Living Well with a Bad Diagnosis - Lung Disease

Monday, October 31, 2016


It was a nice, quiet weekend which is just what I needed to get through this week. Today, Halloween! I made two batches of Caramel Corn to give to the kids (and Michael got a small bag), Asian Meatballs and the Hot Dogs wrapped in Crescent Rolls will come out of the oven as they all arrive. It will be fun!

But, I need to be at mom's for a 9AM phone call from her health insurance mentor. Every year, he reviews her medications and shops for three good programs for her Medicare gap coverage and prescriptions. Mom's hearing is not really great on the phone so I need to be there, repeat information to her after we hang up and help her to make a decision regarding her policies for 2017. Then, we are free for the day!

I am not coughing and feeling so much better. Dodged another bullet!

Saturday, October 29, 2016

A Jig or Two

It was quite a night. The Irish Fiddlers played a tiny bar on a Friday night in a town just north of us. We were in the far corner, windows were opened but it was so hot that all of us were dripping wet. Fortunately, I was playing far away from everyone so I was not worried about illness in the crowd and was able to half-sit on the window sill so I didn't have to stand all night. I was feeling better than Thursday but still tired. Earlier in the day, Mom and I had been together for her doctor's appointment and some lunch. Michael was seeing an old work friend for most of the time we played and I was so happy to see him when he arrived. I was ready to get home. All in all, it was a terrible venue, especially on a Friday night. It was a bit too much.

In my cold news, I am feeling better with very little coughing lately. I think the inhalers helped a lot. There are no plans for today other than some cooking. And a long nap. Lots of work needs to be done tomorrow as well as Halloween cooking in preparation of Ethan, Natalie, Winnie and Oliver's visit on Monday night.

Friday, October 28, 2016

Energy Nuggets

I actually ate three meals yesterday! Maybe I am recovering! I didn't eat much during the day but was able to eat a normal dinner of half a chicken breast covered with fresh tomatoes, BBQ sauce, a bit of cheese, scallions and a bit of cooked bacon all baked together to make BLT Chicken. It was delicious.

Last night's rehearsal for the fund-raising concert went well and I was grateful that I was able to take an hour nap earlier in the afternoon. My timing was also perfect because the rain paused as I hauled my bass into and out of the rehearsal space.

Regarding dinner, tonight's are sitting on covered plates ready for us this evening before we leave for the Irish Fiddling gig in a tiny bar just north of us. Michael commented that because I cook each dinner for two nights, he is able to judge what he eats for lunch. If we are having fish, he has a heavier lunch. Meat? He makes sure he does not have meat for lunch.

The real reason I do this is because I learned in Pulmonary Rehab that it saves a lot of physical energy. They called them energy nuggets. If I can park in the disability spot instead of further away from the door of a store, that is saving energy nuggets. If I use paper plates instead of real plates that need rinsing and placing into a dishwasher then removing from the dishwasher then returned to the shelf, that is saving energy nuggets. All these little nuggets are then saved for later in the day when I could use them to do an additional activity of daily living.

If I can save energy nuggets from NOT having to make dinner but still have a healthy dinner waiting for us in the refrigerator from the night before, that is the goal. I am relieved that I then don't have to clean the kitchen, except to place silverware in the dishwasher. Paper plates are tossed. Done. Tons of saved nuggets!

Consider cooking dinner for two evenings. Feel the glories of saving those energy nuggets!

Thursday, October 27, 2016

Not Hungry

It has seriously begun. When my lungs are struggling with a cold or beginning of an infection, I can't get food in. I just can't swallow it without the feeling that, even if I try, I will throw it up. Breakfast is the worst as food is needed for all my medications. Just a couple of bites and that's it. At lunchtime yesterday, I finished my Safeway run and kept trying to think about what sounded good and what would stay down. McDonald's was next door so I got a child's hamburger.

After putting groceries away, I tried to enjoy it. Only about half of it got in. By the time it was dinnertime, the thought of food was overwhelming. Michael suggested a piece of toast. Perfect. It got down and it stayed down and it was enough.

I have no sense of hunger this morning.

Today, I am doing some banking and a stop at CVS before going over the pass to Trader Joe's. I am gathering the ingredients to make Caramel Corn for Leslie's girls and for Winnie and Oliver. A few other goodies will give them strength to head out for trick-or-treating. Tonight, there is a rehearsal for the fundraising concert in two weeks. I hope I feel well enough to go as I need the practice!

Wednesday, October 26, 2016

Get A Second Opinion

Thanks to Coldcalm, I am feeling so much better this morning. No coughing. No blowing my nose. Still tired and can't eat much at breakfast, which always happens when my lungs are not happy. Since we have Winnie and her family coming for Halloween on Monday and two storms are expected before then, I am going to try to just cut the grass this morning. No trimming. No extra anything. I may even get out to Safeway later in the day.

After a couple of hours yesterday morning, the sheets were washed and ironed as well as a pile that also needed that steamy iron. I read. Rested. Ate very little lunch. Michael suddenly appeared and took me out to the German bakery in town for a cookie. It felt good to get out and into the world.

The Irish Fiddling rehearsal went well last night. We are booked to play a tiny bar on Friday night just north of us. People will be talking and having fun so I hope we can be heard. Microphones will be involved for the other instruments but no need for my bass. It carries through any crowd!

After having another phone conversation with someone who really had not been properly diagnosed, please, please get a second opinion on your diagnosis. I have found the research-driven university hospitals and clinics are the most up-to-date regarding the latest treatment of our diseases. Yes, they are often not close to our homes or like our local doctor's offices but it is worth knowing which ILD has invaded our bodies. Some can be treated with prednisone while others can be treated with one of the new anti-fibrotic drugs. There are new studies to see if these drugs would also help those of us who have another ILD other than IPF. Ask to be a part of this study that is opening up in January. If you participate, you will be giving the drug for free for the rest of your life. Current price - $8,000/month. Hopefully, the insurance companies will begin to follow Kaiser and offer these new drugs with an affordable co-payment. Remember, you are in charge of managing and learning everything you can about your disease. Know your PFT numbers (FVC and DLCO adjusted), eat well and exercise. That is the secret for a better quality of life. Exercise. Check out your local pulmonary rehab program in a local hospital. The first 8-weeks are paid for by insurance and Medicare. Just do it.

Tuesday, October 25, 2016

A Couch and a Book

Mid-way through our day yesterday, I suddenly realized I was not feeling well. Mom and I had run errands for her and were shopping at JCP when it suddenly got very warm. I realized I had pushed myself too hard too quickly. As a precaution, I was wearing my oxygen backpack and a mask so mom would not get my cold. I hoped that the extra oxygen helped a bit.

I gathered myself, we paid for our items then we drove to lunch. A nice lunch in a pretty restaurant where we had a fun conversation. I was feeling a bit better. It was all I could do to get home and wait until 8PM for bedtime. I don't remember much else.

No rehab class today. I am staying home and not sharing this cold with the class. There is a rehearsal for Friday gig with the Irish Fiddlers but I am going to wait to see how I am feeling later in the day. I may not feel well enough to play. As it is supposed to rain, I plan to stay in, on the couch, with a book and maybe do some ironing.

As Halloween is coming quickly, I need to have a plan for Natalie and the kids who come for trick-or-treating in our neighborhood. Hot spiced cider! Beer for the adults! Homemade Caramel Corm for Leslie's two girls and for Winnie and Oliver, hot dog crescent rolls for the kids and something to eat for the adults. I'll figure it out today and buy it all tomorrow.

Monday, October 24, 2016


I never left the couch yesterday. British Don feels horrible that he gave us his cold but...that's life. My last two major colds were given to my by my mom but I don't blame her. No matter how hard I try to stay away from sick people and crowds, I know I can't live in a total bubble. I do wash my hands a lot and do avoid crowds and try to be aware of coughing around me happens.

Michael is still blowing his nose but feeling much better today. I am tired and I don't feel great but my nose has slowed down. Coldcalm has helped. Mom and I are meeting today to run some errands and shop. I will be wearing my oxygen and a mask so I don't pass this along to her! No rehab class this week. No orchestra rehearsal.

I do have a gig with the Irish Fiddling group on Friday evening. Hopefully, I will feel better by then. Rehearsal is tomorrow night but I will stay far away from the others in the group.

Bottom line: Better. Still contagious, I think. Coughing a bit. Tired. Cooling my jets.

Should be slow week!

Sunday, October 23, 2016

Cold #1 of the Season

Congratulations to my old hometown Chicago Cubs. Finally! I'll be cheering for them in the World Series.

We fought nasty traffic to and from the children's birthday party in the city but it was worth it. The mom does everything so beautifully and no child enjoyed the sweet clown more than Michael. He was enthralled and laughed the entire time. Did I mention that they had a gourmet all-you-can-eat ice cream cart? He was one happy boy!

On the way home, we stopped by Jim's and chatted a bit before picking up some dinner to eat at home. But, the bad news is that I have a cold. It was not too bad yesterday after a night of Aprodine. It seemed to really knock it down. We stopped to buy some Coldcalm on our way home, which always seems to help lessen the degree of the cold. We are calling British Don "Typhoid Mary" after he gave Michael his cold, then he shared his with me and we discovered yesterday that Michael also shared it with his brother. I am sure the list of the infected will continue. I need to get better so I can get my flu shot!

This morning, I can feel it but I don't feel horrible. My plan is to water some plants in the yard, but nothing else. With rehearsals and another gig on Friday night, I need to get better!

Saturday, October 22, 2016

Playing the Ranch

Everything flowed really well yesterday and I was ready to hop in the car to get to the ranch right at 4:30. It was only a short distance down the coast. A working ranch. A ranch owned by a university. The woman who had moved them forward these past three years was off to tackle a new challenge. It was to be a goodbye party for her. This was the same ranch that mom and I had visited many summers with Barbara's Day Care kids, as they had camps and fun tours for kids.

We were set to play up in the big barn next to the sheep and horses. Right next to the sheep. Did I mention the smell? It was...strong. Overwhelming. After a bit, I tried not to notice it but as the event unfolded, we could smell when one of the sheep let loose. At one point, we realized we had to move some wires as they tried to get to them for a good chew. But all in all, they seemed to really like the music and were calm and quiet all night.

We were supposed to be playing but we had no audience so we were taking photos and videos and just messing around when the woman came to invited us down the hill to the picnic area for dinner. Nice. We ate quickly then I took the long, slow walk back up the hill. Thankfully, I brought my oxygen so I was slow but fine.

We set up but didn't have to wait for long. People began to come into the barn. Pretty soon the barn was filled with happy, dancing people. Toasts were made to the outgoing head and there were lots of tears. She will be missed. Then, she danced the night away.

We had a ball. Best venue yet, despite the smells.

I was home by 9:00 to find Michael dozing on the couch in the living room where he spent the night. We both took an Aprodine so we are feeling pretty good this morning.

Kid party today. Outside. In a park. We will probably meet British Don there and stay only as long as we need to.

Friday, October 21, 2016

Days Racing By

Michael was fighting with his sinus as they were acting up and I was exhausted so, we were in bed by 7:15. He kept saying it was allergies but I gave him an Aprodine last night, he slept on the couch and this morning, it sure sounds like a cold.

That is bad as we were together in a car on Wednesday. I so hope I don't get it. We now separate. No shared space without masks. I also need to get a flu shot ASAP.

Add this drama to today's drama. Mom has her PT appointment at 9AM, I have been up since 5AM getting ready to leave early but then I need to rush back for my noon appointment with the dentist. Holy cow. After a nice three hour rest, I will hop in the car and head south for the retirement party my little Irish Fiddling group is playing at a ranch tonight.

Another long day.

Before rehab yesterday, I went to my favorite independent bookstore on the Avenue to buy a Mommy and Me cookbook for our 5-year old friend's party tomorrow. Then, I walked a few blocks back to Sur la Table to buy the cutest apron, chef's hat and child's sized mug with her initial on it. The wonderful woman there wrapped and packaged them all up in one box. Perfect.

Off I go. Have to eat breakfast then run.

Thursday, October 20, 2016

Cleaning Bug

It was a good night, great rehearsal, my brain hurt from having to think so hard and there were not many people there so my bass rang out. Kinda fun. I remember falling into bed but nothing afterward. I was dead.

Michael walked into town for his dentist appointment yesterday. It was a beautiful, warm day and he did it in a t-shirt and jeans. It's October! After his teeth cleaning, I met him at the Barber Shop for a haircut. We had to reschedule his shave. Lunch in town was followed by a trip over the pass to grocery shop. While I was putting away the groceries, I heard the mower and looked out into the garden to see Michael cutting the grass for me. His idea. Without saying a word. Just did it.

While I was at the rehearsal last night, he noticed that there was dust on the rug under the couch in the living room. Apparently, he grabbed the vacuum, noticed it was dusty so he took it apart, cleaned it, moved the couch to vacuum the rug then he thought of our bedroom. He had noticed that there was dust between the bed and the wall so he moved all the furniture off that wall, vacuumed everything then put it all back. Did I mention that he also went through the house to catch any cobwebs in the corners? He was so excited to show me everything after I got home. A better gift to me than flowers or chocolates!

We have been invited to a 5-year old's birthday party on Saturday afternoon. They are friends of British Don and own a group of restaurants in the city. The only reason we can go is that it is in a park. I won't be inside around kids and their back-to-school germs. So, today I need to buy a little something for this sweet young girl.

I am looking forward to working out in rehab today. We have a quiet evening tonight but Friday is going to be nuts. Mom has a PT appointment very early, I have a dentist appointment at noon and I have to leave the house at 4:30 for the Irish Fiddling gig in at barn at the ranch south of town. Then, a performance.

Wednesday, October 19, 2016

Surrounded by Passionate People

Got my errands done before the rehab class where I worked out so hard that I was dripping wet when checking out. It felt great. I crawled home, made a simple dinner then went next door for the Irish Fiddling rehearsal for Friday night's gig. It was fun.

The singer/guitarist, Dave had written a song about his family's journey to America from Malaysia. A couple of years ago, he lost three pivotal members of his family in quick succession - father, grandmother and uncle. His father died of a massive heart attack, his maternal grandmother died of old age at 94-years old, but it was his uncle's passing that really was filled with life lessons for him. His uncle was a man who lived his life to the fullest. At his request, Dave flew to Malaysia with his ashes and scattered some in the gardens of a mansion high in the hills where his uncle had very fond memories. Then, Dave was able to carry his ashes in a full Balinese ceremony to a specific beach for the final scattering. He said the entire experience was so surreal and deeply moving and so different from funerals here in the US. It was almost like a dream and he wondered if it really happened long after he got home.

It was good song. I watched his fingers to catch the chords as I didn't have any music and fell in love with the 3/4 waltz time of the piece. It was almost a dance.

I have been playing with these people for only six-months. It was just to be for fun but I have developed such deep feelings for each person that it has so enhanced my life. Musical, deeply emotional and passionate people. Pretty nice.

Tuesday, October 18, 2016

An Adult Dinner Out in the World

Thank goodness the dinner reservations were early. Traffic was not horrible, we arrive 20-minutes early, found a parking space and had ordered a cocktail for Michael before British Don arrived via Uber. It was a lovely dinner in a beautiful room with superb service. He was impressed, and that's a big deal!

We chose the three course option. Don and I had the same appetizer and main course: Salt Cured Foie Gras Torchon with Pears, Duck Prosciutto and Toasted Country Bread then Roasted Pork Tenderloin and Belly with Champagne Braised Savoy Cabbage, Maitake Mushrooms and Fingerling Potatoes. Michael began with Seared Foie Gras with Caramelized Onions and Apples then Pan Seared Scallops with Cannellini Bean puree, Garlic Confit, Tomato and Basil.

But wait, there was more. The boys ordered their desserts: Lemon Souffle Cake with Creme Fraiche Panna Cotta and Raspberry Sorbet and Cheesecake with Mixed Berries, Creme Anglaise and Strawberry Sorbet. I chose four cheeses from the cheese cart and shared them with the table.

Then, they brought a special chocolate cake filled with ganache with a candle in it for Don and a plate of eight small bites of other house-made candies.

Along with the check, they gave each of us a beautifully wrapped Pumpkin Cake filled with something glorious for BREAKFAST! Or, as our waiter suggested, we could eat them on the way home if we were still hungry!

We drove Don home along the Embarcadero, watched the lights on the Bay Bridge look like shadows of fish swimming along, felt like we were adults being out late on a weeknight and full but not stuffed. Satisfied. Thank goodness for small portions!

Today? I am looking forward to rehab class and a light breakfast, light lunch and eggs for dinner! Tonight, I have the Irish Fiddling rehearsal in anticipation of Friday's gig. Another full day.

Monday, October 17, 2016

Ready for the Week

My weekend plan was perfect. I took care of myself, stayed in while it rained outside and rested. Boring yes, but I think I dodged a bullet because I was really not feeling well on Saturday. I have another crazy week ahead, in fact, I could be out every night this week and have packed days.

Saturday afternoon, I had an hour phone conversation with the uncle of an RN from the other rehab. He was told he had an ILD but nothing had happened in six years. No diagnosis, no workup for GERD, no mention of pulmonary rehab. Nothing. He also didn't want to deal with it and was just now beginning to feel shortness of breath.

He wasted years that he can't get back. I suggested several things: He needs a proper diagnosis, he needs to be seen in a research/university facility, he needs to begin pulmonary rehab ASAP, he needs to consider the new anti-fibrotic drugs if he has IPF. He got it. His niece will check in with him at the end of the week and was thrilled that I was able to move him forward.

I felt pretty good after our conversation and hoped I really helped him with information from my ILD Support Group and my personal experiences. Made my weekend.

Tonight, Michael and I are hosting British Don at one of the best restaurants in the city for his birthday. It's deep in the city. We will be dealing with rush hour traffic and the stress of getting there on time. A late night.

Tuesday, I have an Irish Fiddling rehearsal, Wednesday is an orchestra rehearsal, Thursday is the Summer Strings rehearsal and Friday. Well...

Every summer, mom and I would meet Barbara's Day Care kids at a ranch owned by a large university. We loved watching the kids catch and hold chickens, brush the goats, feed the sheep, avoid the llama (he spits), pet the rabbits, card wool and just hang out. A wonderful place for kids. The head of the ranch is retiring Friday and they have asked my Irish Fiddling group to play in the large barn (with the sheep) for the party of 25 people. Fun. A pleasure.

Saturday, October 15, 2016

Surprise Party

So, I thought I had everything covered yesterday. HA! After posting, I re-read an email from Leslie about the potluck and it was FRIDAY NIGHT not Saturday! And, I had promised to bring three items for the potluck - Pumpkin Rolls, Caramel Corn and Open-Faced Ham and Cheese Hot Sandwiches.

I was in trouble. How was I going to get these done by 6:30?

Moms PT appointment went well and she was doing so much better with her balance and her back pain. We really loved the woman we are working with as she seemed to enjoy mom. Afterward, we went to an early lunch at Applebee's for some Sriracha Shrimp then I drove her home.

I was home by 1:00.

The TV was blaring, all the cabinets were opened, the counters were stacked with stuff and the sink was filled with dirty dishes when Michael showed up at 2:00. By then, I had the Pumpkin Rolls cooling on the counter and the popcorn popped. I finished off the Caramel Corn in the oven, spread the frosting on the pumpkin cake and rolled it up and the butter with minced onions and mustard for the sandwiches was ready.

I was already exhausted from the week and the evening rehearsals so by 5:00, I was done. But wait! Now I had to get ready to also play with the Irish Fiddling group plus two members of a highly regarded Scottish Fiddling group.

After making and cooking the sandwiches, we gathered all the food and delivered it to Leslie's, rolled my bass over and then magic happened. For the first time in years, Michael also hauled his guitar to the party. Leslie told him to bring it along. It was amazing to stand next to each other and to play together for the first time in decades. He did really well and Dave, the really great guitarist, played it later in the evening. Wouldn't let it go. It is a really nice guitar.

After a very long week and feeling totally worn out, we had a fantastic time playing with a few new people, enjoying some special food, playing next to each other and being out in the world on a Friday night.

Today? The couch with the clicker and a book. All day. Well, maybe I should clean the kitchen and the refrigerator. We'll see.

Friday, October 14, 2016


I think I overdid it yesterday. In fact, I'm pretty sure of it and I'm a bit worried about getting sick. My plan is to take it easy all weekend, except for a little party with the Irish Fiddling people on Saturday evening.

Our early morning walk was over two miles and I really felt it later in the day. After a quick breakfast, I went to Safeway then back to the house to change for the rehab class. On the way to class, I stopped at the bank and CVS to print mom's photos of her 80th birthday party then AAA to pay for the Mustang tags. Sherman was waiting for me, he looked good except for the huge bandage on his hand. He put a hole in it so it was wrapped in lots of gauze and tape. It was a good workout but I was really dragging by the end. I crawled home but I had to be at the extra orchestra concert rehearsal by 7PM. It was fun to play with such a small group of just strings. Nine o'clock came rolling around and I was so tired I really couldn't focus any longer. Michael met me at the door, took my bass out of the car while I climbed into bed. Done. Cooked. Finished.

Mom has her PT appointment early this morning so I am off again! After I get home this afternoon, I have an appointment to speak with the uncle of one of the RNs at the other rehab. He is in Denver and recently diagnosed with IPF. I hope I can give him lots of good information and nudge him into rehab. Dinner will be simple. Bed will be early.

I did hear from Natalie while I was in the rehearsal. The group was working on a rather boring part, I had almost 60 measures of rests, so I was able to read and respond to her. Ethan had been working at his new fancy job for a week and loved it. She also loved the big fancy pay check! I am so happy for them and look forward to hearing all about it on Halloween! They come to our neighborhood  to trick-or-treat as it is so safe and flat and well lit.

Also, Michael had been peering through our windows waiting for Lisa and Mike to come home from their two-week trip to Europe. They left over a two weeks ago so he was beginning to worry something was amiss. I texted Lisa to see if they were home and, at the rehearsal last night, she texted back from Rome! They are due home on Saturday and thought it was sweet that Michael was looking for them!

So, I feel like I am stumbling into the weekend with the need for lots of sleep and rest. Next week is booked.

Thursday, October 13, 2016


It is dark and cold. Rain is due sometime today, showers tomorrow and Sunday. We have been invited to Leslie and Joe's for a potluck on Saturday evening since we won't be playing anywhere due to the rain. She also invited musicians from a Scottish Fiddling group. A really professional group of musicians. We are all bringing our instruments, so that will be a lot of fun.

I am bringing Pumpkin Rolls, homemade Caramel Corn and my Open-Faced Ham and Cheese sandwiches. Yes, I plan to bake instead of gardening on Saturday while the Pumpkin Festival draws thousands to our little town this weekend.

Michael and I drove about two hours down the coast to Carmel-by-the-Sea. It was hopping! Last time we were there, no soul was in sight! This is Clint Eastwood's town but the ocean views are even more famous. We had read about a very cool restaurant right on the main drag that was impossible to get dinner reservations. It was Mediterranean food but REALLY GOOD Mediterranean food. We were there as they opened for lunch, made friends with the owners, discovered they were booked for dinner through the end of the year and, after we enjoyed the food, we knew why! Two local ladies sat next to us and said that it was the best place in town and even they had not been able to get dinner reservations! We ordered a sample plate and split it. Chicken, meat, rice, humus, pita, salad and a free piece of baklava for dessert. The drive home was so lovely, we talked, kept an eye on the ocean, spotted some dolphins, marveled at the open highway with few cars and got home feeling like we had a nice day together.

This morning, we are getting ready to walk into town, buy a few items at Safeway then walk home. The store will be packed beginning today as people will be packing in for the weekend. I need to buy just a few things to make the sandwiches for Saturday night. Then, I'll get dress, pay my Visa at the bank, run to AAA to pay for some new tags for the Mustang then head to Sherman and rehab. Oh, and there is a special, extra orchestra rehearsal tonight.

Another glorious day ahead!

Wednesday, October 12, 2016

Drug Trials

It was a bit odd to look around the room at the ILD Support Group meeting and realize that Lena and I were the only original members. I know there were others not in attendance but I learned from Lena that there are only a few of us left. As I said to her, "Only the good die young and here we are!" We bonded again.

The presenter had not adjusted to her audience. She had a quiet little voice and presented everything in a monotone with no excitement, just the facts. The dull facts. The room was warm and we all began to get sleepy. Thankfully Sally, who is head of the group, was able to fill in with fun information about certain trials and drugs and she made it interesting. She woke us up.

For full information, go to   A wealth of information.

Several things stood out: Beginning in January, there will be a drug trial of the two new anti-fibrotic drugs recently approved only for patients with IPF that will be studying their affects on those of us with other ILDs. If you have an ILD other than IPF, you may want to talk with your doctor about participating in this trial.

The other rather exciting trial in Phase II right now is, I think, GBT - 440. It is a pill to increase oxygen in the blood. Wouldn't that be amazing? Not having to haul supplemental oxygen everywhere.  Just take a pill? I would love to be in that trial!

Wish I had more but it was very difficult to hear. I did have a fun rehearsal of the Irish Fiddling group before I fell into bed. The day had begun with a 2+ mile walk along the ocean bluffs, a run through Safeway and a long drive into the city for the meeting. After watching the SF Giants lose, I fell into sleep exhausted from the day.

Today? We are taking a drive down the coast to Carmel-By-the-Sea then I might have the energy to go to the orchestra rehearsal tonight.

Tuesday, October 11, 2016

And Then I Met Danny

It's dark and a bit warmer this morning. The first rainstorm of the season is due on Friday. The Fall season definitely is here. Within the hour, Michael and I will take an hour walk and enjoy our time together. Then, after a quick run to Safeway, I am going to the ILD Support Group in the city. In tomorrow's blog, I will have all the latest information on the new drug trials. Later this evening, there is a rehearsal with the Irish Fiddling group. A long day ahead.

Mom had the surgery on her eye but it took so much longer than we had anticipated. After we checked in and had her eyes checked, she was given drops in her one eye to shrink her pupil so the laser could get in the eye easier. What we didn't know is that it takes an hour for the drops to fully shrink the pupil. An hour. I had an appointment with my eye doctor at noon about 20-minutes north of mom's apartment. It became very stressful.

Finally, mom had the treatment to help relieve the pressure in her eye, which she said was very painful. It took time to make the follow-up appointment, it took more time to get to the car, traffic was stopped on the freeway, we needed to pickup a prescription for her eye, the line at Walgreen's was long, we finally got to mom's house, I hopped into my car and took off. I arrived to the appointment with very little gas left in my tank (I was going to get gas on the way) and I was hungry. Really hungry.

I finally gave up my contact lenses that had one for distance and one for reading. Last year, the distance was never clear and it bugged me all year. After being fit last week, it still was not going to be crisp and clear so I made a decision. Yesterday, I asked the doctor to fit me for distance only and I would have to use readers. What a pain but, it is worth being able to see everything clearly again. As it was a holiday, I knew the pass would be packed with tourists so I headed home from the North. I limped into a gas station then grabbed a quick bit to eat in the car on the way to CVS to buy readers. That is where I met Danny.

I was making copies of some photos for mom when the photo machine broke and she tried to fix it. We got talking. She was 25-years old and recently moved to our town from the valley. Her town was gang-ridden, she was highly involved in all the bad stuff until three teachers in high school intervened. She was in the marching band and found that the friends she made there replaced the gang. One teacher took her aside after something she had done and pointed out to her that she was a leader but needed to learn how to lead. She loved to read and that was clear by her vocabulary. She was going to the local community college full time and working full time. She was very impressive. She is going places.

I briefly told her about Michael being raised in the projects and how he got out. Both she and he were considered the black sheep of their families and both felt they had to leave to escape. I asked why gangs are so successful? She said that the parents are usually hard-working people with one or two jobs each, the older children are in charge of the younger ones and no one is there to provide structure or lessons for the kids. No family dinners. No family conversations. Everyone is exhausted. Interesting.

The other workers called for her help and we had to quickly separate. I hope I see her again. I wanted to put my arms around her and have all the good things in my life flow into hers. It would be interesting to see where she is in five years. She made my day.

Monday, October 10, 2016

Hitting the Road Early

We walked 6,000 steps along the ocean at 7AM yesterday morning. It felt fantastic but it was so cold. I found myself sitting on the couch in the sun trying to get warm afterwards and maybe there was a bit of nap! We ate lunch while watching the F1 race from Japan (horribly boring race) and I made Ancho Macho Chili for dinner. It was a several hour process.

I have to be out the door within the hour so we will be on time for surgery on mom's right eye at 8:30 deep in Palo Alto. Trying to get there during rush hour will be a challenge but I hope that people are staying home because of Columbus Day. She is having a laser treatment to help relieve pressure in her eye. Afterward, I have a noon appointment at Costco to complain about my contacts and try new ones.

An interesting week ahead includes an ILD Support Group about new drug trials and a planned drive down the coast to visit Carmel, two rehearsals and another doctor appointment for mom. Busy.

Saturday, October 8, 2016

Lung Transplant Clinic Calling!

The Lung Transplant Clinic phoned while we were in the car on our way to Nancy's. Emily explained to me that the doctor had noted that the clinic needed to see me for a series of tests every six-months. These tests will include urine, feces, PFTs, 6-minute walk and an echo cardiogram.

Rather brilliant.

When speaking with one of the guys in my rehab class, I asked how they knew he was sick enough but well enough for the transplant. He told me that his doctor had been watching him and was able to catch him as he was falling. I often wondered how that worked. Now I know. With these tests every six-months, they are able to see the trends and if the numbers begin to fall outside that trend, they know the crash has begun.

It's not that I'm looking forward to have these tests, especially the 6-minute walk. This one will be six minutes of walking as far as possible WITHOUT OXYGEN! After a quick break, another 6-minute walk with oxygen. I remember being totally spent afterwards.

The house is going to be decorated for Halloween today, it is going to be around 80 degrees here on the coast and we are expecting the onslaught of pumpkin tourists to invade our town beginning today to Halloween. Traffic was even backed up yesterday at 2PM with pumpkin people. It always opens up after we pass the pumpkin patches.

Today is British Don's birthday so we might meet him at the restaurant right on the ocean for a cocktail this afternoon. He made it! Quadruple bi-pass surgery a couple of years ago. Retired. His daughter is expected a baby and also invited him to spend the holidays with her in Nashville. He is happy.

Let the Fall and holiday seasons begin! Oh my.

Friday, October 7, 2016

The Visit

It only took 90-minutes to get to Nancy's new home. She met us in the lobby of her independent living community, which was beautiful and looked like a Marriott Hotel! Gorgeous lobby. We peeked into the eating area (three meals a day), the library and the vast post office/pharmacy/ coffee bar/popcorn/movie theatre area overlooking the large pool. Not bad!

Her apartment was on the top floor with a small balcony and a washer/dryer. Very nice. She literally was walking distance to her doctor's office. We sat and talked and talked before we went to lunch, had fun at lunch then took off for home.

On the way home, Michael mentioned that Nancy didn't have any fire in her eyes anymore. She even said at one point that she was mad at her husband for dying. Anger. Not good. I have seen what it can do in my family when my aunt was so angry at God for taking away her twin. She sat in her house, seething and died of cancer throughout her body within three years. There had been no cancer anywhere in the family for generations.

Nancy also mentioned that she was "down" a lot. Her son's family is nearby and she said that someone always drops in everyday to see her but they are out of town until next week. Her house has not been cleaned out yet and she just does not seem interested in it. As a master gardener, she wants nothing to do with plants anymore. As a master baker, she doesn't want to bake anything, either. It's as if she made a decision to put her former life behind her and forget it. But, still angry.

Nancy is a very soft spoken, intelligent woman who didn't have a lot of girlfriends or was a person who would just jump in the car to do a bit of solo shopping. She and Jay were always together. I know she is spending most of her time in her room.

So many life lessons here. We drove home so grateful that my mom is a firecracker and doesn't NEED me everyday. She made a decision after my dad died so suddenly not to be a burden to her children and, with a bit of steel in her back, she decided to create a new life for herself. It wasn't easy. It still isn't easy but she keeps herself busy. She volunteers at the library, she plays bridge every week, she goes to the get togethers at her independent living place and chats with everyone. She also is a wicked shopper. We are going to have a fun day today. After her rehab this morning, I will tell her about our day yesterday and tell her how grateful I am that she is so independent.

Thursday, October 6, 2016

Friends for Life

It was a long rehearsal last night. Gerry was there, so that made it fun but, it was rather a bore. The conductor was working on one small eight measures section for twenty-minutes and the basses played only five notes. Five. We played them well. We hit them every time.

I would have rather been at home watching the SF Giants game!

While counting measure, I kept checking the website for the latest scores. 0-0. The innings started to rack up: 5th, 6th, 7th, 8th. Then, my phone ran out of juice. Nuts!

Finally, it was time for cookie break and my friend Jack (trumpet) ran over to tell me they had won! I must say, I was very nervous about it all. One of my kids from the school where I got sick is a pitcher for the Mets, so I thought of him when I heard the news. Rushing home, I listened to sports talk radio and Michael had the post game interviews on. It was not the same but I was able to see a tape of the homer. Here we go. As a Giants fan, we understand that they need to torture us. It's part of their gig.

Our gig today is to be together and drive 100 miles to visit Nancy in her new apartment at an independent living environment. She so misses Jay. I hope we can make her laugh and have a nice lunch with us. I cut some hydrangeas from my garden to bring to her as well as a small pumpkin painted with a bit of gold with a cute ribbon on it. Just a little something from our little town where we were neighbors beginning in 1982. Friends for life.

Wednesday, October 5, 2016


I felt great after the walk along the ocean and felt even better after the rehab class yesterday. Sherman wasn't there so I must phone him today. When I exercise, my breathing is better for days and days afterward. Since I am with my mom today and we are going to be in a car to Nancy's on Thursday, I won't be able to do my exercise routines. Hopefully, yesterday's double dose of exercise will carry through.

While I was waiting in the lobby near the entrance to the rehab gym, a woman walked out of the gym and paused to put on her jacket. I began a conversation and learned that she received a heart transplant at my university hospital about three months ago. She was doing really well but was struggling with prednisone and additional weight. I gave her my prednisone diet (non-starchy veggies and protein) and told her how much better she will be feeling in three months after cardiac rehab classes three days a week.

I learned that she still had relatively young children and that she developed the heart problems as a result of radiation treatments for breast cancer over a decade ago. Oh, how far the medical world has come. When she told me she had beaten cancer and now is dealing with the transplant, I knew I was in the presence of a with a warrior. A survivor.

So I guess we all have a choice. When given the bad news, do we want to pretend we are fine? Deny the diagnosis? Wait to die? Or, are we warriors? Do we learn everything we can about the disease? Do we take care of ourselves by eating well and exercising? Do we stay active in our lives?

The choice is ours to make. I chose to fight and here I am, eleven years after my diagnosis and fourteen years after the disease invaded my body.


Tuesday, October 4, 2016

Just a Walk

Michael and I just got home from a lovely long walk under the low clouds along the ocean cliffs. The air was heavy and we went north instead of south with lots of small uphills. It was a nice two mile wake up.

On our way back, we heard three women approaching from behind us talking, laughing and clearly having a good time together. As they passed us, I said, "We want to walk with you! You guys are having way too much fun!" They laughed and one looked back at me and said, "And good for you for being out here."

If she only knew.

It's time like this that I wish I could say, "Yup, been out here doing it since 2002!" or "Yup and by the way, I never smoked!" or "Yup, I have lost over 100 pound!" or "Yup, I am heading towards lung transplants." But, I don't. I smile.

If she only knew all that I have been through.

Monday, October 3, 2016

Looking Ahead

There were a lot of little problems hanging around so I got them all addressed yesterday. Such a satisfying feeling. Also, another good feeling is that this is going to be a quieter week! Thank goodness! Today, mom and I are going to have my eyes checked for new contact lenses. That's it. That's all. Glorious!

The special event of the week will be Thursday. We are going to visit our former neighbor Nancy at her new independent care facility. Her husband died so suddenly over a year ago and it has been very difficult for her. I connected with her son and he told me that our timing could not be better as his family was leaving today to another state for a week-long visit his in-laws. This will break up his time away. So glad it all is working out.

Before Thursday, there will be Irish Fiddling and orchestra rehearsals, pulmonary rehab classes and walks along the ocean bluffs. A fun week.

But, what I am most excited about, is the ILD Support Group next Tuesday when we are given an update on all the research and drug trials related to Interstitial Lung Diseases. It always gives me hope!

Saturday, October 1, 2016

Let the Pumpkins Begin

While I was at two doctor's appointments with mom, Michael took a long walk on the beach at the water's edge. He told me walking on the sand was a challenge, he perspired and felt it in his thighs! He is determined to lose another ten pounds so we are planning an early Sunday morning walk on the trail along the bluffs. Our treat will be a Formula 1 race from Malaysia and breakfast after we walk home. Sounds like a perfect Sunday!

My gardens are a mess. I never cut the grass last week so it is knee-high. Well, almost. Michael surprised me by beginning his weekly hacking away at a large white fir tree that has grown too big and is beginning to send its roots towards our garage foundation. Two garden recycle containers were filled and he even cut up the logs. He plans to take it down branch by branch until it is gone, saving us several thousands of dollars!

I feel like I have struggled through two weeks of major appointments but now there seems to be some daylight in next week's calendar. Yes, still rehearsals and rehab but fewer appointments. Thank goodness.

The pumpkins are in the fields along the little road over the pass. The tourists will begin to make their trek over the mountain in search of the perfect pumpkin. It begins today. For the next month, the weekends will be impossible, the road will be jammed with traffic and our lives will be put on hold until Halloween. It brings a lot of money into our little town, not only spent on the pumpkins, but people need food and gas and other things they didn't even know they needed! In two weeks, several hundred thousand people will make their way to our town for Pumpkin Festival weekend. Lots of food and music and crafts. Fall. My favorite season.