Living Well with a Bad Diagnosis - Lung Disease

Monday, March 31, 2014

Santa Cruz

It was an unusual Sunday. Michael was preparing to leave to work on our friend British Don's car, to be delivered tonight, as he is now home from his business trip to China, when Spring Fever hit! I was making my breakfast for the week on the stove when he asked how fast I could get dressed. "Ten minutes!" Well, maybe not the whole truth because I had to finish cooking, making the bed, cleaning the counters then it would take about ten-minutes getting dressed. 


We hopped into the new car, put down the top and drove 45-minutes south to Santa Cruz. No tourists. No traffic. Just the two of us on the road. It felt fantastic. We walked downtown Santa Cruz, shopped the famous huge surf shops then had lunch at a sweet little place named Chocolate. Very Santa Cruz. I had an appetizer of Organic Rotisserie Chicken in a very unsweetened BBQ sauce made with cocoa powder. Very rich and deep flavors. Michael had their freshly baked quiche with asparagus. We made our way back up the coast and had a nice, quiet afternoon. 

At 6:30, I sent Michael out the door with his leftover Ahi Tuna Steak cut as a cold appetizer to Ron's next door for "The Big Lebowski" night! Ron also served a homemade pizza featuring a yellow pepper, Italian broccoli and an artichoke from his garden. We also bought two large truffles at the restaurant in Santa Cruz so they had that as dessert. Did I mention wine? Yes. There was wine, too.

Me? I was in bed asleep by 8PM but it was not until 2AM that I noticed he was beside me in bed, gently snoring. That was the result of the wine. He really doesn't snore unless he has had a bit of alcohol. So odd. 

He had a ball. They talked and laughed and told stories. 

I began my run on Coldcalm yesterday afternoon and it seems to be working. So far. Today is going to be a challenge. A huge storm is due around noon and with it comes lower temperatures. Mom and I will probably still be deep in the Silicon Valley waiting for the oil change on her car. I still have to run by the bank, AT&T, try to make an appointment for a sonogram for my liver again then getting home to make dinner. After dinner, we are delivering British Don's car up to him in the city and probably won't be home until after 9:00. I really need sleep right now as I am fighting getting sick. I can sleep in a bit on Tuesday. Maybe. 

Sunday, March 30, 2014

Rainy Day Goodness

Saturday morning, I did all the shopping and banking and was home by noon. Within a few minutes, the clouds came in, the sky darkened and we had one heck of a downpour. It was magnificent. With the symphony of raindrops on the roof (we have cathedral ceiling in the family room so the rain was loud!), I did all the mapping for our road trip in May. It was a lot of work and required concentration. After almost three hours, I am now ready to hit the road. Each day has a packet which includes the map for the day, the miles and directions and the hotel confirmation. It also has driving directions to specific restaurants we want to remember not to miss in certain cities and directions from the hotel to friend's homes. The Bourbon Trail in Kentucky was the biggest challenge. We need to visit seven distilleries in two day in order to have our "passports" stamped for the much desired t-shirts proclaiming to the world that we had completed the trail. The distilleries are wildly spread apart with lots of little back roads to navigate.

It was during this time that I began to feel a bit of a scratchy throat, a mild headache and the feeling of something trying to invade my body. I went into fight mode last night beginning with Vick's Vapor Rub on my feet (covered by old sock to protect the sheets) and my secret weapon: Aprodine. I feel much better this morning but I will do the same routine again tonight.

I made a killer dinner of the Ahi Tuna Steaks and Stuffed Tomatoes. Michael LOVED the entire meal. It helped that I bought him a little container of ice cream as a treat. Leftovers tonight.

Today offers more rain. I am just going to run out to buy two things I forgot yesterday before cleaning my closet. I need to bleach a lot of my white socks and I am going to begin to put together all the clothes I am thinking about packing for the trip in one area of the closet. With the new car and its tiny trunk, packing is going to be a challenge. I did buy a new golf shirt at the Ritz to go with my new pair of golf short I bought at Costco. So far, I am planning to pack three pairs of shorts, white slacks and a pair of jeans. The shirts and jackets and sweaters will the the issue.

I just want to get going but the anticipation is also the fun of the trip. So much to arrange before we go but when we back out of the garage the first day, all our work is done and there is nothing left but to enjoy the adventure ahead. I can't wait.

Saturday, March 29, 2014

No Rest for the Wicked and a Few Recipes Thrown in for Fun

The rain has not begun yet but it is going to be a pretty good storm. I did just get a message from Michael's mom in Orange County that they had a few nice earthquakes last evening! A few photos fell but no other damage. Tons of aftershocks! My plans to do nothing have kind of fallen apart. Mom made an appointment on Monday morning to have her Mini Cooper's oil changed at the dealership in San Jose. It will take most of the day - it is an hour away. So this morning, I will balance the check book, write out the bills, run to the bank, hit Safeway for food for next week, drive over the pass to the butcher's and to Trader Joe's.

Formula 1 qualifying is on right now and they are also dealing with rain. Should be another interesting race tomorrow.

For our road trips, I make a daily packet which includes the hotel confirmation, a map from the start to the end of the day and suggested restaurants near the hotel. Along with maps and guidebooks from CSAA, these are my tools of navigation. Today, I am going to put together these packets. I also adore an app on my iPhone called "Around Me." It is free. It gives directions to everything from banks and gas stations to coffee shops and restaurants. We have found the most remote and wonderful places to eat using this app.

Here are the recipes for next week. Again, we on prednisone therapy don't process food properly, thus the huge weight gain. Stick with 1,200 calories to lose weight (1,400 to maintain), three to four ounces of protein and non-starchy vegetables.

Breakfast - Cabbage Roll Casserole - stolen from a friend. Recipe below.

Smoked Salmon Wrap - Recipe below

Lunch - Pepperoni Pizza Wraps - Make sure to use La Tortillas Low Carb tortillas. They are 50 calories.

Shrimp Salad - Use low fat mayonnaise -

Dinner - Warm Spinach Salad with Grilled Sausage - with Portobello Mushroom Saute,,10000001906412,00.html

Lettuce Wrappers with Shrimp -

Corned Beef and Cabbage with Horseradish Cream -

Low Carb Sweet and Sour Chicken - A brilliant recipe. Am excited to try it!


Breakfast Cabbage Roll Casserole
1 lb. lean ground beef or turkey
1 T. oil
1 large onion, chopped
1 clove garlic, minced
1 small cabbage, chopped
2 cans (14.5 ounces each) diced tomatoes (I cut this in half because of carbs)
1 can (8 ounce) tomato sauce (I cut this in half again, for the carbs)
1/2 cup water
1 t. pepper
1 t. salt

In a large skillet, heat the oil over medium heat. Add the ground beef and onions and cook, stirring until ground beef is no longer pink and onion is tender.
Add the garlic and continue cooking for 1 minute

Add the chopped cabbage, tomatoes, tomato sauce, pepper and salt.
Bring to a boil. Cover and simmer for 20 - 30 minutes or until the cabbage is tender.
Serves 6 - 8

Smoked Salmon Wrap
(I just made this up)

One low carb tortilla
Enough low fat whipped cream cheese to lightly cover the tortilla
Place two slices of smoked salmon on top
Add any of the following: lettuce, capers, tomato slices, hard boiled egg, finely chopped red onion.

Roll, cut and serve.

Friday, March 28, 2014

Made it to Friday!

I am crawling to Saturday! I need a day off! Mom and I checked in with Apria yesterday and learned that I should have all the confirmations and local phone numbers for all eleven concentrators for our road trip hotels by Monday. It was a lot of work to arrange it all so I will be dropping off a box of See's Candy as a thank you.

Michael crawled home and said one word, "Bourbon." It was a rough day. He usually saves his cocktails for Friday night. We sat in the garage with the door opened as it was warmer than in the garden. Ron drove by, we invited him over for a bit of wine and he stayed for an hour. Love that. Since Susan was out of town, he and Michael made a date for Sunday evening for their "Big Lewbowski" night. It has become a tradition. They never make it through the entire movie but there is wine and the most amazing homemade pizzas involved. Ron is an excellent Italian cook. It will be good for Michael.

To the Ritz today! And our toe nails cut and painted! And fish tacos! It should be a fun day but a lot of driving to shuttling mom over the pass. We have seen each other every day this week but still, the conversations never end!

Thursday, March 27, 2014

Bad News, Good News, Sad News

It was a miserable, long, wet, dangerous drive into the city. I hopped on the scale and lost...1.5 pounds. A disappointment.

I turned to Mr. B. and said that I had so hoped to break into a new set of 10 digits. He calmly told me that 99% of people gain weight during the re-feeding process after the liquid diet. I still lost 1.5 pounds in a week. He said that was amazing. He made me feel a bit better but I still wanted to hit that number, darn it!

He then shared that I can eat my low carb rye crackers I found. (I am having them at lunch with a smoked salmon spread I made last night.) He also suggested La Tortilla low carb tortillas to make wraps! This is huge! So many choices! Only 50 calories! Then he suggested that I also eat nori to make vegetable rolls without rice for a nice snack or side dish at lunch. I was dancing! I was dreaming of smoked salmon with light cream cheese spread on a tortilla topped with onions, capers and lettuce. Yum! Great lunch! And portable!

I left in better spirits and fought my way down the peninsula through the heavy rains to mom's place. We did a walk through Costco, she ate several free samples, I bought a pair of Greg Norman golf shorts for the trip and we arrived at the hearing test on time. She really can't hear, that is clear! The new hearing aids are half the price she paid at another company nine years ago. She was dancing! I crawled home at 5:00, had leftovers for dinner and fell into bed.

Before the rehab class today, I am going to drag mom with me to check on the eleven reservations for my oxygen concentrators at all the hotels during our trip. I have not heard from Apria.

Mom and I are so looking forward to Friday. Toe nail painting and fish taco day! But, we will be stopping at the Ritz gift shop before our toe nail appointment to find a very special gift for someone we will be visiting on our road trip.

In sad news, our dear friend Barbara emailed this morning that her sweet mom had a stroke on Sunday and is not doing well. All of our love and prayers to you and your mom, Barbara. XOXO.

Wednesday, March 26, 2014


Back to the city early this morning, only this time it will be in the middle of our biggest storm this season. Fun. It is my check in with Mr. B., the nutritionist. I am so hoping that I lost two pounds this past week. It would be a big personal breakthrough. Fingers crossed.

Mom made an afternoon appointment with the hearing people at Costco but was nervous about the drive so I am heading to her house after my appointment in the city. In the rain. A freeway challenge. Fun. We will have a bit of lunch together then fill out the paperwork for her to become a Costco member before having her hearing test.

Afterwards, I will head home in rush hour traffic to pick up the house, bring in the vacuum and cleaning supplies from the garage then have dinner before going to an orchestra rehearsal this evening. Fun.

It is going to be a long, fun day.

There is some talk about rain on the weekend. That would be great. No gardening. I really need a couple of days to do nothing. I don't want to get sick after being worn down from these past very busy weeks. I am tired. I am dragging.

Tuesday, March 25, 2014

Recipes for the Week

Chicken Shawarma
I stumbled out of bed in time to spend three minutes with Michael before he got dress then we walked to his car together. I am still waking up. Guess I really needed the sleep!

Mom and I arrived to her eye appointment in time, had a great lunch afterwards, bought a plastic tablecloth for the new table and found a Costco with a hearing aid department. She was shock to discover the price for the same type of hearing aid at Costco was going to be about $4,000 cheaper than the ones she bought somewhere else nine years ago. She was dancing!

The secret success of my diet is to have prepared meals available. I don't have to think when I am hungry. Meals are planned and ready for the day. So this morning, I am making a breakfast for four days, lunches for four days and tonight's dinner before leaving for the rehab class. Hungry? It will be ready and waiting for me. Great food.

Here are the recipes for the week. Again, this is food that is properly processed for those of us on longtime prednisone therapy. Calories and carb are the driving forces. To lose weight, 1,200 calories a day. To maintain weight, 1,400 calories a day. Not a lot of leeway there!

Breakfast: Low Carb No Egg Breakfast Bake with Turkey Breakfast Sausage and Peppers -

Lunch:  Mexican Style Portobello Mushroom Pizza (use non-fat cheddar cheese):

Skinny Buffalo Chicken Strips:

Dinners: Chicken Shawarma with Red Cabbage (use one pound of chicken breast meat and no flatbread):

Tuna Steaks with Jalapeno Sour Cream  and Mediterranean Stuffed Tomatoes (no croutons)-,,10000001733632,00.html,,10000001072227,00.html

Pork Chops with Fried Cabbage and Onions -

Eat well. It makes such a positive difference on how you feel. I promise.

Monday, March 24, 2014

A Day with Mom

Tired. I was in bed by 6:30 last night and drifted off within the hour. The smell of coffee drifted up my nostrils this morning and, like the old cartoons, made me get up in search of the full cup waiting for me. Ah. Delicious.

Today is devoted to mom. We will have a Starbucks while driving to her extended eye exam and her shot in her eye to combat her macular degeneration. Lee and Jeff mentioned that her left hearing aid had just quit working. That is dangerous. She may not hear sirens or warnings or someone coming up behind her. So, after the eye appointment and a quick lunch, I will take her to Costco to have the hearing aid inspected. I hope she doesn't have to buy new ones as they are super expensive.

After that, it will be a mad search to find a plastic outdoor tablecloth to protect our new table from the sunshine and from us, as we as are sure to spill terrible things on it.

Then, home sweet home. My focus tomorrow will be cooking breakfast, lunch and a couple of dinners for the week before the pulmonary rehab class. Wednesday will be a visit with Mr. B, the nutritionist. I am so excited as I am hoping to breakthrough to numbers I have not seen in decades. We'll see.

Sunday, March 23, 2014

New Table

Sorry, I am a bit late today. Lee and Jeff arrived around 2:30 yesterday afternoon after having lunch with mom. They even were able to see her little Mini Cooper for the first time. We served cocktails, set the new 4x4 folding redwood outdoor table and sat out there the rest of the evening. Dinner was perfect. Very little work. We talked and talked and talked.

Falling into bed at 10:30, we didn't get out of bed before 7:30. That was really late for us! After breakfast, they were going to take off to the harbor and walk along the ocean before having lunch. I noticed on Facebook that they found the fantastic Brewery right on the water with wonderful outdoor seating. We had to head over the pass to bring British Don's car home, buy the food for the week and now...I am finally home. The sun is out. The tourists are on Highway 1 enjoying being by the ocean. We will be enjoying our new table on our side yard for many years to come. Thank you to Jeff for making such a beauty!

Saturday, March 22, 2014

Company Coming Today!

I worked all day yesterday. It began the moment Michael left for work and ended around 3:30. All my indoor chores (including cooking most of the food) were finished by 11:45, had a bite of lunch before working in the yards, cleaning the front door and washing the windows.

The house is perfect. The yards are perfect. I prayed for no winds last night!

I am ready for Lee and Jeff.

Now, I have nothing to do other than to take a shower and make our bed. Period. I have a feeling it will be a long boring morning waiting for them to arrive after their lunch with mom, but I wanted to save all of my energies for our company.

I promise to take a photo of the new folding redwood outdoor table they are bring with them. Jeff really did an outstanding job designing and making it for us. He deserves a nice dinner.

The menu? It may sound familiar: BBQ Rib Eye Steaks, Balsamic Mushrooms and Onion and Cabbage with a light dressing of mayonnaise, rice wine vinegar, water and hot Sriracha sauce with peanuts on top. Also, an appetizer of Ina Garten's Sun-Dried Tomato Dip served with celery sticks and crackers. I will also have a bowl of Marcona Almonds (YUM!)) and coconut cashews for munching. Dessert? Marshmallows on a stick roasted over the BBQ coals. Simple. Breakfast tomorrow will be a choice of Breakfast Meatballs or a Breakfast Casserole of turkey sausage, mushrooms, feta cheese and eggs. Michael is tasting both right now, just to be sure they are company quality! He is making moaning noises. The winner is the Breakfast Meatballs.

Believe it or not, I can eat everything except the marshmallows! Again, I have to watch the caloric intake so the steak is going to be just a few bites.

It should be a fun day!

Friday, March 21, 2014

A Visit with the Liver Doctor

I think the liver doctor loves me. After spending time in the waiting room, I understand why. Arriving early, I sat across from a couple who were filling out the questionnaire for her first visit. As she was reading each question, they were both giving an answer. It went like this:

Sex:  Her, "All the time!" Him, "Yeah!!."
Drinking: Her, "God, not forever. So long ago." Him, "What, six months?" Her: "Yeah."
Marijuana/Hashish: Her laughing, "Everyday!!!" Him, "Yeah!!"

The nurse called them in at that point. I wondered what the odds were of them both pulling their lives together, removing all toxins from their daily lives and focusing on helping her diseased liver (or she would not be seeing a liver specialist)? Probably not good.

Dr. H. and I talked about my latest liver tests, the need to keep an eye out for any fibrosis via sonogram and continued having blood tests with the possibility of a biopsy in my future. I will arrange the sonogram as soon as possible and have the blood tests taken closer to my next visit in four months. Again, he believes I am having issues due to the years of prednisone usage.

During the visit, he told me that they are putting together a support group for people with liver disease. He said that he would love for me to be involved as I am so positive and so focused. I agreed that I would do anything to help and was told that someone would be contacting me. Another support group. I will soon need a support group for all the support groups!

Thursday, March 20, 2014

Preparing for the Weekend

Drum roll, please! The pounds lost between February 1 to yesterday? Twenty pounds. I even did a little dance on the scale! Another two pounds will be the lightest I have been in decades. Next Wednesday, I hope to hit that goal during my appointment with the nutritionist, Mr. B.

The liver doctor is going to be thrilled when he sees me this morning. I may even swing by Dr. M., my endocrinologist, who wrote the referral to the weight management group for me.

It is going to be a wild ride today. Beginning at 8:00, I am going to buy food at Safeway and our organic market in town, get money from the bank, bail out my fancy high sandals from the shoe repair shop, drive back into the city to the liver appointment at 11:00 then back down the Peninsula to visit the butcher and Trader Joe's. I will be buying all the food for Lee and Jeff's visit on Saturday. I even have a special breakfast planned for Sunday morning. The weather is going to be nice on the coast this weekend so the meals will be served on the new table under the arbor.

In order to be ready for their visit, I am staying home tomorrow to do the yard work, water, wash the windows, clean the front door, laundry, vacuum the carpet and dust the floors. I will also make some of the dinner and breakfast items so I don't have to cook a lot while they are here.

I want to say that I am rather stunned that I feel so good. My breathing is fantastic. My numbers at the rehab class were excellent and it appears that losing that 20 pounds has improved my overall health.

Wednesday, March 19, 2014

Size 10

In my mind, I feel that I am the same Size 16 I have been for so much of my adult life. When I look in the mirror, I still see that person yet I know she is gone and not coming back. I look normal now. Not bony but normal. I like normal.

Mom and I visited Macy's yesterday morning before the rehab class to return the pair of skinny white jeans I bought by mistake. Skinny jeans. Really? We found several pairs of other white jeans and pants to try on. It was while I was in the dressing room pulling on a pair of the pants that fit like a glove that I realized that I really am smaller. The size 10 was perfect. A size 10. I wasn't a size 10 in high school.

I told Michael last weekend that I still feel fat after losing this bit of weight. He just laughed and shook his head. He loved me at Size 16, he loved me twenty pounds ago and he loves me now. I am a truly loved woman.

This afternoon is the weigh in with Weight Management Group doctor. I guess I am nervous. I so wish I have lost 10 pounds since weighing in with Mr. B. over a month ago. But in my heart, I think it will be closer to 6-8 pounds. It is always such a dramatic drive to the other side of the city, fighting through so much traffic then having to leave the appointment during rush hour. The ride home can take an hour or two.

To make this all a bit easier, I am having my hair cut and colored this morning before the trek into the city. It will make me feel spiffed up. Then after I crawl home from the city this evening, I will have to quickly load up the bass and head to the orchestra rehearsal at 7:00. It is going to be a long day.

Tuesday, March 18, 2014

Celebration of End of Liquid Diet

I got all dressed up in white walking shorts, a gold and white striped t-shirt and a gold jacket with lots of gold jewelry. Mom looked fantastic in winter white wool slacks and a Kelly green sweater with tons of gold jewelry, too. We looked cute! We were in celebration mode. We were going out to a nice restaurant for our first lunch together since my liquid diet in late January.

But before we had lunch, we ran to Macy's and I bought a gorgeous Ralph Lauren black light weight sweater with white polka dots for the trip. I also found a pair of white jeans. I also learned a lesson: always, always try jeans on before buying them. I didn't read the fine print where it proclaimed that they were skinny jeans. I want a looser leg from the hip down, not tight all the way to the knee then a bit of a flair. Back to Macy's this morning before the rehab class.

We then ran to World Market and bought two small hurricane and candle sets for the new table arriving on Saturday. What a bargain!

So, we arrived at the famous Fish Market. Mom had never been there and I had not been since the '80s. When I was at the butcher's earlier, they asked how my diet was going and I told them mom and I were having our first lunch together. They told me to eat upstairs as it will be quieter for mom. When we checked in, the downstairs had a great bar, captain's chairs, an outside eating area on the lagoon where boats can tie up, music was playing and action was happening.

But, we wanted upstairs. We arrive to an elegant, white table cloths, different menu, open kitchen restaurant. We had a beautiful window seat and it was PERFECT! We discovered that the lower and upper spaces were actually different restaurants but owned by the same people. Upstairs was the highest quality of fish, never frozen, prepared by a chef rather than line chefs.

The waitress was lovely, explained everything to us, we told her about our celebration and she gave us a free appetizer of two crab cakes. Now, I have had lots of crab cakes. This was not about the spices or the bread crumbs, this was about large chunks of fresh crab. It was the best I have ever eaten. Mom had a Maine Lobster BLT and I was shocked that she ate it all (except for some of the bread). I enjoyed a fresh crab salad but was able to get a half order. Perfect size. Very fresh crab. It was a lovely celebration of my diet.

It may seem odd to celebrate with food but such is life. I must always be careful when eating out and it was such a perfect lunch for my diet where my focus is calories and carbs.

What surprised me the most was that mom made reservations for her 86th birthday in August before we left. She loved it that much.

It was such a nice day.

Monday, March 17, 2014

Busy Sunday

The drive across the new Bay Bridge was...foggy. We couldn't see anything! Funny! There was a weird sensation driving north because the old section south of Treasure Island was still old. Two levels. We were heading north on the lower level surrounded by steel girders, a low ceiling of steel and high steel railings. Suddenly, we came out of the Treasure Island tunnel into the open on the new span. It felt weird but it was nice to have just the sky above us. Also, the sides of the new span of the bridge have low railings. It felt almost dangerous! 

We arrived early to our meeting spot near Sacramento, sat around at a Starbucks until the guy arrived to take us to his car. We followed him to a storage area to see his 1953 Chevy Coupe with a 700+ horsepower engine with a blower chopped through the hood. Michael gave him many suggestions and ideas and he seemed very happy with all of them!

We jumped back into the car and decided to hit the Bay Bridge again, as maybe the fog had lifted! The traffic was not too bad and we really enjoyed the new views of the city from the new span. But, it was still so foggy along the coast that we couldn't see the Golden Gate Bridge. 

After getting home, I zoomed into action. One guest room needed to have the sheets washed and ironed for Lee and Jeff's visit in a week. Done. I ironed the table runner and placemats they gave us from their trip to Italy. It will look fantastic on the new outdoor table they are bring to us. We also removed both TVs from the guest rooms. I had cancelled the boxes with DirecTV two weeks ago so they were no longer working. We are donating them today. So, I rearranged the furniture in both rooms, took a steam iron to the deep pits in the carpet (the carpet popped right up), we watched a taping of The Americans on FX before I made a killer dinner. We had cheese and bacon stuffed chicken, asparagus and some buttered noodles for Michael. 

It is an exciting day today. Mom and I are going out to lunch for the first time since late January. Fish! Perfect for my diet. I also want to buy a hurricane lamp and candle for the new outdoor table and mom spotted cute T-shirts at Lands End (in Sears) so we are going to check them out before our lunch together. It will be a celebration. I never cheated on the diet. Not one taste, not one finger licked. It is going to be a fun day together.

Sunday, March 16, 2014

Going for a Ride

The new span on the left and the old bridge on the right. It will be demolished soon.
It is predawn. We leave within the hour for a two-hour drive towards Sacramento. A friend of a friend has asked for Michael's opinion on what he should do with his car. It is our chance to take the Porsche, with the top down, over the new Bay Bridge for the first time. It should be spectacular!

In the meantime, we are watching the recording of the Formula 1 race. So far, it looks like the old guard is gone and the new kids and different teams are here.

I worked in the gardens early yesterday and had the most marvelous lunch afterwards. The pizza was delicious and I was able to freeze three servings of it for later this week. I was also able to take a nap before Michael came home. I fell into bed at 7:30 last night and snored the night away.

Saturday, March 15, 2014

Peg's Funeral, Blessings, A Recipe and a Shocking Beginning to Formula 1 Season

The two-hour drive out to the Central Valley for Peg's funeral was uneventful, we arrived early and were able to spend some time with her two daughters and four grandchildren. A lovely family. Peg was born in England so after the services, everyone was invited to an English Tea. Mom was able to speak with people she had not seen in two years. We left there, got lost finding the freeway (mom is renown for not being good at directions) and I was home by 4:00. It was a beautiful evening, Michael and I sat on the swing under the full moon and talked about the week and other things for over an hour.

At the tea, the Episcopalian priest joined us at our table. She and Peg had grown very close the past five years. A lady next to me commented about my diet protein bar and coffee instead of the English Tea, so I briefly explained the situation. The priest asked if I would like a blessing for healing. I will take all the help I can get and I never turn down a blessing! So, the others at our table placed their hands on me and she offered the most wonderful, perfect blessing. It was so very kind and so very good for my soul.

My next weigh in is Wednesday when I visit the Weight Management doctor. I have not seen her since late January. Boy, will she be surprised at the amount of weight I have lost. Today, I will enjoy my first lunch along with a nice dinner. I am making this pizza with just turkey pepperoni and green peppers:  The yards are demanding attention so I will be there all day today.

Monday, mom and I are going out to a new, special place for lunch as my treat. It will be our first lunch together since late January. She is so excited! It is a rather fancy fish place on the bay. Grilled fish and vegetables! Perfect! I will probably have to bring some of it home!

But right now, Michael and I are watching the qualifying for the first Formula 1 race of the season from Australia and SHOCKED that Vettel did not make it through the first round of qualifying! It is a new year. A whole new group of rules and the front of the cars are totally different. Everyone is having problems, except Williams and Mercedes. It is going to be an interesting season.

Friday, March 14, 2014


A quick hello this morning as I prepare to drive mom to Peg's funeral 100 miles away. I leave in an hour. I am still in my robe and slippers!

I did have to laugh yesterday while doing the warm up exercises at the rehab class. Remember the yoga class where I didn't even break a sweat on Wednesday? I felt every muscle while warming up yesterday: arms, thighs, calves. I really did get a good workout!

Mom and I ran to Old Navy before the class and I bought two sets of light pajamas for our trip. What great prices! While checking out, the young woman said, "I know you two. I have helped you before." I had never been to Old Navy before so I was puzzled until she said, "At CVS, you were looking for lip gloss," pointing to mom. She remembered us at her other job. How funny is that? Nice woman.

In other news: Lee and Jeff are coming for a visit a week from Saturday. They are bringing a table newly retired Jeff made for us. It is a redwood outdoor folding table. We will be able to eat our meals in the garden throughout the summer. It is a great design. They will be spending the night. Hopefully, they will also swing by to see mom.

Thursday, March 13, 2014

This and That

Last night, we giggled and so enjoyed the orchestra rehearsal of Dvorak's New World Symphony, 1st, 2nd and 4th movements. I had forgotten about the two, count'm, two bass solos within those movements. As I won't be playing the concert (we will be in Raleigh, NC that evening), my bass buddy Gerry was a bit terrified at the thought of solos. She is a really fine musician but is returning to the instruments after 40 years. Remarkably, she can play most of the music except for the fast runs. She is one bright, funny woman. To add more pressure to herself, she will be having surgery to her foot on April 15th and will be playing sitting down instead of standing. Her husband is being recruited to turning her pages during the concert.

My mom's very best friend, Peg died yesterday. The funeral is Friday, 100 miles away, at 11AM. This is going to be a very sad funeral for mom. Peg was 94-years old and had been in failing health for a while.

My yoga teacher will still be away from the class for another couple of weeks. With the substitute yesterday, I didn't even break a sweat or have to wear my oxygen. But afterwards, I crawled into my chair and slept for almost two hours. I guess it was a good enough work out! The low carb burger and Korean spinach salad were fantastic last night. The taste of freshly ground beef from my private butcher made me moan. Leftovers tonight.

The housekeepers are due early this morning so I arranged to hang out with mom until the rehab class. We are going to check out Old Navy for light pajamas for our road trip. Tuesday night, we did a test run of our luggage in the tiny trunk of the Porsche and it fit! What a surprise! But, we really are going to have to pack lightly.

Wednesday, March 12, 2014

Yoga! Lunch!

I kept busy all day yesterday, even sat in the garden in my bathing suit and read. It was warm and calm. The wind kicked up last night and it was crazy loud. It was a much needed day off from all of my commitments.

Yoga this morning! First time in several weeks due to doctor appointments on past Wednesdays. Later, I will make a nice dinner of a carb free hamburger (wrapped in lettuce) and Korean spinach salad (sweet potato fries for Michael) before going to an orchestra rehearsal tonight.

On the way home from yoga, I am going to buy the food for my first lunch this Saturday. Tuna stuffed Eggs! Pizza! I will enjoy a week of lunches and dinners. Next week? Breakfast is finally being added to the mix.

It has been a nice week: no doctor's appointments for mom and me! A rare week!

I have to say that I am very excited to find out in a week how much weight I have lost. Going into the five-week liquid diet, I thought I would lose 10 pounds. That would have been fine. But, I think I have lost around 20 pounds. That is just amazing to me. My smallest clothes are loose. I feel good. I am breathing well.

Tuesday, March 11, 2014

A Day Off to Recover

I am staying home all day today. That is a rare event. We met British Don for dinner last night at a German restaurant in the city. They had amazing beer, pretzel appetizers, a platter each of two sausages (including wild boar and duck with fig) with potato salad, sauerkraut and spaetzle with cheese. I had a chicken sausage and a cup of sauerkraut.

What was so satisfying for me was that the first time I lost 60 pounds on this same liquid diet three years ago, I could not be around other food, restaurants, people eating, food photos or smell food cooking. This time, I sat with mom while she had nice lunches in restaurants and I went to dinner last night, surrounded by food I really should not eat at this time and it was fine. I was feeling so thin and breathing so well that I really didn't care.

I am looking forward to stepping on the scale at the Weight Management Clinic's doctor appointment in a week. It should be a breakthrough: the lightest I have been since 1989. Fingers crossed.

While I am home today, I am first going back to bed for at least an hour then I have a list of things that need attention: my laundry, ironing, sorting out the cabinet where the spices live, organizing the pantry, paperwork since the first of the year needs filing, calling DirecTV to send back two boxes, cleaning the front guest room closet, sitting in the garden with a book and maybe a short walk along the ocean. It is supposed to be 71 degrees here on the coast today.

What I am not going to do today: attend the ILD Support Group meeting or the pulmonary rehab class. I will try not to feel guilty about it. I am tired from being out late last night and I just don't want to get sick. I need to take a day off to recover. I have finally learned that lesson.

Monday, March 10, 2014

New Glasses, Car and Recipe!

Yesterday morning, I ran over the pass to Costco to pick up my new red glasses - I usually wear contact lenses during the day. They are so very cute that I may not even mind wearing them in public! Afterwards, I went to the other rehab where I ran into people I had not seen in many months. I worked out on the treadmill, then chatted. I worked out on the arm bike, then chatted, I worked out on the recumbent bike, then chatted and finally, the treadmill before buying and delivering lunch to Michael.

By the time he got home around 4:00, I was getting ready to start cooking our dinner but he wanted to do a quick run down Highway 1 since it was such a mild day. So we dropped everything, ran out to the car, put the top down and headed out. It is now that I should mention that he brought home a new car a couple of weeks ago. I was not amused. It is our 5th car. All have insurance. One is now for sale. It is a 1999 Porsche Carrera with 56,000 miles on it. It had never been driven on a freeway. It lived in a garage. The paint and windshield are perfect. It is amazing. We had never put the top down before so, off we went! We were able to listen to music and talk without raising our voices. It was so well designed. Such fun!

I quickly made delicious Paleo Chicken Lettuce Wraps for dinner -  It was a keeper recipe.

Tonight, we are meeting British Don in the city before he takes off for Asia again. Dinner out. It will be a challenge. We are meeting at our favorite German restaurant, I will order a chicken or turkey sausage with some sauerkraut and lots of water for dinner! It is going to be a busy day as I will once again workout at the other rehab then spend the day with mom. Maybe I can fit a nap into my schedule later this afternoon.

Sunday, March 9, 2014

First Meal

Please forgive me if I suddenly sound like someone on the Food Network. I will be brief. It was as good as advertised: my first meal of real food since February 1 was last night. Michael seasoned the 21 day dry aged rib-eye steak before putting it on the BBQ over hardwood coals. It only took 3-4 minutes per side for sheer perfection. Meanwhile, I combined sliced mushroom and sliced onions in a pan, cooked to reduce the liquid before adding balsamic vinegar to the mix. Also included on the menu was shredded cabbage with just a bit of Trader Joe's Goddess Dressing. The combination of the steak with the mushrooms was a match made in heaven. The cabbage added a crunch. I ate a very small piece but it was enough! Nothing has ever tasted as good. Today, back to the liquid diet until a dinner of chicken and shiitake mushrooms with avocado in a lettuce leaf.

It was gorgeous yesterday and I got most of the gardening done within three hours. The tourists were in town (Prince Andrew was here last week) because of the sunshine and mild temperatures. Today? Rain is due later this afternoon so it will be cloudy and cooler today. I am thinking of going over the pass to work out at the other rehab then going to Costco to pick up my new glasses. Red ones.

The possible skin cancer biopsy site looks better and seems to be healing well. The large "water blister" sites from the liquid oxygen have all reduced in size and some have begun to harden to a scab. I was worried about one on my left hand where the blister actually broke on Thursday morning and it was looking a bit infected. It is much better today.

Happy Sunday.

Saturday, March 8, 2014

First Dinner - Let the Refeeding Begin!

I am itching to get into the gardens. Rain is expected again tomorrow, the grass has not been cut for two weeks, some weeding is needed and I want it all to look fantastic for late this afternoon. That is when the BBQ will be rolled into place and my first real food since February 1 will be a 21-day dry aged rib eye steak (just a piece of it), cole slaw and mushrooms with balsamic vinegar.

Exciting. I am ready. For the next week, I will be enjoying the horrible liquid diet food for two meals and a snack (600 calories total) and my normal, low fat, low carb dinner. Tomorrow, I will be so happy to dine on chicken and vegetables wrapped in a lettuce leaf.

This morning, I am attacking paperwork. We are old fashioned as we still pay bills with checks. Drives William crazy. So for the road trip in May, I am now beginning to pay the bills plus an additional half of what is owed. Next month, I will pay the bills as well as the other half so when we are gone, the bills have been paid in full. It takes planning and organization but I love returning from a trip with no bills waiting to be paid.

Into Saturday I go!

Friday, March 7, 2014

Skin Cancer

Cellcept or Imuran. Great drugs, especially when used with prednisone to stabilize a lung disease. There is just one little problem: they leave the skin vulnerable to skin cancer. Six months ago, my lovely Dr. F. removed 25 spots. We had another visit together on Wednesday.

It was a weird drive to the city. I had problems the entire drive in and home. Little things like the entire section of the trip was closed due to roadwork. Since the street parking is now so impossible near the hospital, I finally threw in the towel and pulled into the expensive parking structure. While walking to the elevator, two things happened. The woman who drives me crazy at the ILD Support Group meetings pulled up in her car. She was on her way to the Weight Management meeting with Mr. B, we agreed to meet at the Starbucks across the street and I continued to the elevator. There, on a big sign, was a notice to bring my disability placard with me for a discount. Discount?!? Thank you!

We met at Starbucks, talked about the diet and I actually began to liked her as we crossed the street together for our different appointments.

Dr. F. is young and so very beautiful. She has a hip SF edge to her and I make her laugh. She walked in the door and said, "You look fantastic!" How could I not love her! I pointed out all of my new spots - three on the left hand, one on the inside of the left knee, one on the top of the left foot, one high on my right thigh and two on my right hand that had been "burned" off at the last appointment but had returned. She grabbed her little ice torch and went to work. Then she paused. One on my right hand looked suspicious. She looked a bit closer. She wanted a biopsy. 

So, the hand was numbed, a quick swipe and it was placed in a jar. I have such thin skin because of the drugs and when I peeked, there was nothing there but meat. A quick special bandaid covered it for 24 hours. No water. No washing dishes. Thank you!

The photo is of the biopsy site then the other, looking like a water blister, is where she zapped another spot. It is going to take time for all the spots to scab over and heal. It will take even longer for the biopsy patch to heal. Dr. F. will phone with the results of the biopsy as soon as she gets the report. 

So, back to the car. After showing the disability placard, the cashier said, "The discounted flat rate is $12.00 for disability." I paid. It was then he said, "Next time, ask the doctor's office for this little card and parking will be free." Yes, it was the same little card I use on the other campus. The last time I was on this campus three years ago, they did not have the little cards. I didn't know! From now on, I will be able to park in the parking structure instead of searching for street parking. Ah, the little things in life!

Thursday, March 6, 2014

Sad News

This has been a very difficult year. Since January, seven people we know have died. Mom phoned yesterday having just spoken with the daughter of her very best friend Peg. She was now home, on hospice and not expected to survive the week. She was the woman who really helped mom after dad died so suddenly. Peg had lost her husband the year before, offered friendship and comfort but also hope to mom. She taught mom to begin to create a life separate from the one she had with dad. She helped mom through the hardest times. I personally have thanked her twice for doing what we, her children, could not do. Mom will deeply miss her.

Yesterday, I also received an email regarding the death of Lisa. She and I met through this blog. She had written a comment, I replied, we exchanged emails and the friendship grew. I LOVED her irreverent spirit. Here is what she wrote: Hi. I LOVE your blog! THANK YOU! I happened across it over the weekend while researching my own recent diagnosis of ILD. I am 38. My journey began this past Halloween with a rash. Within a week, I was in the hospital with bilateral pneumonia. I was released after 2 nights - too soon - and told to "check in" with my primary. I went home on 2 liters of oxygen and immediately made an appointment. I got sicker and sicker. I saw my primary on 3 separate occassions. My pulse ox was never checked nor was I given a chest X-ray. By late November, I was dying. I developed Acute Respiratory Distress Syndrome (ARDS) and spent the next month in a medically induced coma. I woke up with a tracheotomy. Within 10 days of waking, I was off the vent and my trach hole began healing. I was told I would make a full recovery. I didn't. After 2 more hospitilizations I had an open lung biopsy and was given the devastating news in March - the pneumonia and ARDS created scar tissue and permanent damage. 

I looked up ARDS - Acute Respiratory Distress Syndrome - and found out that it was rather miraculous that she came out of the coma. A side effect of the syndrome can be an ILD. Yes, she got that, too! But through it all, even when she told me the doctors said she was too ill for transplants, she never was negative, down or depressed. I believe it was because of the loving total support of Valerie and her two children. She felt blessed to have them in her life. She was deeply loved.

I received this email yesterday:
It's Valerie, Lisa's wife. 
I'm so sorry to have to tell you she passed away last Sunday, February 23. She got to be in control all the way. She left on her own terms.  I really, really hope you are doing well.
Love to you and yours,

Through my tears, I laughed at her comment that Lisa was totally in control of how she died. Of course she was. I would have expected no less. She was one heck of a spirit and I so hope that when I see the bright light and the tunnel that her spirit is there to welcome me home.

Wednesday, March 5, 2014

We All Have A Choice

Three more days before real food. Just sayin'.

We have another new person in the pulmonary rehab class. She apparently was telling the head of the program that it was hard for her to join our class because everyone knows each other and...apparently, she is shy. I chatted with her and invited her come early to join us in the lobby. Fun. She joined us for the first time yesterday.

I learned more about her throughout the day: we were married in the same year, she has three children, she is divorced from her husband but still living together (something to do with IRS problems) and that she is looking for a job. Kind of a mess. I also learned that she never had a pulmonary function tests before being given the diagnosis of COPD. I gave her a pep talk about asking for a full run of PFTs, that she should follow her numbers, she should be checked for sleep apnea, she should be checked for GERD. She seemed overwhelmed.

It was later when I talked with the head RN to tell her what I had learned: she never had PFTs. The RN paused and said, "I am surprised that she was sent to rehab without them." She was going to check her charts then talk with her directly. Her doctor is one of the best. Did she not remember having PFTs? I guess I get frustrated with people who just accept a diagnosis without proof, who are not in charge of their treatment and kind of feel like a victim. That is the trifecta of what will kill them.

So, who seems to survive longer with a bad diagnosis? The people who educated themselves, faced the bad stuff, appreciated all the goodness that life has to offer, stayed positive, exercised daily, watched what they ate and carried on. Lived life everyday.

We have a choice.

Tuesday, March 4, 2014

Noble Goal

We had just checked out at CVS near mom's house and while I waited for the clerk to bag something, mom returned our cart to its spot near the front door. The clerk stopped me and said, "We need more people like you two. You are so happy and positive it brings the energy up of the whole store." I told her that mom was going to be 86 in August and she said, "She is almost dancing."

It was a that moment that we both glanced out the large windows to see mom actually dancing! The clerk said, "See! She IS dancing!" We smiled at each other.

What a gift it is to spend so much time with her at this time of our lives. What a gift to have a mom who never complains or offers unsolicited advice. What a gift that I am still alive and able to haul groceries for her or drive her to doctor's appointments.

Before CVS, we had gone to In-N-Out Burger for a hamburger for her. There was an older guy there (I think he is older than I am!) who always takes care of us. He brings our order to the table, refills our drinks, opens the door when he see us coming, stays and chats on and off while we eat. Just a nice man. He said he likes us because we are always happy.

It sounds so simple. A smile. A kind comment. Some interest in others. It brings rewards of human contact in a world where that is losing ground to technology.

To quote my dear 89-year old rehab boy Sherman, "It is my goal every morning is to make someone laugh."

What a noble goal.

Monday, March 3, 2014

A Busy Nothing Sunday

We watched the Academy Awards last night. That was so unexpected. We don't go to movies because of possible ill people around us, we don't stream movies, we very rarely rent a movie so we are very uneducated about all the nominees. We rather enjoyed it but neither of us made it to the bitter end. The last hour was watched while we were in bed but we were snoring when the big awards were announced.

Why were we so tired? I don't know. We did NOTHING yesterday. Also for the first time in years, we never left the house all day. In the morning, I phoned the Hilton Group to make all of our May road trip hotel reservations. Then, I wrote the itinerary with all the needed information and finally, the forms for an oxygen concentrator to be waiting at each hotel were completed to be delivered to Apria today.

While this was happening, Michael watched a NASCAR race and some movies. We finally decided to pull on clothes and brush our teeth around noon. He had to clean up before I would make lunch: Grilled Monterey Jack Cheese on Sour Dough French Bread. He was very happy. He had some leftover lasagna for dinner last night so it was an easy cooking day for me.

I discovered that if I searched for "low fat/low carb recipes Pinterest," thousand of hits appeared of wonderful new recipes for my diet after the liquid diet ends next Saturday. I spent a few hours culling the recipes, printing and bookmarking them and dreaming of eating.

Five more days before I begin enjoying one meal a day of real food. Let the countdown begin!

Mom and I are going to get together this morning after I do a quick workout at the other rehab. We'll run down to Apria, swing by a Target, share lunch together (I will bring my diet food) and talk nonstop. I always wonder how she did during her weekly Poker game with the guys on Saturday night. Still makes me giggle.

Sunday, March 2, 2014

Dreaming of Food and Our Road Trip

It was a quiet day yesterday. I put together my dinner menus for the first week I can finally eat, printed and sorted all the new recipes I had found during my month-long liquid diet, made of list of the medications I needed to order now for the road trip in May, printed the request forms for a concentrator to be at each hotel along the way, talked for an hour with Michael's mom, did the laundry and ironed all of Michael's work shirts.

He went to his second funeral in a week. So many people he had not seen in years were there. A friend who had a very interesting life and should have died many years ago, was celebrated. Everyone from corporate executives to the President of the Hell's Angels were in attendance.

Late in the afternoon, Michael walked through the door with Wayne. They shared some bourbon, Michael told stories about his friend who died, they ate some appetizers and finally, I served them both a nice wedge of homemade lasagna. (Thank you for the recipe, Pioneer Woman.) After Wayne left, we sat outside and Michael told more stories.

The only goal for today is to agree on the locations for our road trip hotels then I will phone the Hilton Group and make all the reservations with just one person. I will need all the confirmations for tomorrow when mom and I will swing by Apria to submit my order for all the concentrators. They need 6-8 weeks notice.

I dreamed that I ate a muffin by mistake last night. Funny how the mind works! I felt so horrible!

Saturday, March 1, 2014

Forgot Morning Medications

We climbed out of bed yesterday to notice that magic had happened. The Angel's Trumpet tree had ten, big, beautiful bells blowing in the wind of a storm. They were magnificent.

I really had my act together yesterday morning. I remembered to pack a new book to read on the treadmill, my lunch on ice, a pair of shoes to wear after working out, my oxygen, a Prevention Magazine to give to my mom, a check to pay the mortgage, drank my liquid diet breakfast then took off right on time. I did it all.

It was when I was way over the pass and very close to rehab when I realized I had not taken my morning medications. My prednisone. My bactrim, My imuran. All very important. If one is pulled off of prednisone too quickly, I know it can do real damage to the adrenal glands on the kidneys. Not a good thing.

The weather was bad. There were storms blowing through and flooding advisories. What should I do?

After working out, I drove down to mom's, threw her in my car and we headed back over the pass. There is a fabulous deli in town which serves sandwiches on their homemade bread. I thought we would pick up a half sandwich for mom's lunch on our way to the house. Another stop. When we finally got home, we got involved looking out the windows to see the gardens and I was able to show mom the Angel's Trumpets. Oops! Take the medication!!! By now, it was 10:30, only two and a half hours late. Not too bad. Still...not smart.

We played two hands of cards, had lunch then drove north along the ocean. The ocean was alive. No surfers! A rare event. We wove our way through Devil's Slide and the new tunnel before heading back to her house.

It certainly was an unexpected day and we enjoyed being together but I need to remember my medications!