Living Well with a Bad Diagnosis - Lung Disease

Saturday, April 30, 2016

Clean it Up

The house is quiet. It is the first morning in a week that the wind is not making the house creak. I really want to pick up a mess of twigs in the yards and do some work out there today. Everything is now so dry but we can't water until Monday as our area still has water rationing in place.

I am also staring at a pile of paperwork that needs to be filed and organized for taxes. The Lung Transplant Clinic people sent a packet of paperwork that needs to be completed, so I want to get that finished today.

Do you know how things bother you but you just don't address the problem? Well, it's my kitchen cabinets. I want to wash the front surfaces today. Something I have been putting off. Shall we look in the refrigerator? Well, those shelves need a good cleaning, eoo. As you can see, I will be cleaning and re-organizing today.

Friday, April 29, 2016

Slow Down Day

I made it through the day! It was rough and all I remember is falling into bed at 8:15 last night.

Rehab class was unusually full but Sherman was not there again. His daughter was still in the hospital post-shoulder surgery, so he was with her. The RN told me that Dick phoned to give them his bad news and that he was not going to return to rehab. It was rather strange to be there without either of my rehab boys. I worked out and was wet when I let. A good sign. After shopping for groceries, I was able to relax at home for a couple of hours before going next door for the Irish Fiddle group rehearsal. It was intense but short. I left at least an hour before everyone else. They understood.

Mom today! I have no clue what we are going do but I am sure it will be fun.

Our weekend should be all about working in the gardens and relaxing. Recharging our batteries. Preparing for a wild ride week ahead. The focus is, of course, the meeting on Thursday with the Lung Transplant Clinic. The paperwork arrived in the mail yesterday so I will be working on that all weekend.

Thursday, April 28, 2016

Dragging Already!

It was a quiet day, after I took a trip down to the Mini dealership in the heart of the Silicon Valley in the morning. The right side mirror glass fell off of mom's Mini Cooper while I as driving it on Monday. Michael drove down to pick up the part on Tuesday, it needed to be ordered so I offered to make the trip.

It was raining but it is such a beautiful drive along the water shed and fancy homes, the radio was on and not a lot of traffic slowed me down. It took about 45-minutes to get there, I nabbed the mirror then headed home. For dinner, I made Asian Meatballs in the crock pot after I got home.

But, the orchestra rehearsal was a challenge. There are only two more rehearsals and it sounded messy. We are not ready. I am praying that the threat of a live audience will shake everyone up and people will practice.

This morning, I am running to Safeway before rehab class then to Trader Joe's after class. We are out of food. Funny how quickly that happens! I have a rehearsal tonight with the Irish Fiddling group. A late rehearsal. I did warn them last night that I only have so much energy and that I could only be there an hour tonight. It will be past my bedtime and I will be dragging from last night's late rehearsal. I don't want to get sick.

Wednesday, April 27, 2016

The Beginning

The appointment is made. I will be meeting with the head of pulmonology at the lung transplant clinic, after a very quick CT Scan, next Thursday, May 5 close to dawn. All my medical files will be reviewed, he will decide if I am a good candidate to begin the pre-testing process for new lungs. The day before, I have an appointment with Dr. K. late in the afternoon. Michael will be with me at both appointments. It's funny, we will probably get home from seeing Dr. K. around 6PM and will leave the house at 6:45AM the next morning for the same drive back to the city for the transplant meeting. I may not sleep well that night.

The worst outcome would be that something is found during all the testing that preclude me from getting transplants. That is the worry. I must realize that it is out of my hands at this point. It is what it is. I just hope that it all falls into place.

Rehab boy Dick was not at rehab but neither was Sherman! He phoned later to chat and told me that his daughter had surgery on her shoulder, so he was with her all day. We talked about Dick and both agreed to phone him every few days. Sherman shared that after Dick told him he had 1 month to 1 year to live, he remarked that just talking with Sherman made him feel better then he began to cry. My heart just broke when hearing this story.

Tuesday, April 26, 2016


Last week was crazy busy and I felt like I didn't get enough sleep. Sometimes, I would wake up around 1AM and watch TV for a couple of hours before drifting back to sleep. But after last night, I finally feel like I have caught up with my sleep and feel rested for the first time in well over a week. There is nothing on the list of things to do except rehab class today. I don't expect to see Dick back to class but maybe he will surprise us.

William contacted us from Mexico. Apparently, he messaged Michael on Friday night while I was playing with the Irish Fiddling group and he missed it. He had planned time off but that didn't happen though he did say he has time for a visit in June or August. I am not holding my breath as another big job may come up and those are hard to turn down. I hope to have time with him before the transplant happens in a few months. There is so much I need for him to do for his dad and grandmother while I am in the hospital.

So, a rather quiet day today.

Monday, April 25, 2016

Blown Away

Three hours later, the gardens were in great shape. I hand trimmed all the plants in our little hidden garden outside our bedroom. It was a lot of work and now looks clean and tidy. I was happy. But, then it changed. Within minutes of putting all the equipment away, the winds kicked up. Gusts of mid-40MPH hit the coastside. Throughout the afternoon and into the night, gusts were so strong the house moaned at times. Michael picked up all the fallen small dead branches from the birch trees in front. There were a lot of them! The winds cleaned them out, thank you very much! That was my Sunday!

It is still a bit windy this morning and it is cold!

Mom has an early dentist appointment here on the coast to make sure she is healing well from last week's tooth extraction. She says she is fine. I hope so! It will be a day of driving over the pass four times so I hope there are no traffic issues today!

Several nights ago, we DVRed "West Side Story" from TCM and watched it last night, though one of us was able to sing along as well as reciting some of the dialogue. It was an obsession in my youth. My dad followed the Broadway theatre each year so I knew all the songs before the movie was released when I was seven-years old. I had not seen it in years but last night, I really saw it through different eyes. What a movie. So relevant still today.

I have not heard from the lung transplant clinic. Last time I was there five years ago, they phoned and we had an appointment within days. I have a feeling they are a lot busier these days and it may take longer to get an appointment. Hopefully, I will hear from them soon. My appointment with Dr. K. is next week so she will kick some butt, if needed. Love that about her.

Sunday, April 24, 2016


The weather has turned as it is cool and cloudy here. There is a huge fundraiser for the Senior Center at the airport all day today. Dream Machines. Airplanes were flying in all day yesterday and the parade of cars started very early this morning. Michael usually sits at the entrance to our complex with a mug of coffee and watches the cars go by on their way to the airport.

Traffic to the show is going to be crazy then again when they all head home later this afternoon. I'm not leaving the house. The grass needs to be cut, the pots need to be watered and that pesky fern needs to be removed from our bedroom garden. My work is waiting for me.

I am facing it all today because yesterday, I took the day off. My normal gardening day found me dressed up and in a lovely restaurant just a minute from Stanford University. On my way home, I was thinking that it was remarkable to be able to meet a kid who arrived at the school where I got sick when he was in fourth grade and here he was, an adult, making huge strides forward in his life and into the world. It was a gift to be able to spend time with him. He is rarely on this coast and I was honored that he carved some time out to spend with me. We got caught up: new lungs, research projects, former student updates, relatives, running and marathons, ideas, thoughts, questions. I did remember to ask about his 8th grade recital project. He had worked with a composer, wrote and performed a composition. It brought a smile to his face. He then spoke about maybe learning a new instrument. I have a feeling his work with music is not only in the past and, one day, he will have the time to refocus on that joyous part of his life. The couple of hours with him made me think and smile all the way home.

When I am inspired, I tend to have to do something, like cooking or playing the piano or singing. So, after I got home, I cooked. By the time Michael arrived home in the afternoon, he was greeted by a lovely aroma and the kitchen was stacked with pans waiting to be washed.

After working in the garden this morning, I am already dreaming of a shower and preparing for tomorrow.

Saturday, April 23, 2016

Horrible News

While at mom's yesterday morning, my cell phone chimed for attention. Rehab boy, Dick was calling. I quickly answered. He sounded weak and warned that he had horrible news. He had just seen the doctor and was told he had a day to a year to live before a cancerous growth on the outside of his lungs would kill him. He mentioned that he was enjoying a piece of cherry pie and a cup of coffee. He is a diabetic but he said, "What the hell!" Still a lot of humor but so very sad. We have been dear friends since 2005. He and Sherman would meet with me an hour before rehab class every week. We kept track of each other's issues, exchanged information and recipes and lots of personal stuff people share with just their best friends. They were the reason I would never miss a class. They were waiting for me. We had fun. We laughed a lot. We laughed as Dick never miss an opportunity to engage in conversation with a pretty girl. I would call him incorrigible. Sherman would just laugh. I can't imagine this world, my world, without him.

After spending the day with mom, I prepared for the little concert last night. My first performance with the Irish Fiddling group in the entrance to our little organic market went surprisingly well. I didn't expect the acoustic to be so good, we could hear each other but Michael reported back to us that it could be heard throughout the store, except right near the frozen foods. Amazing. He watched the people in the check-out line and all the sudden, people would begin to tap their feet or bounce about to the music. Did I mention that next to us was a gentlemen serving wine tastings? A customer would enter, stressed after work and just wanting to pick something up for dinner, being greeted with a small taste of wine and fun music. People hung out. Children danced. Moms and Dads were less stressed.

I must say that by the time the two hours were up, I was done. Standing for two hours, in heals so I would not play sharp, and sight-reading several pieces of music plus having to follow the guitarist when I didn't have the music for a song, was exhausting. My brain was as tired as my body!

Today is a really special day for me. A former student of mine is meeting me for brunch. It has been too long since we have seen each other. He is fascinating and is living a life that I will only know through him. I will never be in a PhD program. I will never study economics. I have been wondering something and hope I remember to ask him what he presented for his 8th grade recital project? As I follow the alums of the school where I got sick, I am not surprised that so many of these students are successful and tops of their fields. But, what I have noticed is their life's work is often related to what they presented for their 8th grade recital project. It is at the end of their 8th grade, they find a very high level mentor (or the school and help find one) and the child presents their project. So, what was this student's project? I will ask!

Friday, April 22, 2016

PFT Results

I have been having pulmonary function tests at my university medical center lab since 2004. Through the years, relationships formed. At the lab, I have gone through marriages, divorces, birthing of children and departures. The receptionist has become such a good friend that we Facebook each other. It was exciting to learn that she is four months pregnant with her second child. She had told me over a year ago that, if God willing, she so wanted another child. She is forty-two years old. She is also involved in setting up specific tests for prospective lung transplant patients, so we will be seeing a lot of each other!

My current favorite lab person has been working there for only three years. She and her husband have an almost 3-year old and don't own a TV. They play a lot of live music, different genres of recorded music are also featured and, of course, they dance. I try to share with her what I learned about children and music education, what to expose him to and at what age to begin lessons on an instrument. I also get my best numbers when she is working with me.

I was expecting my numbers to have fallen since being so ill but, when compared to previous tests, they were similar. The only change that I noticed was my hemoglobin level was 14 and now it is 16. It shows that I am needing more help with the exchanging of gasses.

It is important for those of us with an interstitial lung disease to keep an eye on two numbers: forced vital capacity and DLCO adjusted for the hemoglobin. Just by watching the numbers during the tests, I can tell how well or how poorly I am doing.

Here are my latest numbers and you might want to get out your report to compare. My age, weight, height and ethnicity are used to predict what a similarly healthy person would test, what I actually did was observed and what was my percentage of predicted:

Predicted          Observed          % Predicted
Forced Vital Capacity           3.22                    1.52                    44%

Diffusing Capacity (adj)     25.06                  11.03                   44%

So there. Not great but not too horrible. At one time, my diffusing capacity (DLCO) was 7.7 observed. That was horrible. Remember that 100 is normal and under 30 is considered severe. 

Thursday, April 21, 2016

A Wrap Up

My rehab boy Dick phoned yesterday. The news was not good. After an X-ray, the cancer growing on the outside of his lung had not shown any change after the long run of radiation. The doctors did not feel he was strong enough for chemotherapy nor surgery to remove the growth. The news broke my heart. He sounded so defeated and weak. I sent a card to him yesterday and will keep in close touch with him.

By noon yesterday, my to-do list was done, groceries were put away and I even was able to take a short nap. The orchestra rehearsal was fun and I got home late and tired. Today, the pulmonary function test is the focus. But, before I go into the city later this morning, I need to be out of here by 9AM for the housekeepers. It is going to be a race: shower, dress, final pick up. While out in town, I need to do a bank run, visit the gas station, enjoy a cup of coffee at Peet's then check-in back at the house to make sure all the lights are off before heading north into the city for the PFTs. A long day and I am beginning to drag from the past few days.

My concern is tomorrow. I will be spending most of the day with mom then performing with the Irish Fiddling group from 5-7PM. Two hours. I feel like I am heading into it worn down and I don't want to get sick.

What I am really looking forward to is Saturday morning when I am meeting a former student for brunch near Stanford. We were not able to connect over the Christmas holiday and I just want to get caught up with him. He is so interesting and tales of his studies and work are fascinating.

Sunday? Nothing. Simply nothing. A day to catch my breath.

Wednesday, April 20, 2016

Fiddling About

It was a fun rehearsal of the Irish Fiddling group last night all in preparation of my first public appearance with them on Friday evening. We are playing in the area usually filled with four tables and chairs for people to eat in the local Organic Market - kind of like Whole Foods. From 5-7PM, we will be playing as people come through the doors right in front of us. Leslie was telling me that it is amazing to watch them as they are in a hurry after work and suddenly, they change when they hear the music. Smile. Relax. Pause, before they buy what they need and head home. Should be fun.

Today is going to be a wild day. I didn't sleep well last night and I have a long to-do list. By 8AM, I want to be out the door heading over the pass to food shop then back home to get my toe nails done. We found I didn't have some of the music last night so I will be making copies then bringing the originals with me to orchestra rehearsal tonight to give back to their owners. In the afternoon somewhere, I am going to need a nap to get through the orchestra rehearsal tonight.

Per Dr. K's suggestion, I called the pulmonary function lab to see if they could move up my appointment. Yes! Thursday at 1PM. I am expecting to hear from the transplant clinic today or tomorrow to make an appointment to see them. It won't be as scary this time as it was five years ago.

Other news from rehab: Do you remember Mitch? He was the tall, young sheriff who had a horrible liver disease. He had high pressure in the arteries in his liver, which also kicked in an interstitial lung disease. It was so sad to watch him struggle, sometimes bringing his young boys to rehab if they didn't have school. My university hospital turned down three of his potential donors and finally, after almost two years, he is having the liver transplant on Monday. He has been told that after six months, they are expecting his lung disease to abate. Wouldn't that be marvelous?

Tuesday, April 19, 2016

First Step to Lungs

Living in the "Ring of Fire," the recent earthquakes in Ecuador and Japan are making us nervous. We live just a couple of miles west of the San Andreas Fault, the one that runs right down the middle of San Francisco. Earthquake insurance is horribly expensive with a minimum of a 50,000 deductible. Very few people have it. When I was in college many years ago, the geography teacher explained that, eventually, the land west of the fault would break away and the currents would very slowly move it up to Alaska. It may take millions of years but we always have joked we have potential Alaskan property! The photos and news reports coming out of both areas show such heart-stopping devastation. Those who survived, their lives will never be the same. So very sad. 

All my driving over the pass went well yesterday. Mom had a new crown installed but had a tooth pulled under another crown due to massive decay from dry mouth. She is obsessed with her teeth and just learned a few years ago that she had dry mouth, which can cause bad breath and decay. Recently, there are products on the market that have helped a lot. 

I got an email from Dr. K. yesterday that she had sent a referral to the Lung Transplant Clinic. I expect to hear from them today or tomorrow to schedule an appointment. It would not surprise me if they wanted to see us this week or early next week. The process begins.

Cooler today but still lovely. Michael removed my Angel's Trumpet tree yesterday, which was growing too big for its space. I was also a bit nervous about it being poisonous. It was beautiful but I am happy to see it gone. I now need to remove a fern and Michael is going to move a huge jade pot into the space for interest. 

Cute story: Natalie's birthday was this past weekend so we chatted a bit. Her 5-year old son Oliver was telling a story about this uncle having hurt his head and she said, "Ollie, what are you talking about? Andy (Natalie's brother) is fine" and he replied, "No! Michael!" He remembered Michael's convulsions almost two years ago. Funny what kids absorb. He is convinced that Michael and I are relatives and part of their family. I so love that. 

Monday, April 18, 2016


It's going to be hot today and I am spending so much of the day in a car! First up this morning: my car to mom's over the pass where it is going to be hotter. We will jump into her car and drive back over the pass to the dentist for her new crown. But first, we will have a light lunch as her appointment isn't until noon. After her appointment, we will drive back over the pass to her home, I will jump into my car and drive home over the pass for the final time today. Four times over a nasty pass on a hot day insures lots of traffic.

Michael, on the other hand, has a dentist appointment an hour earlier than mom so we will see him as he leaves. He will be home for a while before meeting a friend over the pass and won't be home for dinner.

It was gorgeous here yesterday, we went into town for lunch, I washed and ironed the sheets, had a great shower, tried to watch the Giants game (awful), had leftovers for dinner and I was out like a light at 8PM. A nice Sunday around the house.

British Don flew to Hawaii yesterday. It seems everyone we know is either in Hawaii or was just in Hawaii or is going to Hawaii. Sure wish I could fly! Apparently, William posted that he, too, was in Hawaii as a last minute emergency job came up for a concert last night. They connected, he invited Don to the concert but I don't know if he went. I asked for a selfie of the two of them. We had no clue he was even off the Mainland.

Sunday, April 17, 2016

Finding my Zen Place

Working in the garden yesterday was just good for my soul. We had finished the majority of the work on Wednesday so I was able to focus on the hand trimming. My Zen place. My focus is the plant. No worries, no external thoughts, nothing but focusing on the beauty of the plant I am shaping. Calming. Quiet time. Two hours later, the back yard was trimmed and the pots were watered and the small weeds in the pavers were taken care of. Around 3:00, Michael phoned before he tried to get home from over the pass. I looked it up and there was a huge accident on our road. No one was getting into or out of town. Plan B: our favorite drive through the redwood then down to the coast, which takes double the time but at least he could get home. Well, Plan B fail! It was totally closed due to a huge accident of many cars and serious injuries were involved. Plan C: the route we drove Friday evening. It looked clear. He drove from the north, down the coast, past the always packed Surfers Beach and made it home in no time. How? Tourists? Traffic? Turns out that even though the weather was fantastic, The Golden State Warriors had just finished playing the first round of playoff games and everyone was home. No traffic. No tourists. No people coming from the other two routes so the coast was clear!

Michael cooked the rib eye steak to perfection, we had mushrooms and cole slaw and a lovely dinner outside on the side patio. It was warm but we were able to catch the gentle breeze. Every window of the house was opened and, after dinner, we watched the Giants game until bedtime. They won.

We are not going to push our luck this morning. Michael needs me to shuttle him over the pass this morning. Coffee, breakfast and workout clothing. Forget makeup. We are out of here early! I want to get back before the tourist come over, which usually begins about 10AM. Then, the bed linens will be washed and ironed then I will take a nice shower. By the time he gets home just an hour after I do, I should be almost be finished. Today, we are going to dig out a large Fortnight Lily, divide it into fourths, give half to Ron next door and replant it near the mailbox. I also need Michael to remove some ornamental grasses that have gotten too big. An axe will be needed to get them cleared so the other plant can find a new home. Just another day in paradise!

Saturday, April 16, 2016

Out for a Ride

We took the new/old car out last night. The headlights were amazing. Remarkable. We caught the sun just going down while we drove north along the ocean. We are not out at night very often and I loved seeing all the lights of the Bay Area once we got over the northern pass.

We passed the spot where the Spanish explorers finely found the lost inner harbor (the bay) written in the notes of a ship of sailors who died of scurvy 100 years earlier. Spain sent a party of explorers up the coast from Mexico to search for this harbor and, just south of San Francisco, they camped then sent out a hunting party to find meat. They climbed over the mountain and BOOM. Water. Lots of water. The entire camp headed east to the water's edge, found that they couldn't cross to the north as it, too, was not connected to land though they could see the camp at Drake's Bay in current Marin County. So, they went south to the end of the bay (currently San Jose) then up almost to what is now Sacramento where they could finally cross to the north on land. The bay was discovered. It was a safe harbor from the storms. Apparently, the famous fog hid the entrance through the Golden Gate for 100 years.

During the ride, we talked and listened to a Chris Isaak CD and just marveled at the new/old car. At one point, I turned to Michael and asked if he just wanted to continue driving to LA instead of going home? It felt like we could have driven all night. It was nice.

It is absolutely beautiful here this morning. A real estate agent's dream day. Blue sky. No wind. Warm. It is also a magnet for tourists. My goal is to clean up the garden and do some hand trimming. We have a gorgeous rib eye steak to BBQ for dinner. I like the little strip at the edge and the bone, while Michael enjoys the rest. We are going to have some sautéed mushrooms with it and maybe cole slaw. Simple.

Friday, April 15, 2016

Into the Weekend

I made it through the day after little sleep, fairly intact. Not quite zombie-like but close! A strong black iced tea helped me get through the rehab class. Sherman and I talked about Dick, he was as shocked as I was at his appearance and he remarked there had been a remarkable change in just a week. It appeared that he had given up. It was a good workout for me, I added a lot to my routine and was wet and tired when I climbing into the car afterward. It felt great.

After cooking dinner and going to bed early, I slept eleven hours. Was it the exercise or was I exhausted from not sleeping well the night before? I don't know but I enjoyed such a deep sleep.

Mom has an appointment this morning for a shot in her eye for macular degeneration, we will have lunch together then I am home for the weekend. I plan to work in the gardens on Saturday and read in the gardens on Sunday! If we are up to it, we might take a drive in the new/old car after sunset this evening.

This morning, I am sending an email to Dr. K. to tell her about my decision to go forward with the transplants and that Michael and I will want to discuss it all with her at my next appointment. She is going to be very happy about this decision.

Thursday, April 14, 2016

Help! Send Coffee!

I am whipped. It was such an intense orchestra rehearsal that I couldn't get to sleep last night. I watched the clock: 10PM, 11PM, Midnight. Finally, I moved to the living room for a change of venue and drifted off before being awakened at 6AM by the TV far away in our bedroom. Not a good way to be awakened. Coffee. Needing lots of coffee this morning.

Yesterday, I drove over the pass to buy the groceries then met Michael for lunch at home. We worked in the gardens together in anticipation of rain during the evening. No rain. Missed us. There might be an errant drizzle this morning but then the weather is to turn very warm for the weekend, which means tourists. That means that I will be staying home!

When I was newly diagnosed, we used to take long car rides early Sunday mornings or late Friday nights. We would drive a loop of many miles, stop for coffee about the halfway point and enjoyed the top down (with the convertibles) with the heaters cranked up and music playing softly. It gave me such strength and I would return home so relaxed and ready to deal with my illness again. Michael wants to see how the new/old car drives when it is dark so we are planning a nighttime drive up the coast, across a pass, then south and home via a small mountain road. The sunroof will be opened to the stars, a CD will be playing softly and we will be just drinking up the experience together.

It is back to rehab for me today. I hope to add a couple more days at the other rehab next week. It would be nice to get back to my full routine and feeling strong and fit again. I did gain some of the weight back from the illness then the colonoscopy and I am still three pounds light but I kind of like it here.

My goal today is to arrive home tired from working out so hard at rehab. I am going to push myself to see what I can do.

Wednesday, April 13, 2016

First Rehab Class

Back to pulmonary rehab class. The final step back into life after the horrible few months of being so ill. It was fantastic. First, Sherman. He was there waiting. I thought he looked great but he was complaining that he was not breathing well. While getting caught up, suddenly Dick walked through the door. It was all I could do to make sure there was no look of shock on my face. He looked horrible. Gray. Defeated. He has pain in his chest on the high right side and, because of the radiation, he was not being given any relief for the pain. It hurt every time he took a breath. He had more than just a little stubble and his hair was longer. He told us that he was not shaving or cutting his hair until he had some help with the pain.

Dick was always the most positive man in the face of a problem. It was so very sad to see that he had hit the wall. It felt like he had given up. After giving him a gentle hug, I told him that I was so sorry he was going through this.

Then, Richard arrived. He was my former State Department buddy, who I haven't seen forever! We hugged! As others came through the door, I was greeted like a warrior arriving home. It felt great to be there.

I worked out then I would talked. Worked out and talked. One lady was on the new anti-fibrotic drug we had talked about before I left and wanted to tell me about the side effects. My buddy, Gene had been to Hawaii and back and was heading to Ireland. While on the free weights, I began a conversation with a new man who had joined the class while I was gone. Bren. He was wearing a shirt with the Queen Elizabeth II logo. I asked if he had been on that ship. He replied that he was on the maiden voyage. I learned that he loved the rehab class and felt that it had made a positive difference to his health. He had COPD but for years was the man who was hired by cruise lines to dance with the ladies and to teach dance lessons. He was in good shape. After he retired, his COPD blossomed. It had been there but being so physical kept it at Level 1 for a few years. I love that, besides the two days of rehab class, he was teaching two dance classes a week. I didn't have to encourage him to keep moving and to exercise. He was doing just fine. A very kind, nice man.

It felt great to be back. I felt greatly loved and missed. I cut back my routine just a bit, which surprised me. I was able to do more than expected. Perspiration dripped down my face. Marvelous. Looking forward to doing it all again on Thursday!

Tuesday, April 12, 2016

The Plan

Mom and I had a great lunch together at Nordstrom yesterday and never stopped talking. We included several other women in our conversation. It is so wonderful when women connect with each other especially since one of them had her mom with her, too! She and my mom were the same age! These three other women were fun and smart and informative and could have been our best friends.

While we were in line to order, one woman heard me tell mom that I was going to make the baklava when I got home. She mentioned that she was Greek and also made baklava. Mom told her that I make the best baklava. She told mom that she makes the best then we all started to laugh. Later, she told me the secrets to hers and I shared the big secret of mine. I have a feeling hers was the best!

As we had to stare at all the bakery goodies, another lady shared that she was a diabetic and was struggling with a chocolate cake in her freezer. Her mistake was taking only a taste. Well, there was just a small piece left.  I told her that I was meant to speak with her as I was struggling with an entire box of shortbread cookies (my very favorite) Lisa gave us when they were here on Saturday. I could eat the whole box. I would eat the whole box, one by one, if I cracked the seal. It is now set aside, with seal intake, to take to the orchestra rehearsal on Wednesday. Get it out of my house and sight!

But, the most important conversation during lunch was with mom about my decision to move forward with the lung transplants. I explained that the past illnesses and need for the colonoscopy were wake-up calls for me. I am not getting any younger. If something major happens with my health like a heart issue or liver or any cancer, I would not qualify for lung transplants. A few years ago, one had to be close to death to qualify. Times have changed and I think doctors now realize that the recovery and survival rates improve if the patient is healthier going into the process. I can now even get two lungs, a better long-term prognosis.

Mom asked about how it all worked. I walked her through the entire process. She was so relieved when I shared that the two men in my rehab class who recently had transplants were only in the hospital eleven days. She also was so happy to hear that they pull the medicines back and get the new lung recipient up and out of bed after 24 hours. She had visions me in a bed in ICU for weeks. Nope. The staff has you walking the hallways. The more you walk, the fast you are released. She doesn't like the whole idea of it and finds it scary. I get it. If it were my son, I would feel the same way. What she doesn't know is that Dr. K. will insure I have the best of care, the best of lungs, the best of surgeons, the best of care, which will help increase my odds that it will all go well.

So, when it all begins, I will try to give tons of details until the actual transplant. It may take a day for William to get home from wherever he may be, but he will be taking over my blog to give you information and updates until I can get home.

That's the plan.

Monday, April 11, 2016


I was able to keep moving yesterday. Though I never left the house, I got a lot done including the laundry, the linens, ran the dishwasher, read the new Vanity Fair and noticed a beautiful hydrangea was beginning to bloom for the first time in two years. It was confused with the hot weather months before last year's blooming period. I am hoping its fellow hydrangeas get the hint and join in. Two look like they are thinking about blooming but the third one, I don't know. Stubborn.

It was a sports fans Sunday as we watched the SF Giants game, the final round of the Master's Golf Tournament and the Golden State Warriors Game. All ended well!

We were so taken care of last week during the problems with the smog for our new/old car that we are planning a treat for them. Today, after spending the day with mom, I am going to make a batch of my super delicious baklava. It is great because it is not as sticky sweet as other baklava. Tuesday morning, Michael is going to buy a box of coffee from Peet's and I am going to bring the baklava and we will drop them off in the morning for the entire crew. The owner of the place and Michael became friends when he was working and they have remain friends. A really nice man and a really nice group of employees.

We are beginning to plan our day together on Wednesday. Buying groceries is on the list for sure. It is going to be in the high 70s this coming weekend so we are thinking of hauling out the Weber BBQ and splitting a small rib eye steak between us. A rare treat.

Sunday, April 10, 2016

Fun Night

A success! Mike and Lisa arrived at 5 and left for the long walk home across the cut de sac around 11PM. All the food was great, thanks in part to the many Pioneer Woman's recipes and they loved my Barbacoa. The house looked great with the new table runner and napkins in festive Mexican motifs I bought at World Market. There were even matching flower arrangements. I went a little crazy. Michael set his Pandora to play songs from Chicago Radio (the band Chicago), which also featured groups like Journey, Eagles and BeeGees.

After dinner, the men chatted while I taught Lisa how to play the card game Shang Hai. It is a game with considerable whining and the need for good card sense. Lisa had great card sense, learned the whining from me and joined right in! We had a ball!

Since I hate waking up to a messy house, Michael cleared the table then dried all the hand washables and even put them away. By midnight, we were in bed. When we woke up this morning, there was no evidence that we had company, except for the beautiful flowers. And the leftovers in the refrigerator.

I am so grateful that I was even able to pull this event off. Two weeks ago? Impossible. I had enough energy to do all the work yesterday. Yes, a nap later today sounds fantastic right now but I did it. Recovered.

Saturday, April 9, 2016

Dinner Company

Mom and I had a quiet day together, I set the table for company dinner tonight, cooked the Barbacoa for over three hours and slept another eleven hours. Guess I really needed it! This morning, I feel like a race horse being held at the gate waiting for the start. After a very quick run into town for flowers and a baguette, I am going to make as much of tonight's menu ahead as possible before a nice shower.

Michael arrived home before the Barbacoa had finished cooking and he moaned as the delicious aroma hit his nose. "We must test it," he declared. Out it came, two forks tried to shredded the browned beef chuck hunks. Nope. Not yet. An hour later, we tried again. Nope. Another fifteen minutes, he made a pronouncement: IT WAS DONE. I wish I had a photo of him carefully shredding the meat deep in a very hot large pot. We then mixed in all the juices and both of us used one of the forks for a taste test. It was absolutely delicious. A success. Here is the recipe if you want to give it a try: HERE

Just looking over my list of things to do and I am ready to get going. So much to do today. So much fun. I have a feeling I will be sleeping another eleven hours tonight!

Friday, April 8, 2016

Zooming By

I slept 11 hours last night so I am feeling recovered from my wild Wednesday. Yesterday was intense until noon then I was able to cook and relax. Michael's breakfast deviled eggs and leftovers of a simple shrimp salad for dinner are in the refrigerator.

Today should be a nice, easy day. The first one in awhile! Mom and I are going to be together then I am going to braise the Barbacoa for four hours so it can sit overnight for our company dinner tomorrow evening. The aroma in the house will be divine!

It has been a long time since we have had people here. I love to cook and to entertain but I get so nervous right before people arrive. Is there enough food? Did I forget something? Driving myself nuts! Lisa and Mike are really nice people and I am sure it will all be just fine.

It must be my age as I turned to Michael and said, "I can't believe it is a Friday again." Weeks seem to just zoom by. When I look back, grade school was only eight short years but felt like forever. Does time move at a different rate of speed as we age? It sure feels like that is true. I try to stop to appreciate a moment of everyday. I am so grateful to still be alive and active and currently feeling well.

Thursday, April 7, 2016

Pushing to the Limit

I slept so hard last night that I am stumbling around this morning. It's going to take some time to wake up! What a day yesterday!

After I showered, dressed and was out the door with Michael to pick up our new/old car after it finally got a smog report then we split up. I drove back home in time to iron the linens for dinner with our new neighbors, ran a load in the dishwasher, picked up the house for the housekeepers before driving deep into the city for the doctor appointment.

The Weight Management doctor had lost a lot of weight!  She looked fantastic! We talked. We reviewed my medicines and vitamins. She warned me that if I did have lung transplants this year, I would probably initially gain some weight due to the medications but it would settle in as the dosages decreased. My job would be to focus on healing. Good words of wisdom. It has been five years since I lost over 70 pounds. She told me that if a person can get through the first week then month then 6 months then year of changing their habits, the weight loss will usually be permanent. It is then a part of life. But, even after five years, some people actually put all the weight back on and that I have to remember how I felt physically with all that weight on me. She also wrote on my report that I was not to lose any more weight. That will make Dr. K. happy!

It was 85 degrees as I drove back to the coastside and I made it back just fine until...I hit Surfer's Beach just miles north of us. Miles of cars all stopped. It took over 25-minutes to drive four miles. Brutal after a long day, a long drive and a long night ahead of me.

Orchestra rehearsal was in a small area with no air conditioning. I was dripping all night. Finally, it was over and I dragged myself to bed. I don't remember anything else. I passed out from exhaustion. I did too much. I am going to pay for it today and probably tomorrow.

We are leaving the house together in an hour to get the car registered then I will buy all the groceries for the week and the special neighbor dinner. A lot of groceries. A lot to haul in and put away. It is the only thing I HAVE to do today other than make dinner. I should cut the lawn but I think I should take a nap instead!

Wednesday, April 6, 2016

Change of Plans

We had plans yesterday: Smog then AAA to register the new/old car then I was going to return to pulmonary rehab. I arrived to our smog place (Michael is friends with the owner), they had a beautiful, clean lobby with a Keurig machine and lots of magazines. It also had cameras throughout the work area and I was able to keep an eye on the car. Something was wrong. They finally came in to let me know that the computer on board would not read the data and they couldn't get the smog done. They were going to run the car to a friend at the dealership to find out why. That would take some time.

I phoned Michael, who was five minutes away but in the middle of something he couldn't just stop. So, they babysat me for a while. He arrived and with that, all of our plans for the day were thrown out the window!

We hit Home Depot first, bought a new garage door clicker then drove around the corner to Pep Boys to buy sun screens for the new/old car then headed north on the freeway. Lunch time! We met British Don at the deli for lunch. While there, around 10 other people came by to talk with Michael including the local cops. They teased each other as they often see each other at this deli. It was fun for me to watch all these interactions.

After lunch, we drove back to Peet's near the smog place to buy fresh coffee beans for this morning where Michael was greeted by everyone. This guy gets around! When we checked in on the car, they had not taken it to the dealership so we headed home. We were home by 2:00, sat in the backyard and enjoyed the beautiful weather. It feels like LA this morning. It is warm with that Santa Ana warm breeze. It is expected to be 80 degrees here today. Tomorrow, it will drop into the 60s and rain should arrive on Friday and Saturday. Knowing all this, we tried to really appreciate the afternoon outside.

We did get a phone call that the car was ready. They had to re-set the control panel at the dealership, Michael's friend was able to run the smog test, we are going to pick it up first thing this morning then I am coming back home for a few hours. At noon, I will head deep into the city for my doctor's appointment. After dinner tonight, I have an orchestra rehearsal. It is going to be a long, busy, hot day. Or, all this is the plan but as we learned yesterday, stuff happens!

Tuesday, April 5, 2016

Never Slowed Down

A quick blog as this is a quick morning for me. I need to be over the pass, through the traffic of three schools by 9:00 for a smog test. Afterward, I will nab Michael then we will drive together to AAA to change the registration on our new/used car. I just want it done.

But, there is no time to tarry! Dr. K. came through once again and I have written permission to return to pulmonary rehab today! My boys! Friends! It will be fun! It is going to be a lot of work!

Michael sat in his chair and watched me with great humor last night. I had so much energy that I never stopped doing things until about a half hour before bedtime. I got the food shopping list for the week competed along with all the food for our dinner party on Saturday evening. That was a chore! I filled all of our pill boxes for the week, prepared the documents for my visit with the doctor on Wednesday and opened about 25 Safeway Monopoly cards mom gave to me yesterday. Did I mention I also cooked a fantastic dinner and cleaned the kitchen afterward?

I guess I am feeling so much better!

I am back.

Monday, April 4, 2016

Out with Mom

I am looking forward to Wednesday when I will be meeting with the Weight Management doctor for the first time in about a year. A check-in. She is marvelous, always gives me a different insight and food for thought.

Today is going to be a wild day. I will have my nose on the glass of the bank's door waiting until they open at 9:00 then a run over the pass to pick up mom. I need a smog on my car. We will swing by to see if and when they can do it this morning or afternoon or tomorrow.

We have become friends with the new neighbors Lisa and Mike across the cut-de-sac and have owed them a dinner. Mike is going in for shoulder surgery soon so Saturday night is pay back! They have never eaten Barbacoa so I will be making that and serving a roasted corn salad, cilantro/lime rice and my famous Fruit and Cheese Pizza for dessert. With mom today, I want to swing by World Market to buy a Mexican motif tablecloth and napkins. It will be a fun but casual dinner. Not a lot of work.

I am waiting to hear from Dr. K. to approve my return to pulmonary rehab on Tuesday. If I get the approval in time, I will get back to work this week. It will be good. Both of my rehab boys phoned to see if I was feeling better. Love that.

After working five hours in the yards on Saturday, I fully expected to be stiff and sore on Sunday and even today. Nothing. I felt great. I was still full of energy. I felt so great that I cleaned the outdoor furniture and also completed a couple of projects around the house. I am grateful for feeling so good and energetic. A month ago, I was so very sick.

Sunday, April 3, 2016

Enjoying the Work

It is nothing short of a miracle that I was able to walk down the hallway without pain this morning! I was limping around yesterday. Hips and knees. It all began last Thursday working in the gardens for many hours then I hit them again yesterday. It took just over an hour to weed two small flower gardens because my knees were so bruised from weeding the pavers on Thursday. I have bruises. The only way I got through it was with a pad from Brookstone. It was a lot of work. After that, I moved to the strip next to Ron. It was a mess. I cut and edged smaller stuff around the edges then cleaned up three large bushes with the hedge trimmer, trying not to cut the electrical cord! It took another two hours to do that plus to blow the area clean, rake up all the materials and toss them into the second garden recycling bin. Impressive!

It was finally noon. A break. I enjoyed a wonderful lunch of leftovers from Friday's lunch with mom. Then, back to the garden! The back yard was waiting for me.

It was in pretty good shape but needed the grass cut. Simple. Done. It needed to be blown clean and the materials hauled to the recycling bin. Then the fun began! I watered the pots while also washing the windows. We have floor to ceiling windows on the south and west sides of the house. No curtains. The gardens are part of the decor. If the windows are dirty, the house feels dirty. I discovered the Windex Wand several years ago. Windex on a stick. So simple that I can clean them without being short of breath and in just a few minutes. Done. I crawled into the house after a total of five hours in the gardens.

After dinner, I took a hot shower and felt human once again. I slept like a baby last night.

Many years ago, we bought Adirondack chairs made from recycled milk cartons for the patio. They have lasted in this sea air and still in great shape. They do get dirty during the winter. Every spring, I clean them with Fantastic. That is the job for today.

I am so very grateful that I am feeling well enough to have been able to work so hard again. Reclaiming my life back from that nasty illness.

Friday, April 1, 2016

Lesson Learned

Happy April Fool's Day. Beware all day! Not my favorite day of the year!

What a day yesterday! The goal: the front gardens on both sides of the driveway and the driveway. Lots of trimming and weeding needed. It was the first time I had been able to work out there in over six weeks. It was a mess!

I started at 9:15 and finished at 2:15. Everything growing along the driveway was cleaned with the hedge clippers, all larger bushes were also cut back, an area in the very front was cleaned out, the area along the edge of the property was cleaned and trimmed, the driveway was weeded and I filled the recycling container to the brim. I was so exhausted that I was not able to weed the two front flower gardens or trim and weed the area between the driveway and Ron's driveway.

This was a huge lesson for me. In the past, I would have pushed myself to get it done. All of it. But yesterday, I admitted to myself that I was done. I should do no more. It would still be there to attack on Saturday morning when I am fresh. I'll even be able to cut and blow the back gardens as well. It's okay.

I crawled into my chair and was recovering, wet with sweat, when Michael got home. We sat out on the swing and talked for an hour before we cooked some dinner together. I made a French onion soup (without bread or cheese), which took a lot of time as the onions can't be hurried. I had a helpful assistant along the way. We got it done and, along with a very thin piece of beef filet in each bowl, we had a fantastic dinner. Leftovers tonight.

For today, mom and I have nothing we HAVE to do. Should be a fun day together.