Living Well with a Bad Diagnosis - Lung Disease

Wednesday, June 30, 2010

Kate Smith


Please tell me that I am not the only person left on this Earth who remembers Kate Smith?

When I purchased some stamps at the post office, the sweet young woman behind the counter brought out the new Kate Smith stamps. She said that they were very popular but she had no idea who she was.

How does one describe Kate Smith?

I tried but to no avail.

Today at the bank, my bills were on the counter ready to be dropped in the mailbox. The teller noticed the stamps then showed them to the other tellers. All four had never heard of Kate Smith.

I said she was sort of a larger, lower-pitched version of Ethel Merman. Their response, “Who?” I said, you know, “There’s No Business Like Show Business?” Four head shook. How about the movie, “It’s a Mad, Mad, Mad World?” Again with the heads.

So, after describing her and after quickly insuring there was no one else in the bank, I broke out my Kate Smith impersonation doing her famous “God Bless America.” They were roaring with laughter!

I left feeling very old.

Tuesday, June 29, 2010

Old Teacher











There is a new person at the front check-in desk at the other rehab. She is a neighbor of former students on mine and we know so many of the same people. She is so young!

Well, several weeks ago, she mentioned that she was thrilled to see a former teacher who often was in the cardiac rehab class during the same time I am in the gym. As I knew we went to the same high school – only almost 40 years apart – I asked whom it was.

Mr. Firpo.

Mr Firpo?!?!? He was my teacher, too! As I graduated high school in 1971, he must have been very young when he was my teacher.

Well, last week, she told me he was in the class that day.

I waited to introduce myself until we were at the arm bikes together. Who I saw before me was a very old man. I would never have recognized him though he was as lean and small as I remembered.

He was so kind, of course did not remember me but asked me if he was a good teacher. I told him that he was a very respected teacher and remembered that he was also the basketball coach. I also told him that he was the same weight as I remembered. He grinned and agreed. I then remarked what I really remembered is that he always looked very nice in a beautiful suit everyday. His eyes sparkled and his face lighted. He said he was all of 25-years old at that time and that his wife chose all of his clothes. He was going right home to tell her what I had said. He thanked me for introducing myself.

I look forward to many more conversations over arm bikes and on treadmills!

Monday, June 28, 2010

Mr. Curmudgeon

I have a new friend. I think he is probably in his mid-80’s. It developed slowly over time side by side on treadmills. I still don’t know his name.

During the other rehab, I would step onto a treadmill about the same time of day. He also would be on the treadmill during those same times. We began to talk. Briefly.

He was a total curmudgeon.

Somehow, I got him to laugh. Pretty soon, if I didn’t show up at the same time and we missed walking together, he would swing by and comment on my lateness. Pretty soon, when I didn’t show up because I was sick, he would comment that he missed me. Pretty soon, we began to talk about more important things. Pretty soon, he was telling me about his parents and his life.

The curmudgeon is actually a very sweet, very ill, very scared and very tender man.

Last week, he sat down next to me at the arm bikes after missing me on the treadmill. “Hi cutie pie,” I said. He giggled gruffly, but it was still a giggle.

New friend.

Sunday, June 27, 2010

Leopards at the Beach


Michael has a wonderful eye for design and color. It took me many years to trust his taste. We live in a contemporary style home so I decorated it in 1982 with lots of white carpets, white walls, white everything. It got old. Finally, in the early 1990’s, Michael begged for color. He took over.

There is not one single white wall anywhere in the house. It is a mix of colors from gold to taupe to light blue to greens. He recently announced that he wants to paint the family room red.

Deep breath.

Red. Took me a long time to come around to it.

So, this is how much I trust him now:

He spotted two armless bedroom chairs sitting on a pile of junk, which were clearly from the late 50’s or early 60’s. Classics. He bought them for $100.00, took them to his car upholster and talked him into recovering them.

We went in search of fabric. Remember, I had yet to see the chairs. They were to go into our bedroom. Our bedroom, which features the beach: coral, shells, mother of pearl lamps, paintings of beach scenes, blue linens and sand colored carpet.

The Beach.

He announced that he wanted to cover them in a leopard pattern fabric. Leopard?!? “But, we have a beach themed bedroom!”

His response:

“Leopards like the beach, too!”

I must have laughed for 10 minutes. So, trusting his design eye, we bought some leopard print fabric.


They are finished and arrived this week. I swear to you they look fantastic. I will never question his eye again.

Red family room? Bring it on!

Saturday, June 26, 2010

Don't Fence Me In









It is an old song and I couldn’t resist using it as the title of this blog. The fences are coming along. They are more than half way completed. It has been a long process.

As much as we like the people working on the house, it is still so stressful to have people around all day. With Michael gone, it usually falls to me to make last minute decisions. Thankfully, I haven’t screwed up yet!

As our bedroom window looks into the neighbor’s dining room, I often would be climbing into bed while they were having dinner. Only once did I catch them looking in my direction. With me in my PJs, once was enough for them! Never happened again. That part of the fence is the final one to be installed. It will be so lovely when we get our privacy back again.

So, I guess this blog should have been: Fence Me In – Please!

Friday, June 25, 2010

Jury Duty












I loved sitting on a jury. I had been on three of them through the years. The last time I was involved in the process, I knew I was ill but not yet diagnosed. It was the fall of 2004. It was a three-strike case and the father of the accused was going to be testifying against his son to put him away forever. The guy had a pasty look of someone who had been locked up for a long time.

My number was drawn and I was seated in the jury box. This was going to be a long case and I really was not feeling well. I didn’t want to be on this jury.

They asked if any of us had relatives who were attorneys. I raised my hand. Michael’s brother-in-law is a public defender. They asked how often I spoke with him. “Often.” They asked if he ever discussed cases with me. “Yes.”

They kept me on the jury.

Then they asked the jury if anyone was related to or friends with a police officer. Up went my hand. Our friend whose wife is very ill with lupus was a Sheriff but at the time was the head of Homeland Security for the county. They asked how long I had known him. “Since he was 16.” They asked if I spoke with him often. “Yes.” They asked if we talked about his work. “Yes.”

I also told them we were good friends with another Sheriff. The same questions were asked and the same answers were given.

They still kept me on the jury.

The last question was about the list of witnesses. They read the list and asked if we knew any of the people on the list. My hand waved one more time. People giggled and there was an audible sigh from the judge.

They asked how long I had known one of them. “Since he was 15.” They asked how often I see him. “Just talked with him in person last week.” They asked if we ever talked about cases, as he was a retired police officer who was currently a private detective. “Yes.”

The defendant’s lawyer talked with his client and they looked and pointed at me. Ah! I might finally be dismissed. It was actually the prosecutor who dismissed me. I smiled, thanked the judge and scurried out the door.

I am reminded of Papa Joe who always got out of jury duty when he would declare, “But he must be guilty if the police officer arrested him!” He really believed it.

When I was declared disabled and taking immune suppressant drugs, I was no longer allowed to sit in a room of people for hours or days. My doctor would not allow it. I think sitting that long would cause other issues as well.

So, three years ago I was declared permanently removed from the jury duty rolls.

Michael, who has only sat on one jury over 25 years ago, has otherwise never been even called to jury duty until I was declared permanently retired from the process. He has been called for duty the last two years and once again last week.

He asked if I would go with him.

We called the night before, as instructed and was told to be at the courthouse, which is an hour away at 8:30AM. We got up early, grab coffee, quick breakfast, made the bed, slapped on clothes and hit the road.

We arrived on time. We sat in the partially filled room in an area by ourselves, then we sat, then we sat some more. Finally at 11:39, it was announced that there had been a settlement agreement and we were dismissed. Off we went to our favorite Chinese restaurant for lunch then home for a good nap.

Jury duty. I'll bet he is called again next year.

Thursday, June 24, 2010

Little Brother, Part 2












Lee and I take full credit for my brother doing so well in school. The poor kid was forced to sit at a desk in the basement as we played school. She and I were the teachers and he was the student. We really taught him.
There were tests given.

Will he ever forgive us for what we made him do?

When the product Chip made became a success in the industry, he began to ponder. Lightening was his nemesis. It was the only thing he didn’t understand enough of to be able to combat its affect on his product.

He and Betty began the search. They fell upon a university in one of the storm centers of the U.S. Where better to study lightening? It was several states away from his job so he quit. Or rather, he tried to quit. They negotiated a part-time position, as they needed him to fly to their customers to explain his product. This offered him just enough income to not starve to death during the many years at the school.

Chip was able to find an advisor to oversee his research for a PhD. The advisor told us at the graduation ceremony that he was the first US citizen he had ever sponsored. Sad fact. His PhD would be in physics. Atmospheric Physics. As he had never taken physics class before, this was going to be a challenge.

He used a lot of duct tape and scrape material in a large truck trailer parked on the university campus to do his storm tracking and research. If a good storm was coming in at night, he would be notified by a group of students living on top of a mountain via shortwave radio at his home. He would hop into his car; drive the few blocks to the campus and fire up the equipment.

After many years, Chip developed a new system of looking at incoming storms. Usually, storms were seen in one dimension on radar. We have all seen that on the weather channel with its blips. He developed a way to take a pie wedge from a cloud to determine if there was lightening or hail based by the way the crystals were formed. This is now being used as an early warning system for farmers and ranchers throughout many states including Texas and Oklahoma.

I have told Betty that I so admire her for giving up her house and his income to move to the middle of nowhere so he could get his PhD. Not many wives would be willing to do that.

Later, Chip taught at the university but hated the meetings and the politics. He still teaches on occasion and loves the students who still drop by his house for a visit. He is currently working on a project funded by several countries. It has something to do with over 200 radar stations on the top of a mountain in Chile. It is the driest place on Earth as it has only 1/10th of an inch of rain a year.

The project is winding down and he is beginning to explore his options. They may need to move or he may be able to telecommute. Whatever he does, I sure it will be on his terms.

Wednesday, June 23, 2010

Little Brother












When we moved from the Chicago area, I was twelve going into the 8
th grade. I was ready for the big city. Chip was only 9-years old. He had been so used to spending all day wondering the state park next to our acreage and the open fields with his best friend and their two large dogs. They were free.

We moved to California with its small yards and no open space. He never adjusted. He deeply missed being able to roam. When he was older, he developed a relationship with the forest rangers in the large watershed near our home. They allowed him to wander into the mountains that were banned for everyone else. Finally, he was able to wander.

It is no wonder that he moved to an area out of California with a small population. He and Betty spent many weekends driving up wadis and washouts into the wilderness. He needed the space and the freedom.

He was in high school in the early 1970's when computers were first being installed in the school district. He eventually got them all up and running. He also took most of his senior level classes at a local college. He was bright and quiet but had a good group of friends.

After four years away at college to get his undergraduate degree in Electronic Engineering, he headed back east for his Master degree. It was not a good fit. He left.

As mom and dad had just sold their house when dad was forced into retirement, Chip had nowhere to go, so he moved in with us. At the same time, we headed to Hawaii and when we got home, he was moving out! He had found a job and an apartment. Easiest house guest ever!

After a few years, that employer offered to pay for his Master Degree at an exceptional local university. He took full advantage of it. He also began to think. What the company was making was very delicate and could only be produced when purchased. His job was to tune them to prepare them for their launch into space. From order to delivery was often two weeks or more.

He developed a new plastic that was durable and able to sit in a warehouse waiting to be tuned. The turnover from order to delivery dropped to just days. When dealing with orders in the millions of dollars, that was a big deal. It was his first patent.

Later, we met at a restaurant where he showed us a plaque the company had given him with the patient engraved on it. I read it or rather I tried to read it. I turned to Chip and asked, “Why is it in Greek?” He looked at me with a furrowed brow, “That’s not Greek!”

I smiled back and said, “It’s Greek to me!”

Tuesday, June 22, 2010

Minor Whining











I still don’t feel well, as I have never recovered from the concert and Mary’s visit. Add a cold to that and it has been along time since I have felt great. Recently, I have also developed an infection from the antibiotics and have a nasty cold sore that is comprised of small blisters, almost like shingles.

There is always a worry that this level of energy will become the new “normal.” I don’t like doing nothing, staying in, going to bed by 7:00 at night and sleeping until dawn. I don’t like needing to take a nap.

Everything everyday is a struggle.

I hope my energy comes back so I can look forward again. I feel stagnant.

Okay, end of whining! Thanks for listening!

Monday, June 21, 2010

Vinyl














When either my brother or son phones, I often get them confused. They have the same pitch of their voice and the same cadence. Weird, I know. It usually takes a couple of words to determine who is on the other end of the phone.

Neither feels they are anything like the other. They just haven’t spent enough time together. It is eerie that they are so similar in some ways.

Then again, sometimes it is just the little things.

My brother has a huge record collection and will talk for days about why CDs are the most imperfect way to listen to music. He has tapes. Reel-to-reel tapes. Cassette tapes. And of course the god to all purists: vinyl.

Don’t even ask him about BETA verses VHS. Don’t go there.

William’s last recording got lots of press because they recorded it on tape – old school. He said it produced a deeper, richer sound. Seems I have heard this lecture before from someone else!

They both lead their lives on their own terms. They both lead rich, full, unique lives.

Genetics.

Sunday, June 20, 2010

Happy Father's Day













I am always a bit irritated when a commercial on TV features a brilliant wife and very mouthy kids lecturing the “stupid” dad. When was it decided that dads are to be represented as lazy/stupid? Dads are so important to the raising of a child into a competent, positive adult. Why is there no outrage? Why is it okay?

Deep breath.

Michael and William love to be together. Thank goodness! Undoubtedly, our son will phone his dad sometime today. That is worth more than a hundred presents. Time. A conversation. A connection once again.

We have planned the day to include a small road trip to buy a donut for Michael from the outrageous Dynamo Donuts. It is, after all, Father’s Day therefore no calories.

We then plan to work a bit in the garden, sit on the swing and talk. Michael bought a nice bottle of wine, I am going to cook his favorite Mongolian Beef dinner (under 400 calories) and we are having Duarte’s Apple Pie for dessert. He chose the menu.

We will also talk about my dad today. I am so grateful for having had a truly wonderful father who would never be featured in one of those commercials. There are so many men out there raising their children with strength, kindness, love as well as teaching life lessons. I know in my heart that these men are the majority of fathers. Father’s are priceless.

Happy Father’s Day.

Saturday, June 19, 2010

Child Number Three
























Mom said that it was quite a difference to have two lovely, quiet little girls then have a boy. An active boy. A bright active boy.

My brother Chip got three mothers in the bargain. Poor kid. He was loved to death not only by mom but also by my sister and me.

We were all almost exactly three years and two months apart with me being the middle child. Recently, my mother changed her trust to have all three of us as the executors. In a normal family, this could cause huge problems. In our family, I really expect no issues.

Asking Betty what Chip thought about the change, she paused and laughed a bit then said, “Chip still thinks of himself as having two older sisters who will take care of everything.” Funny how things change but really remain the same!

I adored my older sister and I adored my younger brother. With almost seven years between them, I often felt I was the connector between them. I guess I still feel that I am in that position.

When I die, will they grow closer together or further apart? I hope together!

Friday, June 18, 2010

Family Matters












My brother Chip and his wife Betty head out in their RV every years and drive to Montana for a bit of fishing. They REALLY fish. They also have the trout smoked and jarred. Last Christmas, they sent one along with the other presents. It was delicious and almost tasted like smoked salmon.

They began their trip last Wednesday. I got a text from Betty yesterday that they had already caught 35 trout. What is different this year, is they are going to swing by our state for a visit on their way home. We are all meeting at my sister’s house near Sacramento for a day together. It is not often that we are all in the same room! The last time was almost two years ago for my mom’s 80th birthday.

We are going to have lunch at a restaurant where we can just sit and talk for a few hours, head to a local casino for some fun and really just hang out together. I am so grateful to be in a family where there is no drama. I am looking forward to spending some time together.

Thursday, June 17, 2010

Connections

A year before my dad died, he was in the hospital with what was described as a restrictive lung disease. They felt it was caused by some kind of exposure. He was a brilliant man – should have been a doctor – and was able to pinpoint the culprit as the indoor fountain we had given to them. He had been sitting next to it while reading the newspaper and doing the crossword puzzle every morning. He had been inhaling dirty water vapor. After they removed the fountain, he recovered completely.

At the June ILD meeting, Dr. Koth also mentioned that they are diagnosing a huge number of new cases of Hypersensitivity Pneumonitis in the city where my mother lives. It is in such large numbers that she began to even look at the migration patterns of birds from Mexico – the largest population of diagnosed cases.

Mom’s city is in the California valley, which supplies most of the state and much of the country with food. She often has a dry hacking cough during the planting and harvesting seasons. At night, she leaves her bathroom window opened and the sill be will have to wipe down in the morning because of the dirt collected during the night. Dirty air. Filthy environment.

When I told mom about the large increase of new cases of my disease in her city, she was worried that she was going to get it. I reminded her that one had to have a genetic pre-disposition and clearly I got mine from dad. If she had not gotten sick by now, she was not going to develop it.

Still, it is a strange coincidence.

Wednesday, June 16, 2010

Smoke Some Dope, Man











On the news last weekend was a story about the city of LA trying to gain control of the huge number of Cannabis Clubs – Medical Marijuana Clinics. Apparently, there are over 500 of them causing lots of different problems. Trying to regulate them has been a challenge.

It has been rather interesting to me that when some people discover that I am ill, they suggest I smoke some marijuana. Do they think it is really bright to put smoke of any kind into sick lungs? When I mention that I don’t believe that medical marijuana is necessary as the active ingredient in marijuana is available in a pill form, they scoff and say it is just not the same, man.

What is a bit of a shock is the type people who make these suggestions. They are not your typical “pot heads.” Maybe marijuana usage is more mainstream than I know.

Tuesday, June 15, 2010

Come Buy with Me!















My friend Christien is still friends with her former neighbors. On Saturday, one neighbor was throwing a “Tupperware-type” party for a group of ladies. Her friend was demonstrating and selling products made by the company who makes Silpats. Great product. I bought one for William for Christmas last year.

So I left the beautiful 75-degree coastside to go inland into the heat. It was really hot! Summer has arrived!

The ladies were so nice and no one knew that I am sick! I was able to feel normal! They cooked and served lunch from the bakeware: crustless quiche, roasted vegetables, small appetizers, tiny desserts. Delicious. I bought a few things then we headed back to Christien’s.

Before driving back to the coast around 5:00, I thanked her for making me do something out of my Saturday routine of working in the yards. She paused, and then thanked me for going with her. She also got out of her routine!

I spoke with her last night and she mentioned that when we walked up a flight of stairs at the party, it was frightening for her to hear me so out of breath. Actually, I don't think I was even below 89% saturation at the time and it was not a big deal. It really scared her.

Through this process, she has always believed that I was well enough to do more that I am doing. She even thought that I could work. She never really saw me exerting myself. She also doesn't see me the day after our evenings watching a play or a day shopping together. She never saw the needed recovery period.

I think she now understands a lot more.

Monday, June 14, 2010

The Great Wall

The out-of-control fence project is moving along. All the bushes and fences have been removed. We feel like we are living in a fish bowl, as we also don’t have any draperies so it has really been an adventure getting dressed in the morning.

It has taken another week of ivy removal in the neighbor’s yard and some bushes trimmed in Ron’s yard to prepare for the building of the fence. The wood was delivered on Friday and finally, the building had begun on Saturday.

The weather on the weekend was hot and I noticed Dave was moving slowly because of the extraordinary heat. I don’t want any heart attacks!

One fence panel was made and that will be the pattern for the rest of the fence. It is huge! Maybe a little too tall but I like it. Michael is not so sure.

I was so touched on Thursday when the three workers working in our yard and the neighbor’s yards, whom we have supplied drinks and special food to all week, knocked on my door to tell me they were going to cut my grass as a thank you. I was so touched. It was the best gift they could have ever given to me. So instead of spending the day working in the garden on Saturday, I was able to water and just do a bit of trimming. So sweet. So thoughtful of them.

Sunday, June 13, 2010

Frances
















The hardest part of having friends who are much older than I am is that they will eventually pass away before I do. Another of my dear older friends, Frances from the other rehab, died after a fall.

She was lovely.

One day, I remarked that her rings were beautiful. She thanked me then told me she had bought them herself. She had never married but wanted some fancy diamond wedding rings. I later learned that she had been married twice. She was just a bit forgetful!

Earlier, she had noticed that I read while working out and brought me some of her books: Romance Novels. Oh my. I accepted them with thanks then dropped them off in the surgery waiting room as I left the hospital.

She was such a nice lady and I am so grateful that she passed through my life. I will miss her.

Saturday, June 12, 2010

Michael J. Fox

I received an e-mail from the head of the ILD education group from my university hospital who was so impressed by how Michael J. Fox has chosen to live his life with the tough diagnosis of Parkinson’s Disease. She was listening to an interview on City Arts and Lectures on the radio while driving and quickly pulled to the side of the road to make some notes.

He was diagnosed at the age of 30. So young! What she found so impressive was his attitude about living well and his appreciation for the disease, all the things we have talked about in this blog. After reading the below, he is living what I think is a healthy respect for the disease but with great introspection and gratitude. His book is called “Lucky Man” which was published in 2002.

Here are some of her notes regarding the interview:

  • “The disease is not the whole thing – it’s only one fact, but there are lots of possibilities. The only non-choice I have is the Parkinson’s. I have a choice about everything else.”

  • “Around the non-choice is a plethora of choices”

  • “(The disease) creates possibilities”

  • “What has it given me? It’s nothing anyone would ask for. It’s the gift that keeps on taking” (he laughed)

  • “It’s given me compassion, gratitude, empathy, opened up possibilities to be of service. I went into politics – I wouldn’t have done that before because I wanted people to like me. I became an author, I started a foundation”

  • “What has it inspired me to do? Write books, start a foundation, look at how I approach my relationships”

I like him. I really respect him and how he has handled this disease. I must buy the book!

Friday, June 11, 2010

CT and PFTS and Baby Makes Four



































During the four hours I was at the university hospital yesterday, I had a high resolution CT Scan just minutes before I performed a full run of Pulmonary Function Tests. It was frustrating. I have been feeling so good that I thought the numbers would show improvement but alas, the numbers remained the same. No improvement. They kept reminding me that there is no decline either and that is a good thing.

The results of the CT Scan have not been reported to me. I expect to hear from Dr. K. within the next few days.

After I left the hospital, I headed back to the rehab class. It felt good to work out and sweat but I was tired. Really tired and feeling defeated.

So when I feel defeated, I find it is best to do something wonderful. I text Natalie and asked if I could visit them in the afternoon to hold the new baby.

So at 4:00, I found myself armed with dinner for the family and goodies for Winnie heading to meet the new baby, Oliver. What better way to end a very disapointing day?

Thursday, June 10, 2010

Former Neighbors A'visitin'
















It is always good to have a visit from Nancy and Jay. They were our neighbors before Ron bought their house many years ago. They retired out of the area, which broke my heart. We have deeply missed them though we are in touch and see them once or twice a year.

We moved next door to them when Dan was going to Berkeley and Janet was finishing high school. William was a one-year old. These were very private, quiet people yet they welcomed us into their lives. Nancy and I bonded over the garden. She taught me so much about working in and designing a garden but she also taught me how to make a mean pie. We became such good friends.

The weather is whacky this year and it has been raining! The rainy season is over! Stop! Where they live, it has been close to 100 degrees so they were happy to come to our wet foggy coast.

We chatted then went into town for a lovely lunch at an Italian restaurant. We have a favorite table there that allows for conversation, as it is a rather loud restaurant. They loved the food and we had a nice time. There was never a quiet moment.

After lunch, we came back to our house and shared some Strawberry Pie, a recipe she had taught me to make so many years earlier. She was delighted!

Have you ever had friends who always make you feels so good about yourself just by being with them? We also feel that we are living a good life, have the best garden, live in a greatest house and are the best people on Earth when we are with them. They just make us feel that way about ourselves. Every visit, they leave us feeling so much better about life and our future.

The best of friends.

Wednesday, June 9, 2010

June's ILD Meeting


I am so proud of myself that I made the effort to attend the ILD meeting at my university hospital.
It is my goal this year to go to these meetings and continue to educate myself about my disease.
This month, it featured some of the faculty and fellows who attended the 2010 American Thoracic Society meeting to give us an update in ILD (Interstitial Lung Disease). They also spoke about specific ILDs. Dr. Chris Ryerson spoke about the latest research studies for Idiopathic Pulmonary Fibrosis (IPF), Dr. Eunice Kim spoke about the latest research on Connective Tissue-related ILD and finally Dr. Laura Koth whom I had met years ago spoke about Sarcoidosis and Hypersensitivity Pneumonitis (HP). 

One fun fact was the results of the Viagra study that I had hoped to join. The study was for IPF only - not HP. Sad. That would have been fun. The results are in. The issue was to address pulmonary hypertension, which is very common in patients with IPF. The study was with 180 people with severe IPF whose DLCO were under 35 and it was for 12 weeks.
The Primary Endpoint was not positive. It was a short study and it seemed that Viagra did not help the hypertension. People with both IPF and pulmonary hypertension have a shorter life expectancy.

The Secondary Endpoints were more positive with a notation of and an improvement in shortness of breath, DLCO and saturation rates. Dr. Ryerson felt that there would probably be a bigger and longer trial in the near future.

Dr. Kim was probably the most interesting, as it was a totally new subject for me. It was about Connective Tissue diseases and ILD. These diseases include Rheumatoid Arthritis, Sjogrens Syndrome and Scleroderma. She works with Rheumatologists as so often these diseases also affect lungs in the form of an ILD. I had no idea. I have a lot of notes about the latest studies out of Japan and two university hospitals in the U.S. She also spoke about the interest in Vitamin D deficiency. The University of Cincinnati did a study of 93 ILD patients and found 54 had low levels of Vitamin D. There are also studies being done on the correlation between Vitamin D and some cancers, depression, PAD and autoimmune diseases.

Dr. Koth talked about the two granuloma diseases in ILD – Sarcoidosis and HP. In a biopsy, these diseases have little globs appear under a microscope. An environmental trigger causes HP and an antigen causes inflammation by kicking in the auto immune system. One must also have a genetic pre-disposition. Out of 100 people exposed to an antigen, only one or two will react. There is little to no research as it is hard to prove the antigen thus hard to gather a group together to be in a study.
HP only affects the lungs. Sarcoidosis affects a variety of the organs. Each patient can have a different issue. There is also a study in the south that is beginning to point to a link between TB and Sarcoidosis.
All in all, a very interesting few hours.

Tuesday, June 8, 2010

Back to Rehab












I had not been to my rehab class in almost a month. The last time was just before Mary’s visit in early May. Sad. I have gone to the other rehab but it has been crazy busy. Then I got sick. Anyone with even a sniffle is banned from both rehabs. We know not to show up if there is even a chance of a contagious situation.

I went to the rehab class last Thursday. It was good to see everyone and get caught up on other’s lives and health issues. We learned that Barbara – of the Sherman and Barbara saga - was in the hospital. I tried to visit her yesterday when I went to the other rehab but she was no longer there. Last time I saw her, she really didn't look good and it was rather shocking to see how quickly she had depleted. I hope she was well enough to go home.

My rehab class friend Sharon took her first steps out into the world since her diagnosis when she travelled to Carmel for two days. That is a challenge! For those who have never been there, it is a charming city whose main street is a long DOWNHILL walk to the beach. The problem is walking back up the hill. She felt confident, learned how to compensate and really had a nice time. Maybe she will try another outing soon.

Dick was not there because he was visiting a casino. I told him to call me if he won a million dollars. I haven’t heard from him!

Sherman was there complaining about not breathing very well lately. He said that the doctor said he is in great health except for the breathing issue. He so regrets the endless cigarettes for so many years.

What I notice most about not being at rehab is that I really miss the routine of it all. Leaving the house at the same time everyday, arriving at both rehabs at the same time, running errands, taking care of personal business and food shopping. My daily routine was thrown out the window. I like my routine. It keeps me focused and engaged.

So, after attending the class, I left there walking taller, breathing better and just feeling healthier.

But, I will miss today's class due to an ILD meeting at the university hospital. What I have learned from this break is that I need to get back to the routine of working out five days a week. Beginning again next week.

Monday, June 7, 2010

More Tear Down

The building of the “Great Wall” has begun. The fence between Ron and Susan and us is down. All of Ron’s bushes that both he and I have trimmed for over a decade have all been removed!

We approved a mock-up of the design of the new fence today. It definitely has an Asian feeling to it with a small-pitched roof covering the top additional foot of the fence.

Bushes are scheduled to be removed, camellias to be transplanted and Michael is finally going to get his bougainvillea. He loves them. The landscaper recommended one to replace a small trumpet vine that never did well. It will be the first thing that Michael sees when he awakens every morning. He is thrilled. He has had bougainvillea envy for years.

Here we go!

Sunday, June 6, 2010

Fences

After almost 40 years, our fences are being replaced. What a surprising amount of work! We are driving the project with the full support of Ron and Susan on one side and Morgan and Anne behind us. There is no way we are going to touch the fence between the difficult neighbor and us. Even when we replace or plant a new bush, they assume it is a personal confrontation. Imagine if we put a fence next to the one he built when we were on vacation in 2000. He would go nuts.

So, we have driven around the fancy areas, have taken lots of photos of fences and are meeting with the landscaper who did the hard and soft landscaping of our back yard many years ago. We are having him remove some large bushes along the back and side fences. I am done trimming. The goal to any change in the garden is to reduce the amount of trimming and work for me as I deplete.

As he has a “real” job now, he will only be able to work on the project on the weekends. He does really good work so we are willing to work around having the garden torn up to accommodate his schedule.

I also think that they will not be completed until after the book club has its planned late-June meeting here. I have contacted the head of the club and we are re-scheduling it after the summer. We will still host the next meeting but it will be sometime in September. The pressure is off!

Saturday, June 5, 2010

Chez Papa Bistrot












It is our favorite San Francisco restaurant. Our friend Don introduced us to the owners years ago and we have enjoyed many amazing, comfortable dinners in this southern French bistrot.

When Don told one of the owners that Dr. K said that my lungs had never sounded clearer and the crackling is gone, it brought tears to his eyes. Don told us to get up there for dinner with him! We met there Thursday night.

It is a loud, small restaurant so we always arrive as the crowd begins to thin around 9:00 then stay well after it is empty. As I am usually in bed by 8:00, this is a special night out for us. Marco greeted us with small plates and samples then came dinner. My favorite food on earth: Lamb Daube. It is the best.

The sauce for the Daube begins with the roasting of the bones, the meat is marinated in wine for 12 hours and the flavors in the sauce are slowly built from there. It is magic. It arrives in a soup bowl with several large pieces of lamb and a few small vegetables swimming in the rich sauce. I moan every time I taste the first bite.

We met a friend’s girlfriend for the first time and I offered her a taste of my Daube. She loved it. It was such a large portion, I gave her and her boyfriend over half of it. Michael had the duck confit, which is a whole other story. I loved it until I researched how it is made. I think it is the highest fat food one can eat and haven’t been able to order it since. He said it was delicious. Of course it was.

Marco placed one of each of their desserts on the table then we were entertained by hilarious stories told rapidly in a wild mixture of both French and English. Thank goodness for my college French!

We fell into bed at 12:45 and awoke happy having been with great friends and getting out of our routine for this fun evening. It was good for our souls even though I needed a five hour nap Friday!

Friday, June 4, 2010

Independent Living

I drove out to Mom’s to tour three independent living housing facilities in her area on Wednesday. It was an all day event. She has recently fallen again and it is just time to begin the process. Because she loves her doctors and her many friends, she wants to stay in her area instead of moving closer to my sister or me.

Of the three places we toured, one was perfect. The first one was very high-end and fancy with a fancy price tag as well– approximately $3,000 a month.

The next one was mostly Section 8 housing and government assisted housing for low income people. It was very simple and nice. It is perfect for people in need.

The third place was very nice – without the pool and very fancy dining room of the first place – but seemed to be a perfect fit for my mom. We toured two very nice 1 and 2 bedroom apartments, which included balconies. The good news is that the rent for a 2 bedroom apartment is under $1,500 a month.

After the tours, we went to lunch at a cute diner where we did the math to determine how many years would be paid from the sale of her house. She was very happy to have this information. The thought of spending that much money a month was bothering her and seemed to pull her into wanting to stay in her house a bit longer. She realized that she would probably not run out of the proceeds from the sale of her house.

After four hours driving then touring the facilities, it was a big day for me. I arrived home tired but not the exhaustion I expected. I was so happy to be able to be with my mom as she began the process into the next phase of her life.

Thursday, June 3, 2010

Welcome to Oliver

I had a lovely lunch with Winnie, Natalie’s mom and her husband in town Tuesday. We were waiting for the news as Natalie was in the hospital being induced. Seemed so “modern” somehow. In the days before cell phones, we would be at home waiting for the house phone to ring to hear the good news.

During lunch, Natalie phoned to let us know that it was going to be at least another 12 hours. Her mother and I looked at each other. Ouch.

So we had a lovely lunch, thought and talked a lot about Natalie and the new baby then Winnie took us to the most kid friendly, excellent quality toy store near by so she could buy something for the baby.

Around 8:00 AM Wednesday, she sent a text saying he had not yet arrived. Finally, the news came: Oliver was born mid-afternoon on June 2 weighing 8 lbs. 7 ozs. He even appears to have red hair just like his daddy.

Congratulations to Natalie, Ethan and Winnie! And Oliver makes theirs a lovely family of four.

Wednesday, June 2, 2010

Roy

Alone.

It must be awful coming home to an empty house every night. Our neighbor Roy has been adjusting to the sudden death of his wife last month and is so grateful to all neighbors. We had created a dinner food tree to make sure he enjoyed a hot meal every evening for the past month. Last night, I was the final person to deliver dinner to him.

I made comfort food: Meatloaf, panzanella salad, fresh corn on the cob and delicious bakery cookies for dessert.

Michael delivered it to his door and they briefly chatted. He noticed the pain was still in Roy’s eyes.

It is even more real for me as I can easily see Michael in this same situation. Thankfully, we have had these years to talk about what he should do afterwards.

My disease has been and will be a long goodbye. It is harder on the sick person but easier on the family as death is somewhat expected. Sudden death is often a lovely, easy death but very hard on the loved ones. There is no goodbye. Much is left unsaid.

As the weather warms, we will keep an eye out for him as he arrives home or walking around his yard. We will invite him over for a glass of wine and a chat.

My heart aches for him.

Tuesday, June 1, 2010

More Growth













It happened again Sunday. This year’s trend of expanding out instead of contracting in continues.

Lori called. We have had no contact with her or Dave for well over two years. They were having a small party to celebrate the engagement of their son’s best friend on Sunday evening. Could we join them?

So, unexpectedly, we found ourselves at a lovely party for two hours. It was fun. It was great to be with people in their late 20’s celebrating their future commitment to each other. Love was in the air!

We made a date in July to go out to dinner with Lori and Dave. We even committed to a specific date. It is on my calendar. It is in ink!

Earlier in the evening on our way to their house, we drove passed our first house we bought in 1976. We shook our heads at the sight of it with its peeling paint and hugely overgrown front yard. We finished painting it the day we brought William home from the hospital over 29 years ago and it has not been touched since. Coincidentally, the man who lives there also plays in the local orchestra.

Our former neighbor was standing outside his house talking with another neighbor. He looked confused as we drove by then backed up. He laughed and was delighted when he realized Michael was the crazy driver. We sat in their living room for almost a half hour and chatted. Such nice people. We made plans to get together with them as well.

I really like this year.