Living Well with a Bad Diagnosis - Lung Disease

Wednesday, September 30, 2015

Recipes for the Week

Having inhaled iced tea into my lungs last Saturday, I was anxious to see my saturation numbers as I worked out in the pulmonary rehab class yesterday. Treadmill: 95% sats. Bike: 94% sats. My standard numbers AND I coughed less then usual on the bike. Relief. I think I may have dodged an infection bullet. The final test will be during class tomorrow. Hopefully, those numbers will hold.

I am going to do some paperwork this morning then I plan to go for a walk before a quick stop at Safeway. There is an orchestra rehearsal tonight and I need to be sharp so it will be a rather quiet day! Tomorrow after the rehab class, I will go to the butcher's and Trader Joe's for food for the week. Below are the recipes for those of us who must watch our sugar processing. Prednisone over a long period of time makes the pancreas grumpy. Protein and non-starchy vegetables keeps it happy.

Summery Pizza Omelette - HERE
Spinach Deviled Eggs - HERE
Linny's Whopper in a Bowl - HERE

Sesame Chicken Kebabs - HERE
Pork Chops with Spinach with Sesame and Garlic - HERE
Tuna with Jalapeno Sour Cream - HERE

Tuesday, September 29, 2015

Brain Study Details

The good news is that I have a brain. The bad news is that it is not as sharp as it used to be! I blame certain medication. It's the only thing I can blame other than being older.

The brain study was very interesting. It will study people's brain function over time. I am number 197 of 1000 participants. It involves doing memory tests on the computer every three months, checking in with the study in person for more tests and a voluntary MRI, which I am not going to do.

It began with a series of words, which I had to repeat back to Cynthia as many as I could remember. First time, not many. She did this five times with me doing better each time. Then, she gave me a second series of words. Again, I had to repeat as many as I could back to her.

She then read two very detailed stories, one at a time. I had to repeat back as many details as I could remember.

 Afterwards, she asked me to give her as many words from the first series of words, again.

Then, paperwork. I am a visual learner so that was so much easier. I had to draw lines, like dot to dot, in this order: 1 a 2 b 3 c etc. There were a couple more of these types of timed tests.

She read a series of letters and numbers, which I had to put in number order first then letter order a-z. That was hard. No pencils allowed.

The peg board was brought out. Right hand first then left hand. It was timed. She told me that before MRIs, peg boards were used to determine in someone had a brain tumor or serious issues in their brain.

She then asked me to give her as many words from the first series, again.

She also asked me to repeat the stories with as much detail as possible.

We then went to the computer and did the exact same problems I had done, unobserved, at home. Dots flash in a certain order that I had to recreate. It got hairy as the number of dots increased. Then, I had to do them backwards. Oh my.

Cynthia asked me a series of questions about both lists of words at the beginning of the exercise. I was to say whether the word was on either list.

She also asked a series of questions about the two detailed stories and I had to answer yes or no.

After an hour and fifteen minutes, I was finished. Oh, I forgot, I had to give a good amount of saliva into a tube for DNA testing.

All in all, very interesting. I wish I had a better memory but I think the Lipitor had something to do with that.

Mom and I met for a nice lunch and two hours of conversation! We had not seen each other since Friday. I told her about the Audi dying, our Saturday visitors and Sunday chores. She told me all about her poker game, a bit of gossip, her work with her garden pots and baseball. We had a nice time even though my brain was tired!!!

Monday, September 28, 2015

Brain Study

I took it easy yesterday after cleaning up the kitchen, doing the ironing, cooking stuffed eggs wrapped in bacon then turkey breakfast sausages for Michael's breakfasts for the week, loading our daily medicine containers, organizing the bills, feeding the neighbor's cat and before I made some dinner. As you can see, not a whole lot of taking it easy!!

A while ago, I joined a brain research study at my university hospital. It involved doing memory computer games and providing information about my medications, health and family to the researchers. Today, I will be giving them my DNA and I will be doing the exact same memory computer games but will be observed this time. They will compare the results with the last tests I completed alone from home. What I will not do for this study is to have a brain MRI. That was the only request I turned down.

We will be meeting in the very old, very large Veterans Hospital hanging from the cliffs in the city. I have always wanted to wander through the massive grounds and today is my chance! There is actually a marked parking spot for the study volunteers near their research building.

The appointment is to begin at 10AM and I should be finished by noon, then I will phone mom to decide if we will see each other or not. I may be exhausted. All in all, it should be interesting.

Sunday, September 27, 2015

A Rare Dinner Out with Friends

What a night! We met our former neighbor Nancy with her daughter Janet and husband Michael at our house at 5PM last night. Wine was served as well as a small tastings of bourbon between the Michaels. Simple appetizers and lots of conversation were both enjoyed before driving to the harbor for dinner. We had reservations, thank goodness, as the place was absolutely packed. We got the perfect table along a wall so we could really have conversations and hear each other!

We told stories, we told them about William and his latest adventures, we told them about my health.

My health. Something happened around noon yesterday. After doing the yard work, I sat down and drank some iced tea and it went into my lungs. It was painful and I couldn't stop coughing to catch my breath. It was scary as I thought I was going to pass out. I was alone. Quickly, I got my oxygen and that helped. Having done this before, I know that it will cause crackling in my lungs and an infection in a few days. Nuts!

Back to dinner: everyone enjoyed pasta except me. I had some very rich pork (I gave half away as tastes) and was not able to finish it. There was also a salad of beets and octopus which was absolutely delicious. My favorite of the night.

It was so much fun to see our dear friends. Nancy deeply misses Jay and his ashes were scattered in Hawaii a month ago. She is having a hard time adjusting to him being gone. His death was such a horrible shock. She was so proud of herself that she had driven to Janet's house all by herself for the first time on the weekend. Baby steps.

Saturday, September 26, 2015

Oxygen, Please

I think we lost a car last night. The Audi died on Michael and we think it is the transmission. It is an old Audi and we probably won't put any more money into it. He had phoned me to pick him up over the pass near his work where the car stopped in an intersection. Some guys helped him move it out of the way, he told me where he was so we waited together for the tow truck to rescue us.

Two hours later, we had it stored at Michael's work where he will take a good look at it today. Next, I worried about his low blood sugar so we stopped to get a quick bite to eat. While driving home, it occurred to me that as my need for supplemental oxygen increases, things like this could be very difficult. An unexpected extra couple of hours out of the house, the need to carry enough oxygen at all times and the need to plan for every eventuality.

I don't need oxygen 24/7 yet. It will happen one day sooner rather than later. For some reason, last night it became clear to me how our lives will need to change when that happens. I also have great empathy for anyone who is already dealing with hauling oxygen around all day, everyday. The goal will be to stay active and to get out of the house. Easier said than done!

Friday, September 25, 2015

Day Off

We made it out of the house in time to turn it over to the housekeepers with a quick stop for a cup of coffee and a ride up the coast to the tunnel. We sat on the wall over the very blue, very flat ocean looking for whales. No storm coming it, that is for sure. Suddenly, there was a spout then a small whale popped up for a look around. Just breathtaking. After a while, we drove back to town to do some food shopping for the company coming on Saturday.

At home, we pulled William's 1966 Mustang out of the garage and drove down the coast for lunch. There was not a lot of traffic and the ocean was the most beautiful deep blue color. Lunch was fun at the yuppie campground restaurant. The campground was hosting a corporate event with music and people wandering around the back yard area off the restaurant porch. We wandered into the General Store and bought another pair of very cool sunglasses with bamboo arms after lunch. 

It was warm that far south but it got cooler as we got closer to home. We both settled in for a nap until our new neighbor came by. I made dinner for Michael but I ate very little, still full from lunch. 

It was so nice to spend all day together. Today, he is back to work and I am back to mom, who has an eye doctor appointment this morning after I have a workout at the other rehab. Later, I plan to make the Bourbon Pecans and a new dip I found in this month's Food and Wine magazine. Company comes tomorrow at 5:00PM. 

Thursday, September 24, 2015

Recipes for the Week

I will have a buddy with me all day today. Michael is taking the day off but we have to be out of the house by 9AM for the housekeepers. The weather is beautiful, the whales are still visiting so we will be staying on the coastside.

When we moved to this house in 1982, the neighbor's daughter was in high school. She and her husband are coming for a visit on Saturday then we are going out to dinner together. They are major foodies so I will have a couple of special appetizers for them. Such nice people. We hope to hear about the ceremony of spreading her father's ashes in the warm waters of Hawaii a couple of months ago. We are not sure if her mom will be with them or not. Today, we will buy some wine and the food for the appetizers and I will be making my to-do list for Saturday, which will include yard work! And a shower!

Here is what I am cooking this week. These recipes are for those of us who do not process food properly, on prednisone therapy or immunosuppressent therapy. The focus is 3-4 ounces of protein and non-starchy vegetables.

Eggs a Different Way - HERE
Portobello Mushroom Pizzas - HERE

Beef Kabobs - HERE
Parmesan Baked Fish - HERE
Roasted Chicken with Spicy Spinach - HERE and HERE

Wednesday, September 23, 2015

Rehab Boy News

At the pulmonary rehab class yesterday, they announced it was my 600th class. Yes, 600! That was amazing to hear. What was not good news was something one of my rehab boys told us before the class. Dick is 82-years old and Sherman and I have been worried about him since last October. He seems to be on a steady decline, needing supplemental oxygen 24/7, fighting pneumonia several times, no stamina and weak. He shared with us that the doctor found something in a lower lobe of his lung but, the way it was growing, it did not appear to be cancer. Appear...

He is doing a run of major antibiotics to see if they can reduce the mass, if it is an infection. Fingers crossed. He will be going back for another test in two weeks. If the mass has not reduced, I will guarantee that there will be a biopsy.

We talked about it again yesterday. One of the very first lessons I learned after being diagnosed was that I was not going to worry about something when there was no proof that I needed to worry! All the horrible possibilities. Dick agreed. He said he feels whatever it is, it is. Worrying isn't going to make a difference. He also said that he would not treat it if it was cancer.

I would bet that he has only shared this information with his family, Sherman and me. That is why we meet an hour before rehab class. We talk about a lot of life stuff, recipes and jokes but it is when there is a downturn or problem that we come together and support. When I am sick, I get daily phone calls. They worry about me and it is rather nice. They understand what I am going through more than anyone else. We are walking the same path.

Now is the time Sherman and I will come together for Dick. My gut doesn't feel very good about this as it would explain a lot of his downturns. But, my hope is that it is a longtime infection that can be addressed.

We'll know in two weeks.

Tuesday, September 22, 2015

Seeking Relief

Mom was miserable when I met her yesterday morning. It has been unusually hot, she was just sick of it and craving the fall season. It was so much cooler here on the coastside that I suggested we head back over the pass together. We drove to the area where I walk and where the photos were taken last week, tried to spot some whales (saw a couple of sea lions) and just let the cool, light breeze cool us both. It was marvelous.

After an hour or so, we drove into town, walked a couple of blocks, gave her a tour of the new barbershop and went out to the Ritz's pro shop for lunch. Driving up to the little gate house, we noticed the buntings of the flag then the hundreds of white and black flags with writing on them. We couldn't quite read them. We told the lady we were locals just going to get some lunch at the pro shop and she said:

The Navy Seals had their Golf Tournament last weekend and the final ceremony is during lunch. I don't know if they are serving anyone else for lunch today.

Navy Seals? Really? We drove down, parked and walked in. The place was hustling. There would be no lunch there for us. The decorations, all the flags and the huge banners proclaiming that, indeed, the Navy Seals were present. Now, we did not see any but we sort of assumed that they were retired Navy Seals. But, maybe not. It was intriguing.

So, back to our fish taco place for some fresh salmon before I drove mom home north up the coast to see more of the ocean, with the windows down on the car to drink up the last of the cool, clean air.

Back to her house, it was HOT and not a breath of air.

It is cooler today. The hot spell has broken. The rehab class is this morning and not much else on my schedule today. I slept last night for the first time in days and fell so much better this morning.

Monday, September 21, 2015

Life Continues

HOME! He is home. It was a long, tourist laden ride over the pass last night and I got to the cell phone lot almost an hour early. It was hot and I sat with my windows down and watched all the other cars leave to pick up their loved ones. Suddenly, it was so late and so many cars had left that there were only about six of us left.

Finally, they landed but they were early and there was a plane in their spot. We all waited. Fifteen long stinkin' minutes later, I got the message that they were at a gate then minutes later that they were ready for pick up at the curb. And there they were. Smiles all around.

Michael talked all the way home and we sat up for a bit. Bedtime happened around midnight and we are up and moving this morning. Barely.

Our next road trip will include a couple of days in Nashville. He loved it there.

It is going to be hot today. It must be driving my mom nuts so we might be heading back to the coastside to give her a break today. It will only be the 70s here on the coast but 90s where mom lives. I'll see if she feels like a road trip or she needs to run errands.

I am tired. I didn't sleep well the entire time he was away. We only had about six hours last night so I will be dragging today. It will be a full week of rehab and working out. My life returns to its normal rhythm.

Sunday, September 20, 2015

Last Day

It is going well in Nashville. They are having such fun and all the relatives are behaving themselves so they were able to attended an event last night and a brunch this morning. That was very good news and I so hope for British Don that fences have been mended and new relationships have begun.

Yesterday flew by for me. Michael phoned and I was even able to talk with Don about the wedding. The gardens were cut and watered, the ironing was done, I did some paperwork, read a bit while on the swing and enjoyed a nap. Before dinner, I turned on the final two episodes of "House of Cards" then began Season 2. Several hours later, I went to bed but didn't sleep well again. It was hot in the house and it is expected to be even hotter today.

My plan is to have a bit of breakfast then a long walk followed by a shower. I will also cook some peppered bacon and deviled eggs for Michael's breakfast in the morning. I need to leave for the airport by 9:30 tonight but the traffic is going to be horrible. It will be frustrating.

But for today, I will try to relax, watch "House of Cards" and the clock waiting for him to be home. Enough.

Saturday, September 19, 2015

Too Quiet

Awfully quiet around here. It is rather strange to just gently glide out from underneath the bed linens and gently straighten them and Voila! the bed is made. So different from my normal bed making routine where I have to totally remake the bed. It is strange to have nothing out of place in the house. Nothing moved. No noise. No reason to cook dinner by a certain time.

I have yesterday's practice round for the Formula 1 race from Singapore on right now. There is no one commenting. No one wincing at close calls. No one making coffee for me.

It is strange being in this house alone for four days.

Michael phoned from Nashville before the wedding reception yesterday. He was sitting on the front porch of their Air B&B, which he said was very old but charming, tiny house. It was hot. And muggy. The photos of the wedding that were posted on Facebook were such fun to see and made me feel that I was part of it.

So, they are now done with their duties. British Don, his college buddy Anthony and his girlfriend from Oklahoma City, and Michael will be free to investigate every inch of Nashville today before flying home tomorrow. Michael was even excited when William told him there was a bar where you could actually buy cowboy boots in the bar!!! Maybe not the best choices made after a few cocktails but really, a bar that sells cowboy boots.

It is hot here on the coastside. Tourists are expected. I am going to stay home, focus on the gardens, iron, go for a walk and watch the final two episodes of "House of Cards." Another quiet day.

Friday, September 18, 2015

Airport Drama

Yesterday morning, we were dressed, packed and ready to take off for the airport, over the pass and about forty minutes away. It was an 11:30 flight, 10:45 check-in and we left at 8:50. Plenty of time.

As we got into the car, I asked Michael several times if he had his wallet and phone. "Are you sure?" Yes, yes, yes.

Traffic was rather light, we got over the pass without being caught behind any big garbage trucks and arrived at the airport at 9:30. As we kissed goodbye, I asked again, "And you're sure you have your wallet" for his ID to fly? He checked. He checked his pants pockets. He checked his jacket pockets. He checked under the seat. He checked the back seat.


He must have left it at home. We had one hour and 15 minutes until he had to get through security and be at the gate. It is a 40-minutes drive to get home from the airport. Do the math. It didn't look good.

I drove. Freeways? 80 MPH. Hit the pass? Trucks. Large trucks slowed us down. Flew up the coast, arrived home 30-minutes later, slammed through the front door. There was the wallet, faced down on the black granite in a place he never places his wallet. He just didn't see it when we left the first time. I grabbed it, reset the alarm, locked up and hit the road. We drove the pass and, again, got stuck behind the trucks. Finally, made it to the freeways where we saw 80 MPH speeds. Michael was texting Don, who was waiting for him. We made it back to the airport 30-minutes later, which gave them 15-minutes to make it through security.

I drove away a wreck. Way too much stress. I drove to the butcher's (very close to the airport) and told my wallet story. Well, it was hilarious to hear all these guys telling me about losing their wallets! It calmed me down and gave me a good laugh as I did a bit of food shopping.

About thirty minutes after I dropped Michael off at the airport, I phoned him. They made it. In fact, American Airlines had a problem and planes had been grounded in Dallas, where they were making their connecting flight to Nashville. Their plane was going to be delayed by 30-minutes. Later, he phoned again from Dallas as they were waiting to make the connecting flight.

The wedding is today. The reception tonight. He is there. I now worry he will lose his wallet and will not be able to fly home!!!

Thursday, September 17, 2015

Goodbye, Michael

Quick one today. Michael is leaving me. We have to be showered, dressed, packed and out the door to the airport by 9AM. Just two hours away.

He will meet British Don, they will go through security together, have a great cup of coffee before boarding a plane to Dallas/Ft. Worth then Nashville for Don's daughter's wedding.

It was an ugly divorce and the daughter was moved out of state. It has been difficult. Michael and Don's other friend will be the "British Mafia" protecting their Don. Making sure everything goes will. Using lots of smiles and words like, "Haven't seen you in years! I would love to meet your family," while escorting them away from Don.

The wedding is Friday followed by a reception and a dinner Saturday and a breakfast Sunday. They are going to the wedding and reception. What they are going to do is have a ball in Nashville together before they arrive home on Sunday evening.

Me? Cooking simple food, taking lots of walks, working in the garden, watching NetFlix and sleeping. I am exhausted.

Wednesday, September 16, 2015

An Unusual Day

It was rather weird to have so much attention focused on me for so many hours yesterday. I am just not used to that! Seven people invaded the house, were thrilled with the spread of food and the Nespresso machine, the light streaming through the living room, the gardens and the ocean. They were on a tear to photograph 20 people in five days. The photographer was from LA, the computer guy (really didn't understand what he was doing but it was so important that they flew him in from NYC), the interviewer from Marin County, the photo producer and two assistants from SF, another woman stayed the night in our little town and the founder of this national ad agency was a pure delight!

Why? I haven't really said, yet. My university hospital is going to include our stories and photos in a variety of places this fall. Three of the twenty people will also be filmed for TV commercials. I have not been chosen for that and totally understand why after hearing about the other people. I have been through nothing in comparison.

So, my photo may be on buses in the city or BART stations, billboards or print ads in a month or so. Michael has suggested that we should stalk the buses and take a selfie.

While out along the ocean cliffs, the whales were going wild the entire time! They usually don't come so close to shore in this one area but they were breaching like crazy. The out-of-town people were thrilled. "There's one! There's another! Did you see that?" Cute. While they were taking my photo with the whales far in the background, I wanted to yell, "Cue the whales!"

The gardens looked pretty good, even without the annuals and with the brown grass. We took several photos there as well as walking along the cliffs, playing the piano, playing my string bass and reading.

They arrived at 8:30AM and out the door by 11:00 except for the interviewer. She was interesting. Her dad had just been diagnosed with IPF. I so hope I helped her with information. It is not that I am so brilliant but I have learned a lot. I'm just a bit further down the road. My biggest suggestion was to get him out and moving everyday so we found a pulmonary rehab class in his area. He will feel so much better, stronger, more stamina and in control of his breathing and body after the initial eight-week rehab classes. I can't guarantee him a longer life but I can guarantee him a better quality of life.

Oddly, it was surprising to be exhausted afterwards. I suddenly felt sorry for all models and actors. It's a lot of work, having to smile. I slept like a baby last night, will take it easy today so I will be awake for orchestra rehearsal tonight.

Life goes on.

Tuesday, September 15, 2015


A quick blog. Project #2 arrives at my door in 90 minutes. Not only is the photographer arriving but I found out last evening that SEVEN, yes that's right, SEVEN people will be here to take my photo. The founder of the national ad agency will also be here. Yikes.

At 6AM, I was at our little wood-oven bakery in town to buy goodies then to the market to buy fruit. We have a Nespresso, so that is good. It is going to be a wild few hours.

Last evening, I attend the Patient Advisory Board Meeting alone and grateful that I made the effort to attend. Can't talk about it. My mind wouldn't settle all night with lots of ideas.

Gotta go and make myself presentable!

Monday, September 14, 2015

Low Saturation Levels

I don't know if it is the weather or if I am having a bit of a downturn. My saturation numbers just moving around the house are lower than usual and I feel a heaviness in my chest. It is what I remember it feels like when my DLCO is low. Something to watch.

Today, before leaving to be with my mom later this morning, I will cook dinner for tonight and vacuum the house. Why? Dinner: because I will be going to the Patient Advisory Board meeting at my university hospital this afternoon and Michael will beat me home. Vacuum: Project #2's still photographer is booked to arrive with her crew at 8:30 tomorrow morning at my house. I also need to wash my hair this morning so it will be more manageable tomorrow.

And, I will need to not look exhausted in the photos. That will be the real challenge!!

After tomorrow, the rest of the week will be a piece of cake. If I am still feeling this heaviness, I will contact Dr. K. 

Sunday, September 13, 2015

Losing Weight/Hanging Flesh

After the blog about losing 100 pounds, someone asked about hanging flesh. I was not young when I gained the weight and I was in my late 50s when I lost the weight. Old skin that is not flexible anymore!

I love watching Extreme Weight Loss with Chris Powell where they choose an extremely overweight person to work with and follow for one year. Losing a couple of hundred pounds involves so much more than eating well and exercising. It is also about doing the interior work. The need to answer the question of why the weight was put on in such an extreme manner. After working out so hard, they can qualify for skin removal surgery if they lose a minimum of 40% of their original weight. I have seen the deflated look as the skin just hangs from the body.

I was overweight when I got sick but I was fit from our 5-mile fast walks in the morning along the ocean for a year. I had lost weight when I first arrived at my university hospital though I was still overweight. When the first run of 40 mgs prednisone for seven weeks happened, I gained thirty-five pounds. Boom. Now I was really overweight by at least 100 pounds.

When the dosage of prednisone was reduced, my weight rolled back to what it was and stayed there for years, though I was exercising everyday and watching my intake of food. The problem was that all the years of prednisone caused my pancreas to not be able to process food properly. My non-fat yogurt and berries in the morning actually put on weight as it instantly processed into sugar. Learning from the nutritionist almost five years ago that I can only properly process protein and non-starchy vegetables, sixty pounds dropped off in just 6 months. (I did do three months of a liquid diet under his supervision.) Lately, I lost another fifteen pounds and feel like I am fit and where I need to be to qualify for lung transplants. The BMI must be between 25-30. I am at 26 BMI.

So, hanging flesh. The truth? It was just dumb luck. Before I knew I had a lung disease, bras started to bother me. I felt like I was not able to take a deep breath (the disease, but I didn't know it) and sought different types of underwear that would give me support but not bind me around my rib cage. I found shapewear. It was like the old-fashioned girdles that I found online. Some were tighter than others but I found that I could breathe better. My lungs felt supported. What I didn't realize was that while I was losing weight, the pressure of the shapewear was not allowing my body to sag. It was like what the stars in Hollywood recently discovered that after having a child, they would tightly wrap their bellies and they would return to the pre-baby look. I was doing the same thing wearing the tight shapewear everyday. I have a belly but I have had a belly as long as I can remember, even as a child. I never had a flat stomach my entire life. It is still with me but it doesn't hang. It is just there. Darn it.

So, I am lucky that all the working out and the pressure of the shapewear allowed me to not deal with hanging flesh though I have notice everything (especially the backside) has headed south, a bit. Oh well! I am alive. That's all that matters.

Saturday, September 12, 2015

Project #2 Photos

Project #2 is moving forward on Tuesday by having still photos taken here on the coastside. I am almost ready. Hair cut? Check. Toes? Done. Eyebrows? Waxed. Removal or hair on face....scheduled for tomorrow! I have asked the photographer about clothing suggestions of either casual or business, as I have not been told what they want.

Speaking of clothing, mom and I went shopping yesterday before lunch at Nordstrom. I found a nice, causal, light shell that would look great over those size 8 slacks I had tried on the day before. Bought it. We strolled over to Macy's, found the slacks, tried them on and my mom went crazy. She told me I had to buy them (and I got them 20% off!). They fit perfectly except they needed to be hemmed. I think they will work for the photo shoot with my good turquoise jewelry, if they want a clean, casual business look.

After lunch, I drove to the coastside for my hair color and cut then home for a short time. We were invited to the new neighbors for dinner. It was so nice, fantastic food and we didn't get home until 11:30! I hope we didn't overstay our welcome!

After a quick run into town this morning, I am focusing on laundry, gardens, cooking, hemming the slacks and working on my schedule. I realized after confirmed the photographer on Tuesday that I can still attend the board meeting at my university hospital on Monday evening without Michael. He is leaving for Nashville on Thursday and doesn't want to take additional time off work for the meeting. I hope I don't appear tired for the photos!

Friday, September 11, 2015

Looking in the Mirror

I had extra time before the rehab class so I tried on clothing at Macy's. I found a pair of nice, black textured slim cut slacks. I chose a size 10 and tried them on. THEY WERE TOO BIG. It was a shock. I went back, nabbed the size 8 and they fit. Imagine. In 2006, I was 100 pounds heavier than I was yesterday. A size XL, if it would fit.

It has been almost five years since I have lost all the weight. If I gain two pounds, I feel it now and I don't like the feeling. The nutritionist once told me that skinny people have no idea what they weight. If their clothes start feeling tighter, they pull back on their food for a couple of weeks. That is so true of Michael. He has been thin all of his life and when his Levi's begin to feel tight, he cuts back. At the moment, he is thinking about buying a new pair in a smaller size he hasn't seen in years: a 32" waist. I think it has been the hot weather. He has just wanted very light dinners and is drinking plenty of water.

Someone asked me my weight loss secrets. What worked this time? I think because the goal was to get my BMI between 25-30 for lung transplants, it was about my health, not my dress size. In fact, after I lost the majority of the weight, I went to Nordstrom to buy a couple of pairs of pants as I had nothing that fit. Having no idea what size I was, the saleswoman told me to begin in size 10. That alone was a shock! I couldn't believe how small I had become. It was underneath all my baggy clothing. It was not my focus during the months and months of focused dieting.

The other secret is to have the food in the house and available. If it is there, I will eat it. We rarely eat out and, when we do, we tend to split an entree. It is having control of the portion size, fat and salt. A food plan for the day. Every day. No binges. No day off.

It is in this hot weather that I most appreciate being smaller. Shorts and a nice t-shirt or polo shirt. Two items. I always wore a minimum of three items. Always a sweater or coat or jacket to cover up. I now find it amusing that I have turned into that woman who has a light jacket with me as the air conditioning is sometimes too cool in stores or restaurants. I never was cold when I was heavier. I always was dripping with sweat in the hot weather. I hated summer and summer clothing.

I so wish I had worked with a nutritionist decades ago.

Thursday, September 10, 2015

Recipes for the Week

Fog! We have fog! It's been so hot that this feels like a cool glass of water in the dessert. The bad news is that it is still very hot over the pass, where I need to go today. At least we will be sleeping under blankets tonight!

Food shopping today after the rehab class. Simple food this week. Below are the recipes I will be using. Due to longtime prednisone use, I eat 1,200 calories to lose weight and 1,400 to maintain, use a pound of protein for 4 servings, non-starchy veggies only, nuts for snacks, lots of water, no colas. I hope you will try a few of these recipes.

Chicken Fajita Wrap - HERE
Buffalo Stuffed Eggs - HERE

Bacon Beef Roll - 1/2 recipe - HERE
Popeye's Special - HERE
Mushroom and Swiss Chicken - HERE

Wednesday, September 9, 2015

Irish Jigs

Waiting for Michael to come home, I peered out the front window. Nothing. I thought I heard something. Opening the door, it became louder. Walking to the driveway, I realized it was live music coming from Leslie and Joe's house. She was having a rehearsal of her Irish fiddling group out on their front porch area as it was in the shade and cooler than inside her house. They sounded great. Leslie spotted me, came over and told me to swing by after Michael gets home and, by the way, she has some new Irish whiskey for him to try. Minutes later, he arrived and was met by music. "Look what I arranged for your homecoming!" I said. He laughed. After a quick dinner, we wandered over, sat with them and listened to fantastic live music for over an hour. What a treat!

Another treat was after we walked back home, the SF Giants were winning so we went to bed happy people.

Project #2 moved a bit forward yesterday. I removed all appointments and meetings from my calendar from next Sunday to Thursday so I would be available for a photo shoot. The photographer phoned yesterday afternoon to advise me that the still photos will be taken in the city on one of those days. Apparently, there will be several other people involved in the project and they were trying to put together the shooting schedule. They will let me know the date, time and place. So today, I am having my toenails done and my eyebrows waxed and I rescheduled my hair appointment for this Friday afternoon.

Takes a lot of get me camera ready!

I spoke with mom on the phone yesterday morning and she didn't mention her eyelids. She did mention that she was looking forward to play poker yesterday. We will see each other on Friday.

After working out at the rehab class, I was worried about Michael working in almost 100 degree temperatures. I phoned from the car. He said he was drinking a lots of water then he said, "They have something at Safeway that would help. It's called ice cream!" He loves the Dryers new custard ice cream so I had some waiting for him when he got home.

Today, I have a free day. I am going to do some filing of paperwork before my toenail appointment, pick up the house for the housekeepers, make a light shrimp salad for dinner then go to the orchestra rehearsal tonight. A full day.

Tuesday, September 8, 2015

Handful of Worries

I was up, out and into the gardens by 9AM yesterday. It was not hot yet and I was able to do a quick mow and blow. Everything was very dry so I watered as much as I could, but we still have to be very mindful of our water usage. El Nino, we are waiting for you. Please bring your rains as soon as possible. Thank you.

It is going to be HOT all week. Even here on the coast, it is expected to be in the 80s. I am ready for Fall to begin.

The pulmonary rehab class is this morning but I need to first swing by AAA to pay the yearly DMV fees for a car. Then, the real sweat will begin. Sherman and Dick will be there early so there will be lots of laughs and chaos.

But, my mind is on the two projects, Dr. K.'s demand that I seek help dealing with living with a chronic disease, Michael leaving for the wedding in Nashville and my mom. I am still angry how Dr. K. totally mis-read Michael's comment during the appointment and she felt that I needed help after leaving my job 11 YEARS AGO! I did the work years ago: physically, socially, emotionally and spiritually. British Don told me that since it was a request on the record, I need to follow through, meet with someone he recommends then have her write a report to Dr. K. It will then be done. Maybe one or two sessions. So, I am phoning the doctor he recommended today to make an appointment. I am still not happy.

Michael leaves soon for British Don's daughter's wedding in Nashville. He is the bodyguard. He is the cushion between Don and the family. It will be the second time Don has had to endure his ex and her husband. The first time was at his daughter's graduation from college when he was told where he could sit, not to move and not to talk with anyone. Don's ex moved out of their house one day without any notice. Got home from work and everyone was gone. Turned out she was seeing a much older man, ended up marrying him, he needed a job so they moved Don's daughter to Nashville. It has not been easy. So, Michael will be with Don for four days. I will miss him, probably not sleep well and will worry the whole time.

My mom. She had her appointment with the eye surgeon on Friday. It was very tense, my mom was not happy and fought back tears when she realized that her memory of her eyes may not have been the reality. The easy fix was not possible. She had tattooed eyebrows so they cannot be lifted. They would look way too high and just goofy. There was still just a small bit of tissue on her eyelids that the doctor offered to remove but, really, I don't think it will make much of a difference. The reality was that her brows have fallen, it would be major surgery to cut into the hair line and do a lift but then, they wouldn't look right because of the tattoos. She keeps saying that she didn't think it would look bad so the surgeon had to start again from the beginning to explain again why they would not look good. Mom is very vain and wants everything to be perfect. I think what hit her so hard on Friday was that her eyes are not going to look like they did a couple of years ago. She is, after all, 87-years old. I also know that she has been very upset all weekend, I thought I would give her some time and space before phoning her this morning.

Monday, September 7, 2015

Holiday Weekend

Well, it was a bit more of a challenge than expected. We had a marvelous time being together on the other side of the pass. It was hot over there. Like 90 degrees hot. We headed towards the coastside around 1:30, where it was a cool 75 degrees. It should have taken an hour, but alas.

We wove our way through the hills to our sneaky way up through the massive redwoods then down the other side of the mountain to the ocean. About halfway up the mountain, we stopped. We crawled. It took an hour to reach the stop sign at the top of the mountain. Once we crossed the ridge road, it was a fast downhill all the way.

Going through town, we stopped by the new barber shop to see how they were doing. Business boomed on Saturday but was slower Sunday. As we were talking, people began to drop by for a shave or a haircut. I hope we brought them good luck. It looked fantastic. Very manly, industrial, old-fashioned but fresh and new.

Once home, the new neighbor came by to invite us to dinner on Friday night. Michael made a Cosmo for her while she took a tour of our house and gardens. She and her husband are such nice people. We look forward to having dinner and developing a deeper friendship with them!

Then, I got to work. I had a pile of ironing that needed my attention. We stayed up a bit later than usual and enjoyed the cool breezes blowing through the house.

Today, the gardens need my attention, though I will only do a quick cut and blow. And it needs watering. Other than that, we don't plan to leave the homestead even for lunch. Too many tourists.

There was also another bit of news yesterday. One of the projects I have been working on has been confirmed. It is moving forward. Exciting.

Sunday, September 6, 2015

Going for a Ride

Loving this long weekend! I was able to put off all my weekend chores for a day. Now two days. Yesterday, I had a three hour lunch with Matt, a teacher where I used to work. It was fun to get caught up with what was happening in our lives and with our parents then we gossiped a lot. It has been ten years since I left the school and there are just a handful of staff still there from that era. Remarkable. We also talked about the kids. Who is doing what. Who we ran into as adults. Just fun.

But, there was a pile of laundry waiting for me when I got home and dinner to be made. I just passed a pile of things to be ironed work is not yet done.

Michael just turned to me and asked if I wanted to go over the pass with him, workout at the other rehab while he paints a few things then we would go to lunch afterwards. I guess the gardens can wait yet another day! It is going to be hot today. It is going to be packed here on the coast.

At this very moment, he queued up the Formula 1 race from Italy to watch before we go anywhere. Oops! Oh no! Kimi Raikkonen driving for Ferrari in Italy!! What happened?!?!?

My thought is that there is always tomorrow to finished my weekend chores. Michael will be home. He will watch while I do the yard work. He will watch while I iron. He may even help me haul garden waste. It will be a day at home together.

Happy Labor Day Weekend!

Saturday, September 5, 2015

Pulmonary Hypertension

I got the results of the echo cardiogram, which looked for pulmonary hypertension. Those of us with lung disease often don't exercise or supply our hearts with enough oxygen at times and these and other issues can cause a thickening to an area of the heart. I do not want it. It would be a reason to need a transplant now. I hoped that the ten years of exercising almost everyday had not allowed this to happen to my heart. A quick statement about PH from the Mayo Clinic is below.

The results? Drum roll, please! I do not have it. My numbers were compared to the test several years ago and there was a minor increase in the pressures in my lungs. All good news.

Here is a quick statement about PH from the Mayo Clinic:
Pulmonary hypertension is a type of high blood pressure that affects the arteries in the lungs and the right side of your heart.
Pulmonary hypertension begins when tiny arteries in your lungs, called pulmonary arteries, and capillaries become narrowed, blocked or destroyed. This makes it harder for blood to flow through your lungs, and raises pressure within your lungs' arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and eventually fail.
Pulmonary hypertension is a serious illness that becomes progressively worse and is sometimes fatal. Although pulmonary hypertension isn't curable, treatments are available that can help lessen symptoms and improve your quality of life.

Friday, September 4, 2015

Birthday Celebration Continues

It was a nice day for a birthday. After the rehab class yesterday, I picked Michael up at his work around 3:00 and we drove to the most amazing Italian bakery for a large slice of tiramisu to hold his birthday candle. The sun was out, we sat on the swing in the yard while he phoned my brother and his wife then later, my mom. He opened three birthdays cards, all from my family. My brother, sister and mom. We had a nice dinner of the Five-Spiced Chinese Pork with Asian Slaw. Delicious.

But, the real celebration will be tonight when a house filled with his friends will meet for "Boys Night Out." Dear friends. Friends he has known for decades. At the same time, Mark (his car pool buddy), will be celebrating the end of his divorce proceedings, which means an entirely different group of younger people will be there as well. Though he has a small house, it has an extensive enclosed front yard with beautiful furniture and heaters as well as a nice back yard partially covered by an arbor. Lots of room to spread out. My best guess is that around 30-40 people will be there. Or more.

This morning, mom has a meeting with her eye surgeon to check the progress of her eye lid surgery four months ago. She is not happy. They still look very swollen but we think it is actually tissue that still needs to be removed. Another surgery. It will be a difficult conversation. Afterwards, I will ply her with her favorite lunch at P.F. Chang's.

Natalie texted me last night to share information about a house just up for sale in our neighborhood that would be perfect for them. Just under $1M and that, sadly, is a bargain. I don't know how people are able to buy a house let alone, pay the property taxes each year, on that amount. Wow. She is going to haul Ethan over to check it out this weekend. It would be so nice to have them within walking distance. I asked how Oliver was doing in kindergarten in his new school (where Natalie works and his sister Winnie is in 3rd grade). She said she was amazed how social he was in the larger school. He was stopping the 8th graders who were wearing Star Wars or comic book hero t-shirts and engaging them in conversation. I would love to have seen that!

Thursday, September 3, 2015

Birthday Plans

It is Michael's birthday today. A rather quiet one for him as he is having a "Boys Night Out" at a friend's house tomorrow night. It is a combined divorce-is-final and happy-birthday party. His young friend from work is celebrating the filing of the final documents for his divorce. (It was a horrible process for him. He discovered his wife had been having an affair with his best friend for several years.) Michael asked me to make another big pot of my beans with sauteed apples and kielbasa sausage. Even British Don is coming down from the city for this party.

The plan for today: I am going to the rehab class then picking him up from work. We need a smog on one car, will go together for that then swing by a fantastic Italian bakery for a slice a tiramisu to hold his birthday candles. He also has cards to open and phone calls to make.

But yesterday, it was medical test day. I did spirometry and DLCO pulmonary function tests and found that they were similar to the ones taken 18-months ago. Very similar. I am back up to 48% VLC and 48% DLCO. Those are two very important numbers. When they hit 40%, I will be sent to the Lung Transplant Clinic for evaluation for lung transplants.

Minutes after the PFTs, I had an echo on my heart to see if I have Pulmonary Hypertension. My tech was a young guy doing his clinicals but supervised by a very experienced woman. She directed him really well, it probably took longer than usual but I didn't care. I tried to help him relax and told them both that I was in no hurry. He remarked later that I was the nicest and easiest person he had ever worked on. I have a feeling he had not had a lot of experience yet! I told them how concerned I was about maybe having PH and that I have been working out almost everyday for over ten years. As they were taking the images, they kept making positive remarks. I said that I knew they couldn't tell me what they saw but if they could maybe wink if it looked good. No PH. I got the wink. Hopefully, when the images are more closely examined, they will find nothing. Fingers crossed.

The only negative was that I had to lay on my left side on a rather hard surface. After about an hour, my bad hip began to bother me. It was sore but by the time I got home and when I hauled my string bass out of the car for the orchestra last night, I felt something pull right where it had been sore. All evening, I had to stand and play and I could feel it getting more and more tight and painful.

After the rehearsal, I hauled it back to the car and hurt it again sliding the bass into the passenger seat area. When I got home, I did my hip stretching exercises, took an Alive and went to bed. I have no pain this morning but I am not going to push it at all.

Wednesday, September 2, 2015


I had a lovely morning with my friend Lois. We met ten years ago while working out at the other rehab. We became friends before we realized that we had actually performed several times together, she in the chorus and me with the big fancy orchestra. She was a drug designer. A biologist. Whenever I get a new drug, I ask her how it works. Pathways. Oh, I have learned all about pathways!

She handed me some information yesterday that I had not heard about. It was announced yesterday that "Bristol-Myers buys the rights to acquire fibrosis drug developer" for $1.25 billion. This give them access to Promedior Inc's drug that is being tested for treating fibrosis: IPF and other fibrotic lung diseases.

Apparently, Bristol-Myers has four anti-fibrotic drugs in the pipeline and Promedior has one in the mid-stage of testing. This drug would be different as it works on a specific protein via intravenous injections.

Check out these sites for more information:

Tuesday, September 1, 2015

42 Years

It is our 42nd Anniversary today. I just can't believe how quickly time has flown. We have grown and changed and lived life to its fullest. We were so very young and we were smart enough to wait eight years to have William. By the time he arrived, we had traveled a lot, had a Porsche and Jaguar, owned a house, decorated the house and had money in the bank. I was able to stay home and when I left work, Michael got a new job with a pay increased almost to the penny of what I had been paid. Those nine years of being a stay at home mom were the best years of my life. A gift. Though financially difficult at times, we made it all work to keep me at home as long as possible. No vacations. No fancy restaurants. When I did go back to work, I had learned so much about education that I went to work at the school where I got sick. William never had to go to an aftercare program or needed a babysitter. I would drive him to school and pick him up. I was there on weekends and holidays and summers. It was ideal.

Someone gave Michael a gift certificate to a fancy restaurant near his work. It is old fashioned: large portions, heavily sauced, rich and expensive food. People just don't eat like that anymore. Rumors are about that they are closing soon. The owners really just need to redo their menu but, maybe after many decades, they are tired. We are going tonight. I am picking him up and we will have a nice long dinner. Our plan is to split the Oyster Rockefeller, the Tournedos a la Rossini (pate and truffles are involved) and probably one of their famous Grand Manier Souffle. Better to eat half portions. I really don't think I could eat their full dinners anymore. (There sister restaurant was high in the mountains above us on the pass before it closed two years ago. It is a very similar menu.)

My ear is really ringing this morning. Dr. K. started me on prescription strength Flonase to help work it through since the infection from last June keeps returning. I had a bit of dizziness on Sunday and now have a small occasional cough. Those are the only side effects so far. Who knows if this will work so it may be time to get a referral to an ENT specialist.

Our hairdresser is getting ready to open her new barber shop right on Main Street of our little coastal town. It has a very clean, industrial, manly feeling about it. She phoned before he got home because she really needed Michael advice on some trim color. Almost in a panic. After a quick dinner, we drove into town and watched as she finished painting the trim. It was perfect. She had made the change and Michael approved it all. He does has the best design and color eye of anyone I have ever met. I love that with every shave or haircut, the men will be offered a free beer. There is even a spot in front of the big windows where a beautiful mahogany shelve acts as a bar. It is going to be a smash hit.