Living Well with a Bad Diagnosis - Lung Disease

Monday, November 30, 2009

Blood Money

When I got the Workmen’s Comp insurance check, we sat down for a conversation. I explained to Michael that I considered it blood money. It represented the illness, which will cost me my life. I wanted nothing to do with it.

It sits in a bank.

What is your life worth? My life is worth $145,000. Sad, isn’t it? It is considered a large settlement. Ha! What a bad joke.

I also wanted Michael’s approval of my other plan. If he remarries after I die and then he dies, this money will go to his new wife’s children.

The money should go to our son. He agreed.

The money is in my name only but has William’s name as beneficiary and will flow right to him. Use it well, my son.

Next: My Lowest Point

Sunday, November 29, 2009

After I Die





















Michael is a very handsome and an extremely charming person. I tell him that he will be married again within minutes of my death. Some woman will grab him and he won’t know what hit him! He swears he will never marry again.

We talk about what he should do afterwards. I had him promise me that he will not move for a year. People tend to make bad decisions based on emotions after a death. His support system is here. He has a large group of amazing friends and they will help him through the grieving process.

He says that he wants to sell the house after the first year and buy a small camper. The house holds too many memories. He thinks he wants to stay a few months in our son’s and my brother’s driveways. He also wants to just wander. I think he will end up somewhere in the desert as he has always been drawn to it.

Every few months, his group of friends gets together for “boys night out.” Their night out does not include strip clubs or bars. They meet at a Mexican restaurant and go to Starbucks afterwards. He is usually home by 8:30. These are good guys.

I was recovering from a surgery when his friend phoned. During the conversation, I learned that they were having a “boys night out” that evening but Michael told them that he was not going to attend. He had been taking care of me and was so worried he wouldn’t leave my side.

I told his friend to swing by and pick him up as he was going out with them. He needed it. One of the guys in the group is recovering from the death of his wife from breast cancer and another is the one whose wife has lupus. They understand.

When Michael got home from work, I told him he had twenty minutes to get cleaned up and ready to go. He tried to refuse but I was adamant. He needed a few hours of normalcy and laughter.

They will support him afterwards. I am leaving him in good hands.

Next: Blood Money

Saturday, November 28, 2009

The Circle Closes














When I left the school, began to focus on rehab and as we adjusted our life for the disease, we closed the circle around us. I am sure that some people felt left out of the informational loop but we really needed to concentrate on the illness.

As I have mentioned, the school never has addressed my departure and I have heard lots of rumors including that I have cancer. Their compassion and response has been very disappointing. There was no emotional support, no updated information regarding the illness, no dinner sign-up sheet, no nothing. I just disappeared in the eyes of the community.

I thought they would treat me with the same compassion that they teach to the students. I was wrong.

Many of the faculty members are still in contact with me. One told me that the Head announced in a faculty meeting that I had a genetic disease! God knows what she was saying privately to the parents.

A few of the parents and students did seek me out. One in particular would not back away. She moved forward with comforting e-mails, lunches, normal conversation and she had the ability to say all the right things at the right time.

I began to open up more. It is so hard as a very private person to talk about the huge emotional toll of a fatal disease with non- family. She has become family. She had gotten me though some bad times with elegance and grace. She is the kindest person I know.

The music faculty members were in touch for a while but I didn’t want to undermine the new Head of the program, so I backed away from them as well.

We did remove people from our life who were either too much drama or sucked positive energy from us. The circle is small at this point with just family and a few very dear friends who never need an explanation of where I am with the disease, as they have been walking through this process with us.

Next: Afterwards

Friday, November 27, 2009

Conversations While Carrying Oxygen

When I have to wear my large liquid oxygen tank – it is a Helios Marathon for lung people readers – it is enclosed in its custom-made backpack, which came with the Marathon. As I exercise or work in the garden, it allows my hands to be free and I don’t have to drag a cart behind me.

It is also a conversation starter.

While in the gym at the hospital, a woman approached me and asked me about my oxygen system. That conversation developed and by the end of it, I gave her names, phone numbers and resources for her husband who was struggling with a lung disease. She followed through and he is now in my rehab class.

A conversation that I will remember forever was at the county fair. Friend’s sons were showing some animals and we went to see them. Because we were going to do a lot of walking, I wore my oxygen.

Entering through the turnstile, a woman who was the ticket taker asked about my oxygen system. We began to talk and I was so surprised to learn that her husband had been diagnosed with Hypersensitivity Pneumonitis. I had only met one other person who had been diagnosed with HP. She was shocked that I was moving and active.

She said her husband was not doing well. The diagnosis had sucked the life out of him and he was totally depressed. She was working the fair for a second income as he was out of work and in bed all day. She was trying to help him but needed to support them financially.

As she told her story through tears, I learned that he had been treated at a small hospital and they really were not treating the disease well. When I told her all the tests and how my hospital deals with me, her eyes got huge. I encouraged her to get him into the university hospital lung clinic.

I also learned that they had not applied to state disability, Social Security Disability, or began the search to discover what caused the disease. She looked utterly relieved when we talked about possible income and future Medicare. We also talked about pulmonary rehab.

She was smiling and hopeful as we hugged goodbye.

Next: The Circle Closes

Thursday, November 26, 2009

Give Thanks

Happy Thanksgiving. There is so much to be thankful for this year. I am so thankful to have my family and friends in my life. I am so thankful that I am as healthy as I am. I am so thankful that Michael is healthy. I am so thankful that my mom is with is this year. I am so happy that our son is making plans and moving forward.


It just gets down to the basics, doesn’t it? Family. Friends.

With the economy, I wish a good job for everyone. Wealth.

But most of all, I wish you good Health.

Best wishes to you.

Wednesday, November 25, 2009

A Love Story - Not What You Think


You can imagine how thrilled my parents were that I was marrying Michael.
NOT!

He was not at all what they had envisioned for me. Mom asked, “Are you really sure?” Much later, she asked how I knew the handsome; smart, confident, kind person was underneath the quiet, long-haired child they met so long ago.

Dad told me years later that they decided instead of not accepting Michael – which would ruin their relationship with me – they put a loving arm around him and brought him into the fold.

In our house, Sunday dinner was always a nice roast with all the goodies. As Michael began to join us, these dinners would last for hours, as we would talk about politics, financial matters, stories my dad would hear during the week, jokes and just conversation. During those conversations, dad also was able to slip in stories about goal setting, money management, proper use of credit, how to treat and manage other people. He had the heart of a teacher. Michael listened and learned. He loved being with my parents.

We would invite them over for the day or, after they retired 100 miles away, for a few days. The TV was never on during these visits. We talked, laughed, played music and wicked card games. I always cooked big dinners and we would sit for hours talking afterwards.

As Michael worked hard to provide money for our first home then worked even harder so I could stay home nine years with our son, they really respected and admired him. They also liked him a lot. He is very likable! And did I mention cute?

I think my dad saw himself in Michael as they had very similar childhoods. Kindred spirits, so to speak.

My dad loved nothing more than a good Manhattan. It is a cocktail of bourbon and sweet vermouth, which is then shaken with ice and poured through a screen into a stemmed cocktail glass. He had tried for years to get Michael to try one but he would only take a sip and say, “No, thanks!” YUCK!

Well, one Christmas Eve when our son was quite young, dad suggested to Michael, “Why don’t we have a Manhattan?” For some reason, Michael agreed. The process began: shot glasses were used for measuring, it was shaken and delivered it a beautiful stemmed glass.

Michael took a sip and somehow, for the first time, it tasted delicious. They sat together in the living room near the Christmas tree with Christmas music playing in the background just enjoying them. They went back to the kitchen together. I heard shaking. Round 2. I think there may have even been a Round 3!

Dad and Michael were getting sillier and laughing. At one point, I looked over at them to see Michael’s head on my dad’s shoulder. He gazed up at my dad and asked, “Are we bonding now?” It has become a classic story in our family. It was the beginning of their love story. They adored each other.

Dad was in ICU for a month before he died and during that time his brother flew in from Tennessee. He stayed with us along with my mom. My uncle, mom and I drove into the city everyday to be with dad. Michael would drive up during his lunchtime to sit with him while we would go out to get some air and lunch. He would then go back to work.

We would come home from the hospital completely spent and emotionally exhausted. Michael would have cocktails ready for them and dinner for all of us.

In my extended family, it was whispered that I “didn’t marry well.” My uncle and I were driving home from the hospital one night when he mentioned how shocked he was that Michael would extend himself so much even though he was not related to my dad. He didn’t understand that Michael and my dad were very close and that he looked to my dad as a friend and mentor. He loved him deeply.

I saw my opportunity and said, “I married pretty well, didn’t I?”

“You married darn well and besides, I don’t think another man would put up with you!” he said with a laugh.

In the month my uncle was with us, he and Michael developed an amazing relationship, which continued until his death just a year ago. They would phone each other often and I would hear laughter from this end of the phone.

So many memories. On the first anniversary of my dad’s death, we brought all the supplies with us to make Manhattans at his mausoleum. We toasted him then sprinkled some on the marble.

Make a Manhattan and join Michael in a toast in memory of my dad tonight. Today is his birthday. He would have been 87-years old.

Tuesday, November 24, 2009

Motivational Speaker?!?












When I told Michael that I was thinking about writing a blog about our experiences over the last five years along with putting it into context, he gave me the go ahead.

We have handled it together based on what we have built as a couple. To understand how we are getting through this with our attitude, I was going to have to write about our beginnings and our life.

It is scary to put it all out there.

He does not read the blog but we talk about the topics. If I can’t remember a detail, he often will fill in the blank.

He says that what I really need to do is to be a motivational speaker. Yikes!! I don’t know if I have the energy though it is interesting for me to think about.

Who knows? Maybe. One day.

Next: A Love Story

Monday, November 23, 2009

Issue #1 - Energy Conservation


One of my biggest challenges every week is to manage my energy needs. Every Sunday, I review the upcoming week. If it is clear, a rare event, I go to rehab everyday, run errands, do more yard work, clean closets or other projects.
If I have a doctor’s appointment, I prepare by going to rehab the day before but nothing else. I do not go to rehab on the day of a doctor’s appointment and I need a day to recover afterwards by only going to rehab and nothing else. Michael will also make dinner those nights.
The hardest times to manage are holidays and company. My mom and son are currently the only people we allow to stay with us. I just can’t manage it without getting sick.
My mom lives 100 miles away. She used to drive herself in and back home again. Now that she is 81-years old, Michael thinks that we should not expect her to make the trek. She usually comes in one day, stays two more days then we take her home the next morning. Just enough. She and I are usually hoarse by then from talking the entire time!
With experience, we discovered that I do best by having Michael drive out to pick her up by himself while I go to rehab. I will not be exhausted by the drive and will have much more energy in which to enjoy her visit.
The last two visits, Michael had appointments so I had to drive her home. The first time, I got sick. It was just too much. The last time was just a few days ago. That evening. I told Michael that I was so tired that I felt ill then slept for 10 hours. I did not go to rehab the next day and tried to take it easy. It may take another day to recover.
Sometimes the schedule, like this week for Thanksgiving, is just so packed that I take a pretty good hit. I try not to panic, go to rehab and fit the rest in somehow. I do end up paying for it for days afterwards and will spend weekends never leaving the house. It is how it is.
I think energy conservation will be the constant struggle as we go forward. I need to constantly adjust to stay as active as possible. Staying active, my friends, is the secret to living well with a bad diagnosis.
Next: Motivational Speaker?!?

Sunday, November 22, 2009

I Give Up


That’s it. I give up.

A relative, whom shall remain nameless, has horrible asthma, yearly bouts of bronchitis resulting in hospitalizations, diminished lung capacity, is stubborn as a mule and knows it.

I love her.

I hear her struggling to breathe, she does not breathe well while sleeping at night, and she deals with horrible phlegm. I have tried to talk her into pulmonary rehab as I am convinced she needs supplemental oxygen. When I tested her with my meter, she was low.

After I told her about rehab, she took water aerobics instead. I mentioned that people with lung disease should not be in hot tubs or swimming pools due to the bacteria in the water vapor getting into the lungs. (I learned that in rehab.)

After doing the water aerobics, she then hired a personal trainer. I asked if he was trained to work with people with lung disease? Does he know how to check her saturation levels so he doesn’t hurt her heart or cause her to have a heart attack or stoke?

I told her that she will have more energy, great muscles, learn about lung disease and can take control of her breathing if she joined a rehab program.

With a nudge from me, her daughter looked into rehab programs in their area. She begged her mom to at least check them out. She refused.

She said she did not want to face the fact that she needs oxygen.

I am watching her deplete.

I give up.

I still love her.

Next: Managing a Busy Week

Saturday, November 21, 2009

My Crazy Diet

My friend Cynthia has bad hips from being a runner for so many years. She was having horrible pain and was trying to postpone the inevitable hip replacement surgery. About two years before my diagnosis, she did a lot of research and put together an eating program for herself.

She discovered an anti-inflammatory diet and read a lot about arthritis. She cobbled together a diet based on her readings, tried it and had no pain within a week. She still follows the diet and has not had the hip replacements yet though her doctor doesn’t understand how she is able to function.

When I got sick and I realized that my lung disease was an inflammatory disease (any disease with –itis on the end indicates inflammation), I talked to Dr. K. and she agreed that I could try the diet.

It began with three days of benign liquids: homemade vegetable broth, fresh fruit and vegetable juice, miso, water, and herbal tea. It was amazing how hunger went away. When the three days were up, foods in a specific order were brought back into the diet one at a time. If there is a reaction, that food is stopped and the next day is back to the original liquids.

The first food to be added to the diet was eggs. Delicious. No problem.
The next day, I added salmon. Never tasted so good. No problem.
The third day, yogurt was added. I got a screaming headache. I phoned my mom. “I think I may be allergic to dairy.”
“Well, we always thought you were allergic to milk,” she replied. “Mom! I am 52-years old and now you tell me that I might be allergic to milk!!” We laughed!
Other foods were added with no other problems.

I do not eat nightshade vegetables as the American Arthritis Association has noted that they can cause inflammation. Nightshade vegetables are potatoes, tomatoes, peppers, and eggplant. Besides dairy, I cut out all gluten, avoid sugar, any fake sugar and carbonated beverages. Because of the medications, I do not drink any alcohol.

So, what do I eat? The purest, cleanest, freshest food I can find. I am having a love affair with kale. It is an addiction. I eat protein, veggies, salads, fruit, peanut butter, water, water, water, gluten free waffles, and so much more. I have eaten this way religiously for over three years. I think that is why I have been able to achieve some stability with my lungs – along with the rehab exercises and the drugs.

On normal days, I still eat this way as I feel really good eating the freshest of foods. Do I ever have a piece of bread? It has to be homemade exceptional bread. If I have a piece of bread two days in a row, I notice that I just don’t feel good.

Dr. K. has been so impressed that I have been able to postpone lung transplants with my diet and exercise programs; she is now offering the information to interested patients.

Next: I Give Up

Friday, November 20, 2009

My Funeral


I went to a funeral today. A very lovely mom of a friend passed away at 84-years of age. It was a traditional Catholic service and it was great to see people I had not seen in awhile.
What kind of funeral do you want?
Some people want nothing. I think that a funeral or memorial service helps loved ones begin the grieving process.
I often joke to Michael that I will be lucky to have six people show up to my funeral!
As a producer of many performances in my working life as well as during my teenage years, it is no wonder that I have begun to produce my funeral. I have even asked a dear friend to complete the arrangements and to act as MC. Michael will be in no shape to pull it together and I don’t want to do that to him.
Hopefully, we can get a great hall with a good piano and acoustics for a program filled with mostly live music. I want specific former instrumental students to perform specific pieces of music.
I want other songs to be sung. One in particular puts our relationship into simple words. It is “Make Someone Happy” by Jule Styne with the amazing lyrics by Betty Comden and Adolph Green:
It’s so important to make someone happy,
Make just one someone happy.
Make just one heart the heart you sing to,
One smile that cheers you.
One face that lights when it nears you,
One man you’re everything to.

Fame, if you win it, Comes and goes in a minute.
Where’s the real stuff in life to cling to?

Love is the answer, Someone to love is the answer.
Once you found him, Build your world around him.
Make someone happy, Make just one someone happy,
And you will be happy, too.
And I want one song to end the ceremony. I cry when I hear a young Tony Bennett sing it and feel sad but renewed and hopeful when Nat King Cole sings it. I’ll probably go with Nat King Cole. It is “Smile” by ­the Charlie Chaplin with lyrics by John Turner and Geoffrey Parsons:
Smile tho’ your heart is aching, Smile even tho’ it’s breaking,
When there are clouds in the sky, You’ll get by,
If you smile through your fear and sorrow,
Smile and maybe tomorrow,
You’ll see the sun come shining through for you.

Light up your face in gladness, Hide every trace of sadness,
Although a tear may be ever so near,
That’s the time, You must keep on trying,
Smile, what’s the use of crying?
You’ll find that life is still worthwhile, If you just smile.

It will be my gift to Michael to remind him that indeed life is still worthwhile.

Wednesday, November 18, 2009

Medications

Recently, I was talking about my medications with a friend. It seems that I take one medication then two others to counteract the side effects of the first one. Crazy. I thought it might be interesting to other people with lung diseases to compare our meds. Here is what I take:

Azathioprine – This is the bone marrow drug.

Boniva – For bone loss due to the prednisone.

Calcium – Also for the bone loss.

Ipratripium Bromide Nasal Solution – This is for the chronic runny nose. I really try not to use this unless it is really bad.

Levoxyl – For Hoshimotos, which is an autoimmune thyroid disease.

Lumigan – For Glaucoma, which I got from the prednisone.

Oxygen – I use 2 liters during exercise and 2.5 liters at night.

Prednisone – For the lung disease.

Prichloperazine – Since my surgery in February, I cannot vomit. I use this if I am nauseous.

SMZ/TMP – This is a drug to insure that I do not get the pneumonia that is common in AIDS patients caused by the immune suppression properties of the bone marrow drug.

Spiriva- Inhaled for lung restriction and might be the cause of my memory issues.

Spironolactone – A diuretic used to counteract leg swelling due to the prednisone.

Vision Formula Vitamins – To support my eyes.

Vitamin D – My endocrinologist tested this two years ago and I had very low levels.

Vitamin C – This is good anti-inflammatory vitamin.

Even with Medicare, these drugs are not cheap. The generic ones had been zero co-pay until late this year. The others are expensive. I also fall into the drug gap where I have to pay full price for the drugs this time of year, which is not easy when you have no income.

Before Medicare, I use to have to manage these drugs on a monthly basis with the drug store. They were never due for refills at the same time. I swear I was at the drug counter at least two times a week, which was exhausting in itself. When we traveled, we had to be sure to be home before I ran out of drugs. If not, we had to pay full price out of our pocket for an additional month and the drug company would not reimburse us.

With Medicare, I receive 3-months of drugs through the mail, which makes it so much easier to manage.

Next: Funeral

Surgery with a Lung Disease


The ENT doctor did not want to do my nose biopsy in her office because drug sedation would be used, which could affect my breathing. Plans were made for same day surgery in a hospital.

After taking my morning medications as directed, we began the 40-mile drive to the university hospital in the very early morning hours. We made it to the freeway before I told Michael to pull over. I vomited. I did question the instructions to take the normal morning medications on an empty stomach, as prednisone can cause this to happen. We stopped three more times before arriving at the hospital.

This was a different hospital from my usual one and it was actually the same hospital and the same floor where my dad had died. I was not feeling confident.

The vomiting continued. The nurse set up the IV, pause for vomiting, the nurse took vitals, pause for vomiting, the nurse gave me something to make it all stop, pause for more vomiting, the nurse gave me something else to make it stop, pause for vomiting.

During this time, the anesthesiologist arrived. He talked to me about the procedure and informed me that I was going to be under general aesthesia. I refused general aesthesia. We argued. I vomited. We continued to argue. He got arrogant. I vomited. The ENT doctor finally arrived and said that I didn’t need general aesthesia. He stormed out. I should have cancelled the surgery.

One should not anger the person who holds ones life in their hands. Tip for the day!

Dr. K. had warned me that I should avoid general anesthesia and especially avoid being on a ventilator because my lungs were not strong enough to be weaned from it. I took her warnings seriously.

Surgery happened. A biopsy was taken and a permanent plastic nose disk was installed.

When I awoke, I was sitting up in a type of a recliner in a small room. I opened my eyes and in my direct line of vision, I was looking at the exact spot where my dad died. Michael was there and said, “I know, I know. This is not longer ICU, it’s post-op.”

I felt awful and kept drifting off to sleep.

The nurse came in and offered some juice. Cranberry, please. Within one minute, I told Michael to grab the garbage can. I vomited. After that, I don’t remember much.

Turns out I had a very high fever. I was admitted into the hospital and the fevers continued. Finally, in the early morning hours, they gave me aspirin, which brought the fever down. I was allowed to go home the next afternoon. Low-grade fevers continued for another few days.

Speaking with the ENT doctor during our post-op appointment, she told me that it was a good thing that I had not been under general anesthesia as there would have been a ton to tests to determine the cause of the fever. Instead, they think I had a virus, thus the vomiting and fever.

Simple. Thank you once again, Dr. K.

Next: Medications

Tuesday, November 17, 2009

Death Themes in Movies and Books


I have always been a reader. I believe that we should all be life long learners and reading is one way to continue with that philosophy. But, I couldn’t read for a few years after the diagnosis, as my mind just couldn’t absorb the words on the page.
Now, I carry a book with me every day to read on the treadmill. I have walked and worked through a lot of books.
What I have discovered is that I cannot read anything dealing with a fatal illness or see a movie with a death theme. It is just a bit too close. I don’t need to read about it or see it.
For some reason, people give me books about death and dying. Others recommend DVDs about the main character dying because “it’s a good movie.” I had a dozen people tell me that I HAD to see “The Bucket List.” Thank you but no thanks. Nor will I be seeing “The Road” anytime soon!
I’ll stick to comedies and light fiction. I always can use a good laugh!
Next: Nose Surgery

Monday, November 16, 2009

Lung Transplants


After our conversation about lung transplants with Dr. K., she recommended that we attend a seminar sponsored by the heads of the lung transplant teams from both of the local university hospitals. We learned a lot.

We learned that one had to be less than 30 BMI to even begin the qualifying process, which includes about six months of tests. All organs are examined.

We learned that the success rate was 50% after 5 years. At that time, one patient was still alive after 13 years. One. They do hundreds of transplants.

We learned that in our state, thanks to a male nurse at the university hospital, lungs are available for transplant if the patient is qualified. He has a system in place at many of the hospitals and nurses trained to contact the transplant teams. He has even helped to develop techniques to restore lungs that were considered unusable.

We learned that transplants do not extend life but give a better quality of life for a short period of time. It is probably the least successful of all the transplants though new research may change this.

Dr. K. wants me to qualify for the transplants. If I qualify now when I am basically healthy, other than the lungs, I can stay on the list until I am ready for the transplant, even if I am 70 years old.

My first problem is the BMI. I am about 20 pounds away and when I get close, I gain weight. Recently, I have realized that I am doing this on purpose because I just don’t know if I want the transplants. Maybe I should just go gently into the night.

I then think that if I don’t qualify for them now, it may be too late if I crash and need them quickly. Will I regret not qualifying for them?

I just don’t know.

Next: Death Themes

Sunday, November 15, 2009

My Dad, Frank Sinatra and Rehab

My dad deeply loved music. He introduced us to good music of different genres including jazz, classical, big band, and opera. But most of all, he loved Frank Sinatra.

Many hours of my childhood were spent in the living room listening to music and playing cards or talking. The other hours were spent with my sister playing the piano, my brother and I playing whatever instruments we had at the moment, my mom singing and my dad just smiling. My mom, by the way, actually sang with a well-known Big Band before she was married and still has a great voice.

Dad loved music but had absolutely no musical ability. None. He could not even play a cowbell. We were lucky to get my mother’s genes for playing instruments but all three of us developed a deep love of music from my dad.

Some business associate gave dad “Frank Sinatra Live at the Sands with Count Basie” double record set. I could sing along with every song, know which song was up next, recite all the banter and jokes, and loved it for the first 1,000 times. I joked with dad that I HAD to get married. He knew something was up and started to giggle, “You had to get married?!” he asked. “Yes,” I replied. “I was driven from my home by ‘Frank Sinatra Live at the Sands with Count Basie’ double record set. Just couldn’t take it one more time!” We had a good laugh.

Years later, we were with them for a visit. Mom and I had been shopping and arrived back to their house. As we came in the door, IT was playing. We talked in the kitchen and I tried to ignore it. I remembered all the songs, I knew which ones were coming up and I even remembered the jokes.

We said our goodbyes, got about two blocks down the street when Michael said, “Your dad played a great Frank Sinatra CD recorded in Las Vegas. I’m going to pick it up.”

Oh, No! I said, “You have to make a decision right now. It is either that album or me. I had to listen to it at least 5,000 times and don’t ever want to hear it again.”

My dad was a smoker. He quit a few times and ended his affair with tobacco in his late forties. Later, he developed emphysema. During the 8-week rehab class, I learned so much about emphysema and was saddened that my dad had not participated in a pulmonary rehab program. I don’t think they even existed back then. It could have provided him a better quality of life as he grew older. We just didn’t know about it.

Twelve years ago today, my wonderful dad died after a month in ICU following same day elective surgery. He was 74-years old.

Mom asked if there was anything of his I wanted. There was only thing: “Frank Sinatra Live at the Sands with Count Basie” double record set.

I was in such deep grief that it was well over a year before I could even listen to it. It was much too painful.

We now listen to it often and all the wonderful memories of my dad embrace me like a hug. Tonight, we will listen to it again. I still deeply miss him.

Next: Lung Transplants

Saturday, November 14, 2009

Pulmonary Symposium and Rehab


I never spoke in class at school. In my senior year in high school, I took a required Speech class and loved it. I especially loved having the audience’s emotions in the palm of my hand. It was addictive and I won several speaking awards. Michael said he would never argue with me because he could never win. The trophies were proof!
When I was Head of the music program, almost every day I had to give a formal speech, serve as MC, teach a class or talk in front of groups of interested parents. No problem.
So when the lung team from the hospital asked me to be the final speaker at a seminar for pulmonary doctors and specialists from around the country, I did not hesitate. They asked me to speak about being diagnosed, the cause, my philosophy and especially my diet and exercise/rehab programs.
Apparently, most doctors do not recommend rehab for restrictive lung patients, as it does not help the disease. I spoke about rehab improving a patient’s quality of life as well as provides social and emotional support.
While speaking with the doctors afterwards, I heard their frustration that patients are not willing to do the work of rehab and will not follow a diet. I asked that they please offer it to their new patients but also try to inspire them to give it a try.
It was many months later I read that it is now recommend that pulmonary rehab be prescribed for restrictive lung people. Nice.
If you have a lung or heart issue, please seek out a rehab program at your local hospital. Insurance or Medicare will cover the cost for the first eight weeks but maintenance is not covered. It costs me $28.00 a week. Is a better quality of life worth $28.00 a week? Just do it.
Next: My Dad, Frank Sinatra and Rehab

Friday, November 13, 2009

Nasty Comment and Other Thoughts

This is a CT Scan of a person with Hypersensitivity Pneumonitis. The dark area should be totally black.
This is what "ground glass" looks like. Small lungs. The white areas are organs.

Strangers say the oddest things to me. Getting onto the elevator after rehab, I was in a sweat and had the oxygen on. A woman got into the elevator at the next stop, looked me up and down and without preamble said, “You shouldn’t have smoked.”

What do you say to that?

The elevator opened to the lobby, I turned to her and said, “Funny thing is, I have never smoked,” as I left the elevator.

During the interview with the insurance company doctor, he found a lesion in my nose. My disease also has a sinus issue and I had a constant drippy nose and nose bleeds. By the time I saw a doctor for the biopsy, it had broken through and I had a hole in the cartilage between my two nostrils.

Meeting the ENT doctor, she asked how much cocaine I had used in the 1980’s. Oh my. I replied that I had a baby in 1981 and was making large house payments through the 80’s so I never had the money or the want for cocaine.

When I was first diagnosed with the lung disease, the resident told me that had I smoked, chemicals in the cigarettes would have killed the antigens and I would not have gotten my disease.

So, I didn’t smoke and got a lung disease and I didn’t use cocaine but have a plastic disk in my nose. How ironic!

Next: Madam Speaker

Thursday, November 12, 2009

Paris

Before I die, I want to go to Paris. I studied French in high school and college and have always want to visit this international city. We have traveled the world but somehow Paris has escaped us.

The problem is that I cannot fly or travel by cruse ship. It is the ventilation systems and the risk of illness. As Dr. K says, “If you crash (health-wise) in Paris, I can’t get you home.”

If we are ever able to go, we want to go for a month and just absorb the city. I would die happy.

When Dr. K visited us in ICU in February, she had just returned from a trip. “How was Paris?” I asked. She paused and said, “We will get you there.”

I am planning on it.

Next: Nasty Comments and Other Thoughts

Wednesday, November 11, 2009

The Best Husband in the World - Our Story


In the summer of 1971, I was running a rehearsal of a dozen musicians and singers. We played a Mass every Sunday in a huge church and filled every seat, including a very famous old crooner and his family. One of the singers told me that his cousin was going to be joining us. Sure. Fine. Let’s practice.

The next week, in walked this very nice looking, clean (a rarity in the early 70’s), skinny guy carrying a new Gibson Hummingbird guitar. The guitar wowed everyone but when we began to practice, I was wowed by how well he played. It was Michael.

After a while, we were asked to split up the group and to play an additional Mass. I told the Brothers that I would play an evening Mass and would take the two best guitarists with me: Michael and Matt. I was no fool.

One day, my little 1964 VW Bug was parked on a side street while I was directing a play. It was hit. I told everyone at the next rehearsal and Michael said that he was an apprentice in the Body trade and he could fix it for me. No, thank you.

Less than a month later, it was parked in the same place but turned around. It got hit and again he offered to fix it. No, thank you.

Just over a month later, I was hit while making a left hand turn when I lady decided to pass me on the left. Michael once again offered to fix it. This time, my parents said yes but they wanted to have his full name and the phone number of where the car would be fixed.

That evening, I was standing in front of my house with a piece of paper and pen to write his name and number. He told me his last name. I swear to you this really happened: as I wrote it down, I knew immediately that I was going to marry him. It was clear, absolute knowledge. From that point on, I let him take his time. I knew to the bottom of my heart that we were going to be together for life. I was 18 and he was 19-years old. Just kids!

Later, Matt left us for college. He is currently a very famous chef who we just visited this past May after not seeing each other for almost 40 years. It was as if time had never passed.

Michael and I decided to keep playing with just the two of us. During this time, we were also playing a lot of weddings and a few songs for my best friend’s crowning at a Mason ceremony. We saw each other a lot.

In February 1972, I was working the lighting and sound boards at my college theatre and went out to the parking lot at midnight one night to find Michael parked next to my VW, just waiting for me. I was so surprised. He wanted to have dessert at a local coffee shop together. After we were seated, he disappeared. I thought he was probably using the men’s room until he return to the table and said, “I just talked with your Dad to let him know that I am with you and will make sure you get home after dessert.” My Dad! He phoned after 10:00 at night!! This is just never done! Wait, oh, how sweet is that?

The next night at midnight, he again was waiting by my car. This time, he brought a picnic for us to eat while looking at a gorgeous view. The next night, we went to dinner in the big city and got home around 2:30 AM. The next day he tracked me down and said, “I really like you but these hours are killing me. When can we see each before midnight?” I told him May as I was taking a huge class load. That didn’t stop him. He spent many hours sitting at my kitchen table with me while I did homework and studied.
Three month later we decided to get married but waited until September 1973.

I win. I do have the best husband in the world. For me.

We have gotten through the worst of the realization of the impact of this disease on our lives with humor and the knowledge that we are going to see it through together.

My Workmen’s Comp lawyer told us that we were the most functional people he had ever met going through the long process. He said that most people either divorce or are living with relatives and bankrupt. He asked our secret. Fortunately, we have never lived above our means, had no debt – not even credit card debt – and had lots of savings. We adjusted to my loss of my income. We kept the focus on living well to help my body to try and heal.

We do have fun and laugh a lot. Recently, we were walking down a busy boulevard in a major city feeling like salmon swimming upstream when Michael noticed that people would look at me with the oxygen candela going into my nose and step aside. He grinned and said, “You go first and clear the way for me!” It sure worked and we had a good laugh.

He makes my coffee and breakfast every morning and for that alone, he should win the best husband award.

He also keeps an eye on me.

After the lung biopsy, I would find him staring at me. If I sneezed, he would ask if we should call the doctor. He would make my lunch before leaving for work and cooked amazing dinners. I would wake up in the night to find him watching me. He said he would watch me sleeping to make sure I was breathing.

In the evening, he will disappear for a few moments then come back into the family room to tell me that he has turned on the TV, turned down the bed and set up my oxygen. He notices when I am done for the day.

When we were traveling this past May, I was enjoying seeing his sister’s family and could have talked for hours. At 9:30, he announced from the stairs that it was time for me to go to bed. I was a bit irritated until I realized that he was right. If I didn’t get to sleep, I would be wrecked for the next few days while traveling which could make me ill.

I am in very good hands. The best, in fact.

Next: Paris

Tuesday, November 10, 2009

Movies

Michael hates to go to the movies. He always gets the kid behind him who kicks the back of his seat the entire time. So, the only thing that can drag him back into a theatre is a new Clint Eastwood movie.

To avoid crowds for me, we went to the first showing on a weekday morning. No one else was there! In stadium seating, we sat about five rows up the stairs and close to the center.

Another couple arrived and sat right behind us. No problem until they both started coughing. Michael turned around and asked, “Would you say that your cough is allergies or a cold?” They looked shocked. I piped in, “I’m sorry. I have no immune system.” The man said, “Oh. Ah. More a cold, I guess.”

We immediately stood up and moved down two rows and closer to the aisle.

Other people came in. No problem.

As the lights went down, three huge guys sat right behind us, began laughing and talking, smacked their lips while eating and the final blow was the large belch after drinking a cola.

We looked at each other and moved two more rows down and more towards the center.

We enjoyed the movie.

It will be a long time before I will be able to get him back into a theatre.

Next: The Best Husband in the World

Monday, November 9, 2009

Why I Fight So Hard

Today is my birthday. I am thrilled to have my mom with us today. It is a bittersweet as I do wonder how many more birthdays I have left.

Every morning when I feel like climbing back into bed, I get dressed and head out to rehab or the garden. I fight to stay active. I take all my medications properly, I see other doctors for other issues, I eat a funny diet, and I do what I can to stay well.

Why?

What drives me each and every day is my son. I want to see every moment of his life that I can. I want to be at his wedding. I want to hold my grandchildren.

He is what drives me to fight so hard to stay alive.

Next: Movies

Sunday, November 8, 2009

Cleaning Products without Chemicals


Years ago, I told Michael I needed help. Working long hours just didn’t give me time to clean the house and take care of the gardens. He said to choose which one I wanted to do and hire out for the other.
I love to garden. Also, not much happens in a garden for several winter months so there is a bit of a vacation from it. A housekeeper was hired. All was right with the world.
Before I was diagnosed, aromas began to irritate my lungs. Heavy perfume, hair spray and even some deodorants made me feel like I couldn’t breathe.
Cleaning products also became a problem.
A friend told me about an environmentally friendly product on the market called METHOD. It is a line of cleaning products made to not irritate skin and contains no harsh chemicals. I tried them and they are the only products in our home. I buy them at Target.
If you have an issue with aromas, I highly recommend this entire line of products. Try them.
Next: Why I Fight So Hard

Saturday, November 7, 2009

Uncomfortable in Social Settings


I was a social animal. I loved going into a room of people I had never met and having a conversation with each person before the evening ended. That, to me, was a good time.

Since I became ill, social situations are so much more difficult. It is easier if the people have been warned that I am ill, as I have no problem answering questions or talking about it. I just don’t want to bring it up.

I don’t feel as confident as I am heavier than I wish and have a fat, round moonface from the drugs. 

Since I am nervous to be in those situations, I tend to sweat and be out of breath. Not at all charming. I also can’t stand for a long periods of time so I have to sit alone on a chair or couch somewhere.

We were on one of our road trips and visited a friend of a friend. He knew about my illness and, years earlier, he had lost his wife post transplant to a different disease.

His girlfriend was flying in from a business meeting and met us at a restaurant for dessert. I spotted her coming towards the table to greet us. She was absolutely beautiful. Stunning. She looked me up and down seemed to sort of dismissed me, still polite but there was definitely an attitude there.

We spent the night in their loft and had an early morning breakfast together at a beautiful hotel. She was totally different towards me, very warm and friendly. Apparently, our friend had told her about my illness when they were alone, she asked me some questions about it and we left with a hug.

So, as the holidays approach, I begin to dread the large parties where I don’t know anyone. Michael loves to go and knows many of the people so I don’t want to stop him from seeing everyone. I will go and smile and chat.

To find me, I’m the one sitting alone on the couch, sweating, smiling and looking at my watch.

Next: Cleaning the House

Friday, November 6, 2009

Barbara and Sherman

A trim 77-year old woman named Barbara joined rehab. She had a fungus in her lungs and her doctor felt that exercise might help her situation. She had been a PE teacher, lived on a golf coarse and was spunky. She fit right in with us from the very start. She teased Sherman and she gave it back as good as she got from Dick. I thought she was great.

Sherman asked me if Barbara was married. Barbara asked me if Sherman was married. Interest blossomed. They would greet each other with a little kiss on the cheek. I suggested that maybe Sherman should meet her for some coffee….

It was so much fun to watch their friendship grow before our eyes.

Then she disappeared. We heard that she was ill. The rehab personnel, by law, could not give us any information or phone numbers. We waited. After about six months, she came back to rehab. She looked horrible. The spunk was gone. She told me that she never weighed more than 124 pounds in her life but now, due to the prednisone, she was 176 pounds and feeling miserable.

She only came to rehab a few times then stopped coming all together.

Two weeks ago, one of the rehab nurses heard us outside the gym door in the lobby and came out with a letter addressed to:
Sherman (no last name)
C/O Pulmonary Rehab

He let us read it. She said she missed him and was told she was too ill to be in rehab. She also sounded very depressed and lonely. She was reaching out.

We all agreed that Sherman must send her a card with a note saying he would like to meet her for coffee. He followed though and sent a card.

Nothing.

Last week he sent another card and said that he would pick her up so they could have coffee and a chat together.

We are all waiting.

Next: Social Scene

Thursday, November 5, 2009

No Pain




There are two things I am very grateful for:
I have no pain
I do not have small children

A friend’s wife has lupus, which has also affected her gastrointestinal system. She is in constant pain and only the strongest narcotics offer relief. Pain drives her life.

She also has three children who have been raised with an absent mom and the constant presence of illness in their home. Her illness controls the entire family.

She calls me for advice. I tell her that nothing I have can compare to her dealing with pain. Somehow she needs to get her pain under control. She had a pain pump inserted into her back but had a horrible reaction to it. It was removed. She went back to the pain pills.

I feel so sorry for her. I feel so grateful that I do not have pain.

Her three children are now teenagers who are all very angry. Her illness affects their daily life – she can’t drive because of the drugs, she is not present at their activities, she does not cook, she stays in bed and shouts orders to them. She still wants control.

She was frustrated that they didn’t want to watch movies in her bed with her because the couch in the family room is uncomfortable for her. “Why can’t they adjust for me?” I reminded her that they have been adjusting for her for years.

To help defuse their anger, I suggested that she talk separately with her children and apologize for being ill. She was shocked. It is not her fault that she is sick! She should not have to apologize! It was then I explained that she needs to acknowledge the negative impact of her illness on their childhood and acknowledge their frustration living with a parent who is not really in their lives. Tell them that she wishes it had never happened and so wishes she could change it. Hug them. It could be a beginning of better relationships and understanding with her children.

I am grateful that my son was an adult and living away from home when I was diagnosed. It does not affect his daily life.

I so wish this woman some peace in her life.

Next: Barbara and Sherman

Wednesday, November 4, 2009

A Good Life


I live a good life. It is not what I expected to be doing at this point in my life as I thought I would probably be head of a large program or work with the Opera or Symphony in the city.

I have my wonderful husband who continues to walk with me through these final stages of life.

Our son is very successful in the music industry. When things were really bad, we would focus on him and talk about his current projects. We like to go to his concerts in several cities and watch him work. It is very satisfying. We are very proud of him and his success is his own.

I have a great relationship with my mom, am friends with my brother and sister and adore my niece.

I greatly admire and respect my mother-in-law. We are best friends.

My life before the disease and after the disease is so totally different. I have adjusted. I have built new friendships and tried to fill each day. I also try to physically push myself every day. If I have a problem doing anything, I push myself to do it. It may be easier tomorrow if I push myself today. If I don’t sweat hard enough in rehab, I kick up the speed or resistance.

I will drop everything to meet someone for lunch. My goal is rehab five days a week. I run errands, have endless doctor appointments, do paperwork, make phone calls, food shop, garden, do the laundry, cook, read and play the piano. The days go by quickly.

What I can’t do is stand for long periods of time, stairs or ramps, be around children or groups of people, sing, play my instrument, practice for required periods of time, have concentration, memory and focus problems, be as social as I was, and am out of breath just getting dressed.

I was extremely active, I now have a reduced life expectancy, not able to travel the world like we used to, need supplemental oxygen, no more dancing, and I have to plan my energy needs everyday and so much more.

I live for today and plan for tomorrow.

All in all, I am so grateful for being alive and functioning, much to the surprise of the doctors.

I am blessed.

Next: No Pain

Tuesday, November 3, 2009

My Mom and Disability Parking


My mom is 81 years old. Three years ago, she decided to try to build some upper body muscles. She told me that she was going to begin by doing push-ups every day.

She phoned the next day and said, “I am disgusted!”

“Why?” I asked.

“I tried doing push-ups and could only do 35!”

That is my mom.

She had a very rare cancer called Mycosis Fungoides that begins on the skin and will develop into Lymphoma. She refused chemo and radiation but allowed a salve made of mustard gas that removed the upper layers of skin. It worked. She has been cancer free for over 13 years and is the longest survivor of this disease at her university hospital. She told them that it will never return. It wouldn’t dare. She is one strong woman.

She is also very fit and looks at least 20 years younger than her age. Really. She is very proud of that.

So, one day we were together at the shopping center and I was looking for a disability parking spot. As I pulled into one and hung the placard I said, “When I am with you, people don’t question me about the disability card. They think it is for you.”

Well, that was the wrong thing to say. She was shocked. “Do you really think that people think I am disabled?” She hopped out of the car and tried not to look disabled.

Later, we were out again looking for another space. We pulled in, I hung the placard, turn to her and said, “Ok mom, limp!”

That has become our joke. Every time we park, once of us says, “Limp!”

Next: A Good Life

Monday, November 2, 2009

The Rehab Boys


After the 8-week rehab class, I was placed in a maintenance class for people needing supplemental oxygen. This is where I met my two boys: Sherman and Dick or, as they would argue, Dick and Sherman.

Sherman was a long-haul UPS driver who did the same run every night. He would stop at the same places, eat at the same diners and enjoyed the solitude of the road. He was very quiet, still very connected with UPS and goes to a monthly luncheon of their retired drivers. He is in his mid 80’s.

He visits his wife every month at the cemetery. I once asked him how she died and tears welled up in his eyes as he told me the story. She had her varicose veins stripped in one leg and was preparing for surgery on her other leg. They were sitting side by side in their chairs and he noticed that she just stopped breathing. She had a blood clot. She was gone.

He still lives in the house they shared but his two daughters are there as well. I tell him my job is to yap at him in rehab and his girls can take over at home. We women have him surrounded!

Dick was a meat cutter who is also in his 80’s. He worked hard and raised four really great kids. I have met all of them. He says that he used to go to work and go home. He never spoke to other people and was just very quiet. When he retired, he started coming out of his shell. Believe me, the shell is now gone!

One evening after he retired, he asked his wife what was for dinner. She announced that she, too, was now retired and that he was in charge of dinner. He taught himself how to cook and now spends weekends making huge quantities of food in containers for his friends, family, and me. He makes a killer Dirty Rice, Michael’s favorite. He says it keeps his mind busy and gives him something to do.

We talk a lot about restaurants, food, cooking techniques, jokes and newspaper articles. He also does not allow a pretty girl to pass by without saying, ”Hello!” in a big booming voice.

He, Sherman and I always meet 45-minutes before class in the lobby of the hospital and talk. Well, Dick’s voice is loud so the whole hospital hears our conversations and often other people will join in. We have about eight people who regularly join us now and we talk, laugh and have a good time.

Sherman told me that this has changed his life. He said that they never were silly or laughed at his house and he now looks forward to being at rehab and making other people laugh. At his age, he has just discovered this gift.

I am considered the rabble-rouser. I deny it, of course, by saying that I am but a gentle flower blowing in the breeze. Everyone in the room laughs. If anything happens, I blame it on Sherman, whether he is there or not.

I tease Sherman that he used to have a sterling reputation before I got a hold of him. He came in one day with a huge bandage on his arm. We were in the middle of the gym on the bikes when the nurse at the end of the room asked him what had happened. He said he had fallen down.

“Are you going to buy that story?” I asked the nurse. “What really happened is that Sherman was dancing naked on the table tops after two Martinis (he does love his Martinis), slipped and fell, thus the injury. Everyone laughed. Sherman turned bright red but was laughing really hard.

Dick has told me that the time we spend talking and laughing before class on Tuesdays and Thursdays is what he looks forward to all week. It is the best of his week.

I love both of them dearly. My life is sillier, richer, happier and just plain funnier for having them in it.

Next: My Mom and Disability Parking

Sunday, November 1, 2009

September Song


My parents had an amazing marriage. They actually got married twice. They eloped once in May of 1947 and made it official in September after dad’s mom found the first marriage license. Mom’s parents never found out about the first wedding. All the photos in this blog were taken during the second wedding.

My dad told me that my mom could have married so much better and that he never wanted to do anything to make her regret marrying him. My mom, on the other hand, said she would live in a cave to be with him. Nothing else mattered. They were very happy.


My mom’s father was a teaching PGA golf pro and the head of the largest ad agency in Chicago during the depression. He bought a new car every year. My mom was the youngest of three children and music played a huge role in their upbringing. She tells about her brother bringing a piano home and trying to get it up into his bedroom on the second floor. It got stuck on the stairs. As pianos and dining room tables are not real necessities, these were usually sold first if a family needed money during the depression. It cost her family more money to hire movers to get the piano into her brother’s bedroom than the cost of the piano itself. She talks about having her sister and brother playing duets with him in his bedroom and her in the living room while Mom would tap dance or sing from the bathroom. They went on vacations, joined a country club for golf, had wonderful dinners and clothes.


A few blocks away, my dad’s father was a salesman for company that sold cash registers, which later became IBM. During the depression, there was not a lot of need for cash registers. It was not a happy home. They moved from apartment to apartment, as the rent was not always paid. There was never enough food. He was the second of five children.

Dad once told me that the only time his father showed up at his school was the day he graduated from high school. He was a very absent father. My dad said that he vowed to remember what it felt like as a kid and not raise his own children that way. He was a type of father that is more common today but it was not at all common in the 1950’s. He used to say that the best part of his day was getting home as soon as he could to be with his family.

He was an outstanding cook who used to hang out near his mom while she was cooking. I would watch him “worry” a spaghetti sauce, make SOS from the Army days, wilted lettuce salad like his mom’s, corned beef and cabbage and the best French fries and onion rings on earth. He had heard about Pot a feu, which is a pot on the stove for months and the cook just keeps adding leftovers from dinners to create new soups each day. He took it on as a challenge. We would have hot soup when we got home from school half frozen from walking up the long driveway in the snow.

Everyone in their day had “their song” and for them it was the “September Song.” It is about two people growing older, worrying about the separation of death and appreciating each day together.

Michael and I were married in September 1973 and the words of their song have been so much on my mind these past few months:

Oh, it’s a long, long while from May to December,
But the days grow short, when you reach September.

When the autumn weather turns the leaves to flame,
One hasn’t got time for the waiting game.

Oh the days dwindle down to a precious few,
September, November!

And these few precious days, I’ll spend with you.
These precious days, I will spend with you.