Living Well with a Bad Diagnosis - Lung Disease

Sunday, January 31, 2010

The Pianist

I never lied to the kids at school. If they blew a piece of music in a concert, we always talked afterwards. Depending on what type of student they were, I would either use humor (That was interesting!) or I would just ask, “What happened?” I never told a child that they performed well when we both knew it was not true.

One child became an international competitor in piano. He was working on a harrowing piece by Moshkowski that was all over the keyboard at a very fast clip. If the fingering is not correct, fumbling happens. As he was getting it under his hand, I had him play it in front of his small classroom music class. Playing in front of an audience allows a musician to find what needs work, especially during transitions

Months later, I had him play in front of a small lunchtime concert usually attended and for younger students. We would sometimes use this time to test pieces. As he got it down better and better, I had him play during a nighttime concert for intermediate and advanced students.

Finally, when he had it close to competition ready, I had him perform it during an assembly for the entire school. By that time, I knew the piece really well. He began. All was going well until a fumble happened. He was brilliant as he didn’t stop or slow down. He kept moving playing various notes until he got it under control and continued. When he got up from the piano, he took a deep bow. (That is something I taught the kids. If you act like you are happy with the performance, few people will notice or remember the mistakes.)

 We caught each other’s eye. When everyone was dismissed for lunch, he came over to see me. All I said was, “You and I are the only people in the entire room who know what happened. Nice save.” He smiled.

He ended up nailing the piece and winning the competition.

 When he graduated, he was ranked number two in the world. He continues to compete in competitions internationally and is currently studying in Germany. He is 17-years old. I just got a lovely photo and note from his parents.

 I will never forget one day, I was walking through the gym at lunch and there he was playing basketball. BASKETBALL! The sport of jammed and broken fingers! In my office I told him, “David, you can’t play basketball. You are in the midst of working towards the competition in a month and can’t afford a broken finger. Sorry, but you’re banned from basketball.” He was not happy and left my office. Fifteen minutes later, he was back. “Can I play soccer?” I replied, “Perfect! Break your leg! I don’t care. Just don’t hurt your arms or fingers.”

Saturday, January 30, 2010

Nasty Nancy

I am no saint. I don’t get along with everyone. There are just a couple of people in rehab who I have grown to dislike. But, I was taught to respect all people especially those who are older than I am.
There is a woman in the rehab class whom we shall call Nasty Nancy. She is clearly a woman who never worried about a budget, always mentions the long dead Robert, her husband who worked and lived with her all over the world and she has political opinions the opposite of mine. I have learned to never discuss religion or politics with an older crowd. When drawn into a political discussion, I say that I hate all politicians as they are all the same, no matter the party.
While sitting on a bike next to me, Nasty Nancy would begin with the “idiots” on the other political side and make wild statements though she didn’t have any of the facts correct. Then, she would tell me what she eats from the time she gets up until she goes to bed. (Then I have a nice salad at lunch and put in small tomatoes….) I felt I was being held hostage to these lectures, as I had to work out next to her. She was able to get off oxygen for a time and constantly lectured me to lose weight and work harder and I, too, could be better and off oxygen. This went on for a while. Two times a week. For months.
Then came a time when I was on 40 mgs of Prednisone and suffering with all the side effect when I had enough. I said in a clear loud voice, "Nasty Nancy, I have a fatal lung disease. I am on huge doses of Prednisone. I am on bone marrow chemo drugs. I will never get any better than what I am today. I will be on oxygen for the rest of my life.” She stopped. The lectures were over. Later, she went into the hospital and was gone for several months. When she returned, she was confused. I would see her just standing and staring into the air. Finally, I mentioned it to the RNs. The, too, had noticed, had phoned her daughter that afternoon and her family took her car away that evening. She was not mentally present. It was a school vacation week and one of her daughters, who was a teacher, brought her to rehab the next week. They were in the process of hiring a helper/driver for her. I got talking with her daughter and learned some interesting things. Nasty Nancy had been a model and never weighed over 110 pounds her entire life. She watched every bite of food. Obsessed with food. When her daughters were young, she constantly lectured them about their weight. Even in college, their time at home during holidays included constant lectures. Both were thin at the time but just not thin enough for their mom. Both rebelled. One is extremely obese the other just a bit chunky. Her daughter mentioned to me that their mom was really eating now for the first time in their lives. They were stunned. She was eating constantly. I told her that I would suspect that she was on prednisone. She confirmed it. I shared some the side effects of the drug, something no one had told them, which includes an insatiable appetite. I also told her about not eating any carbs while on prednisone as it goes right to fat and that everyone gains weight while on the drug. Nasty Nancy was gaining a lot of weight. She was not happy. The daughter said how ironic it was that at the end of her life; she had no control over her weigh, something that she was consumed with all of her life. She and her sister were shaking their heads at the irony. I wished the daughter good luck. She was a lovely person. Imagine having a mother who constantly told you that you were not good enough or thin enough all your life.

Friday, January 29, 2010

Winner

Mom and I call Michael a winner. He really is. When we went to a casino together in 2007, he won over $7,000 in one pull. Never happened before. Never happened since. He was a winner. Everything he touched paid off. He said if felt great. (It was an Indian casino over a hundred miles away where we went because they advertised a full floor of a smoke free environment. Loved it though we have not been back because it is so far away.)

They asked for his social security number. He has several 56’s and 65’s in his number and either they didn’t hear it with all the noise or they wrote it down wrong. Just before this past Christmas, we received a notice that we had to go to the Social Security office for a form to be mail directly from them to the casino confirming his name and number.

We had already declared the winnings in 2007. Thank goodness!

I was not happy about having to go to the SS office. I had been there a few times. It begins with a horrible parking lot, a horrible waiting room, horrible people, screaming children and is patrolled by the police. Not a happy place.

Michael couldn’t understand why I was not happy about having to go there, having never been there.

We arrive just a few days after Christmas, checked in and proceeded to wait for two hours. By that time, children had arrive but they were charming and having fun playing together, we talked with the people in front of us and behind us and they were lovely, no one coughed, and it was really not horrible.

Once again, I was reminded about the kindness of the Social Security employees. They are the nicest people who talk to everyone with respect and with no attitude. I really could never do their job.

Maybe it all turned out so well because I had Michael, the winner, with me.


Thursday, January 28, 2010

Music and the Next Generation


Did the passion and performance of music survive to the next generation? We all played a variety of instruments but has it continued?
My niece played clarinet and a bit of piano through high school. She even sang with the Jazz Band and performed at her graduation ceremony. She sang the same song that my mom sang with her jazz band in high school. Weird, isn’t it? She still sings karaoke and is good at it.
Our son seemed to have no interest in music. We played a huge variety of music in the house so he was exposed to great music from different genres. He also came to most of my symphony concerts every 4-6 weeks.
I knew there was hope of a good ear when he was around 8-years old and we were on the escalator at Nordstrom’s. The piano player was playing a very embellished “Chariots of Fire” which happened to be a song that I played on the piano at home but a very different version from what was being played.
He turned to me and said, “You play this song.”
I would play the piano a lot in the late afternoon while dinner was cooking or waiting for Michael to come home. Williams’s bedroom door would be closed but apparently, he was listening.
Finally, in eighth grade, he asked to play my bass. I offered lessons. He refused.
His first year of high school, he took a music theory class, learned about chords and how to read music. The next summer, he took private lessons from his band teacher. The next year, he played bass in the jazz band and for the musical. Those concerts were the most joyous moments of my life.
He ended up being awarded the Bank of America award for music during the graduation ceremony. He was an excellent musician.
He now works in the music industry. He is also returning to performing in April which makes my heart sing.
Music made it through to the next generation. We’ll see if it continues on.
Next: Winner

Wednesday, January 27, 2010

Winnie















In the spring of 2001, the Middle School music teacher took another position and the Lower School music teacher resigned and took back his resignation six times before the Head of the school let him go. I had to hire two new classroom music teachers.

Replacing the Middle School music teacher was easy. I interviewed many other teachers to replace the Lower School music teacher to no avail. I begged the current Middle School Music teacher, “You must know someone who is as wonderful as you are who can teach young children!”

Turns out, a friend of his was graduating from the Conservatory with a Masters in Voice the next week. An opera singer. He called, I called, and we met. I arranged a sample lesson to be taught to a group of children to choose between two candidates:

#1 taught a horrible lesson but the kids were totally enthralled and engaged with her.

#2 was a master teacher who sat on a chair, taught a great lesson and the kids were totally bored.

Candidate #1 was hired, as I would be able to direct her what specifically to teach. She already knew how to teach children. With that, wonderful Natalie came into my life. Little did I know the long-term ramifications of that hire.

She was smart, was an excellent singer and performer, had good musical chops, had amazing communication skills and had high expectations of the children’s abilities. She was and still is an extraordinary teacher.

So, beginning the 2001-2002 school year, our shared office included Jeannette as the Middle School teacher, Natalie as the Lower School teacher and me. We were an amazing team. The next two years were the most successful of my entire working career.

Both Natalie and Jeannette had strange medical things happen to them while working out of our office. Natalie had many series of low-grade fevers and had a rash all over her body. Even after a biopsy, the doctors didn’t know what it was. Jeannette had huge crepey looking, swollen bags under her eyes. She went to doctors but no one could help. After she left, they cleared right up.

After I left in September 2005, Natalie kept me informed about the physical building. She was very busy so I didn’t see her until her baby shower in October 2006. In early December 2006, she gave birth to Winona Rose, aka Winnie.

She stayed home for almost the entire school year so I would drop by on my way to my appointments at the hospital, which was just blocks away. It was the only place at that time where I did not talk or think about being sick. I wanted to hold a baby and think about life. We would talk about the school, the students, the baby and really avoided talking about me.

She only stayed another year at the school. She was hired by another school in a very part time position for a very nice income, and was able to be with her daughter. I would go up to the city and join them for a walk or lunch. It was a lovely time.

In January 2009, she and her husband bought a house in my little town. Winnie has brought pure joy into my life. Even Michael in enchanted with her. They come for a visit almost every Monday afternoon.

A few of the latest conversations with Winnie:

To me- “Are you an adult or a kid?” My answer, “I am an adult but I really want to be a kid. Is that okay?” She gave me a sideways look and a pause before responding, “Okay.”

Walking up to a glass door, she commented on her reflection: “There’s that Winnie again.”

She quotes herself: “I told mommy: Mommy, I want the door left opened.” Never heard a 2-year old quoting themselves using a different voice and everything. Hilarious.

She will go into William’s room to look for him. “Who’s mother are you?” she just asked a few weeks ago. I tried to explain that my son is as old as her dad but she doesn’t believe me. When I talk about him, she gives me a look that says she is not too sure he even exists.

What Winnie doesn’t know is that she is going to be an older sister in June.

More joy.

Tuesday, January 26, 2010

Diet Update















So much has happened since I began a new eating plan around the first of the year. I chose one from the publishers of Prevention magazine because of their demographics. Sadly, I am now in my 50’s sliding quickly into the 60’s. Perfect.

I have lost a nice bit of weight and inches and feel really good. My goal is twenty pounds by the time I see Dr. K. in May, which is definitely an attainable goal. If it is enough, I will begin the transplant qualifying process. It takes about 6 months to complete all the tests.

The other self-improvement project I also began at the beginning of the year was to have my teeth whitened. My dentist created plates that fit into my mouth which are filled with the whitening agent. What a difference! I think they look so much better.

I’m feeling good and positive going into the New Year.

Next: Winnie

Monday, January 25, 2010

Into the Void

Sometimes I feel like I am writing all this and just putting it out into the big void of the internet. People have told me that their patients are reading it and several friends are as well.

I think I might need some feed back. Are there any question? Is something not clear or making sense? Please use the comment button at the end of any column. I will read all comments and respond.

I hope someone is out there!!!

Next: I Did It!

Sunday, January 24, 2010

In Context

Now you, dear reader, may understand why my parents were very worried about me marrying into Michael’s family. I, too, saw some issues and wanted to be sure we had an understanding.

Before we told everyone we were going to marry, I said this to Michael:

“I have two things that I want you to hear before we get married:

1. If you ever hit me, make sure it is a really good shot because you will never be given another opportunity. I will not return to you no matter how sorry you are. Once, and I am gone.

2. If you ever have an affair with another woman, make sure it is worth losing me. There will be no second chances.”

He looked at me in shock and said, “I am taking vows to you. I would never hurt you.”

And he never has.

With his family history, I just needed to say it up front.

Next: Into the Void

Saturday, January 23, 2010

Married with Twins














I didn’t know about the twin until after I met him. Michael was living with his aunt at the time and his twin and sister came for a visit. I knocked on her door, Michael opened it and I asked, “Have your brother and sister arrived yet?”

“Oh, you must be the person we have been hearing about!”

It was the twin, not Michael. It was amazing. They looked, moved, talked, twitched, and laughed alike.

After we got married, he would drive up and visit us on the weekends. Every weekend. This is when I began to teach myself how to cook. I would hunt through cookbooks and make a huge number of courses every Saturday night. We would have dinner, talk, watch Saturday Night Live and have lots of wine. We were barely 21-years old.

The thought of the twin driving 400 miles round trip every weekend began to seem crazy. We offered that he set himself up in our spare bedroom and save money for an apartment.

He stayed four years.

There is a sitcom in there somewhere! I remember those times as being very busy, very fun with lots of people in and out of our house. The three of us became very close. He married, had a child but they eventually divorced.

Several years passed.

He remarried. We lived through the first wife and now the new wife did not like me at all.

This was the period where I was staying home with William instead of working outside the house. One day, she looked at me and asked in a very condescending manner, “What do you do all day?”

“I do what your mom did for you when you were young.”

Her reply: “My mom worked.”

Thud. That was the beginning of the end. She got rid of me just after the wedding. The twin was dispatched to accuse me of things that didn’t happen.

It was a shock that this was coming from the mouth of someone who I thought knew me. We both told Michael about the conversation. He had not been there and didn’t know which of us to believe. It almost caused our divorce. (It actually took two years before Michael figured it out. He got it. Finally.)

We went to a birthday party in a restaurant for a mutual friend a couple weeks after the conversation. No one spoke to us. We were seated in a corner. Alone. After dinner when we got up to leave, I approached her to say something kind to smooth over everything and she turned her back to me. Afterwards, I told Michael that I was so done playing her games. I’m too old.

I wasn’t angry with her, as I hardly knew her. I was angry with the twin for not seeing his wife’s motives.

I also realized that he used me all those years as a weekend babysitter for his daughter, a cook, innkeeper, or anything else he needed. I was stupid. I was angry with myself for allowing him to use me.

Having not seen the twin or his wife since that dinner, several things have happened since then, which really made us grateful that the relationship is as it is. (Michael was irritated with her from the start because all she wanted to do was to put him on display for her friends. Every time we were with her, that was all she talked about – how much they looked alike. It got old very quickly.)

The twin and Michael see each other almost everyday. That is fine. I just don’t want anything to do with him. He deeply hurt me once and almost caused our divorce; he will not be allowed the opportunity to do it again.

My dad told me that the mistake I made was believing that the twin was anything like Michael. As dad said, he will never ever begin to come close to being like Michael. After all these years, that has turned out to be so true.

It has been interesting that since he has learned about my bad diagnosis in 2005, he has done nothing. Having never extended himself before, what else should I have expected?

Next: In Context

Friday, January 22, 2010

Saying Goodbye to Grant










During our May 2009 trip across the country – My Farewell Tour #1 – we were able to say goodbye to people without them knowing that it was a final goodbye. I said goodbye to Michael’s younger sister, her daughter and her grandchild; my aunt; our chef friend and Michael’s dad, Grant.

Michael’s parents were married when they were 17-years old then proceeded to have five children before they were twenty-one years old!!!!! After ten years of marriage, he left, joined the military and denied he had children. It took many years to get some sort of child support for his mom.

His parents put the entire brood on a plane to live with Mary’s parents. After a while, they moved into the projects. Michael is dyslexic, a September baby, a male and an identical twin. Today, they would have had him wait a year to begin school. He never graduated from high school and while in school, they would look at his address and put him in “other” classes; non-college bound classes.

Instead of school, he focused on making money. He has had a job since he was 13-years old, mostly in the food industry in his younger years. As there was never enough food, he and his siblings brought food home from their jobs. He even served a four-year apprenticeship at a Dutch bakery. This man knows his pastry!

One year, he wanted to have our son see where he grew up. The projects at that time were so dangerous that the sheriff’s department refused to go through the gates. Imagine how vulnerable I felt as the three of us drove up to his building in our fancy German automobile.

There was a young girl riding her bike in the parking lot. Michael hopped out of the car and pointed out his old home to her. He asked if it still had the tile floor his mom had installed and told her that his mom painted the cinderblock walls inside. They had a great conversation. We left.

It was definitely the projects and it did have a huge influence on his life as well as his siblings’ lives. Everyone is out of the projects but some are still there mentally. Michael once told me that everyone he knew was either in jail or dead. Just after we were married, we dropped by an old friend’s house. There sat another friend who mentioned that he was wanted. We turned around and walked out never to return again.

When I went back to work at the school in 1994, the Internet was rather new. I did a search for Michael’s dad, who he had never seen again after he left when he was a child.

I got a hit. He lived in Albuquerque, New Mexico. That evening, I gave Michael his father’s phone number. He phoned. We arranged to travel to meet him in two weeks. When we arrived, Grant’s first question was, “What do you want from me?” Michael replied, “Just to look at you.”

It was a strange meeting. He married a remarkable woman and raised five other children. He was still very angry with his parents who were long dead. His conversations did not include questions about Michael or his siblings but were about himself. He had been assigned to work with the locals during the Russian invasion in Afghanistan and lived all over the world working as an engineer on different space projects. He even did work with the shuttle. Very self absorbed. Very closed emotionally. He was a very strange and sad man.

He also was a total Alpha male. Michael is so NOT an Alpha male.

Later that year, Michael flew with his older sister to Albuquerque to meet him. For years, she had cried over him leaving her. After she met him, the tears dried up. Forever.

When I was planning this Farewell Tour, we thought we would see him again in Lubbock, Texas where they had moved. We met at the best restaurant in town, sat in a booth and my job was to keep his wife and granddaughter busy while Michael asked Grant questions about his family.

Grant didn’t want to talk about anything or anybody other than himself. After two hours, Michael gave me a look that only 36 years of marriage can read: Let’s get out of here. I looked back with a face that said that I was stuck in the middle of a booth and couldn’t move.

Michael suddenly said, “Why don’t we go outside and take some pictures?” We adjourned outside, got some shots and fled to our car.

“Give me your phone,” Michael said. He called his mom in Las Vegas and thanked her for getting a divorce. “My life would have been so screwed up if he had raised us.”

After three face-to-face meetings, we are done.

Goodbye, Grant. I hope you somehow find some peace in your life.

Next: Married with Twins

Thursday, January 21, 2010

Papa Joe

The other evening, Michael and I were talking about Papa Joe. He married Mary when Michael was 16-years old.

It takes a brave man to marry a woman with five teenagers. He had a set of twins of his own who were 18-years old. He was a kind, quiet and gentle man. Michael’s grandfather introduced them to each other and Joe was the first man Mary dated since her divorce seven years earlier.

Before they married, she told Joe that she would be the parent to her children. She would do the disciplining. He felt his role was to totally love and support her so he never assumed a father role.

All of Michael’s brothers and sisters adored him. One of his nieces even married a man very similar to Joe because she had so loved him as a young child.

He died of thyroid cancer in 1990. Too young. He died while Michael was on the phone with his mom. I will never forget hearing Michael’s sobs.

For many years, Mary was in a depression. She deeply missed Joe. We all did.

Just recently, the clouds have begun to lift after twenty years. It has been interesting to watch her begin to grow and develop from afar. Her face has begun to lighten up, her smile is wider, her laugh is rich and deep and she now has begun to care about herself.

She is jumping back into life after all these years.

Next: Saying Goodbye to Grant

Wednesday, January 20, 2010

29 Years Gone in a Flash

Today is our son’s 29th birthday. I can’t believe he is so old! How did it all happen so fast?

As a parent, you do your best. When they leave your home, they have to create their own life. It has been interesting to watch him navigate his own way.


We love him.

We support his decisions.

We wish him all the best that life has to offer.

Happy Birthday, my dear.

Tuesday, January 19, 2010

Mother-In-Law

When I was younger, I didn’t understand why my mother-in-law did not stress the importance of an education but was more interested in her kids getting a job.

One day, I said this out loud to my dad. He said that he hoped that I would never go through what Mary went through. He said that as a single mom, her only goal every day was to have enough money to feed five kids. Forget new clothes, toys or anything else, she worried late into the night about feeding them.

She has my deepest respect. She was so strong when the kids were growing up, they were just a bit afraid of her, which kept them on the straight and narrow

We have a great relationship. When William was young, I would phone her every Saturday and talk about his week. Since she lived 200 miles away, I wanted her to feel as if she was a part of his life.

I also feel that it is the job of the daughter-in-law to make the mother-in-law comfortable and welcomed into their lives.

There was a big upheaval in 1989, which created a division within his family. I backed away from her so another relationship could begin. It never did.

After many years of me phoning her, I began to nudge Michael to call her about every two weeks. It has worked well. They have a nice relationship and I still call her often.

She has not been to visit us since 1999 when William graduated from high school. It is time. I am preparing myself.

For Christmas, part of her present was an airline ticket. The date is set. She arrives on Monday, February 1st. The cleaning has begun!

Ncxt: 29 Years Gone in a Flash

Monday, January 18, 2010

Health Care Bills

























People ask me what I think of the new proposed health care bills. (What we really need, in my humble opinion, is insurance reform ASAP.) As a person who no longer contributes to society in the eyes of the government, I worry about the decrease of Medicare benefits and the huge additional out of pocket costs. If it passes as currently written, we may have to sell our house.

The Mayo Clinic in Arizona has just announced that they will no longer treat Medicare patients. Is this going to be the new trend as payments to the physicians and hospitals for treating Medicare patients are to be grossly cut to help pay for its cost? Will all large medical centers deny treatment for Medicare patients as well?

As a person with a fatal illness, I worry about not being treated aggressively if I were to develop a massive secondary illness like cancer or have a stroke.

As stated in the bill, I worry about the mandate to the medical schools for the majority of doctors to be family doctors instead of specialists. That is fine for young people but people who have profound illnesses or older people need specialists. If there are fewer specialists, it will be close to impossible to get an appointment with one thus putting off tests until it is too late.

I worry that some idiot person with a list of rules will not allow the treatment I need to sustain life.

Having a fatal disease, I worry that I will be told to take a pain pill instead of treatment, for example, a hip replacement.

As a drag on the system, I worry that I will be given a strong nudge to end my life before I am ready.

Please, please, please give us a clear, fair bill for EVERYONE – no exceptions for congressmen, union members, the Amish, the State of Nebraska or special interest groups.

No bill is better than a bad or unfair bill.

Insurance reform would be a great start.

Please.

Sunday, January 17, 2010

I'm Baaaack

I love the fact that several of my doctors are former musicians or they are currently performing with groups. Good hand/eye coordination as well as good dexterity. Nice.

My dentist was a former oboe player in college but is currently an exceptional harpist. I have performed concerts with her and the small orchestra here on the coast and in private concerts. (Side myth about oboe players: In the old days it was believed that those who played the oboe eventually went insane due to the pressure for the double reed needing the jaw set in a certain way which put pressure on the brain. When I asked when she had quit the oboe, she whirled her dental drill and said, “Not soon enough!” followed by a maniacal laugh. Oh, those oboe players!)

She currently plays harp and sits on the board of our little local orchestra. I played with them for years and would fill in when needed but mostly I performed with a larger and more prestigious symphony orchestra. As my job at the school got bigger, I would miss rehearsals due to concerts at my school and other things. At one point, I found myself sight reading a concert. Not a good thing. I took a leave and never returned.

She called Friday afternoon. In the past, they had been paying a bass player who had to come 50 miles to play with them for the concerts. This is a tiny local orchestra with an even smaller budget. They just can no longer afford it.

The concert is in two week. January 30th.

She asked if I could re-join the orchestra, come to the next two rehearsals and play the concert. Now, I haven’t performed with an orchestra for over 5 years nor have I touched the instrument and my calluses are gone. My strength and stamina are not what they used to be. It is a big physical instrument.

Perform?!? After very little rehearsal?!?!?

Yes. I agreed to do it. I can do it.

It is a New Year.

I am back!

Next: Health Care

Saturday, January 16, 2010

Too Private

I have been very careful whom I tell about this blog. It is so personal and I am just too much of a private person to feel comfortable sharing it with one and all.

One person I told was the front desk check-in person at the other rehab. She is young but has social acuity that belies her age. She is interested in people and has an amazing memory. I really liked her. Sadly, all good things must come to an end. She just left the job to join her boyfriend in LA and to continue her education. I miss her so much! XOXO

Another young exercise physiologist in the rehab class has also been given my blog information. Without a cable connection at home, she was having problems accessing it. During our Christmas luncheon when I ordered chili, she asked if I was going to have a root beer with that. Ha-Ha! She had read it! Loved it!!

After talking with his mom on the phone, Michael told me that she would probably love to know about and read my blog. Yikes! No! I told him the only person in our family who I would allow to know about it would be my niece. At Thanksgiving, I gave her the URL with the understanding that she wouldn’t share it with her mom. It wasn’t until after Christmas when she began to read it.

I hope she doesn’t mine me quoting her:
I just finished reading all of October. I wish I could give you a hug right now!! I've always been scared of what everything you've been diagnosed with actually means; I admit that I've been duped to think it wasn't all "that" bad based on your stellar attitude. I mean, we've talked. But, not like what I'm reading in your blog. You're so strong. And although I've always looked up to you as my super-fun loving aunt -- I look up to you even more having read all that you're going through. Thank you so much for allowing me to read your blog. I'm hoping to get through November tomorrow. I love you!

That alone has made this all worthwhile.

Next: I’m Baaaack

Friday, January 15, 2010

Night Terrors


For a couple years after my diagnosis, I would awaken in the middle of the night and my mind would not settle. I would begin to worry and would not be able to go back to sleep.

In the early morning hours, my future appeared so horribly bleak. I would begin to almost panic. How were we going to survive it all financially and emotionally?

The only thing that worked was to go into the family room and turn the TV to something very boring, which would put me to sleep on the couch.

When we traveled in 2007, I found that if we kept the TV on, I would awaken then drift right back to sleep. Since then, we sleep with the TV on. It keeps my night terrors at bay.

We have also discovered Melatonin. It is good for the brain, has no side effects and sleep comes gently. Michael even uses it on occasion, too. It has been a wonderful find.

Next: Too Private

Thursday, January 14, 2010

Underneath

If you are a gentleman reading this blog, you may want to skip today and catch up with us tomorrow. We are going to talk about underwear.

Bras. I hate them but I really need them.

Just before I realized there was something wrong with my lungs, I thought was having problems with my bras. I felt that there was a band around my lungs and I could not take in a full breath. I bought tons of different ones trying to get a good fit. I even consulted with the experts.

Finally, after I was diagnosis, I realized that my lungs needed to be as free as possible but still needed a supportive bra. I stumbled upon shapewear. It is a bodysuit, without under wires, that has some elastic in the fabric. It supports my lungs and I even think it makes me stand taller and straighter. Finally, I was able to breathe comfortably.

Give shapewear a try.

Next: Night Terrors

Wednesday, January 13, 2010

Cars


My husband is a car guy. Car guys watch car show on PBS, read car magazines by the dozens, talk about cars, work on cars, think about cars, dream about cars and have car photos NEAR THEIR SIDE OF THE BED WHICH HAPPENS TO MATCH THE COLORS OF THE BEDROOM!

Deep breath in! I digress.

He never wanted his son to work on cars. He wanted more for him.

Last year, he bought a shell of a car. It hardly even looked like a car. It is a 1966 Ford Mustang convertible, which had been stored in a barn for over 10 years. When they had it towed to the shop, the first order of business was to remove all the dead mice. Then, they began to strip everything from the car.

William is now scheduling time away from touring to work on this car with his dad. It has been an amazing process to watch as a mom. When something new happens like a car part is found, phone conversations ensue. The 8-track was taken out and restored. It is even beginning to look like a car.
When William was young, Michael was working his brains out. I was the parent to set the schedule and rules. I was the education tsar. I was the one who raised him. I was the one keeping all the balls in the air.

When he turned 8-years old, Michael became part of his life a bit more. It was during a very difficult time in the extended family.

The three of us traveled a lot, ate out at renowned restaurants, toured cities, and stayed in fancy hotels.
I didn’t realize at the time that we lived in an area of mostly established older parents. There were very few children his age and we sent him to non-local schools. He didn’t have a lot of friends who weren’t adults.

Even though we went a lot of places together, it was a lonely childhood for him.

When he became a teenager, I told Michel that he was now the main parent. I knew he was going to spread his wings and his mother’s protective instincts wanted him home. So, whenever he wanted to do something or go somewhere, Michael always said yes while I kept my mouth shut. It was so hard. I had to let him go.

We live off a very busy highway. My mom always asks where in the world William is and laughs when she reminds me that I would not let him cross the main highway. Some years, he is on four continents. The irony is not lost on me.

It all comes full circle as I watched them go off to work together every morning during his visit over the holidays. Both were talking about what they were going to do that day and all they talked about at home was about the car.

I told William that he could never sell it. His children and grandchildren will drive it well after he and Michael are gone.

It was good to have him home under our roof. The house felt full again even if it is was for a short time.

Next: Underneath

Tuesday, January 12, 2010

Disabled - 5 Years
























Five years ago today I had the lung biopsy, which changed everything in my life. I can’t believe it has been five years. I wasn’t supposed to live this long.
Here I am. Still standing.
It is also my brother’s birthday. When he found out I was going to have the biopsy on his birthday, he told me that I had better recover from it or it would ruin his birthdays for the rest of his life.
He really is a great brother.
I am going to go by the church where Michael and I met and say a little prayer of thanks today.
Next: Cars

Monday, January 11, 2010

Self-Assessment










Welcome to my 100th blog. Unbelievable. This from a woman who started a diary every year as a teenager but never got past day three! Thanks to everyone who reads it. The feedback I get keeps me going. Please use any of the comment buttons!

Every year for as long as we have been married, Michael takes a very long look back at the end of each year. He asks himself if he has learned anything, did he hit his goals, if he was a better person, if he could have done more, what he would have changed, has he moved forward and what are his goals for the coming year?

Some years are good and others are not. He is really hard on himself but extremely truthful. He often does not even share his self-assessment with others or me but this year I learned one of his goals: He has begun to look at the "Blues Bible" again and the guitar/amp is within easy reach.

He has taught me to not be competitive with anyone, to set our goals together and to keep blinders on. We move forward together and at our own pace. We push each other. We drag the other forward.

He has taught me to wish for other people’s successes, support them through their disappointments and really mean it in my heart.

As I review 2009, life has become very small/simple for me. I am grateful to be alive and functioning. I have learned to appreciate stability. I am just thankful that I had a really healthy year.

Next: Five Years Fly By

Sunday, January 10, 2010

Volunteering

Everyone in our family volunteered. There was no “rule” but it was just something we did. My mom volunteered at the library when we were kids and continues to volunteer at the local hospital and museum.
My sister was a Candy Striper in a hospital and continues to play piano for organizations.
My brother coached Little League teams throughout his high school years. They never won a lot of games because he insisted that every child played. This was in the 1970’s when that just didn’t happen. They had fun but he also taught the kids the love of the game and life lessons.
Michael and I met volunteering at the church and I had been named Red Cross volunteer of the year when I was a freshman in high school. I learned a lot in that convalescent home. We also volunteered at all of William’s schools.
William volunteered at the church through junior high and high school. The three of us backed up a choir instrumentally. He and Michael played guitar and I played bass. It was so satisfying as a musician and mother to play together as a family.
In 1980 when my dad retired at 57-years old, they sold their house in a very exclusive area and moved 100 miles away. They were able to pay cash for a house and invested the rest of the money.
How do older people make new friends?
My parents volunteered at the local hospital and began to make friends who are still a part of my mom’s life. Dad was the first male volunteer at the hospital. There are many now.
Mom was assigned front desk duties while dad was given the job of pushing the new mothers and babies in a wheelchair to their car after they had been discharged. He loved it.
He remembered how difficult the first three months of adjustment and lack of sleep are for new parents. He thought that if he could give them a little boost that they might remember when they are in the thick of it. So, every baby he put into a car, he would turn to the parents and say very quietly, “ I’m not supposed to say anything but I just have to tell you that you have the most beautiful baby I have every seen. And I see a lot of babies!”He said they always smiled and thanked him. Sometimes he even got a hug.
He was such a good man.
Next: Self-Assessment

Saturday, January 9, 2010

Booklet

About two years after I was diagnosed, my wonderful Swedish housekeeper was coughing a lot. She was seeing a doctor but the cough continued. Finally, I asked if she had ever had an x-ray. This jerk of a doctor had done nothing other than treating her with inhalers for a year. She finally demanded an x-ray.

It revealed that she had 4th stage lung cancer.

She had no money and was living in an illegal structure. She had to go to the county hospital for treatment where she and I were both amazed at the high quality of care she received. What was even more amazing is that she was assigned her own social worker. All the forms for disability were filled out with her, all the deadlines were met, and she didn’t have to think. It was all done for her.

She passed away a month after winning a large monetary award for medical malpractice. She died in a beautiful luxurious hotel room. I smile every time I think of her. She was such a good woman.

Michael was a little afraid of her. She would look and him and say, “You must clean that garage.” And he would. He said that she could pick him up and snap him in two. Her hands were huge and very strong. She was a character.

When I was told I was not returning to work, I had no idea about anything. No one walked me through the processes: State Disability, Long-term Disability, Social Security, and Workmen’s Comp claim. I almost missed a lot of the deadlines for filing.

During my talk the pulmonary doctors, I suggested that a social worker be assigned to anyone who receives a bad diagnosis. Later, I thought even a small booklet of timelines, addresses, phone numbers and even about the entire process be made available.

Michael thinks that we should write one. It was such a huge learning curve especially when I was not feeling well and also trying to deal with all the new life changes of a bad diagnosis.

Another thing on my list of Things-To-Do.

Next: Volunteers

Friday, January 8, 2010

Singing in Rehab


Did I mention that Dick cannot sing? If the music is not turned up in the rehab class, he will threaten to sing. When he begins, he is loud, off key and he always starts singing a Polish drinking song in Polish. It is a very subtle hint that the music needs to be louder.
The RN’s run to turn up the music the moment he begins. It is horrible to witness. People cover their ears.
One thing he and I have loved to do is sing along with “Under the Boardwalk.” I sang the verses from my treadmill while Dick across the gym just sang the words “Under the Boardwalk” loud and off key from his treadmill. Everyone joined in and laughed. Good way to start rehab.
Sometimes the TV is turned on with the sound off but with closed captions. It is usually a soap opera. I started to read the lines one day while on the bike. I got Sherman to begin to read the male dialogue but he got shy when people started to laugh.
There is a class for hospital personal in another room during our rehab class but they have to come through our gym to gather their weights, balls and mats. As they passed us by while we are doing our free weights, Sherman and I would begin to count out loud: 35, 36, 37, 38. They headed upstairs to park the equipment and passed by on the way out: 72, 73, 74. Some would comment, “WOW! You guys lift more that I do!” We just smiled.
Eventually, they caught on.
Every rehab class, the nurses ask during check in, “Do you have any pain?” I always reply, “Yes, Sherman.”
I have them all laughing.
Next: Booklet

Thursday, January 7, 2010

Prognosis with Lung Disease


About a year ago, we realized that we had been too careful about sharing the not-so-good information about my health. Michael had several conversations with a variety of relatives over a short period of time and came to the conclusion that they still expected me to recover from this disease.

This began the “she is dying” conversation peroid. He talked to every relative and said, “Do you realize that she is dying?” I didn’t stop him at first because I thought he needed to settle it within his own body and saying it helped.

After a few months, I asked him to stop. I also reminded him that everyone is on the road to death but mine is just a known and shorter road.

The resident who was my doctor initially, gave me just a few years to live. When Dr. K. arrived on the scene, I asked if I needed to buy a cemetery plot and get everything in order. I also asked, “Are we looking at a few years or when I am 70-years old?”

She turned, looked me in the eye and said; “I think we can limp you along to 70!”

This past week, I told Michael that we are going with Dr. K. She has been right about everything else. Let’s not plan to bury me yet.

Besides, he is not going to get rid of me that easily!

Next: Sing-a-Long

Wednesday, January 6, 2010

Barbara

As I was leaving the rehab class yesterday, I turned around and there was Barbara. Though she was using a cane, she looked great and had lost 10 pounds after a small reduction of prednisone. She said she was scared to come back.

“But doesn’t it feel good to be here?” I asked.

She smiled. “Where’s Sherman?” She had just missed him.

Dick spotted her, gave her a huge hug, loud smack of a kiss on her cheek and a lecture about how all of us care about her and totally support her. Never shy! He reminded us both that Sherman’s birthday is next Wednesday, we are all planning our cards.

Can’t wait when she shows up on Thursday to surprise him.

Next: Years?

Tuesday, January 5, 2010

No Sushi

Because of being on such strong immune suppressant drugs, I have to be careful of certain foods and the sun.

Everything must be cooked well. Because of e-coli, I do not eat ground beef. Ever. I can eat sushi but it must be cooked. Nothing raw. No raw oysters, no raw tuna, no raw beef, no raw quail eggs, no cookie dough, no raw cheeses.

We do not often eat out at restaurants, as we just don’t know if someone handling my food is fighting a cold or the flu.

One of my drugs makes me susceptible to skin cancer and I must be fully covered in the sun. When I do yard work, I have the oxygen on my back attached to a candela into my nose, a large hat, long-sleeved shirt, a mask and headphones. Charming. The neighbors tease me but it allows me to continue working in my gardens.

Next: Barbara

Monday, January 4, 2010

Guilt

Sometimes I worry that I have made our lives very small and it is not fair to Michael. He is well. He is fine. I worry that I hold him back.

We definitely had to change our lives and our goals. Financially, things are so different from what they were. I have guilt that I cannot work and bring in an income.

He says our life is quieter with fewer people around. We just don’t associate as much with many people. After any event or busy day, I need down time. That can be boring for him.

We find that we are staying in after dinner. We never used to do that, even last year. If we just wanted to get out, we would go for a ride. Now, we just don’t. Hmmmm. I need to work on this. He just mentioned tonight that we need a convertible again for our nightly rides.

Next: No Sushi

Sunday, January 3, 2010

Dealing with the Front Office

Many, many times through the years, I have been given special treatment because of my relationship with the front office people. When dealing with a large university hospital, it is often a challenge to get appointments, schedule PFT’s, tests and CT Scans.

Just one example is when I was ill during 2008 Thanksgiving, I was told that it was going to be a month before I could get an appointment for a PFT. I told the front desk person to tell the PFT front desk person that the test is for me. They suddenly had an appointment for me the next morning.

Also, if I need to see a specialist, I will walk the request over and make the appointment right then and there. During that process, I usually find something to share with the office staff. They remember me when I come in for the appointments.

Is my doctor willing to send me to the head of another department if I am a jerk? Of course not. It pays to be nice. Question. Inquire. Challenge. Fine. Just do it nicely.

When I was having problems with the Nissen, I had to see the specialist again. While waiting, a man in his 60’s walked up the desk. Very loudly, he stated that he was only willing to wait 10 minutes for the doctor. If the doctor was not able to see him in 10 minutes, he had other things to do and they were to call him.

He turned to me and said, “I have to come every 6 months and I am not going to wait for no doctor.” I replied, “Wow. I wish I only had to come every 6 months.” He gave me a strange look and left.

This is not your normal doctor’s office. These people are dealing with life and death. They are trying to see the very sick as quickly as possible. Sometimes cases take longer.

While I waited in the room for the doctor, a front desk person I had developed a relationship with came to talk with me. I asked her if they often had those types of people. She said rarely. He is nothing but a sweet angel to the doctor but a total jerk to everyone else.

I said that he was probably sick and was very scared. Some people show it in funny ways.

I hope that’s what it was.

I hope that he was not just a jerk.

UPDATE: My mom’s back is better. She thinks the epidural hit the right spot this time and is feeling a lot of relief. The doctor said that surgery would probably not help her situation. She has an appointment later this month for a consultation with the surgeon. The doctor also gave her something to improve her appetite and she is eating again. Thankfully.

Saturday, January 2, 2010

Helping Others



One of the most satisfying things that have happened to me is when I can use all my experiences to help someone else. A friend in the other rehab has a decades old relationship with a man who was recently diagnosed with stomach cancer. He was convinced that his life was over as, to him, cancer is a death sentence. How can he possibly survive with no stomach?
She asked if I would speak with him. A phone call was arranged. I began with a story I had heard on a local radio show where woman phoned whose mom sounded like she had lung cancer. The doctor said that cancer these days was no longer a death sentence and most are survivable.
We talked about living with little to no stomach. I told him about a parent at the school who is still alive many years after losing her entire stomach. I also reminded him about the gastric bypass people who survive on a very tiny stomach. One problem was that this man could not afford to lose any weight and his issue would be eating enough protein and staying hydrated.
We also talked about facing a bad diagnosis. So much of what I have written in these blogs was discussed. We talked well over an hour.
She told me a few days later that he was very hopeful and more positive after we spoke and even believed that he might beat the cancer. After the surgery, she shared that the cancer was so small, no chemo or radiation was necessary. They also left 1/3 of his stomach which was more than expected. He did lose twenty pounds but has regained seven. It is a beginning. All good news.
As he is recovering, he is making plans. He is now planning to use his lawyer skills to work for Legal Aid.
He has chosen to live well with a bad diagnosis.
A business acquaintance of Michael’s was struggling with his wife’s extensive Lyme’s Disease disabilities. It had gone to her brain and other organs and she had profound limitations. He arranged for us to speak with each other on the phone.
I was able to give her some Medicare and drug information. We realized during the conversation that we were very similar in our approach to our illnesses. I told her that she is welcome to call anytime, especially if she is having a hard day. Her husband thanked my husband and told him that she was feeling more hopeful after we spoke.
I felt that I helped both people, even if just a little bit.
Made my day.
Next: Dealing with the Front Office

Friday, January 1, 2010

Weighty Issues

Like everyone else on earth, I will begin an eating plan today. Well, the last few days, to be honest. I will keep you updated on my progress. The goal is to surprise Dr. K. when I see her in May.

Thanks to our buddy Don, I found a plan that is doable.

In the other rehab gym, we notice an up tick of people at the beginning of every year. They are all gone by February.

If you have started a program, hang in there. One day at a time.

Here we go!