Living Well with a Bad Diagnosis - Lung Disease

Thursday, December 31, 2015


Happy New Year...almost! We are planning a quiet night of celebration. Clearly, I am not 100% as I slept over 11 hours last night. It is expected to be very cold so we plan to huddle around the fireplace, lit with logs with no smell, and talk about the new year.

Tomorrow, we are looking forward to dinner with our dear friends, Dave and Lori. Their son, Joel was married last year so we are excited to hear how he and his wife are doing in their lives together. Such nice people.

All the Christmas decorations were packed away yesterday and the house is ready to be cleaned this morning while I am visiting my mom. We will have lunch together and chat. One of her girlfriends where she lives has been dealing with a lung issue and is currently in pulmonary rehab. She really wants to talk with me so we might get together with her for a cup of coffee and conversation. I will encourage her to continue her rehab, of course.

I so hope the year ahead is filled with friends and family, fine doctors, good rehab programs and all the best that life has to offer!

Happy 2016!

An update on Google Friend Connect
1 week ago by A Googler
In 2011, we announced the retirement of Google Friend Connect for all non-Blogger sites. We made an exception for Blogger to give readers an easy way to follow blogs using a variety of accounts. Yet over time, we’ve seen that most people sign into Friend Connect with a Google Account. So, in an effort to streamline, in the next few weeks we’ll be making some changes that will eventually require readers to have a Google Account to sign into Friend Connect and follow blogs.

As part of this plan, starting the week of January 11, we’ll remove the ability for people with Twitter, Yahoo, Orkut or other OpenId providers to sign in to Google Friend Connect and follow blogs. At the same time, we’ll remove non-Google Account profiles so you may see a decrease in your blog follower count.

We encourage you to tell affected readers (perhaps via a blog post), that if they use a non-Google Account to follow your blog, they need to sign up for a Google Account, and re-follow your blog. With a Google Account, they’ll get blogs added to their Reading List, making it easier for them to see the latest posts and activity of the blogs they follow.

We know how important followers are to all bloggers, but we believe this change will improve the experience for both you and your readers.

Posted by Michael Goddard, Software Engineer

Wednesday, December 30, 2015


I got the below on from Google regarding readers to this blog. Apparently, you will no longer be able to read any of these blogs without signing in with a Google account. Google. The big monster. I am honored and amazed that I have received hit from all over the world and it makes me very sad to realize that someone from China or Kenya or Sweden will not find me because they don't have a Google account.

Here is the notification:

An update on Google Friend Connect

1 week ago by A Googler
In 2011, we announced the retirement of Google Friend Connect for all non-Blogger sites. We made an exception for Blogger to give readers an easy way to follow blogs using a variety of accounts. Yet over time, we’ve seen that most people sign into Friend Connect with a Google Account. So, in an effort to streamline, in the next few weeks we’ll be making some changes that will eventually require readers to have a Google Account to sign into Friend Connect and follow blogs.

As part of this plan, starting the week of January 11, we’ll remove the ability for people with Twitter, Yahoo, Orkut or other OpenId providers to sign in to Google Friend Connect and follow blogs. At the same time, we’ll remove non-Google Account profiles so you may see a decrease in your blog follower count.

We encourage you to tell affected readers (perhaps via a blog post), that if they use a non-Google Account to follow your blog, they need to sign up for a Google Account, and re-follow your blog. With a Google Account, they’ll get blogs added to their Reading List, making it easier for them to see the latest posts and activity of the blogs they follow.

We know how important followers are to all bloggers, but we believe this change will improve the experience for both you and your readers.

Posted by Michael Goddard, Software Engineer

Tuesday, December 29, 2015

Back to Life

I went out into the world yesterday for the first time in two days.

Safeway. Home. Butchers. Mom's.

We sat and talked about how we enjoyed Christmas before doing a Target run. A sweet little restaurant, Mimi's Cafe, was calling to us from across the parking lot. We sat for almost two hours, still talking. Then, mom walked with me through Trader Joe's before I hauled everything home.

I coughed a lot less that I expected. At one point, I was trying to hurry to the other side of Trader Joe's when I realized that I was not coughing on exertion. A good sign. I also realized that I was feeling pretty good. Maybe I have turned a corner.

We went to Rick and Natalie's last evening. They had simple appetizers and it was get to get caught up on their lives. Melanie had turned from a young college student to an adult in a few short months. She was such fun. She was walking that fence of being at home with her parents during breaks and wanting to be back at school and her life. She is a math major. One sharp cookie.

Today, I am staying close to home, though I am going to try to take a short walk to see if I cough a lot. I need to balance the checkbook and write out the bills and maybe take my toenails in for a painting. Early this morning, I am going to cook my breakfasts and lunches for the week. Be prepared. That's my motto.

Monday, December 28, 2015

Facing the Music

We did nothing except eat yesterday. We never left our chairs. With the prednisone on board, I feel like I have gained 100 pounds. My goal today is to drink lots of water, get out of the house and eat lightly because later this afternoon, we are going to Rick and Natalie's. Yes, we are going out where I have no control over the food. Great. But, it will be fantastic to visit with them and, as a special bonus, their daughter Melanie is home from college so we are excited to see everyone.

All the homemade goodies from the neighbors were either eaten or tossed by yesterday afternoon and I am bringing in my weekly groceries today. Only food on my diet. Back on the horse...

One present from Lee and Jeff was a FitBit mini. It took me a bit to set it up but today will be my first day wearing it out into the world. Another reminder to keep moving and to keep my mouth shut and empty of food!

My cough begins every time I do anything. No, it is not as bad as it was and I do feel so much better. There are three more days of antibiotics. My retina issue seems to be the same, no improvement and it is still driving me nuts.

We are thinking of British Don this morning, who spent the holiday with his daughter in Nashville. He will be trying to make a connecting flight home through Dallas this afternoon. Ah, good luck with that! I have a feeling we may never see him again!

I always love the week between Christmas and the New Year. It seems like extra holiday time. Family time. Another week off before we have to get back to our lives. Today, mom and I will be together for a few hours, have a nice lunch and food shop. I am also sure we will be talking non-stop!

Sunday, December 27, 2015

Christmas Recap

Wow. We needed a day to recover yesterday. Christmas was fantastic. We were joined this year by Russ' sister and two of her children. Mom and I fell in love with the 15-year old son who walked in wearing a Wookie jacket and a wicked sense of humor. We wanted to take him home with us. His 11-year old sister was totally in love and awe of my niece Shelley and it was fun to watch as she just could not leave her side.

The theme of the Lewis and Clark expedition was beautifully thought out. We arrived for a lunch of buffalo sliders, olives, nuts, watermelon pickles, oysters and an array of bison, pheasant, duck and venison sausages.

Then the presents were opened. Per their request, I put a binder of 22 recipes together as one of the gifts to Shelley and Russ. They loved it. Lee and Jeff gave mom a pair of boots and she wore them all day! I think I am the last woman on earth without a pair of boots! I was thrilled to get a new small walkman so I can listen to the ballgames and food programs while working in the garden on Saturdays. Michael was thrilled to open beautiful goatskin gloves from Filson as his major present. William introduced us to the Seattle area company, Filson years ago and their catalog now arrives in the mail. Michael used to take it to work to share it with everyone. Stunning. As William would say, you just need to buy something from them once because it will last forever.

My brother's wife, Betty from New Mexico sent placemats for the theme (see above photos). They had "elk horns" in one corner and a cargo pocket filled with little shovels and flour sacks and other camping gear in miniature. Adorable.

After awhile, dinner was ready. Elk from Kansas continued the theme, which was served with a cooked down cranberry sauce. They also made au gratin potatoes without cream in a crock pot, a simple salad and biscuits. So very delicious. So very perfect!

My cough is still pretty bad, though better. I do feel better so I hope the prednisone and antibiotics are working together to calm everything down. The goal today is to stay in, pay some bills and not much else. We will have to bring groceries in tomorrow but I really don't think we will leave the house today.

My brother sent a photo of their backyard as of this morning. The snow has fallen and is being measured in feet! A rare event for them. There will be a snow day tomorrow, an extra bonus!

I so hope your Christmas was filled with friends and family and fun.

Friday, December 25, 2015

Merry Christmas

Merry Christmas. May 2016 bring lots of peace and happiness.

My wish is that I am able to offer hope and information for anyone struggling with a lung disease or other horrible bad diagnosis. Please know that you can still live a full life after such a diagnosis. Don't throw the towel in. Don't give into the disease. Work hard to stay active.

Take care, dear reader. I wish you all the goodness that life has to offer.

Thursday, December 24, 2015

Christmas Memories

Merry Christmas Eve! I hope you are ready for all the fun of Christmas. For us, it is going to be a nice lunch with my mom today and then we will prepare for the long drive to my sister's home tomorrow.

I was so lucky to be raised in a household where my parents adored each other. That allowed for such a feeling of security and love that we were all able to spring into life from there. There was so much laughter and singing and music and card playing and long conversations around the dinner table. Those are the memories that flood my brain this time of year. I am so very grateful for my fantastic childhood.

My dad never forgot what it felt like to be a kid. Christmas was extra special. It was the anticipation of Santa and all the presents that were even better than the actual gifts! And boy, did he build that anticipation! We woke up, looked under the tree, chose one present each, got dressed, went to Mass, ate breakfast and then we were able to open each present one at a time, taking turns. It took hours. Lots of little things. My parents had a lot more love than money. It was such a magical time of year.

I tried to give William that same feeling and even added a couple of other traditions. Before Christmas, we would get all dressed up and go to lunch at a fancy place in the city after seeing the huge Christmas tree in Union Square. We would wander through Gump's department store with it's old staircase and hidden rooms filled with exotic goods and very special Christmas ornaments. We would press our noses up to the glass in front of the fine crystal in awe. Sadly, they moved a bit further down Post Street and it has never been the same. It is still a magnificent store but more modern.

And Christmas trees.

My dad would spend days decorating the tree. The old-fashioned huge light bulbs were carefully placed but what would take the time were the icicles, which most people just tossed onto the tree in the 50s. No, not him. He would work every night after dinner, with Christmas music playing, placing every single one individually on each branch. We could help but it was very tedious work. He loved it and was very proud of his work each year. In their later life, they often had flocked trees and he had to let the icicles go.

Michael and I moved into our current house when William was a year old. It really is all he remembers. It has very high cathedral ceilings and for most of his childhood, we had an 8 or 9 foot tree. I have photos of William on Michael's shoulders placing the bulbs on the highest limbs. Icicles? They were out of fashioned and I just didn't have the patience.

I hope William has the same feelings of being raised in a home where it was a fun household run by parents who adored each other.

Happy Christmas Eve!

Wednesday, December 23, 2015

Final Doctor of the Year

I finished all the baking for the neighborhood and delivered it all yesterday. Traditionally, we share homemade goodies with each other, which also offers the chance to wish each other a Merry Christmas. I love our little cut-du-sac of nine houses.

This year, I made small lemon tea bread loaves but I ran out of sugar, was baking in my pajamas and the one grocery store in town was probably packed to the brim. I put a call out to Leslie to see if she had some sugar. She delivered it to my door in her pajamas at 10:00!! We had a good laugh.

Today, I am going to pay some bills before going over the pass to see the retina specialist I met last Friday. My eye has not changed, which is good. No detachment yet! I will be interested in his assessment.

Even with all our rains, my pots still need watering so I will be out in the gardens this morning. I may even run into town, after a shower, to buy Leslie some replacement sugar!

I am still not feeling great though it is the final day of 40 mgs of prednisone. It will step down to 30 mgs for three days beginning tomorrow. I was hoping to have more energy but the only thing I can feel is that I awaken a lot during the night. Hopefully, that will change soon. I am also trying to be super aware of my food intake. I am hungry all the time and I know I could pack on a few pounds. I just can't as it is too hard to work it off again!

Tuesday, December 22, 2015

Diet Thoughts

A friend has struggled with her weight for at least twenty years. She was rather horrified when I was on my liquid diet and just knew that I would not keep the weight off. Well, it's been over five years and I am over ten pounds lighter than when I stopped the liquid diet and moved to my current low carb, low fat diet. I work on it everyday. It is not about the size of my clothing but about being within 25-30 BMI to begin the lung transplant process if my lungs crash.

My friend wants to do a liquid diet but also wants food. She does eat sugar everyday, which makes a liquid diet difficult. I am trying to help her to understand that a true liquid diet, supervised by a physician and purchased at a hospital program is short term. Quickly, on 800 calories per day, the weight comes off. The diet is designed to insure you are never hungry but also never full.

I found my three months on the liquid diet very freeing. I never had to think about food. It was there waiting for me, there were still choices I could make each day and the weight fell off quickly.

She keeps saying she wants to do it her way but...that hasn't worked so far.

So, it is the New Year soon. Most people vow to lose weight. If you need to lose serious weight, please see a nutritionist. There are many options and you will have a check up to insure you are healthy enough for a serious diet.

Exercise is important but it is more important to get the weight off. You will feel so much better.

Food for thought.

Monday, December 21, 2015

New Computer

I have a new computer. Well, a slightly previously loved computer. My computer would not update the last five operating systems so I am now in hog heaven. It is like having a regular TV and suddenly getting a huge plasma TV. I feel so current! Thank you, British Don!

My eye is better but I still notice the constant veil that moves around as I try to see through it. No more floaters or flashes of light though, which is a good sign.

Every year, all the neighbors on our street make homemade goodies to share with each other. I usually make sugar-glazed walnuts or baklava but this year, I will be sharing mini loafs of Lemon Tea Bread. After being with mom today, I will do the baking after I get home this afternoon. Every house on the street has Christmas lights on at night and people are beginning to drive by. The house across the street has never had lights. Ever. Love the new neighbors.

I will begin the 40 mgs. of prednisone this morning along with antibiotics, which I hope makes me feel better and curb the cough. I so want to have my stamina back and just feel better.

Sunday, December 20, 2015


I did very little yesterday. I did do a quick Safeway run before having my eyebrows waxed. Such a luxury. Many years after I got sick, Ron next door mentioned his teenage daughters were out having their eyebrows waxed. That gave me pause. I am an adult. I can do it, too. It hurt like heck the first time but now, I am prepared for it and it really is not bad.

The last of the Christmas presents arrived on our doorstep, it was wrapped along with the last of the gift cards and everything is ready to take to my sister's house. Lee phoned last night and she shared the food plans for our Lewis and Clark Christmas. It has been our tradition to present food from different countries at Christmas. Food the grandmas are cooking in their kitchens. This year, they chose food that Lewis and Clark would eat but food that would also be traditional to that era. Elk is being served for dinner and buffalo sliders are being served at lunch. We will all be learning about Lewis and Clark so it should be interesting and delicious!

Dinner last night was the biggest luxury! The high school basketball team's fundraiser featured three-half chickens for dinner, potato salad, green salad, garlic bread and cookies. It will more than feed us for two nights of dinners AND it was delivered to our door.

Today is a big day. British Don (a major hardware engineer) scored a huge bonus so he is buying a new computer. He knew that I was going to buy a new one next year as mine is so old the latest software can't be downloaded so he is GIVING me his old one. His very high level fancy old one. Better than I have ever owned. But wait, there's more! We are meeting him at noon for lunch before he loads the computer for me. That alone is a huge gift!

Saturday, December 19, 2015


I knew it was going to be a wild day but OH MY GOODNESS! It was so much more.

On Thursday, I noticed I had a lot of floaters in my right eye. Lots and lots of floaters. Long strings of moving floaters and flashes of light. Later in the day, I noticed a veil that moved whenever my eye moved. It felt like there was makeup or cream in my eye and I couldn't clear it.

Friday morning, the floaters were mostly gone but the veil remained. It felt heavy in my eye. I phone my favorite glaucoma eye doctor's office at 8:30AM and was reminded that he was dancing and singing his heart out in Cuba. They referred me to his on-call doctor. After an interview with his nurse, she said I needed to see a retinologist ASAP. It was a suspected detachment. Very bad.

I was with mom. She was very worried. While waiting to hear if we were able to get to an appointment with this huge group of specialists, we just hung out and talked. And had lunch. Finally, the doctor phoned and, after a few questions, said I needed to be seen ASAP. An appointment was made. Michael was called. I was on the other side of the pass and Michael had just arrived home. He met me half way, we left my car and we drove to San Jose together in Friday late afternoon traffic. A challenge.

The office was full. We were just happy to be there. After lots of tests and a really good exam, it was pronounced that I have an acute posterior vitreous detachment OD. Lovely. Here is a quick explanation (love the first sentence!): However, as we age, the vitreous forms liquid pockets that cause surrounding vitreous to collapse centrally, providing space for the hyaloid to separate from its point of attachment at the back or posterior of the eye at the optic nerve. This separation is called a posterior vitreous detachment (PVD). In the vast majority of patients, the process of separation has no symptoms and goes unrecognized. In a few people, however, this separation is noticeable immediately due to one or more of the following symptoms: 
  • Flashes of light called photopsia
  • Showers of floaters
  • Darkness of the peripheral visual field.
So, I just need to be watched to make sure it does not detach. They sent us home in very busy Friday evening traffic. We arrived home, exhausted but thrilled that I did not have to have surgery. 

We had one hour to shower and dress for the parties. Joe and Leslie's house was wonderful and it got us in the spirit to see all the neighbors and their friends. Then, hopped back in the car to San Jose again for Mark's birthday party. It was rather a dud but I met his really new girlfriend. We hit it off so I had a nice time. We got home before midnight, fell into bed and slept until 8AM. 

It is going to be a quiet day today. I am moving slowly and we are having dinner delivered to us as part of Leslie's daughter's basketball fundraiser. Chicken dinner!

Friday, December 18, 2015

Two Parties

I feel so much better after eleven hours of sleep. I was totally done. Exhausted. Spent. Michael finally mentioned that it was okay to go to bed at seven. Boom. Snoring by 7:15!

My numbers in rehab were horrible and I really fought to do my workout. Coughing a lot. It was beginning to become productive but it was clear. Dr. K. told me to wait a couple of days for it to turn colors before beginning the antibiotics.

Mom and I are having a quiet day together. Finally. Our schedule has been too busy with lots of doctors for both of us. We are planning to do a Target run and have a nice lunch. I am going to need a quiet day as tonight is going to be wild.

Our neighbors are hosting a little party beginning at 7PM tonight. Most of the neighbors will be there and we plan to stay an hour or so. I play with Leslie in our little orchestra and her Irish fiddler group will be playing tonight. Fun.

Michael's 30-year old friend Mark (from where he worked) is having a birthday party at a club about 45-minutes away. It BEGINS at 9PM. First, it is a club. That means lots of young people, drinking young people, dancing young people. Loud. Bad music. But, it should be fun to watch it all from afar. Second, it is late for us. Michael has promised me that we are staying only an hour. I want that in writing!

Tomorrow? Quiet. Last minute gift card shopping and a bit of wrapping. We will probably hear from William. Once I know when he will arrive, I can begin to plan all the food. First up, making baklava. He will be surprised. I haven't made it for him in years.

Thursday, December 17, 2015

The Dreaded Appointment

So, do you remember the horrible last appointment with Dr. K. in August where she embarrassed me in front of my family and was not the doctor I knew? It is the reason I am seeing the counselor (who is also a life coach and I am rather enjoying our visits!) because she thought I needed help dealing with a chronic illness. She referred to me having to leave my job OVER 10 YEARS AGO. I have come so far, have learned so much and have created a new life.

On Monday, I received a private email from Dr. K. thanking me for all my work with other people struggling with ILDs and my work with the Board. Wow. So unexpected.

I was not looking forward to seeing her yesterday. The counselor had prepped me for the visit with fantastic strategies. I kept reviewing them in my head: calm, breathe, both feet on the floor, back to the back of the chair and not lean in, don't just talk but wait for her and so much more.

The morning appointment with the nutritionist went really well. I have maintained the same, exact weight for over a year. Down to the .0. I will see him again in a couple of months. Off I drove to the other campus, had a quick bite of lunch and worked my way to the chest clinic. It was marvelous to be welcomed by everyone! Michael and I had spoken with the staff at their retreat months ago and the entire staff came by to say hello as I was checking in. A good start.

As I was walking to my chair to wait for the appointment, Dr. K. was walking down the hallway, thanked me again and HUGGED ME. Yes, you read that right. This is not a warm, fuzzy human. This was stunning to me and almost threw me off my game! I was expected a drilling and I got a hug?!?

She called me in, I sat, hands folded and not speaking and we began. Calm. She was marvelous. She reviewed my entire medical file. After listening to my lungs, she upped the prednisone and added an antibiotics as something was beginning to brew.

This was not at all what I had anticipated. It was surreal. It was marvelous.

I will meet her again in three months. We will see if the trend continues!

Tuesday, December 15, 2015

Back Home Again!

It's Tuesday at 2:30 and we are home. What a morning! Traffic was horrible up to the farthest campus of my university hospital deep into the city. It took almost all of my two hours to get there, usually a 45-minute jaunt. The doctor was running late. She took one look at all the spot circled in red ink and started to laugh. She loved it! After freezing about thirty pre-cancerous spots on my legs, arms, back and face(!), we hugged and I ran to the car. Michael was a-waitin'.

He left just after I did this morning and drove William's mustang to his friend's garage for storage for a couple of weeks. I had to pick him up there after my appointment, we drove to that fantastic restaurant right on the water and we split a crab sandwich. It was delightful. Afterwards, we drove down the coast, the water was calm, the tide was in and there was no wind but very cold. We bought presents for the housekeepers and I am making Sugar-Glazed Walnuts for the rehab staff today for delivery on Thursday along with Amazon cards.

Christmas music is on Pandora, I am going to start baking, the house is toasty warm and all is right with the world.

Until tomorrow.

I have to drop Michael off north of us then find my way to the nutritionist's office, just one floor above where I went today. After I see him, I have to jump in the car and drive cross town to the main campus of my university hospital to see Dr. K. Going to be an interesting appointment. I am not feeling great so we will see what she thinks about it all. And I get to go to orchestra rehearsal afterwards. A very, long, exhausting day ahead.

So much

So much to blog.

So much fun yesterday. I got to spend some time with Natalie at her school watching rehearsals for their Winter Concert tonight. Mom and I had a ball. What a school!

So much to write but I have no time! I must be gone within the hour to the dermatologist in the city and I still need to shower and eat breakfast! We slept in by mistake!

So sorry to say, I will write when I get home this afternoon.

Monday, December 14, 2015

One Concert, Two Doctors

Monday. Here we go. After spending hours on Sunday buying and wrapping all the Christmas presents, I am going to be peering into the UPS store window at 7:50 waiting for them to open at 8AM. Why so early? Because mom has to have a shot for her bones at 9AM and she doesn't know which campus. So, we are going to one and hoping it is there and not the primary campus, which can be a zoo.

All morning will be directed towards our 12:30 meeting at Natalie's school to watch her student's rehearse for their concert tonight. She has done amazing work building this program, something I never could have done. Brilliant! We can only stay for 45-minutes as mom has an eye appointment at 1:45 at yet another campus.

I won't be home until around 4PM where I can pause for a moment before going to a goodbye reception for the receptionist at our dentist's office. I think we have known her for over thirty years.

Hang on, you won't believe tomorrow's schedule! I may not survive the holidays!

Sunday, December 13, 2015

Beginning to Feel the Spirit

I am feeling less overwhelmed this morning. Yesterday, I lightly decorated the family room, the little tree is flashing lights as I write, and we went shopping last night. When I read Shelley's text asking for five recipes as their Christmas present (as well as some wine), I became possessed. Culling through my files, I found 22 of my best recipes. I included those that changed the way I cooked by adding confidence to try more. Also included, are two of the most detailed and difficult recipes of my favorites. They taught me techniques. Life changing recipes. They are now in a 1/2" binder slipped into plastic protectors with a photo of one dessert on the front cover. I typed a sweet note for the front page followed by the Table of Contents. It is done.

In the afternoon, we drove over the pass to the very high end liquor store where Michael had good luck to spot his rare and difficult to find bourbons. It was busy but not packed. We were surprised! We found 17-year old Wild Turkey Masters Keep for William. A rare find! We bought Whistle Pig Rye for Jeff (Lee's husband) and finally, Maker's Mark Cask Strength and two bottles of fine French Rose wines for Shelley and Russ.

Done, done and done.

We are up at 5:30 this morning to prepare for our 8AM adventure at the Mall. We are shopping until there is nothing left on our list. Well, I still will need to buy gift cards, buy See's Candy and nuts to make presents for the rehab staff. But, everything else will be ready to be wrapped and stored for hauling to Lee and Jeff's Christmas morning.

Today's shopping is all about us! We need to finish shopping with mom's money for our last presents, finish shopping for Chip and Betty and Michael's mom so they can be sent in the mail tomorrow.

But first, another cup of coffee, please.

Saturday, December 12, 2015

Talking and Listening

It was one of those breakfasts where friends who had not seen each other for months just picked up where we left off.  Dolores was a parent at the school where I got sick who gently kept in touch throughout the entire process of my illness from the very beginning. She is that thoughtful and that kind and that real. We see each other a couple of times a year but we seem to just continue our conversation. So easy. Always so interesting. It is a pure pleasure to spend time with her.

Afterwards, I was able to see mom for a couple of hours. She had lots to show me and needed some help on a few issues. I giggle when I think that tonight she will be playing poker with the guys as she has been on a massive winning streak. She is hot! I hope it continues.

From mom's, I drove to the counselor's office and we talked about Wednesday's appointment with Dr. K. It will be the first time we have seen each other since she embarrassed me, misread a situation, went over the top and insisted that I see a counselor to help with managing my chronic disease. As the counselors told me, I have done an amazing job managing my disease. We strategized and I am feeling confident going into the meeting.

Earlier, I had asked my niece what she wanted for Christmas. Apparently, Shelley has talked with her sweetheart about my cooking as he suggested that I share five of my best recipes with them as their present. Is that so sweet or what? Last night, I went through my recipes, not just my diet recipes but my dinner party recipes and things like truffles and peanut brittle and lots of desserts. Today, I will find a binder for the approximately thirty recipes. The best of the best.

The little tree for the family room will be trimmed today and lots of little decorations will be set up as well. Nothing else. A rather quiet Christmas.

Friday, December 11, 2015

Feeling Anxious!

We met with mom's primary doctor, she increased her medication for high blood pressure and mom spoke with her about her recent financial anxiety. She got her monthly report the day before, expected a good month and learned she lost another $3,000. Apparently, she burst into tears, compared it to other months, called her broker and still felt she didn't understand why she lost money again.


The doctor started her on a drug for immediate relief while another drug takes about a week to kick in. Short term and long term. We all believe that when her anxiety is under control, her blood pressure will go down.

We had a quick lunch before my eye doctor appointment, my eye pressure was really high, we are dealing with a change in eye drops and trying not to fall into the donut hole before the end of the year. A challenge! It was nice get home and, as an extra bonus, Michael cooked dinner last night. Pork chops and broccoli. Delicious.

This morning, I am so looking forward to having coffee and a goody with my friend Dolores. Mom is expecting me afterwards then I have an appointment with my counselor to work on what I will say to Dr. K. during my appointment next week. Last time we saw each other, it didn't go well. It occurred to me that I am seeing a counselor specifically to learn how to talk to my doctor.


It is another long day today. I need time off but forget it! Christmas shopping and decorating the house takes precedent this weekend. Now I am feeling anxious!

Thursday, December 10, 2015

Wash Your Hands

Rehab boy, Dick phoned yesterday to confirm that he does have a cancerous growth on the outside of his lung. They have proposed radiation therapy but no chemo at this time. He was trying to be positive but I think he was scared. It explains why he suddenly needed oxygen about a year ago and just has not felt well. My job will be to make him laugh every time I see him!

We were invited to Lori and Dave's house for dinner on Saturday but she phoned with a problem. She got a cold last Saturday but was back to work yesterday. She was concerned that I might not want to be exposed to her yet. I kept thanking her! So many people don't think about their "minor cold" exposure to my prednisone-filled body. We decided to cancel and re-schedule on January 1. What a nice way that will be to welcome in the New Year.

There is a very nasty cold going around here. Apparently, it is taking two weeks to fully recover. I think it was spread around during Thanksgiving and it just blossomed. We are washing our hands and trying to be aware of people coughing around us. We immediately leave the area.

Michael and I had a lovely day together yesterday and I went to the orchestra rehearsal last night. I slept so hard that I didn't even hear the rain.

My mom called to ask if I could drive her to her primary doctor this morning. Dr. K. wants to look at her blood pressure issues. It will also give me the opportunity to mention mom's desire for a very small dose of an anti-anxiety drug. So, in the rain this morning, we will be together for that appointment and a quick lunch before my eye doctor appointment in the afternoon. Doctor day!

Wednesday, December 9, 2015

Holiday Pressure

I had a list but felt overwhelmed yesterday. So much to do in the house and yards. So much to do for Christmas. I began with making the bed then phoned my brother. If I made and sent the baklava yesterday, it would arrive on Friday and often, they hit the road on Fridays. I wanted to be sure they would be home. We had a nice chat and I think he is touched that I am making him this most favorite treat to celebrate his 6th patent.

Making baklava is a process and it can't be hurried. It came out of the oven golden brown and sat to cool after I poured the hot honey over it. By noon, it was on its way to my brother via UPS. In the meantime, I balanced the checkbook, paid the bills, emptied the dishwasher, refilled our medication containers, started our Christmas list, made the food shopping list for today then did the yard work after lunch. A very satisfying day.

Our little car was given a new ignition switch yesterday, which will allow me to go to orchestra rehearsal tonight. My bass only fits into that car. But after our hair cuts today, we will go over the pass to run errands and food shop. It will be nice to be together all day. We have to get serious about our Christmas list and begin to order stuff online. Time is running out!

Tuesday, December 8, 2015

Empty Nest

The house felt so empty last evening. Christien and I had a lovely lunch after my visit to the dentist, toured the area where she used to live, decided not to visit the school where we worked and made it early to the airport so she could pick up the Australian dollars she ordered before the flight.

The ignition switch needs to be replaced in my car today, so I am staying home. I have a long list of things to do: balance the check book, make the shopping list for our food this week, make baklava for my brother and get it in the mail, make the Christmas list of all we have to buy, wash and iron the guest room sheets, decorate the house for Christmas, cut the grass and water the pots. Just a short list!!! I decided not to go over the pass with the Porsche.

I have a wild week ahead and next week is worse! This time of year is great much to do.

Monday, December 7, 2015

Bon Voyage!

Happy 9th birthday to my friend, Winnie. We looked at a house in the neighborhood yesterday with her mom Natalie. I so hope they can somehow win a bidding war and buy it! I would love to have them close by and it really was the perfect house.

Our company is leaving today but really, Christien is the easiest house guest ever. Yesterday, we had a lovely drive down the coast in a light rain, had soup at our favorite place, visited the goat farm then made it home in time to meet Natalie. Before you know it, I was making a fish dinner, doing the dishes and it was bed time! The day just flew by.

Today, I have a quick visit with the dentist then we are going to visit the school where I got sick. I think. I do want to get a good late lunch into Christien so she has a base for the long flight to Australia later this afternoon.

We are down to two cars and one needs attention tomorrow. I need to drive Michael's Porsche if I want to workout at the rehab class. I hate driving a stick, especially up and over the pass, but I really want a good workout. A dilemma. I just don't know if I will stay home or go for it.

I do need time to balance the checkbook, make baklava for my brother and just rest up. Chip was just awarded his 6th patent, thus the baklava. He loves mine, as it is not sticky sweet, and shares it with his co-workers. I'd like to get it in mail to him ASAP.

It has been a really nice change of pace with Christien here: lots of Christmas music during dinner in the dining room, no TV on, no pajamas at 5PM. I will miss her!

Sunday, December 6, 2015


Mom meet Christien. Christien meet mom. And that is how they met after all these years. We had lunch together, talked non-stop before heading home. She was excited to see our new tunnel and the lights on the new Bay Bridge so off we went to the city. The tunnel was very impressive but the lights were not dancing on the bridge yet. Still setting them up. I cooked a quick roasted chicken dinner then we talked until bedtime. A really nice day with a dear friend.

It is raining a bit today but that won't stop us from a drive down the coast for lunch and a visit to the goat farm. Dinner tonight will be some fresh fish covered in almonds over a bed of steamed spinach. YUM! But today, we will probably walk downtown or go for a walk along the ocean during a break in the rain.

We are also meeting Natalie this afternoon to look at a house in our neighborhood. I bet they put an offer in.

It is so nice to have a friend around for a few days. Fun to have a conversation without a phone or computer involved.

Saturday, December 5, 2015

Choose a Drug

Christien is on the plane! It is going to be a fun few day!

Yesterday, mom and I checked out one of the new apartment complexes she was considering and it was liked an armed camp. Awful. We ran her blood pressure cuff and computer back down to the university hospital, had lunch then headed home.

Someone just asked me if I were to choose between the two new anti-fibrotic drugs, which one would I choose to take? Years ago, I was on Cellcept, with pathways through the bone marrow. Medicare refused to pay for it as it was off-label for HP so we changed to Imuran, a drug invented in the 50s by a woman biologist with pathways through the liver. My numbers were much better with the Imuran than I was getting with the Cellcept and I didn't have to have weekly blood tests.

The two new anti-fibrotic drugs: Pirfenidone and Nintedanib. The first is a brand spankin' new drug and the other is an old chemotherapy drug. The pathways with Nintedanib are clear. The doctors understand how it works. The Pirfenidone has totally different pathways, had proven that it greatly slows down the expected loss of lung capacity of patients with IPF but they really don't understand specifically why it works.

You can see where we're going here.

If I had to choose, I would start with a conversation with Dr. K. I would ask her opinion about which drug would be best for my specific disease and my level of illness. I would probably listen to her, even if I didn't agree initially, I would give her recommendation a shot. My gut tells me that if she gave me the choice, I would choose the Nintedanib.

Friday, December 4, 2015

No Yawning

All plans were toss out the window yesterday. Mom phoned around 9AM with a reported blood pressure of 199 over 110. Entering stroke territory. I took her to her university hospital ER, they made sure she was stable then referred he back to her pacemaker doctor, we went upstairs to just check in to see if he was around, ran into our favorite cardiologist (gorgeous woman with leather clothing and always tall stiletto heels), she set mom up with a 24 hour blood pressure monitor test kit, which we have to return today.

I think she needs a change to her medication but the bottom line is I think she is very anxious. She has been driving herself nuts with her financial numbers. Her rent has gone up $233/month over the past almost four years. She thought it was so much more. When I finally pointed that out to her, she felt a little better but still...she is nervous. We are looking at a new facility today but I know she is not going to like it. Very inexpensive and not based on income but I think she would have to begin in a studio and transfer to a 1-bedroom when one becomes available. There is no way she could function in a studio. I think she just needs to see her other options and realize that she has a fantastic deal where she is so she calms down a bit. I have also suggested that she talk with doctor about some support with a small dosage of anti-anxiety medication for a little bit. She thought that was a good idea.

My other worry: Michael has been yawning often and loudly the past two days. Something new. After reading on the internet, it could be low blood sugar, dehydration, the need for more oxygen in his blood due to a heart valve problem or...nothing.

Now I am anxious

I reminded him of our plan this morning: I am scheduled to die first, not him. I'll kill him if he beats me to it. He laughed and promised not to die first. I think I may try to get that in writing!

Thursday, December 3, 2015

A Bit of Boredom, Please

I want to be bored. I want to have nothing to do, stare into space, take endless naps, watch horrible Christmas movies and complain that I am bored. This entire year has been on fast forward. There was never a dull moment. I look over to the newly retired Michael and ask when the lazy days of retirement begin? It has been a couple of months and we wonder how he ever fit working into our schedule!

And it is not slowing down.

We are gearing up for Christien's visit on Saturday through Monday. The housekeepers are due today around the same time as a storm. Forget about going over the pass for groceries as I am worried about getting back in time for a dentist appointment at 12:30. I cracked a crown. Merry Christmas to me! Thankfully, Cory was able to fit me in as I am not in horrible pain yet. So this morning, I need to be out of the house very early, waste some time in town then food shop at Safeway. There was a fun orchestra rehearsal last night, I woke up very early this morning so I am looking forward to a nap this afternoon. I hope. If nothing else happens.

And, we both need a shower but ours is out of commission. Michael replaced the caulking around the sinks, toilet and in the shower on Tuesday afternoon and it needs 72 hours to cure. We try not to stand too close to people now and our hair...well, it's not good! There is a negotiation going on whether or not we can shower Friday morning. For the sake of the general public, let's hope I win.

Wednesday, December 2, 2015

Further Down the Road

Years ago, I would sit in the empty church where Michael and I met playing music and tried to take all my fears of the bad diagnosis and leave them there. I would sit quietly and not ask for a cure but for understanding and guidance. What was I to do with this horrible diagnosis because I was not going to fall to it? I was not going to die on cue, as expected. I was not going to be depressed or miserable to live with. I was not going to give up in anyway.

As my life with a bad diagnosis unfolded, suddenly I found myself being able to comfort and give information to people who were newly diagnosed. I had a gift for it. It took a few years for me to realize that this was the reason I got this disease. I thought my job working with kids, music and business was the peak of my life. The culmination of my life experiences. The perfect job. Then, I realized that it was only the portal to becoming ill and that experiencing this illness is my real life's work.

Sitting on a Board at our university hospital, speaking with newly diagnosed people in pulmonary rehab, being a member of the ILD Support Group and speaking to groups of doctors has been so satisfying for me. I feel like I am making a difference. The most time consuming, but most satisfying, is when I am speaking one-on-one with a person or family dealing with all the issues of having a chronic lung disease. I so hope I offer hope and confidence and information.

I often say that I am just a bit further down the road of experiences with the disease.

Today, Michael and I are having lunch with a couple who need a conversation. It is an honor that they are allowing me to meet with them. Hopefully, I can offer information and hope.

Tuesday, December 1, 2015


I feel like my DLCO is lower than usual. I worry that maybe some mold has found a home in my lungs. Today at the rehab class, I am going to see if my coughing is worse and will note my sats during exercise. If they are not my usual numbers, I will contact Dr. K. today.

In the meantime, I have to do a quick dusting and vacuuming of the house incase our company swings by tomorrow. We are actually meeting them for lunch at a restaurant at the harbor. I also need to make Michael some deviled eggs for the next few breakfasts.

Yesterday, mom and I went to DSW and came away happy girls! I bought a pair of much needed running shoes for the gym and a pair of black flats for the winter. Mom also found a pair of shoes, we were given huge additional discounts and walked away for a total of $105.00 for three pairs of shoes. Crazy. We had a fantastic lunch at Nordstrom and I bought a new pair of workout pants (also with my birthday money) on our way out the door! And an extra bonus: it rained yesterday morning! A good day!