home Alone

Michael has left me. How’s that for the beginning of a blog?!?

On Friday through the weekend, he has been in Reno for Hot August Nights (it is a car thing…) as a guest of Mark – who was in the car accident in Oregon. Mark has arranged it all, Michael has been treated as a VIP, everything is taken care of, including food and drinks. A lot of drinks.

What did this girl do while he is away? I was able to watch three movies – The Bounty Hunter, Rachel’s Wedding, and Valentine’s Day – none of which featured Clint Eastwood, James Bond or anything Godfather. A rare event for me! Chick flicks!

I read without intruption, ate simple food, did some gardening and cleaned his closet. Yes, I did. In doing so, I now know what he needs for his birthday next month. The poor guy needs t-shirts to work in that have no holes or paint stains. H&M here I come!

(Side story – We learned about H&M years ago from William. Before a long tour, he buys lots of inexpensive underwear and socks and tosses them along the way. No laundry!)

We are rarely apart overnight and it feels so strange but I am happy that he goes places and does things that I am unable to do anymore. I was kindly invited to join them in Reno but really can’t take the altitude. My body never adjusts.

We have an excellent alarm system on the house and I have been sleeping with the panic button within my grasp. Sleeping is nearly impossible without him beside me. I miss the smell of him. I may be the only wife in the world who loves the sound of her husband’s soft snoring.

He has texted and phoned several times. After being married for almost 37 years, I still catch my breath when I hear his voice, my heart rate increases and he still makes me smile and laugh. I can’t believe my good fortune that this man loves me. It is a miracle.

His eyes will be sparkling when he comes home later this afternoon, he will be full of stories and the feeling of having had an adventure.


Saturday, August 7, 2010

Medicare Set Aside

I received a bill from Medicare. It was my first.

As part of the Workmen’s Comp settlement, the insurance company issued a check for almost $100,000 to be deposited into a separate interest bearing account to reimburse Medicare for specific services. It is called a Medicare Set Aside.

Medicare feels that my workplace caused my condition and refuses to pay for specific costs related to the injury.

The list of what is to be billed to me includes pulmonary doctor visits, PFTs, CT Scans, oxygen equipment rental, and a few others items for the estimated rest of my life in Medicare dollars, which is just a small fraction of Insurance dollars. Oddly enough, there was no provision made for my medications, which costs Medicare many thousands of dollars a year. Since it was not listed in the agreement, Medicare picks up the costs.

So, I was nervous as I opened the bill. It listed everything from the appropriate list of billable services beginning the day of my settlement, February 8, 2008 through December 2009. So, it would include everything for 22 months. I was becoming more nervous.

I started to giggle. The total to be reimbursed to Medicare was a grand total of $1,688.11. So much less than I expected!

What I don’t know:

  • Who gets the remaining money in the account when I die? I listed William as the beneficiary on the account but have warned him not to spend the money for a while. He may have to pay Medicare back.

  • Who pays the taxes on the interest it incurs? I guess I do, I think?!?

I do know that if the account is depleted before I die, Medicare will cover all my medical costs.

So, the question I have is why not just writing a check for the full amount in the account to Medicare. They can keep track of it, as they will eventually pay all the bills, God willing. Why put the managing of the account into the hands of an ill person? Just one more thing I have to teach Michael.