Living Well with a Bad Diagnosis - Lung Disease

Monday, December 31, 2012

Welcome 2013

Tonight is the night to put 2012 to bed and awaken to 2013. It will begin with champagne in front of the fireplace, music, conversation about the past year and what our plans are for the incoming one. I will also guarantee that neither of us will make it to midnight! We are such wimps!

The first day of the new year is traditionally when we remove Christmas from the house. We work together. Afterwards, the house looks clean and fresh again. A good beginning.

Waiting for Michael yesterday, I wandered through a book store and found a great DVD and book on yoga. That is the new focus of my year. So out of my comfort zone. So much to learn.

Here I come 2013. I am not as well as this time last year but I am still standing. I am still learning. I am still living well with a bad diagnosis.

Happy New Year!

Sunday, December 30, 2012

Thoughts on Living Well Beginning Today

Those of us living with a chronic fatal disease may sometimes feel hopeless. We don't move forward. We are angry and bitter. We have to live with new limitations. 

A new year begins. It is time for a fresh outlook. No excuses for not living well with a bad diagnosis. I thought these words of advice might be helpful:

"You are not limited by what you have been or what you have done. You are empowered by what you choose to do and who you choose to be.

You cannot be held back by what you know or don’t know. You are propelled forward by what you decide to learn and by making meaningful use of your knowledge.

You never have to be stuck where you are. There is always a way to get yourself moving toward where you wish to be.

There is nothing to be gained by blaming your misfortune on anyone or anything. Instead, accept where you are and embrace it as an opportunity to move on ahead.

Whatever pushes against you, also gives you a steady platform upon which to build. Whatever seems to be a limitation, is a limitation only as long as it seems to be.

Choose your direction and go. Refuse to allow anything to stand between you and the authentic fulfillment you seek."
       Ralph Marston

Saturday, December 29, 2012

Goodbye 2012

2012. Happy to see it go. It started so well with a week in Palm Springs last January, swimming and just enjoying each other. Mom moving so close to me in March was a gift. It has been wonderful to be together at this time of our lives. My family gathered for Shelley and Greg's wedding in September and we spent more time than usual with our son this year. Michael's 60th birthday celebration with he and Kimberly in Seattle was a highlight of the year for us. 

Still, the bad outweighed the good. 

The worst of the year was developing bronchitis in March and never being able to shake it. My lung capacity and DLCO are still horrible and my overall health is much declined from this time last year. The discovery of my mom's heart issue, Betty's appendix bursting, Chip's broken foot, Lee's job issues and another relative's recent discovery of severe cirrhosis of the liver are all worrisome. So much in one year! 

It also was an expensive year. First, the garbage disposal needed to be replaced then the water heater then all the kitchen appliances and the washer is acting up right now. We had not anticipated any of these expenses. Big ouch. 

Looking forward to 2013? This is the year to look internal for me. What will it be? Yoga? Tai Chi? Something else? I don't know yet. It is still an unopened package waiting to be reveled. Betty still faces some surgery in January for an abscess and hernia surgery. Chip's job is scheduled to end in March and they may have to move. Lee will know if she gets her new job in two weeks. 

My mom says she can never understand why people cheer in a new year. It is an unknown. The new year may bring with it a whole lot of bad. Maybe it is her experiences in life for 84 years that makes her a bit more cautious than the rest of us. 

But, it is a new year. Hope. A new beginning. 

Friday, December 28, 2012

Prednisone, Rehab, Life

During the preparations for Christmas, I noticed I was coughing a lot. That dry, hacking cough of an Interstitial Lung Disease. I felt like my O2 levels were low and began to use my meter to check myself. The levels, without supplemental oxygen, were 93/94 compared to my previous levels of 97/98. My energy level was also low. I made the decision to add back the .5mgs of prednisone to see if it helped my breathing. Within two days, my levels were back to 97/98 and I was feeling so much better. I guess my lungs really need the support of 15mgs. of prednisone.

This is also the time of year that I re-order medications that are ready for reorder but I may not need just yet. I always try to order everything at the end of a current year up to the maximum dollar amount to stay out of the Medicare donut hole, when medications are not covered. If I can do this, it reduces that same amount of money towards the maximum before dropping into next year's donut hole.

Yesterday was my first day back to pulmonary rehab in over a week. I expected to have a tough time but it was really fine. A bit of sweat but it felt fantastic to get back into my routine.

We had simple food yesterday with leftover Christmas beef fillet and vegetables last night. I am meeting a former student from the school where I got sick for breakfast this morning. It is always a joy to sit across the table from him, listen to his challenges at college and talk together about life and world issues. He will graduate this spring.

The house is still a mess, we plan to remove all the Christmas decorations on New Year's Day but the clean up will begin this weekend. I'll start in the back of the house and move forward. Back to normal life!

Thursday, December 27, 2012

All's Quiet

My niece Shelley, mom and William
It is quiet again. We served breakfast to my sister's family yesterday including Quiche Lorraine, fruit, Blueberry Coffee Cake, breads, ham and eggs. They headed home and my little family sat in the living room around a warm fire throughout the morning. We finally got dressed and were out the door to my mom's apartment. We bought her a new 26" TV for her bedroom and William set it up. It was her volunteer day at the main branch of her city's library but after the TV as up and running, she arrived home. She was not expecting us and just loved that we were there, had her new TV all ready for her but, most of all, she loved that we sat and chatted for well over an hour.

Kimberly, mom, William
William lives in a state without In-N-Out Burgers and he was dying for a Double Double with Animal Fries. We all hopped in the car, with mom, and drove to one. There we ate and sat and chatted for another hour. Finally, we dropped mom back to her home then drove William and Kimberly to the airport. It had been a wonderful week and we loved having them with us. We arrived back to our house and it was too quiet. Everyone was gone. Just the two of us left.

While we were with mom, she became teary when giving William my parent's wedding bands. She told him that he loved my dad as much as she did and wanted him to have the bands that represented their love. Everyone then became teary. My huge 6'4"son bent down to hold my little 5' mom. It was a very tender moment and one I will never forget.

Wednesday, December 26, 2012


It was great. Christmas was lovely and I was not exhausted when I climbed into bed at 11:00. We are expecting everyone for breakfast within the hour, but all is ready. Lots of fruit breads and coffee cakes are set out and some ham will be part of the menu.

William and Kimberly fly out later this afternoon. We are trying to arrange to meet Ricky at his shop so they can drive the Mustang before they leave.

Michael and I are looking forward to getting back to our food and exercise routines. I haven't been to rehab since they came a week ago!

Now we are looking forward to the New Year. 2013. Here we go, ready or not!

Tuesday, December 25, 2012

Merry Christmas to You

It is here. Christmas. Magic time. 

So much magic around us, we just have to look. 

I need to remind myself to slow down today and to drink it all in. The memories will sustain me for another year.

My best wishes to you, dear reader, with a special wish of better health in 2013.

Monday, December 24, 2012

Stormy Night

 The storm that blew through late yesterday afternoon was strong enough to kick in an emergency warning for flooding. It was blustery and wet! It was also when we were driving into the city along the ocean to meet Don at his house then William and Kimberly at a restaurant near his house. We slowly made our way around large boulders which had fallen onto the roadway, spotted huge puddles of standing water and fought the winds. After dinner, we drove home over the pass instead of right along the coast as it was much too dangerous.

But, Don was fun, looked fantastic from his newly installed four stints in his heart and had just returned from a business trip to China. We had Italian food including kale, mini meatballs and flatbread pizzas. I am not an anchovy fan so it was not hard for me to resist the pizza. Michael, though, was in heaven. The dessert of a hazelnut torta in a salted caramel sauce was worth the entire dinner.

Hazelnut Torta
We all went back to Don's fancy loft so William and Kimberly could meet his cat. They fell in love. After an uneventful drive home, I feel into bed and slept the night.

Don's cat who jumped onto William's back
I glanced at my phone during dinner to show Don the car the Michael is finishing up and mom had phoned. Mom! She never phones my cell phone. I excused myself and went outside to return her call. She was so worried about us as she had been watching all the warnings of flooding in our area, couldn't reach us and was convinced we were dead! We chatted a bit to make her feel better. I guess a mother never stops worrying about her child no matter how old!

Don and Kimberly
My little chicks had planned to horseback riding across the street before 8:00 this morning for a cheaper rate...I don't think they are going to make it. I think I still hear light snoring!

Today is the big cooking day for me. Everything that can be made ahead for Christmas Day will happen this morning then later we are going over the pass for dinner and to buy the fantastic chicken livers at Max's Opera Cafe to be served as an appetizer tomorrow. As I do not have a group of adventurous eaters in my extended family, I think it will only be the four of us enjoying these chicken livers with hard-boiled eggs on Jewish rye. Heaven.

Michael and William are going to hand out the Sugar-Glazed Walnuts to the neighbors. I am sure they will all love to see William for a few minutes.

So, to the kitchen I go!

Sunday, December 23, 2012

Shopping Sunday

This was our Opus One feast on Friday 
I am having problems breathing which may be the results of the recent reduction of prednisone. It is a heavy, ladened breathing. I am going to add .5 mgs of prednisone with my morning pills to see if that makes a difference. Yesterday afternoon, I slept for two hours as all four of us had a lazy day. Just what we needed. Before the nap, I made five pounds of Sugar-Glazed Walnuts for all the neighbors and William. It is a tradition.

Later, William showed me how to make Shrimp and Grits for dinner and we enjoyed it around the fireplace in the living room.

We are up early this morning so we can be at the butcher's at 8:00 and Trader Joe's by 8:30 and Safeway by 10:00. We want to beat all the people and the traffic and the madness. We are meeting our British friend Don for dinner in the city tonight. William and Kimberly are having brunch with friends and finishing up their shopping before meeting us. Should be a fun night out!

Saturday, December 22, 2012

The Scene of the Crime

We had an incredible lunch with mom and William and Kimberly were able to see her apartment decorated for the holiday. Michael met us at our favorite BBQ place. It is the best one we have found since returning from our southern trips. The owner has gotten to know us and came by to say hello. Will/Kim are huge BBQ lovers when they travel and were impressed by the quality of the pulled pork.

Late yesterday afternoon, we opened a bottle of Opus One that someone gave to Michael. He saved it to share with his son. Instead of serving it with a big hunk of red meat, we went to an exceptional market and William chose several cured meats and cheeses and nuts and quince. The combination of those foods with the wine was excellent. I was able to just take a sip as I was the driver for the evening. After enjoying our goodies together, we returned to the scene of the crime.

After a hilarious evening with my niece and her friend (the entire story told here:, we took William and Kimberly to that same restaurant last night. It is owned by Chuck, who was present and sent over orders of garlic bread after we ordered fresh oysters and the famous crab sandwich for Will/Kim, we had some meat strips. And cocktails. Lots of cocktails. I had three glasses of water!

A seven-piece "Big Band" was playing, we sat in a 1950s era banquette area and watched the dancing. There was an older couple (probably our age!) who clearly had been dancing together for decades and were so much fun to watch. Soon, many couples joined them on the dance floor.

After meeting Chuck and a having nice conversation together, William commented that he was a great guy - so true. We all relaxed. They loved the place as much as Shelley and Tracy loved it. It is funky and old and right on the ocean and just an authentically real place.

Michael entertained them as he was both charming and hilarious. He kept them laughing most of the evening.

We were all so surprised when, after asking for the check, the waitress announced that the bill was taken care of by Chuck. She started to leave, we called her back and she got a lot of money as a tip. She also got teary-eyed and quickly left after many thank yous. I guess people forget to tip under those circumstances.

There was a series of storms beginning to blow in last evening with actual lightening and thunder. It was really storming as we made our way home. We drove a very dangerous road along the cliffs in an area called Devil's Slide. Thank goodness I know the road and we got home safely. Rather scary.

This morning, the three of them are heading to a famous hot rod builder's shop. Chuck gave Michael a gift certificate to give to the parts guy there and Michael wants to show Will/Kim the showroom and shop. He also has to pick up a few things. While they are there, I am going to sleep, have my eyebrows waxed and make some Sugar-Glazed Walnuts for the neighbors and William. The food shopping for Christmas will begin early tomorrow morning. Michael is coming along to help me.

Tonight's plan? I think William is going to make us some southern-style Shrimp and Grits. Sunday, they will be gone all day to have some brunch with friends in the city then they need to finish Christmas shopping. I will begin the cooking for Christmas day.

I am having fun. I am so out of my routine but being very cautious about not over-doing it. I really don't want to get sick!

Friday, December 21, 2012

Changing Plans

Did you ever have one of those days where all the plans got thrown out the window then continued to change many times? Frustrating! That was the kind of day it was yesterday.

Michael went to the funeral of the 22-year old son of a former co-worker. It was a formal Catholic funeral but it lasted over 2-1/2 hours as so many people wanted to speak. It was mostly in Spanish but Michael said it was very moving. But, we had planned to meet much earlier for lunch. As we had not heard from him, we kept just wasting time and hanging out together.

We had to be out of the house early as the housekeepers were cleaning, so we tried to reach mom for a quick hello but she was already gone and out into the world. We went by her place but, alas, she still was not home. We headed to the Avenue, did some Christmas shopping, they had some coffee and cookies and William bought a tie for Christmas. After hearing about my mom having "saddle sores" from working out on her stationary bike everyday, he is ordering padded bike shorts for her!

Still no word from Michael.

We decided to head towards his shop and grab sandwiches at a deli nearby. On the way, he called and said he was at his shop and we had to be way north within the hour to see the Mustang. Now the pressure was on! Traffic suddenly came to a halt. Every street. Every freeway. Every side street. People were out in droves finishing up shopping. It was crazy. We finally got to the deli, grabbed food to-go, quickly ate them at the shop then drove to see the Mustang. It was fantastic to see William and Kimberly's faces as Ricky started it up. So satisfying.

We split up. A family who Kimberly nannied for moved to the city so they were getting together for the evening. William drove her to the city - in horrible traffic, of course! - then he drove back to our house. In the meantime, Michael and I made our way to the harbor, bought four large live crabs then had then cooked. When William got back to our house hours later, he was one happy boy. First crab of the season and it was SWEET!

He and Michael went to Wayne and Jill's house for a visit at 6:30 and I went to bed. Afterwards, William went back to the city to bring Kimberly home. She also went crazy over the fresh crab!

I climbed out of bed this morning at 6:30. I had twelve hours of sleep. I needed it. I feel so much better.

So, today's plan? We are having lunch with my mom, shopping at a great market for cured meats, cheeses and something for a nice salad. All this is in preparation for a late afternoon opening of a bottle of Opus One that someone gave to Michael. He has been saving it to share with his son. Later in the evening, we will have some Shrimp and Grits that William has been wanting to make for us.

But, this is only the plan and, as we learned yesterday, it may change!

Thursday, December 20, 2012

Keep Fighting

At the rehab class on Tuesday, the head of the program asked me to talk with one of the woman in the education part of the program. We all had to go through the eight-weeks of classes and exercising. Afterwards, many of us chose to continue on the maintenance program. I am in my 7th year of maintenance.

I briefly spoke with the woman who had been diagnosed with COPD and was deeply upset because her doctor just told her she had 22% lung capacity. Right. The woman stand before me, with no supplemental oxygen, was supposed to have 22% lung capacity? Something was clearly wrong. We talk about how she was diagnosed. After one pulmonary function test, no x-ray or CT scan or lung biopsy, the doctor told her she had COPD. She was on prednisone and was gaining weight. He was furious. She had to list all the food she ate in a week, he reviewed it and told her it looked fine but she still gained weight. What doctor's don't know about prednisone and nutrition! She was eating all "good" things including fruit, starchy veggies and yogurt. I told her what I had learned about how we process food differently and the need to eat only non-starchy veggies and lean protein.

She was a smoker who quit cold turkey when she just could not breathe anymore. I encouraged her to be kind to herself, to eat well, to exercise, to sleep well and not beat herself up for smoking. Move forward. She told me she had not eaten since dinner the night before and didn't sleep that night. All the worst things should could be doing for herself. Again, wrong.

What I noticed about his woman was that she was very passive. There was no fire. There was no, "I'll show him!" attitude. Her arms were crossed and I am not sure she was willing to listen to me. I tried to fire her up. I tried to get her to take control. I told her what she would be on a couch needing 10 liters of oxygen if she had 22% lung capacity. She was not even using oxygen at night! So many things wrong. I encouraged her to ask her primary doctor to give her a referral to my university hospital, just thirty-minutes away from her home. I told her they would give her a full run of pulmonary function test, a CT scan and maybe a bronchoscopy. She needed a proper diagnosis.

She said she would follow through. I am not sure. I spoke with the RN later who nodded her head when I mentioned that I felt the woman had fallen into depression. Instead of fighting, she went inward and closed down. What makes one person willing to fight for their life while another throws in their hand of playing cards and waits to die? I guess I am a fighter so I don't understand a person who allows it all to just happened to them with death quickly following.

Wednesday, December 19, 2012

The Season Begins Today

Two big events today: Mom's appointment with her cardiologist to explain her issues and treatment options and Kimberly and William's arrival this evening.

But, Michael won't be here. We received news that someone he used to work with, and who now works next to the twin, had a 22-year old son going to BMW school in Oxnard, California who died in a single car accident early Sunday morning. The wake is tonight. Michael needs to be there.

Our son and Kimberly are due in at 5:00 tonight. I am so relieved that they are flying from Seattle instead of driving. The interstate is closed at the moment due to black ice, which caused a 60-car accident. We will drop their luggage at home then we will enjoy some fish tacos and some of that fabulous garlic and cheese bread with fresh crab on top. Oh my.

The 1966 Mustang convertible that he and Michael have been building together is recently registered, insured and street ready. Michael wants to show it to William and have him drive it after lunch together on Thursday. No paint on it yet as Michael wants to have William actually apply some of it himself. It will mean more to him years from now.

Mom wants to have time with William and Kimberly before Christmas so all of us are going to meet Michael at a BBQ place near mom for lunch on Friday. While we are at her apartment, she is going to take William aside to give him my parents wedding bans. They probably are the things that mean the most to her and I am so touched that she is giving them to him. She already has given him my dad's watch and his Harris Tweed blazer. He loved my dad.

In anticipation of all the company and the craziness of the season, Michael and I went to a restaurant in town last night and had a nice dinner. It was a simple dinner, which we shared, but it was lovely to be together out in the world before all our company arrived. Our last supper.

I am ready. The house is ready. Let the season begin!

Tuesday, December 18, 2012

Smells Like Christmas

I am making the Pumpkin Spiced Cake with Cream Cheese Frosting this morning and a breakfast quiche. Kimberly and William arrive tomorrow evening. The house should smell like Christmas within the hour!

Today is the final rehab class before Christmas and I am going to distribute goodies and gift cards to the staff and rehab boys. Afterwards, the floors need attention and I will do a quick vacuuming of the throw rugs. The house will be ready. All I will have to do tomorrow is focus on what the cardiologists will be telling us about mom's heart condition. We have a Wednesday morning appointment. We are both a bit nervous but really want to understand the information and treatment options.

I love having our son home. The house feels like it is back to normal. The old days.

Doing a Trader Joe's run on Sunday, an older woman stood right next to me at the checkout stand and was looking at all the fruit leather near me. She began to cough. It was a deep, productive, horrible sounding cough and she did not cover her mouth. I quickly moved to the end of the counter and she wandered off. The checker looked at me oddly as I stood at the end of counter. I smiled and said, "I have no immune system as I am on chemo drugs." He said, "And she didn't even cover her mouth!" I remarked that he probably gets a lot of that as people go through his line. That brought on a whole other conversation. I am amazing how people are so willing to share their illnesses with everyone. It could kill some of us!

Monday, December 17, 2012

Thoughts Throughout the Weekend

Either life is a bit too busy or the mind is a little to old when one must make a list of all the things needed to be done. We bought my niece and her husband some luxurious bath sheets (very large towels) but while I was refolding them for wrapping, I found a major flaw in one. So, that needs to be exchanged, mom has an eye doctor appointment, I forgot three things at Trader Joe's so I am going to swing by before going to mom's and I need to buy five pounds of the fantastic chocolates for the housekeepers and William. Lots to do today. Where is that list?

I do want to comment about the school tragedy. It is so hard to get my mind wrapped around someone wanting to hurt helpless, innocent children. A powerless, angry, sick person. The death of a child at any age must be the worst thing for a parent to ever feel. It happened at a school where children should feel safe.

The school where I got my lung disease was filled with children from many families who were very rich and famous. World famous names were listed in the roster. Security was a concern. The site was on 33 acres and there was no staffed front gate, still isn't. The gate must be opened by a key to get onto the property after hours or on the weekends but it is left opened during the day.

While working there, I worried that a disgruntled employee might want to do harm to one of the bosses children, someone may want to kidnap a famous person's child or some nut might come onto the property to do harm. We were all trained to call the front desk if we saw something odd. When I first went to work there, the teacher I worked with had an evacuation plan to take the children into the woods near her classroom. After a scare, I spoke with the site manager. She said that even if they had security cameras everywhere, manned the front gate and placed barbed wire surrounding the property, if someone wanted to get onto the property, they would find a way. Security measures are only a  determent. Do we want to have the schools feel like prisons?

I thought about all of these conversations this weekend. The solution? Train the staff to be aware, create a determent, have an evacuation plan and pray.

Sunday, December 16, 2012

Next Thanksgiving Gift, Gifts of Sugar-Glazed Walnuts and a Miracle!

The best news ever. After encouragement from me, my niece told her parents that she would like to host future Thanksgivings at her home. A big sigh of relief from deep in my heart! I hate cooking Thanksgiving dinner. The tradition demands specific foods and some family members demand tradition. Woe to you who strays. For my turn in 2011, we went to a restaurant near mom. I was already beginning to worry about next year....Thank goodness for my niece. The plan is that it will be a potluck, eat early, visit and get home hours before the usual midnight.

The first set of groceries come into the house today. This morning, I am going to the other rehab then to Trader Joe's. After driving back home over the pass, I will buy the remaining foodstuffs at Safeway. This year, I am making my standard Sugar-Glazed Walnuts for the rehab nurses, the rehab boys and neighbors. Also, William and my mom have a standing order. Several of those need to be made by Tuesday so I will be cooking this afternoon while watching the 49er game.

I am on Facebook with one of my former parents at the school where I got my lung disease. When she filed for a divorce, her children did not support it. They remained with her former husband and they refused to have any contact with her. She re-married and they recently moved to Oregon. It has been many years without any contact. Yesterday, her son phoned. They talked and are planning to see him in Seattle. A huge weight has been lifted from her heart. Sometimes children of every age do not understand something until they are older or experience a similar situation. The son is now an adult. Life experiences has given him a better understanding. It is time to reunite. I am in awe of the strength that it must have taken for him to make the first contact. But, it is Christmas. The season of miracles.

Saturday, December 15, 2012

Cat TV

Chip and Betty have had a rough year. They both have had lingering and some very serious health issues. Because of all the additional expenses, we agreed that we would not exchange gifts this year. 

During mom’s MRI last week, I found the cutest large ornament in the hospital gift shop. It was a replica of an Airstream trailer. Embedded in the side was a Christmas scene featuring a Christmas tree and a toy train that, when turned on, runs around the tree and the rest of the scene becomes alive. Also, it played several different Christmas songs. 

I had to buy it for them. They have a motor home, which they use twice a month for three-day excursions. I thought it was perfect.

Off it went. After it arrived in New Mexico, I got a text from Chip. They LOVED it. Really loved it.

Then, a few minutes later, I received a photo that I am unable to download:  Cat TV. HA! Apparently, every time the cats hear the music, they come running and just sit and watch the action. They have three cats. All are intrigued. 

Made my heart sing that Chip and Betty are enjoying my gift so much. 

In other news, I created a Facebook storm reporting that I am going to watch my annual Christmas DVDs which include: Home Alone, Miracle on 34th Street, White Christmas, Christmas Vacation and Love Actually. It was the last one that created the problem. There were many comments that it has Christmas in it but not a Christmas movie. After I responded that it was included with all the other holiday movies at Best Buy, I think I won. I think. The drama continues!

Friday, December 14, 2012

Steps Towards Christmas

Advancing towards Christmas.

Step 1: Decorate the house with outside lights, two Christmas trees and poinsettias. Done.

Step 2: Buy all the cards and presents for everyone, including ourselves. Mom gave each of us $200.00 to shop for anything we want, I will wrap everything and put all the goodies under the tree later today. She loves seeing everything Christmas day. Michael and I spent all day shopping yesterday and we are...Done.

Step 3: Enjoy friends. I have been able to meet and write to so many dear friends this week. Natalie, Oliver and Winnie arrived after dark last evening to see the decorations and to celebrate Winnie's birthday. Cake was involved. The kids were so excited to be out into the world after dark. Our neighborhood has lots of decorated houses so they took a tour before going home. I will never forget when Oliver walked in the door and spotted the big living room tree. He stopped in his tracks and said with awe, "Wow!" Done!

Step 4: Painted toe nails and waxed eyebrows. Will be completed today. Mom and I are spending quality time together and will emerge with Christmas red toe nails! Almost done!

Step 5: Food shopping. Scheduled to begin one of two Christmas food shopping runs on Monday. Future goal.

Step 6: Welcome Kimberly and William at the airport and bring them into our holiday magic (or madness!). Once they arrive, Christmas will really begin. Nothing but cooking, family and fun ahead. The reason for all of the steps above!

Thursday, December 13, 2012

Christmas Shopping

It is a Thursday not a weekend. We specifically choose a week day morning to do our yearly one day Christmas shopping. Fewer people equals less possibility of being around sick people. In preparation of our big Christmas shopping day today, I began my yearly viewing of Christmas DVDs. White Christmas yesterday. Love Actually today. Home Alone tomorrow. Puts me in the mood. We have been listening to Christmas music in the car since Thanksgiving. I'm not feeling it yet but hopefully the spirit of the season will begin to seep into my body today.

We dress up to shop. We notice that we get special treatment. We feel festive. 

Lists are made. Checkbook has fresh checks and new pens. We are ready.

Let the shopping begin!

Wednesday, December 12, 2012

Christmas Day Menus and Recipes

Christmas. Thirteen days away. How can that be? Wasn't it May just moments ago?

Today, I am attacking the grocery list for the holiday. I also need to make my sugar glazed walnuts for family, rehab nurses, neighbors and friends. A nice little special gift. 

I am beginning to pull together a list of things to do leading up to Christmas. It is a lot but if I break it down to a bit everyday, I will survive! Kimberly and William are arriving on the 19th but Michael does not want me to cook anything for dinner while they are here. He has so many other plans. That alone takes a lot off of my things-to-do list. 

Michael is going to go over the pass very early to drive mom to our house Christmas morning so she won't miss a moment. As my sister's family will arrive around noon, the day's food will feature lunch, appetizers and dinner. They will join us for breakfast the day after Christmas as they are staying the night at a hotel just a mile away. I must be prepared and have everything planned and ready to go. 

Though I will continue to eat only food on my diet throughout the day, I am planning to take a bite of the dessert. It is odd but I just don't taste while cooking (Michael and William sample all the food and I ask for their opinions!) or even eat much food once it is cooked!

So, for those foodies among us, here are the menus:

Christmas Breakfast
Quiche Lorraine -
Cinnamon Rolls with cook bacon wrapped in them -

Christmas Lunch
Melon with Basil and Sugared Baked Bacon and a little fresh lime juice
Tossed greens with figs and goat cheese
Open-Faced Ham and Cheese Sandwiches - Recipe below

Appetizers while opening presents
Champagne Cocktails -
Max's Opera Cafe's Chicken Livers on Russian Rye
Horseradish Cheese (at Safeway) with crackers
Fresh Shrimp with Cocktail Sauce

Christmas Dinner
Filet of Beef covered with coarse mustard, herbs and prosciutto
Pancetta and Porcini Potato Gratin -
Brussels Sprouts with Caramelized Onions and Bacon -
Garlic Bread

Norwegian Cardamon-Almond Tart
Homemade Chocolate Truffles - recipe below

Post Christmas Breakfast
Ham Steak
Leftover Quiche Lorraine
Leftover Melon, Basil and Bacon Salad
Homemade Blueberry Coffee Cake -

Open-Face Ham and Cheese Sandwiches with Poppy Seeds
Makes 4

1/4 cup butter, room temperature
¼ cup finely chopped onion
2 T. German or spicy brown mustard
3 t. poppy seeds

4 ½” thick French bread slices
Melted butter
8 thin ham slices (order at deli counter)
8 thin Swiss cheese slices (order at deli counter)

Preheat oven to 350 degrees. Stir ¼ cup butter, onion, mustard and 2 t. poppy seeds in a small bowl to blend.
Brush 1 side of each bread slice with melted butter; arrange buttered side down on baking sheet. Spread mustard mixture on bread slices, dividing equally. Arrange 2 ham slices, then 2 cheese slices atop each bread slice. Trim ham and cheese to fit bread. Sprinkle sandwiches with remaining 1 t. poppy seeds.
Bake sandwiches until cheese starts to melt and bottom of bread is lightly toasted, about 15 minutes. Serve hot.

Chocolate Truffles
Makes 25

¼ cup water
9 oz. semi-sweet chocolate
3 t. butter, in pieces
¾ cup crème fraiche or heavy cream
2 T. confectioners’ sugar
unsweetened cocoa powder

In a saucepan with the ¼ cup water, melt the chocolate over low heat. Stir until smooth and creamy, then stir in the butter, piece by piece. Stir in the cream and confectioners’ sugar. The finished mixture should be perfectly uniform in color and texture. Remove from the heat, aloe to cool to room temperature, then place in the refrigerator to stiffen.

Spread some unsweetened cocoa powder on a plate. Arrange about 25 paper candy cases on a serving plate. Remove the truffle mixture from the refrigerator and form it into little balls with your fingers. As each one is made, roll it in the cocoa, then place it in a paper case. These are best served immediately, but if you must wait, keep them in the refrigerator until ready to serve.

Tuesday, December 11, 2012

Instant Human Connection in the Express Lane

It was suddenly a woman-to-woman connection in line at Safeway. Express line. I needed mint jelly for the rack of lamb last night along with a few other items. The clerk asked how my day was going. I replied that I had spent it with my mom and that we had a ball together. The woman behind me chimed in, "You are so lucky."

We looked about the same age. Her mom apparently is a miserable human being. I tried to offer a gentle comment that maybe she was getting Alzheimer's because sometimes it causes people to be so negative and nasty, different from their regular personalities. She wasn't having any of that, "I do think she is at the beginnings of dementia or Alzheimer's, but she has always been nasty."

We walked out together, pushing our carts to our cars. In just a few short minutes, I learned so much about this woman and her recent and past struggles with her mother. As we paused before continuing on with our lives, I said, "I wish I could give you all the wonderful experiences in my life because of having a great mom." She smiled and replied, "Thank you."

It may just be our age. It is the time of our lives where are children are grown and now we have to worry about the health and welfare of our parents. My mom has taught me so many lessons by example as she has transitioned into this final phase of life, making new friends, dealing with new doctors and actually new everything. People always comment that I am so strong dealing with a fatal disease. HA! I am nothing compared to her.

I find it so interesting that women are willing to share so much with another woman. Deep, life issues. Struggles. Joys. And, the woman in Safeway was right. I am so lucky to have my wonderful mom in my life.

Monday, December 10, 2012

Recent Problems with Nissen Fundoplication

Everyone in my ILD Support Group has GERD - Gastroesophageal Reflux Disease - but mine was solved with a procedure called a Nissen Fundoplication. I have written about the surgery and the problems with this procedure in past blogs. It solved the problem of acid rising into my lungs but it created another. Apparently, the doctor made the knot too tight so sometimes, the blasted food just won't go down as it gets stuck at the intersection of my stomach and esophagus. If this happens, I have found that if I walk around, it either passes or I suddenly burp and Voila! gone. When the food gets stuck, it is painful and a bit scary.

It had been a weird food week. Because of doctor appointments for mom and the need for me to fast for the liver scan, I didn't eat three meals several days in a row. Too little food and I begin to lose my hair! So on Saturday, I worked in the gardens and sat down for a lunch which included a stuffed chicken breast with goat cheese and herbs. I was hungry.

I ate several bites when it happened. It got stuck. I walked. I sipped some water to see if that would help. It was really stuck. Then it happened, I knew I was going to vomit. Suddenly, it came up.

Well, that was the end of lunch for me! Forget it. I did have some spaghetti - with Pasta Slim - for dinner which tasted fantastic. So, I am going to be very careful with chicken, which can be dry.

For my blogs about the Nissen, see below. It really was the best thing that I have had done throughout this whole process and I would do it again in a minute. I don't have to take any reflux drugs or have any worries about reflux going into my tender lungs. If you have an interstitial lung disease, please ask your doctor to be checked for GERD. Mine was silent which means I had no symptoms and it was a very serious case.

Sunday, December 9, 2012

Christmas Decorating

Feeling the reduction of the prednisone, I forced myself to clean up the gardens and wash the windows yesterday morning. Afterwards, I sat inside contemplating my choices - decorating for Christmas or a nap. It was with a gentle internal shove that I began putting together one of the two Christmas trees. The little one. When suddenly, someone was at the door. It was Randy, the husband of the woman who as lupus. He drove his father to town to attend a funeral. He had dropped his dad off at former neighbors who invited him to join them. Well, two hours later they phoned to announce they were back home so Randy took off to retrieve his dad. Two hours. I was yawning and no decorating happened but, I had a great time talking while he was here and there was never a moment of silence!

Mom is coming today so I had wanted the house decorated. After he left, I girded myself to begin again. After an hour or so, Michael arrived home exhausted from his day. I put a drink in his hand and a good dinner for his belly then continued to decorate. He put some Christmas CDs in the player and just watched. I noticed that he was drifting off in his chair. I was finally finished at 8:30, we turned everything off and fell into bed. Both of us were exhausted. We slept until 6 this morning.

The concert with the little violin students is this afternoon. I am going over the pass to collect mom, have a bit of lunch together then do the concert. Afterwards, we are coming to the house for cocktails with Michael then we are all going out for some fish tacos before driving mom back home. A busy day.

Saturday, December 8, 2012


So this is normal? I had forgotten what normal felt like. The small reduction of prednisone is very noticeable. I am calmer. I am driving slower. I am tired. Last night was another 11 hours of sleeping but it was after a very long week.

The constant need to move and the feeling of being excited all the time is gone. I kind of miss it! Everything feels like a challenge. I am forcing myself to do the gardens and windows today. Hopefully, I can begin the Christmas decorations inside the house this afternoon. Or a nap.

After the sonogram last Thursday, I received an email from the liver doctor that my liver and panaceas were still slightly enlarged and he wanted to talk about it soon. My next appointment is not until May so I will have a bit of a reprieve. I know he is going to want a biopsy. Maybe the reduction of the prednisone will help those overused organs.

I am so glad last week is over. It was too busy - three doctor appointments and two late rehearsals. I was home just an hour yesterday. Crazy.

Fortunately, I have a relatively quiet week ahead. Just one evening rehearsal, rehab, an ILD Support Group meeting and a day of Christmas shopping. Michael and I are going together for an entire day of shopping bliss then it will all be done. After that is finished, I will be able to focus on the menus and food lists for the week before Christmas through post-Christmas breakfast. A lot of cooking! And planning!

In the mean time, I am trying to adjust to all these new feelings. Adjusting to normal.

Friday, December 7, 2012


I think I may have made the yoga teacher angry. I wrote an e-mail to her asking if we could meet every two weeks instead of each week due to financial concerns and she responded....nothing. No response. I guess I have to begin to investigate other paths.

Old friends. I am blessed. We have some dear friends who we see maybe just once or twice a year but we seem to pick up where we left off! Nothing has to be explained as they already know the larger story of our lives. And we know theirs. Today, I am having lunch with a woman I knew from the school where I got sick. She had two children there and I was especially close to her son. During the beginning of my illness, when we constricted and had contact with just a small circle of friends, she was there. She refused to back away and sometimes her lunches and coffees were what gave me strength and held me together, though I really don't think she realized it. I always felt stronger and smarter for having shared time with her. This morning, we are meeting for breakfast. Joy.

Betty phoned yesterday to tell me about the Nook. It may be the answer to mom's Christmas present. I am going to take her to Barnes and Noble to have her play with it and get all the information.

Yesterday's morning sonogram on my liver, panaceas, gall bladder and bladder was such fun! It took almost an hour, the technician was very experienced and we had a fun chat. Time flew by. As I had not had dinner the night before due to the late lunch with mom and could not eat breakfast due to the test, I was starved. After grabbing a cup of coffee, I was dreaming of an Egg McMuffin (without the bread and egg yolk), drove to a McDonald's about 45-minutes away but it was too late! I had the grilled chicken sandwich without the bun. It wasn't great but it was good enough to have food in my stomach for my morning pills. A couple of hours later and after running a huge number of errands, I bought a very small container of some great turkey curry at the local organic market. Perfect!

Great weekend ahead. Tonight is the dress rehearsal for Sunday afternoon's concert at the local small mall at the harbor. Tomorrow, I may work in the yards if they are dry enough and the windows really need to be washed. Mom is coming Sunday for lunch then to the concert at 2:00.

And finally, today is Winnie's 6th birthday. So grown up. It has been pure joy watching her grow and I am looking forward to watching her navigate her path in life. Happy birthday to her!

Thursday, December 6, 2012

Dragging Facing Today

I left early yesterday morning fighting the rain in rush hour traffic to mom's then to her university hospital. We had a 9:00 MRI appointment. We were early, of course. Lots of questions. Lots of forms. We met with a cardiologist who would be present throughout the test and fell in love with the radiologist. 

While she began the three hour process, I had an iced tea in the cafeteria, walked around, listened to some live music and finally was drawn to the gift store. Well, $125.00 later I had two Christmas presents. I am sending one to Chip and Betty today. It is a very heavy foot-long Airstream camper ornament which has a window on the side. Inside the window is a moving Christmas scene with lights and Christmas tree and a child's train. It also plays a variety of Christmas songs. 

I wandered. I thought I found the right elevator to take me down to the MRI area, it had a line of people waiting so I thought I would take the stairs. Wrong. Bad. It turned out to be the wrong elevator and I found myself in the bowels of the hospital. Me and the maintenance workers. In the elevator on the way back up, one maintenance guy said, let's go back and I will show you how to get to the MRI area through maintenance. We had a ball. It was fascinating. 

There I sat in the MRI waiting room until 1:30. Mom had to have another cardiogram before she was allowed to leave. She was starved as she had not been able to eat breakfast because of the test. I didn't eat lunch either so we drove to a great restaurant near the hospital and never enjoyed food so much.

So, the news: Her heart issue seems to be a small hardened area where the tissue is still alive, thank goodness. She will be presented with the choice of having an angiogram - not through the groin but through the wrist because they are not successful in older, slim women- and a stint installed. The problem is that it is very invasive. One cardiologist said that mom has a very high quality of life and that it would be horrible to lose that if there was a problem during the procedure. She said that she would counsel her own 84-year old grandmother against having one. Also, she said the problem unfixed probably would not kill her for years but is a very easy lovely way to died. Just go to sleep and never wake up. 

Mom and I are meeting with her cardiologist in two weeks. They will lay everything out for her to decide what she wants to do.

I arrived home around 4 and back out into the world for an orchestra sectional rehearsal last night. I am exhausted this morning but must be in the car within minutes to drive to the city for the liver scan. 

Wednesday, December 5, 2012

Days of Rain and Doctors

After two days off, the rains have returned all day today and should continue through tomorrow. I am on the road early this morning to drive mom to her MRI appointment for her heart. We plan to shop and have lunch afterwards which is just an excuse to be together to talk. We do talk. And laugh. I so treasure these times as I have grown to know her as a person not just a mom. A gift, really.

I have been living the past few days on 12.5mgs of prednisone, the lowest amount in almost eight years. What a difference. I am so much calmer, have less energy but sleeping like a baby. Maybe, just maybe, I can talk Dr. K. into going to 10mgs. My poor, over stressed liver and pancreas would be so much happier.

Speaking of my poor liver, I am scheduled for a very early morning liver sonogram tomorrow in the city. It will determine if the doctor wants to take a biopsy or not. Somehow, I feel a biopsy coming on! For the past two almost three years, I have not had to spend one night in any hospital. I don't want to break my record!

Orchestra rehearsal tonight, dress rehearsal with the little violin kids on Friday night and their concert on Sunday afternoon. Lots to do included decorating for Christmas. And shopping. And planning. Let the fun begin!

Tuesday, December 4, 2012

Girl Meets Yoga

With trepidation, I met with the possible new yoga instructor for tea yesterday afternoon. Yoga and the whole world of yoga is so out of my comfort zone. I was expecting to not like her at all.

After ordering some tea, I watched each woman who walked through the door wondering if she was the yoga instructor. It was a very fit and short haired woman walking through the door who I thought might be her. She looked at me and I said, "Are you Kate?" It was.

We sat for over an hour and talked. She took notes as I tried to be succinct about the high points and the process of my disease. When I told her Dr. K. said I needed techniques to help me through the entire lung transplant process, she shared that her husband had been hit while riding his bike along Highway 1, the car did not stop and he was found unconscious in a small gully along the road. While in extreme pain and very seriously injured, he used many of the things he had learn to control the pain and his breathing to keep him calm and was able to focus on healing. After 18-months of rehab, he was back to 100%.

She gets it.

She also said that she teaches her clients the techniques they need, offers additional reading and learning then her clients usually take a break from her and do it on their own. This is her goal. She said that she is not a permanent fixture but someone offering information then drifting away after her work is done. Often, clients will connect with her again when they are ready to do additional work.

She said that what I needed was restorative yoga. Breathing. An hour. Once a week for $75.00. That is a lot of money to us. A major monthly bill.

I was beginning to really like her. Nuts! Earlier in the day, I was mentally heading to the Tai Chi classes for $12.00 each. Cheap! Fun! Movement!

After she said that she would love to work with me, she told me the reason for the meeting. If she feels no connection, she won't accept a client. Interesting.

So, later that evening, Michael and I talked about it. The positive: she would come to my house, my germs, my environment and I liked her as a person. The negatives: the cost.

We are going to think about it today and contact her later this evening. If yes, I would begin in early January.

Monday, December 3, 2012

With Gratitude, I Think

I never woke up once last night. After ten hours of sleep, I am fully awake and ready for the day to begin. What a change from yesterday. After a miserable night, I went back to bed and slept for over an hour to awaken just in time for lunch. We watched a huge storm blow through with wicked winds and lots of rain. Finally, late in the afternoon, the sun came out and we ventured into town for coffee, just to get out. So many other people were doing the same.

Today is Day 4 of my reduction of prednisone. I am now taking 12.5 mgs. down from 15 mgs. This is the lowest dosage I have ever taken since I begin in 2005. I can feel the difference. I am calmer. I am not hungry. My energy levels are lower.

After mom's eye appointment this morning and a bit of lunch, I am meeting the possible new yoga teacher for tea at 3:00. I am really struggling with this. I am so not a yoga person but maybe that is why I need yoga! With her e-mail signing off "With gratitude," I moaned. This is going to be hard for me.

Our local recreation department offers a drop-in Tai Chi class on Wednesday mornings beginning in January. I think that is probably where I am heading. Perfect time. Perfect day. Perfect cost.

So I will sign off to you, dear reader, with gratitude for reading my blog! I can hear you moaning from here!

Sunday, December 2, 2012

One Long Night

A long night. Michael was exhausted and went to bed early. When I arrived over an hour later, he was deep into sleep with a gentle rhythm of a light snore. I climbed into bed. I waited to drift off into dreamland until suddenly: a snort and snoring. Loud snoring.

I used my "slightly wiggling the bed" technique, which usually works. It awakens him enough so he rolls onto his side. But alas, he was in DEEP sleep and it didn't work. I was not going to be able to get to sleep.

Taking my pillow, heavy bathrobe and a light blanket, I made my way into the living room. Since we replaced our couch in the family room with recliners, this was the first time I was force onto the nice couch. It was cozy and I drifted off.

Suddenly, I heard something. It was Michael searching the house for me at 10:00. He couldn't find me. I called out to him. He felt terrible that I was out of the bed. I told him I was fine. Go back to bed. At 2:00AM the storm hit. The winds were howling. The windows rattling. In the cozy bedroom, the fan was on and it has a different ceiling so Michael was oblivious of the cacophony outside.

But in the living room, I couldn't get back to sleep. I made my way to the recliner in the family room, turned on a Christmas movie and drifted off around 3:00AM. Suddenly, the storm kicked up again and it was 6:15AM. Coffee time!

I feel like I have been beaten up all night. You, dear reader, may have two questions: Why did you not go back to bed at 10? Don't you have two other beds in the house?

Answer #1: I was cozy. I was fine. Michael can be talking in bed one moment and in a deep sleep the next. It is strange. I knew that he would be loudly snoring again before I would be able to get to sleep thus ending up back on the couch!

Answer #2: This is embarrassing to say but I didn't want to mess up the beds and have to wash the sheets again for the holidays. Stupid I know, but that is me.

We are heading out into the storm this morning, I am going to workout at the other rehab then we are having a nice lunch together. I guarantee a nap later this afternoon!

Happy Sunday!

Saturday, December 1, 2012

Indigestion Strikes

Let the winter begin! It has been stormy most of the night. It roused me from a lovely sleep only to discover that Michael was gone! He had been invited to a Christmas party hosted by his friend Jim at that restaurant a friend owns right on the ocean where we took my niece months ago. It began at 11:00AM yesterday and he arrived home around 6:00PM. The food was outrageous. The featured course was a fettuccine covered in a rich tomato-based sauce reeking of garlic cooked with muscles, cod and huge shrimp. All the seafood was provided by other friends who own fishing boats in Alaska. Michael ate. He drank. He talked. He said it was such fun.

This group of men and one lone woman were all very powerful and wealthy people who are Jim's long-term friends and clients. Michael had several interesting conversations and mostly loved the one couple who were in their late 80s. He was touched that Jim included him in this group.

But, we just don't eat a lot of rich food anymore. He had a bout of indigestion and found that sleeping in his recliner gave him some relief. The owner of the restaurant sent home a large container of the pasta for me to enjoy today. Huge container! Pasta! I am just going to enjoy the sauce and the seafood as I really can't eat the high carb pasta. A shame, really. I may have indigestion tonight!

While he was enjoying his time, I was food shopping with mom then playing Christmas music in a hot, tiny room with a dozen other adults and kids in preparation for a concert at the local tiny mall attached to a hotel by the harbor. The concert is a week from Sunday and I going to bring mom to see it. The conductor is a violin teacher and the concert is to present her students to their family and friends while  also providing nice music to the community.

I had a busy week and the coming one is going to be filled with three doctor appointments - two for mom. So, today I am going to balance the checkbook and pay the bills. That' it. Oh, and an afternoon nap. I need a couple quiet days.

Mom Update: She is scheduled to have her MRI on Wednesday. This will help determine the underlying cause of her severe heart problem. She also has stopped her one shot of bourbon each evening, has not used the salt shaker and is spending 30-minutes on a stationary bike every day. She thinks she is feeling a difference in her symptoms.