Living Well with a Bad Diagnosis - Lung Disease

Tuesday, May 31, 2016

Collecting Data

What a weekend! British Don arrived in the afternoon, we chatted, I made a quick delicious dinner and he left in his pretty car at 7PM. We were able to catch the final seconds of the Warriors win and watched the interviews afterward.

I worked on the project for the lawyer all weekend and still not close to being finished. It is rather interesting. I am gathering information regarding our expenses, income and the damage my illness has caused to our retirement (less Social Security, less earned income during peak years). In 2003, we no longer were paying for our son's college and were making a lot of money between us. We traveled. We ate out a lot. We shopped. It was lovely. Compare that lifestyle to 2006 when we paid huge COBRA costs for my medical insurance, I collected the final State Disability payments and began to lose income. The medical costs soared. Both of those years will then be compared to 2015. We are now retired and living on a very fixed income. Few restaurants. Few trips to family's homes. We are very careful with our money. After the rehab class today, I will keep plodding along and will try to get this all into a database to send off to the lawyer.

For a break from the numbers, there is a rehearsal of the Irish fiddling group at 5:30 this evening.

Ah, rehab class today. As planned, I am a going to pull way back from the caveman and it will be interesting to see if he gets the hint and backs away or if he becomes aggressive. I will change my routine to make sure I am never working out next to him. Will report back tomorrow.

Monday, May 30, 2016

A Day to Remember

Happy Memorial Day! In years past, I have blogged about my uncle, Jerome. He was mom's brother who was a navigator on a Flying Fortress. He was filling in for another navigator when they experienced engine problems past the point of no return during a bombing run over Bremen, Germany. A submarine base. The plane was a sitting duck, hit by flack and crashed into a farmhouse. His body was never found, even during a search for him after the war. It changed mom's life as she was a pre-teen, her mom disappeared into grief and they never celebrated Christmas again. She loved and admired her bother. He was already an actor, a published poet, a published composer and a pianist. He loved math and physics. He had a great future ahead of him. This is always a difficult holiday for my mom. It brings back a flood of memories. We will also remember him today.

In other news: British Don was bumped in his new/old car (Michael's former car) and it is without a bumper in our garage. We are going to do a quick run over the pass this morning to grab it and get home. The coastside was totally packed with tourists yesterday and we expect more today as it is predicted to be HOT over there and COOL over here. Later, we need to buy some Peet's Coffee beans for next week and I think Michel is taking me to lunch someplace. We still have sneaky places that the tourists don't know about. Also, I think British Don may try to make it down here later this afternoon to pick up his car.

The only thing that might save us from the massive onslaught of tourists today is the local sports scene. The Giants play at 10AM, the Sharks at 5PM and the Warriors at 6PM. The local teams are doing really well!

I almost killed myself by doing almost five hours of gardening yesterday. It felt great but I was really dragging and even snored through the night.

Sunday, May 29, 2016

Name That Tune

I have been hearing about some study that reported that people with lung disease should sing. It opens up the lungs and supposed to be very good for us. With that in mind, I chose some CDs to keep in my car so I can sing along without bothering people! Friday afternoon, I left mom around 1:45 and made my way to a birthday party on the coastside. Our friend Jim owns a large soil/stone/everything else business. His wife has worked the office and scheduling for years and for a couple of decades, their two sons have been taking over the day to day business.

His wife, Kathy, turned 70-years old. They threw her a surprise party. I arrived well after the surprise but all the food and cake and yes, even Elvis were all still there. He was the most amazing Elvis I had ever heard. He even sang a couple of songs for me! Excellent! After everyone left, the business was slowing down for the weekend, Jim took us into his office where he could access 13,000 songs he via his computer. It was there where we played Name That Tune along with Name That Singer. Jim had played this game with Michael many times, who somehow knew the obscure one-hit wonders from the 50s but I have the Big Bands covered. And, Jim had heard that I knew lyrics.

He began with the statement that if it ever came to a competition, he wanted Michael on his team. We began. With just a few notes of the introduction of so many of the songs, I was able to name the song, sing the lyrics before the singer then name the singer. I blew him away. He kept trying to trip me up. Somehow, my brain worked and I was able to recall names so easily. This went on for hours. Some of the songs like, "I will Survive" were acted out and as we loudly sang along with Gloria Gaynor. My lungs were working! Michael was dancing! I was singing! Jim was laughing! It was FUN!

Finally, Jim said, "If you get this singer, you are on the team." Tension. Drama. I was nervous. The first few notes, I knew the song but waited until I heard the singer. "Nina Simone," I declared. Jim jumped up, planted a kiss on my cheek, gave me a huge hug and proudly announced, "You are on my team!"

We crawled home at 8:00PM, had a bit of dinner but I have to tell you, I sure noticed how happy my lungs were after about four-hours of singing and dancing and laughing.


Saturday, May 28, 2016

More Caveman

I beat the caveman to the other rehab early yesterday morning, talked with the RNs about my visit to the Lung Transplant Clinic and other subjects before bringing up my problem. Sara, who works at my rehab class, understood immediately. She noticed that he doesn't talk to anyone else then I added I noticed that he stared at me throughout the workout from across the gym. As of last Tuesday, he was making me uncomfortable, I felt that creepy feeling and I would be pulling way back from him.

About 25-minutes after I had arrived, I was hoping he was not going to show up when Sara came by the arm bike to let me know that he was filling out paperwork. He was there.

In the meantime, I was checking in with some dear people I had not seen in a couple of months. They had been worried about me. It was wonderful to be back and feeling so well loved. One of them shared that he was 86-years old and there was no way I would have thought he was that old just looking at him. Such a nice man but having horrible kidney problems.

Out the corner of my eye, I saw Sara taking the caveman through the tour of the gym. I gathered my purse and magazine, turned around and there he was.

"Are you buying new oxygen equipment?"

I was wearing my liquid oxygen backpack and was a bit confused by the question. "No, this is old equipment." "Not, that," he replied, "the one on the brochure." He had been watching Tuesday when Kathy gave me the information regarding her Eclipse that she would love to sell.

"Yes, it would be perfect for travel," I said.

He then told me that he was going to buy a portable oxygen system since Medicare will pay for it. I told him that they would pay for a portable oxygen system if it was the only oxygen in use. No concentrator. No gas. They can be temperamental so it is not recommended that they are the ONLY access to oxygen. But, since he already had a concentrator, they would not pay for it.

Then, he asked if I worked out at the other rehab on the weekends? Now, I do workout on the weekends if it is raining or if I have extra time while waiting for Michael to finish something. Rarely in the summertime do I workout at the other rehab as I would rather walk the beach. "Yes, I do," I answered.

Then, I glanced at my watch and said, "I'm late. I've got to get to my mom." He walked me out. Without a backward glance, I answered his, "See you next week," with a wave and a bye. Still creepy. Feeling it even more.

Friday, May 27, 2016

Back to the Other Rehab

The caveman arrived really early to rehab yesterday but not before I had warned Sherman about what had happened on Tuesday at the end of class. He and I were prepared. After a hello, Sherman launched into a long story about his daughter's recent surgery and issues, which bored the caveman and he wandered off. Then, he wandered back while I was talking with an RN from the other rehab who just happened to be working at the different hospital. I introduced her to Sherman then to the caveman and mentioned that he will be seeing her on Friday at the other gym for the first time. As she and I continued to talk about her uncle's recent lung biopsy, he wandered off again. Throughout the workout, I was able to mostly avoid him by being very busy talking to anyone around me. Worked rather well.

I am leaving for the other rehab within the hour where I plan to say hello to the caveman before he begins his introduction to the equipment by the exercise physiologist. Without him wanting my full attention at all times, it will allow me to chat with my friends who I have not seen in months. I am going to leave after just thirty-minutes as I have to meet mom for a pacemaker doctor appointment.

Busy weekend ahead. Today, there is a surprise birthday party at noon for a friend here on the coast at their business. Michael is going to make it, I am going to be late. On Saturday, I need to do the yard work, make a lot of copies for the attorney, gather massive data and put it into a database, buy appetizers for a get together with Rick, Natalie and Melanie later in the afternoon. Who knows what will happen on Sunday and Monday!

Thursday, May 26, 2016

Just a Bit Uncomfortable

Michael's chili was delicious! It was dark, rich and a bit spicy! After the phone call with the attorney, we went to an early lunch together and I worked most of the afternoon to gather information and paperwork. I will be working on it through the weekend.

I hadn't chatted with Michael's mom in a while so we had a great hour-long phone conversation. She sounded happy, very positive and so ready to move across the country in about two weeks. This weekend, her daughter is moving into the adorable house they are renting together. A new beginning for the next phase of their lives.

Our son is in the wine country for a new festival this weekend but we won't be able to see him. We thought we would meet up with him at their hotel in the city before or afterward but they are staying at the venue. It will be a total zoo and he warned us not to come up there. So close yet so far!

Back to the rehab class today. Years ago, I used to meet a woman from my class at the other hospital gym three mornings a week. She was always late. Then, she would never show up. This was when I had set a priority of meeting her at a specific time early in the mornings. I was driving 30-minutes in rush hour traffic to be there on time and she lived five minutes away. After the fifth time in a row she did not show up because she overslept, I pulled back. I never committed to a specific time again. She quit working out at the other rehab gym all together. I learned a lesson.

But now, I am beginning to have another problem. A man Sherman and I have been working with in our rehab class asked to meet me at the other rehab tomorrow morning. It will be his first time there. He asked when I was going to be there, I told him 8:00AM thinking that would be too early for him. Well, we are meeting. I thinking, oh no, here we go again. I love my friends at the other rehab. The woman used to get mad and pout if I talked to them instead of her. I really don't want to have the same problems again.

This comes after I was rather shocked on Tuesday when he told me he talked to our former priest and arranged for me to go to Mass in a private area so I wouldn't be exposed to diseases. I explained that trying to get back to the coastside around noon on a summer Sunday would be near impossible. Kind of creepy. Sherman noticed that this guy never talks to anyone but me. I will be sitting talking with a group, there will be a pause and he will jump in and says something directed at me. I will answer then return to the group conversation. He will wait then jumps in again and again. It's becoming a bit uncomfortable. Michael just mentioned that he could show up at the class, if I needed him to be visible.

Wednesday, May 25, 2016

No Pain!

It was a big workout yesterday. Even though I had not been to the pulmonary rehab class all last week, I still did the entire routine. When I stepped out of bed this morning, I expected to feel something in my hip or down my legs. No pain! Later today, I think I am going to try to take a walk to see if I have any pain during the walk or afterwards. The shredded tendon causing pain in my hip seems to be repaired or repairing. We will see if there is any pain tomorrow. I actually may be healed! Back to the treadmill!

Sherman was physically unable to attend Dick's funeral so I gave him a lot of the details including stories other people told about our friend. His eyes welled up at times. I also have been thinking of buying a portable oxygen system and was talking about it wth Kathy in the rehab class. She told me she thinks she has an Eclipse system, which is continuous air, that she has never used. I know it is big but it would be great for traveling. She is going to gather some data and we will talk again on Thursday.

It is not good when you have a lawyer in your life. We have a meeting via phone this morning with a very expensive attorney due to a family trust that is being funded soon. It is so restricted, available to a lot of people and not very much money so we don't expect to qualify for anything. Maybe they will fund a portable oxygen system! I am not holding my breath!

Today is Michael's day to cook dinner. He chose to make a new recipe of a crock pot Chili, which will take about eight hours to cook. So, after breakfast, he is going to put it all together and get it going. It will make about 10 servings so we are going to freeze quite a bit of it.

And my big news of the day is that I held our neighbor's four-day old baby yesterday. Ella is beautiful and I forgot about that new baby smell. So delightful! Made my day.

Tuesday, May 24, 2016

Just a Pound or Two

Since I missed pulmonary rehab last week, I have had no pain in my legs or hips. We will see if I can say the same thing tomorrow morning after today's class.

I also was a bit nervous about all of our meals out in resturants and the dinner party last week. Something the nutritionist told me long ago has stayed with me: thin people don't know what they weigh but they notice when their clothing is a bit tighter so they watch their diet for a couple of days. I have no idea what I weigh because I would become obsessive about it by weighing myself countless times a day. The nutritionist has banned scales from my house. He recommended that I could weigh myself at rehab, if I wanted to check my weight. Which I don't.

But, I was feeling that I had gained a pound or two or maybe just water weight. It wasn't good. I have three spots I tend to check - my rings, my watch, my smallest pants. If all those are tighter then NASA, we have a problem. Even though I was watching all my food intake during the days I knew we would be eating out and I was careful about ordering, I still felt it was more food than I would usually eat.

My fingers were thicker, my watch would not travel up my arm and my blacks cords felt a bit tight. Time to really watch it.

So, Sunday and Monday I really watched every bite and ate under my normal calories. A very light fish dinner helped. This morning, my fingers are back to normal, my wrists appear much smaller and I plan to wear yoga pants to rehab. It's amazing that it really takes just a couple of days to get that little extra weight off. In the old days, I would not have even notice a pound or two at most and slowly all the pounds I had lost would have returned. Now, I am uncomfortable with just a small weight gain. I can feel it. I don't like it. I guess that is the difference in my maintenance of the massive weight loss for over five years. I am here to tell you that it is never going to come back.

Monday, May 23, 2016

Dark and Stormy - HA!

It was cloudy and dark, looked like a storm was going to blow through then...nothing. No rain. We were on the other side of the pass buying groceries and as we looked to the west towards home, I was sure we would be dodging rain drops but it was sunny on the coast! Because of the clouds and appearance of rain, there were no tourists! It was sunny, it was warm and NO TOURISTS! What a treat!

British Don drove down to exchange cars with Michael. His car was bumped so Michael is hiring one of those mobile dent guys to fix it today and he wants to clean it up for Don. We all went to lunch at the harbor, a rare treat since it is usually packed with tourists. A table was available! No problem! Afterward, the three of us sat out on our side yard and chatted. Relaxing day.

I do have to confess that I was in bed by 7PM and slept through the night. I feel so much better this morning.

Mom and I have a full day ahead of us. I have a list. Betty's birthday is this week so I need to get a gift in the mail for her. The wonderful neighbors in the corner just had their second daughter last week so we will swing by Nordstrom for a little something for the baby. Then, my printer needs ink. And that's just my list. We'll see what mom needs to do today.

I noticed I am coughing a bit. The worry is that my life has been so busy that I am getting sick. A cold. Or something. My focus for the week is to exercise everyday. It is amazing how my body responds to exercise. I breathe so much better, I don't need as much supplemental oxygen, I sleep like a baby and I feel fit. Simple. Break a sweat. Just an hour a day and it has such a positive result.

Sunday, May 22, 2016

Sunday, Sunday

After doing close to nothing other than a nap yesterday, we had a delightful evening with the Irish fiddling group members and spouses. Tim and Ellen's house was so comfortable and sweet. A large array of appetizers greeted us followed by a delicious pasta dish. We then played a very fun game that was a take on another game. Very inappropriate. Very not-politically-correct. Very fun. I can't believe we didn't climb into bed until 11:00! So late for me!

Michael is going to do the over the pass food shopping with me then we plan to meet up with British Don later this afternoon.

A nice Sunday together.

Saturday, May 21, 2016

Recipes for the Week

At 2:30 yesterday afternoon, the front door shut and I was home. Deep sigh of relief. I was exhausted. Mom and I had spent the day together, she met with a financial advisor in town, we went to the county offices because she had a question then lunch. I began to fade. The week of craziness was beginning to have an effect on my body.

Michael made dinner. I was in bed early.

Today, I am going to do things in the house, maybe take a nap then head north this evening. We are invited to dinner at the house of one of the violinist in the Irish fiddling group. Eleven of us. I need to be awake and interesting! Oh my!

I haven't blogged my recipes for the week in a long time. Having lost over seventy pounds five years ago, I have been able to keep it off by eating a protein-driven diet with non-starchy vegetables. Each dinner makes four servings and I try to cook a meat, poultry and seafood dinner each week. The goal is 1,200 calories a day to lose weight, 1,400 to maintain. Why eat this way? I have been on prednisone since May of 2005 so my body doesn't process sugars properly. I quickly gain weight if I eat differently. Sugar and anything that processes into sugar is the bad guy to be avoided. I find fresh vegetables to serve on the side of each dish. So, here is what is on the menus for next week:

Nancyelle's Thin and Crispy Pizza Crust - HERE Freezes well.

Wasa Crisp with peanut butter

Roasted Cod Provencal - HERE

Kicking' Chili - HERE Makes a huge amount of chili which I will freeze for other meals.

Sesame Chicken - HERE

Sautéed Sicilian Lamb - HERE Use only 1-lb. of lamb.

Chimichurri Shrimp Kabobs - HERE

Friday, May 20, 2016

Crawling to the Weekend

What a day! It was as nuts as I had anticipated. The good news is that my cool eye doctor did some special tests during this appointment, took a good look and declared that my eyes were healthy and doing well. Thankfully. I think I am most fearful of losing my eyesight. I drove just a block away to visit with Sherman but he was not there! The staff told me he was having car issues.

After driving home, I had a bit of lunch then Michael and I had a difficult drive into the city. Lots of traffic and lots of tourists and bad drivers. While having my blood drawn for the protein that could be causing me to catch colds and viruses so easily, we had a fun conversation with the phlebotomist. She saw my birth date and said, "Scorpio." Well, that began a fun discussion. Apparently, her daughter was a Scorpio and was dating a Virgo (like Michael). We had her laughing so hard. She kept saying, "It's like you know my daughter!"

We wandered across the street to the hospital gift shop for breath mints and I found Betty's birthday card! Bonus points! We walked through the endless connectors between buildings to our meeting room. A new assistant to one of the doctor's was already there. He was raised in So. Carolina and this was his first job just out of college. He was so impressed that we ate at one of his hidden restaurants in Charleston. We talked food! His parents can't believe he is paying $1,500/month for a room in San Francisco. Horribly high rents here! I can't blog about the meeting but it was so interesting and I volunteered to work on a special project.

We ran out of there a bit late, drove down the coast and arrived at the next event! The place was packed! It was a cancer fundraising event. We had more food! The owner brought over some prawns and steak bites. We ended up bringing it home as we were full from the meeting food. 

Finally, I crawled into bed at 9:30 and don't remember anything. 

I so hope I don't get sick. Too much this week. 

Oh, and today? My mom has an appointment with the firm that did our taxes for a review of her portfolio. She is not happy with her broker and wants advice. I need to leave quickly to drive over to bring her back to the coastside for the appointment. Afterward, we have to go by the city offices in her town because they messed up her primary ballot. 

I am already looking forward to bedtime.

Thursday, May 19, 2016

One Busy Day

As Michael took off to run errands yesterday morning, the house was quiet. Lovely. I spent the morning getting ready for the housekeepers today, paid some bills, cleaned the kitchen, did a load of laundry, did about an hour of yard work then watched two episodes of "House of Cards" on Netflix. I never left the property. We had leftovers for dinner and watched the Warriors and Giants games. Both won, thank you.

That was my day off. Today? I may not survive!!! I need to be out of the house by 8:45 for an eye doctor appointment. One of the side effects of endless prednisone therapy is high pressure in my eyes. We caught it early so I don't have any damage, yet. My uber cool jazz pianist doctor is always up for a good chat about music. Afterward, I will swing by rehab to check-in with Sherman to tell him about Dick's funeral. I will not be staying for the workout. No time. 

Dr. K. put in an order for a blood draw to test some protein in my blood to see if it has been suppressed by years of prednisone therapy. Before our Patient Advisory Board Meeting this afternoon, we will swing by the blood draw area and get that done. If low, Dr. K. said she can fix it. It may be the reason I have been getting so ill so often lately. 

After our meeting, we have been invited by the owner of the restaurant right on the water just north of us for a charity event. Apparently, he bought a table and needs to fill it with people. We got the call. By the time we arrive, I know I will be yawning and itching to get home but maybe I will get chatting with the other people at the table.

We often just shake our heads in wonderment. When is life going to slow down? Days fly by. It has been so busy lately. But, it is now that I need to appreciate every moment. There will come a time, rather soon, when it will be a struggle to leave the house. My life will become very small and confined. Days will drag. I know I will hate that. Even though today is going to be exhausting, I will make sure to step back, appreciate that I am still active and involved in life and catch up on my sleep on the weekend. 

Wednesday, May 18, 2016

Fun Day Together

What a day! Lee and Jeff arrived early after having breakfast at their hotel. We drove up to the tunnel, parked in the lot and hiked on the old highway along the cliffs. Thankfully, I had my oxygen with me. It was a road etched out of very steep, unstable cliffs, which were first used by the railroad to bring people down the coast from the big city. The views were beautiful and it was clear. The water sparkled. We didn't walk too far into the 2.8 mile hike but this was something that I think they will want to complete during their next visit.

We then drove down the coast to a remote expensive campground with canvas tents on wooden foundations and cabins and a lodge house. It is always booked for corporate events or weddings. Lee works for a large corporation and fell in love with the remoteness right along the ocean. She thought it would be perfect for some meetings. A great restaurant and General Store are also on the property.

Onto Santa Cruz! But, suddenly, we were almost swallowed up by the fog. We couldn't even see the ocean. Oh, no! We drove on. Pulling into Santa Cruz, there is a sneaky way to see the sights. A quick turn here and a turn through there....we arrived at the beginning of W. Cliffs Drive. And it was well named. Beautiful old and remodeled homes lined the twisty road right on the ocean. We spotted the famous pier and Boardwalk but we were headed elsewhere for lunch. We took them to our favorite dive where everything is homemade, even the bread. The sweet restaurant was in a converted house in a family neighborhood overlooking the Boardwalk. They loved it. The fog lifted and it was sunny and warm.

We made our way back to the Beach Boardwalk, parked and enjoyed walking the entire Boardwalk. I love that it was free admission. They are known for their old wooden roller coaster and carousel. The rides are paid by wrist band tickets but we enjoyed just watching it all. It was spotless and looked so pristine. It had just opened for the season. The entire Boardwalk steps down onto the beach then just yards to the ocean. So must fun.

With the fog lifted, the drive home was stunning. The ocean views, the cliffs, the hills. My sister and her husband live near Sacramento. No ocean. No ocean breezes. They really enjoyed spending time along the coastside.

They went to their hotel for a quick nap before coming back for cocktails and dinner. We drove to the harbor and had views of the fishing fleet and private boats. We all ordered seafood and had a delightful dinner. Muscles for me! Pasta with Prawns for Michael. Tuna Melt with a tuna steak for Lee and Jeff had Crab Louie. When we drove home, there was the Irish Fiddling group practicing on Leslie's front porch. I haul Lee over with me, Michael rolled my bass into place, Jeff stayed down on the street with other neighbors and we played. Suddenly, other neighbors arrive then more came out to listen! We had a pretty good audience at one point!

It was the perfect end to a nice two days of their time in our lives here on the coast.

Tuesday, May 17, 2016

A Day Together

Lee and Jeff arrived around 3:30, we chatted, had appetizers a bit later then we watched the Warriors game. It was rough. They lost. Dinner was fantastic, they loved the barbacoa tacos and the strawberry pie was actually just fine. Delicious, fresh and tasting of summer.

We did have a bit of a "getting old is the pits" moment when the three of them learned they had each fallen recently. Lee missed a little step into her living room and fell hard. Jeff tripped on carpet and fell so hard onto the top section of their toilet that it shattered. He had a nasty wound on his knee. Then, there was Michael's gardening wounds. I was the only one who had not taken a tumble.

Their lunch with mom went really well. Everything I mentioned, mom had already told them. They had a really nice time together.

The fog is dense this morning but is just beginning to lighten up. It is going to be warm and perfect along the coast. The plan is to drive down the coast to Santa Cruz, have lunch at our favorite dive then a walk along the Beach Boardwalk. It should not be crowded on a Tuesday, I hope!

It's fun to have a bit of company and so very nice of them to insist on staying in a hotel just minutes away.

Monday, May 16, 2016

Lee and Jeff Due

I was sleeping by 6:30 last night. Too much. Worn out. Done.

It began with making a Strawberry Pie and Barbacoa for tonight dinner with Lee and Jeff. I also wanted to try to make a special breakfast item for Michael. The Scotch Eggs turned out great. Paleo-style. A hard-boiled egg (boiled for only four minutes) then covered in a thin layer of turkey breakfast sausage and baked for 30-minutes. He loved them.

Then, it began. Michael and Ron attacked a large bush that was dying near Ron's mailbox. The heavy equipment came out. Men. I kept busy knocking down cobwebs and using the power cord when they began digging out the roots. Three large recycling containers were used. When Michael tried to pull the roots, he fell backwards on his keister. Then, somehow, he hurt his toe. We think it might be broken. Maybe it wasn't the smartest thing to work in sandals. Then, while trimming with the hedge trimmers, he nipped one finger. For the rest of the day, he limped and complained. Now, this is a man who worked with metal and would come home with gashes I thought required stitches with nary a complaint.

So, I cut the grass. I trimmed. I weeded. He was injured. He did help with watering the pots and washing the windows with me. By the time we were finished, I was so tired I wanted to just stare into space.

It was then, while I was still in my gardening clothing, that British Don dropped in. It was so great to see him. He, too, liked the Scotch Eggs! Within minutes of his departure, I was in my pajamas and promptly fell asleep in my chair. It was 5:30.

Lee and Jeff are due after spending the afternoon with our mom. Tomorrow, we are going to be together all day. It is foggy and a whole lot cooler than what they are used to. They are going to freeze!

My list this morning is not too long: clean the front door, dust the floors, vacuum the throw rugs, and clean the stove top. We are going to lunch then I need to pick up some ice cream. The Strawberry pie didn't turn out well so I am going to spoon it into a bowl and cover it with a scoop of vanilla ice cream. The strawberry juice leaked into the oatmeal crust. Not attractive but still delicious.

It will be nice to spend time with them for a couple of days.

Sunday, May 15, 2016

Rehearsal Marking Letter M

The orchestra concert was last night. I was nervous. Michael went with me, walked my bass into the venue, then we began a short warm up of problem spots in the music. It came time for "Something's Coming" from "Selections from West Side Story" at rehearsal M. It was the spot where the conductor kept slowing down. It was the spot where the other orchestra members quietly insisted that I ignore the conductor and just keep the driving bass rhythm going. They would follow me.

We practiced it then went further into the piece. When we stopped, I asked the conductor if that was the rhythm he was going to conduct as it was the slowest we had ever played it. Suddenly, confirmation of that fact came from the oboes and the French horns and the trumpets. My peeps! The conductor replied to keep the rhythm he sets at the start of the song and to IGNORE him if he slows down. I had his permission. That has never happened to me my entire career!

The piece was the second to the last in the concert. I put it out of my mind so I could focus and the first three pieces with the young violin and cello students went well. After that, not so much. Michael thought it was fine. If mom was there, it would have driven her nuts. The next piece, the violins messed up the beginning. The next piece, there were also some problems but not horrible.


Now I am getting a bit nervous. Is this going to work? Can they hear little me across the room in the violin section who are driving the theme? My hands were getting tired and sweaty. "Selections from Victory at Sea" by Richard Rodgers. It was the piece I had hoped would be cut. Very brassy. We never played it well. Ironically, it was probably the best performed piece of the night.

It was time. I looked over at Michael and he gave me a thumbs up. Deep breath. The opening. Fine. "I Feel Pretty." Great. "Maria" featured a solo fantastic bass rhythm and I nailed it. Confidence. It was time, I turned the page while counting two measures rest. Here we go. I wiped my wet hand on my pants. I was ready.

The conductor took it a bit quicker than ever. Fine. I never slowed down. I never looked back but I did notice that the conductor was keeping up with me! I nailed it FOR THE FIRST TIME EVER. It was a lot of very fast notes all over the fingerboard. I began to feel the sweat at my temples then in my hair then beginning to drip on my black blouse. The next songs, piece of cake. Slow. The next two pieces? Easy. I began to breathe again.

The final piece of the night was a Strauss overture from "Die Fledermaus." It was lovely with well know tunes of waltzes and dances. It was a lovely way to end the concert.

All in all, there were problems during the concert but I was thrilled that I was not part of the problems. My solos and exposed parts went well.

I am taking the summer off from playing with the orchestra. Michael will have me home on Wednesday nights until September then we begin again.

Saturday, May 14, 2016

My Dance Card is Full

As I look at the my very busy calendar ahead, I think of that old phase from days gone by, "My dance card is full." No spare time. Booked. The frantic countdown to company coming on Monday plus an orchestra concert thrown in for fun begins this morning. So much to do. So little energy! I am worn down and tired.

First up? A trip to Safeway for wine and the final needs for company and the week ahead. We live in an area that attracts tourists on the weekend. If I don't get into town early, I won't get into town. So, very soon, I will throw on workout clothing and head off to the store.

Today, I hope to wash the kitchen cabinets and set the table for Monday night's dinner. I also need to dust the floors and vacuum the throw rugs. It will be a day of pulling the house together. By 5:00, I will haul my string bass into the concert hall for a concert tonight. This will be the final orchestra event until September. No more rehearsals or concerts for a few months. Time off.

Tomorrow, Michael offered to cut the grass. I will just have to blow and water. Early in the morning, I will be making a strawberry pie and the barbacoa. A day of cooking and final yard work.

Monday, my sister Lee and her husband Jeff will arrive for a couple of days after having nice lunch with our mom. I am so looking forward to spending some time with them without a holiday involved.

If I survive!!

Friday, May 13, 2016

Rehab Boy Dick's Funeral

It was a very sweet funeral service. Dick's five children gave funny and thoughtful speeches and two of his grandchildren spoke. As one of his son said, "Everyone assumes a great man is a president or an important person but my dad was a great man. He never said a bad word about anyone. He gave his love completely. He told us to always do our best and he meant it. He took care of a lot of people."

I was one of those people. As they spoke, I grew teary as this was the Dick I knew. As his "adopted daughter," he would call if I was not at rehab. He would check in if he had something to tell me. He would feed me along with a huge number of other people.

It was a rough funeral in one way - the realization of the finality of losing a dear, sweet friend - but in another, it was comforting to being able to say goodbye in a room filled with people who loved him as much as I did. We were all there: his Out-To-Lunch-Bunch buddies, family and friends.

I spent some time before, during and after the services talking with two of his grandchildren. These two kids called their grandfather over a month ago and invited him to lunch at his favorite place. They picked him up, they paid the bill and he was so touched that they wanted to spend time with him. I wanted them to know how deeply appreciative he was that they took the time to be with him. Later, their mom thanked me for spending so much time talking with her children. By the way, the youngest who is a junior in high school, wants to be a rocket scientist. And she will, that I have no doubt.

After the ceremony, I felt a hand on my arm. It was Allyson, the retired RN from the rehab program who I had not seen in a couple of years. We talked. And talked. Sherman did not come to the ceremony as his breathing had grately degraded so she was going to check in with him. Her husband and Michael were also talking. Turns out they know the same people and had a lot in common. Bottom line, we were the last people to leave!

I will miss him every Tuesday when Sherman and I sit in the lobby of the rehab gym. I will notice he is no longer with us when a pretty girl walks by and Dick's voice is not there to boom out, "Hello! My name's Dick! What's yours?" I will notice that his laugh does not ring out down the hallways nor that I am not greeted with a huge hug. My world is not as fun without him in it. I will deeply miss him.

Thursday, May 12, 2016

Rehab Boy Goodbye

We had a lovely day yesterday. We were together. Michael did get some exercise by walking into town where we met for lunch. As we walked in the door of the restaurant, we spotted our former dentist and her sister (who plays cello just in front of me in the orchestra). We had a quick chat before we were seated in the front window. Another member of the cello section arrived with a girlfriend. We had another quick chat. Then, across the street, we spotted a violinist from the orchestra who also plays with the Irish Fiddling group hopping into her car.

It's a small town.

Lunch was delicious. We barely made it on time to Michael's hair appointment at the barber shop up the street. It was packed. Really. On a Wednesday afternoon. What a business.

The dress rehearsal for Saturday's orchestra concert went much better than I expected. In the music world, that is bad. There is a superstition that a great dress rehearsal means it will be a bad concert. Sometimes, I think it takes a rough dress rehearsal to make everyone really focus during the concert so, I am still nervous about the concert.

I had too little sleep again last night and face a full day. Within an hour, I must leave for mom's house. She has an appointment with the eye doctor, which is going to include photos and other tests today. A longer appointment that usual. Later this afternoon, Michael and I will be dressed and ready for Rehab Boy Dick's funeral. It is going to be rough.

Wednesday, May 11, 2016


I am feeling overwhelmed. Too many doctor appointments and meetings plus company coming! My calendar is filled. Everyday from tomorrow through next Tuesday is booked. Over booked. Today is our last day of sanity. While I am at the hairdressers later this morning, Michael is going to walk the almost two miles to meet me then we are going to have lunch in town before his 2:00 appointment at the Barber Shop. Tonight is the dress rehearsal for Saturday's orchestra concert. It is going to be a long night. We are not ready. It is going to get ugly.

We got some good news last night: Michael's mom and her daughter Debbie are signing a lease on a house in Tennessee and it will be theirs as of June 1. Mary phoned and was so excited. The cross country move is really going to happen.

To get through the hectic days ahead, I am going to make a list of what has to happen that day. I don't want to miss something important like food shopping! Included on the list will be things like wiping down all the cabinets in the kitchen and the front door. It gets dusty. It is going to be one heck of a list! The goal will be to get through it all without getting sick. We are going to my university's board meeting and I need to remember to write on the list to arrive early to have a blood test while we are there. Saves me a trip into the city. Dr. K. wants me to test for the protein level that might be suppressed after years of immunosuppressant drugs. Oops, I just remembered that I have to buy a graduation card for Shelley's boyfriend who is walking next week. Put that on the list!

Tuesday, May 10, 2016


Mom and I walked and walked along the street in the heart of the Silicon Valley. It was going to be an estimated almost four hour wait for her Mini Cooper to be given a rather extensive service and oil change. The area was dotted with dealerships and little else. We headed out to explore a Walmart over a long block away. We were looking for a restaurant inside for some coffee. Oops! It was the first ever Walmart we have ever been into that had groceries only! It was huge!

We scurried back across the six lanes of traffic to a really nice coffee shop, sat for an hour before walking another three very long blocks to a McDonald's where we planned to have something to eat for lunch. While in the bathroom before we ordered, the phone rang. The car was ready two hour early! We began the long, long trek back to the dealership. I was having breathing problems as I had no oxygen with me. The sun was hot on our back and we both were wet from the exertion. It was the longest walk I have taken in a long time. I was not sore this morning and rather proud of myself!

Rehab today. Sherman told the class about Dick's death last week. I will post his funeral information today.

I got the results of the CT Scan taken for the appointment with the Lung Transplant Clinic. One thing worried me. It reported that nothing had changed since my last CT Scan. The reason for my concern is #2 below:

IMPRESSION: 1. Persistent lung parenchymal findings compatible with hypersensitivity pneumonitis. No new focal consolidation or effusions. 2. Extensive coronary calcifications. 

No one has ever mentioned that I have calcifications in my heart. I need to ask Dr. K. about it. Will this be a problem in the transplant process? Should I see a heart specialist? Extensive?!?

Monday, May 9, 2016

Sweetest Words: "Hi, Mom"

It was a lovely Mother's Day. Our son phoned. He had just walked in the door from the airport and was going to be home a whole week. We spoke more about the visit with the lung transplant clinic and I was able to answer some of his questions. I was also rather touched when he mentioned that when he talked to other people about the whole transplant process, they were amazed at the short amount of time my friends were the hospital post-transplant. What I loved was that he was talking to other people about it. Michael and I have found that when we bump into something scary or rather bad news, if we can talk about it, somehow it eases the fear.

He also understood that I am not looking forward to being so dependent and so sick before I will be eligible for transplants. I hate being dependent. That is the hardest part of this whole process for me.

Michael's mom got the good news yesterday that the house she and her daughter found to rent right around the corner from her granddaughter's house was now theirs. They passed the credit check. It is a small three bedroom with a tiny back yard but a wonderful kitchen! There is even a front porch! Mary will move into this house clear across the country around July 1st after Debbie begins her move on June 1st. It is happening. Everyone is thrilled.

My mom looked fantastic and the three of us had a lovely lunch at Nordstrom yesterday. We thought we were being so clever celebrating Mother's Day there and not at a packed restaurant with their special menus. After we were seated, the line began. Our secret was out! The place was packed with moms and families.

Today, mom's Mini Cooper needs a checkup. It is a long haul during rush hour through the Silicon Valley. Thankfully, there is a nice coffee shop within walking distance but the service is going to take few hours.

Sunday, May 8, 2016

Not A "Normal" Mother, Thank Goodness!

Happy Mother's Day! Mom and I were laughing recently about her inability to sew or knit. She never learned to drink coffee or tea. Cooking? Dad was the weekend cook of the interesting food. She was the good found-this-casserole-recipe-in-the-magazine cook. Good. Filling. Fine. Then, our conversation expanded to her lack of ability of the standard 1950s roles of moms. She was not even close to the norms.

What she did do was to let us ride our bikes into town at a very young age. She made sure we had good dental care, even though it was expensive and a challenge for them. She worked hard in the gardens and in the house. She always loved an organized, clean house. She always, always looked fantastic. Thin, sweet, put together. She never expected perfection of her children just that we all gave it our best try. One of us flunked chemistry (me) while another was horrible at math (Lee). We were not scolded for it, she understood. She always trusted us.

She loved that we all taught ourselves how to play the piano. She loved that all of us performed music at high levels. Her family honored music in their household so she was thrilled that her children picked up that thread from her childhood. She could only play the piano if she wrote down what each note was above the actual note. She only played slow pieces.

She always made our successes OUR successes.

What made her stand out from the groups of women in the 1950s Coffee Klatches filled with women who were unfulfilled? My mom loved her life. She adored my dad and he clearly adored her. Together, the house was filled with lots of music and laughter and interesting conversations. They taught me a lot by watching them raise us together as a team.

It made me want that kind of life and marriage.

She was not the normal mom of her day. I always thought she was exceptional. When people wished for a mom like The Beaver's, I knew that mine was so much more. I so wish other could have had her as their mom.

Happy Mother's Day, mom!

Saturday, May 7, 2016


Mom and I went to a fancy restaurant for lunch yesterday while the rain danced outside. We talked about the lung transplants and I think she was relieved that I was not going to have them for a few more years.

My whole body is tired and still recovering from not getting enough sleep. Today, it is raining and the gardens are already wet. No yard work for me today! Lisa, our new neighbors from across the cul du sac, is coming at 10:30 this morning to play the card game Shanghai with me. It is like Gin but with major twists. She is taking off with her husband this afternoon so we will play for a couple of hours.

Michael is planning to take me for a ride and an adventure later this afternoon. We have no idea where. It is just so nice to get out into the world together.

I am hoping to gather my strength and rest most of the weekend. The next couple of weeks are going to be crazy busy.

Friday, May 6, 2016

First Appointment at Lung Transplant Clinic

We made it to the appointments on time. First a CT Scan then the meeting with the head of pulmonology to discuss lung transplants. It was so interesting. I learned a bit. It was true that my numbers are still too good. My FVC is actually 47% and DLCO 11. He reviewed my pulmonary function test numbers and showed me the reason why I am feeling the downhill. I have taken a step down in both tests. In HP, rarely is it a fast slide. I am typical: downhill then lots of time of a plateau then a downhill. Rinse and repeat!

He told me that often doctors feel that with the addition of Cellcept or Azathioprine, they decide they can pull back or remove the patient from the prednisone. Big mistake! He said that if a HP person was quickly stepped down or removed from prednisone, they often go into a fast downhill slide.

I asked if I was a typical HP patient with my current numbers and damage to my lungs after having the disease since 2002. He said I was on the far side of the bell curve. That has always been my goal. When told I had limited time on this earth, my internal voice said, "Nope. There is a bell curve and I am going to be one of the few on the far side of that curve." I did it! He also confirmed that all my exercise contributed to my longer life.

We talked about the success of lung transplants. I already knew that cystic fibrosis patients have the longest survival rate but it was heartening to learn that HP patients are number two! It is probably because we do not have the fast slide downhill like the IPF patients. Interesting.

So, after reviewing everything, the plan is to have me complete the non-invasive testing. For example, kidney function, mammograms, etc. If we bump into a problem, it can be addressed before I am in crisis mode preparing for transplants. Smart. That testing should be completed within three months.

Now, the big news, he said that he would estimate that I probably won't have the numbers for qualify me for lung transplants for two to three years. Of course, my plan is to kick up the exercise and make that five to six years! We'll see if I can pull that off!

I wrote a brief history of my journey and summary of the meeting for family and friends yesterday. I thought I would add it to this post for those who are new and don't know my history:
In 2002, i was exposed to an antigen that caused an immune response and slowly turned my lungs into fibrotic tissue, now having difficulty clearing my blood and exchanging gasses. The disease is called Hypersensitivity Pneumonitis. It is the only lung disease you CANNOT get if you smoke. I was misdiagnosed and finally made it to XXX in 2004. By that time, they gave me little hope. I was too far gone. Since that first appointment, I have been fighting back. Besides the best doctor ever and prednisone, I worked out at Pulmonary Rehab twice a week plus another two days in a gym plus yoga plus massive yard work plus long walks along the ocean since 2005. I tried to exercise an hour a day, six days a week. I have been able to keep my numbers up, function in the world, build muscles and lose 100 pounds since 2006, supplemental oxygen is needed only at night and during my workouts. I have lived longer than expected by almost a decade. But, now things are changing.
Michael and I met with the Lung Transplant Clinic head this morning. After reviewing my current downturn in my pulmonary function numbers and a very scary looking CT Scan, they threw me out. I am still too well for transplants. That is good news. Only 50% of the people who have received lung transplants are alive after five years. It is a treatment, not a cure. They estimate that I have another two to three years before my lung function numbers will indicate that I either have transplants or I will die within a short period of time. That is when the transplants will happen. 

Today was a big day for us. We got our lives back again for a few more years. I'll keep pushing myself everyday and we will see if I can postpone transplants for many more years.

Thursday, May 5, 2016

Sad News

It is with such a heavy heart that I have to share that my rehab boy Dick died yesterday. His son phoned last night. He died at home surrounded by two of his sons. My heart just broke but I know his pain had ended. I had just seen him in rehab class three weeks ago. Awful. I had to break the news to Sherman. The son promised to phone again when the services are set. I will miss that very funny, naughty, thoughtful, incorrigible, sweet man. He was a joy.

We are up having coffee at 5AM and will be ready to hit the road by 7Am. We have a long drive into the city, again. We visited Dr. K. yesterday, we reviewed why I am moving forward with lung transplants and was given the information that I probably will not get them soon. I just don't have the numbers. I'm not sick enough.

I do have some changes to my activities of daily living - Michael helps me in the gardens and laundry and food shopping - but not something like needing supplemental oxygen 24/7. She did set up a test to see if I do need to begin using oxygen full time and also to check a protein. Apparently, since I have been on prednisone and azathioprine for so many years, it suppresses a protein, which allows me to get ill easier. She thinks that was why I have been so ill for such a long period of time the past two years. Dr. K. said that if those numbers are low, she can bring them up.

The orchestra rehearsal last night was brutal. There was a part in the "Selections of West Side Story" where I am featured. I love that except the conductor kept slowing down. The orchestra members kept complaining. Finally, they all said to me to keep the rhythm, ignore the conductor and they will follow me. OMG! I am going to do it during the dress rehearsal next Wednesday night and we will see if it works or falls apart. No piece is clean. No piece is ready to be performed. It is going to be interesting.

So, when I got home at 10PM, I was exhilarated and just could not settle down for sleep. With less then five hours of sleep, I hope to make it through the rough interviewing process at the transplant clinic, food shopping afterwards then home for a long nap.

Wednesday, May 4, 2016

Final Visit with Dr. K.

Michael and I are just hanging out together this morning before our appointment with Dr. K. this afternoon. It is nice to be in our jammies at 8AM! So unusual! We are going to run a couple of errands in town later this morning before finding lunch somewhere, which is going to be a light lunch as I am being weighed today and tomorrow!

Also, I need to pick the house up for the housekeepers coming tomorrow as we will be out the door by 7AM with not a minute to spare. Everything must be done and ready. I am so emotionally prepared for the appointment with the transplant clinic on Thursday.

One question for Dr. K. today: Since I have HP, which requires a genetic pre-disposition, can my new transplanted lungs also get HP? As she has handed me off to the transplant clinic, does that mean she won't be seeing me in the Chest Faculty Clinic anymore. If I have a problem with an infection, do I contact the transplant clinic? Thankfully, she is part of the transplant team so I will see her throughout the process. I also know she will support me behind the scenes.

At rehab class yesterday, I shared Dick's message with Sherman. He teared up. We talked together. Two friends. I made him laugh when I told him that I could maybe die on the table during the transplant and he, Sherman, would be the last of the three of us. At 91-years old!!

Tuesday, May 3, 2016

A Sad Goodbye

Suddenly, I remembered that Mother's Day is this Sunday. My sole focus had been on Thursday's transplant clinic appointment so I blew it. Mary phoned yesterday to talk about her move to Tennessee to live with Michael's sister Debbie. I think they found a house to rent and the move is on for late June. Mary was so excited. She is ready.

After our conversation, I realized that we had sent nothing for Mother's Day! We don't want to send something that she is going to have to pack. This morning, I am heading to Macy's to find some Sterling Silver earrings. She has short white hair and always wears earrings. What girl doesn't like jewelry? I need to find a card and get it in the mail today. Before rehab class.

I got a heartbreaking message on my cell phone from my rehab boy Dick yesterday. It felt like he was saying goodbye. His family had gathered last weekend, which he loved but said that he was failing fast. He also asked that I not phone him as they will be dealing with lots of agencies, which I am assuming is hospice. I will be sharing the message with Sherman when I see him today.

A rehearsal with the Irish Fiddlers group is this evening. We also have a birthday party gig in a pasture on Friday evening. I know I will be exhausted from Thursday's several hour long appointment so I don't think I will be playing it. But, I may change my mind.

Lots of emotional ups and downs. Life is moving in several directions right now.

Monday, May 2, 2016

A Good Stretch

It's a mom day today. No doctor appointments or anywhere we have to be. We'll see what fun we can get into.

Yesterday, I did the paperwork for the transplant clinic appointment on Thursday. Years ago, I created four documents and I keep them updated: list of medications, list of doctors, list of hospitalizations, list of my family history. It has saved me so much time and effort. Copies of all four documents are now attached to the paperwork for Thursday. Clean, neat, organized and correct information at my fingertips instead of trying to remember all the details.

There was also a problem yesterday. My torn tendons in my hip have been really painful lately. I stepped out of our new/old car last week and pulled something. I was in a pretty high level of pain yesterday before I remembered the three exercises the physical therapist taught to me many month ago. I crawled onto the rug, started slowly and went through the routine twice. After that, I laid one leg up the wall and flexed my foot. I stood up. No pain. No pain later. No pain this morning.

I will be going through the routine every morning for several days then every few days.

Sunday, May 1, 2016

Preparing for the Lung Transplant Clinic

After working three hours in the garden yesterday, I was done! But wait! There was more! I did get all the chores done in the house except the paperwork for the Transplant Clinic appointment on Thursday. I read through the packet and again reviewed that we will be seeing not only the head of pulmonology but a cardiologist, sociologist, surgeon and nutritionist.

I have been working on myself to be ready for this process for over eleven years. Seeing the cardiologist, I can refer him to my latest test for pulmonary hypertension, which always happens to people will long-term lung disease. It is like high blood pressure but in the lungs. The problem is that it causes a hardening to one side of the heart thus, the heart issues. Since I have been exercising six days a week since 2004, my heart is fine. The pressure is fine. Done.

Needing to lose 70 pounds to get between 25-30 BMI to even begin this process, I worked with my nutritionist over five years ago. I still see Dr. B. every couple of months just to keep me honest. I choose my food for the week, which always includes one recipe of a poultry, meat and seafood dish. Every week. I cook four servings and we eat the leftovers the next night. Last night, I grabbed three of my lists of meals for the week and the recipes for them to bring to the appointment as examples of my diet. I've got this. Done.

The surgeon is a little bit of a challenge. I must tell him that my father died due to an anesthesiologist and that my mom is nervous about me having surgery at the same facility. Other than that, I don't have problems with anesthesia or any other known problems. Done.

After the Dr. K. debacle, I spoke with a "life coach" and learned that I am handling all of this extremely well. I had done my work back in 2004 and 2005. We have adjusted to the disease. I am not suffering with depression, thankfully. I have emotional backup support of my husband and son and mother. I've got this. Done.

So, unless I am blindsided by something unexpected, I think I am going to fly through the morning. Fingers crossed.