Living Well with a Bad Diagnosis - Lung Disease

Monday, November 30, 2015

Shopping Begins!

Cyber Monday! Let the buying begin! At dawn, I bought a book and fun computer light for mom and two CDs and a grill pan for us as presents from mom. She gives all of us money each year, we buy what we want then open it all up on Christmas with cries of, "It's perfect! Exactly what I wanted!" She is able to see what she has given to all of us. Saves her a lot of shopping!

She and I are together all day today. We are planning a nice lunch together at Nordstrom and I may just have to do some Christmas shopping on my way up the escalator to the cafe.

Michael and I got a lot done yesterday: replaced the outdoor light bulbs that had burned out, cleaned three rugs, cleaned the guest room, washed the windows inside and outside, washed our pillows and sheets then ironed. The only thing we need to do is buy new grout for our bathroom shower, which Michael is going to do today. Oh, and I need for him to dig out a dead azalea in the back yard and replace it with a new beautiful one I got as a birthday present from my friend Christien. And, he needs to cut a Fortnight Lily in half, plant one half near the mailbox and the other in the huge planter box along the side of the garage. I just realized that Michael's work is never going to be done! There will always be something!

Enjoy your Cyber Monday!

Sunday, November 29, 2015

Last F1 of the Year

Happy Birthday to our dear friend, Barbara!

It's a Sunday. The final F1 race of the season from Abu Dhabi is on right now so we are really trying to enjoy the racing for the last time until next year. Great racing track with lots of opportunities for passing. It actually goes through a hotel!

Chores for today: Michael is washing all the windows inside and out while I am cleaning the guest room for Christien's arrive next week and washing and ironing our sheets. It is cold and windy outside so I will stay cosy inside.

I am still coughing and wondering if the short bit of exposure to mold in the house Natalie and I looked at last weekend has set off a flare. I hope not! I see Dr. K. in less than two weeks.

Michael made dinner last night. I talked him through how I make his most favorite roasted chicken dinner. The butcher cut it up, he put all the pieces in a roasting pan and lightly brushed it with BBQ sauce before baking it in a 500 degree oven for 15 minutes. Then, he did another light dabbing of BBQ sauce and back into the over for another 15 minutes. Perfect. Moist. Delicious. He made a beet, walnut and goat cheese salad with it. Leftovers tonight!

Saturday, November 28, 2015

Race to Christmas

Countdown to company. A lovely couple who retired and bought a winery in Sonoma County are coming down on Wednesday for their first visit to our little town. We'll take them down Main Street then up to the harbor for lunch. The husband was recently diagnosed with IPF and was the father of the woman who interviewed me for Project #2. I know they are struggling with his supplemental oxygen needs and, once again, I will encourage pulmonary rehab. That is my job in life. Pulmonary Rehab, everyone! A better quality of life! And maybe a longer life! The housekeepers arrive the following morning. Rats! I will have to do some cleaning and Michael is going to wash all the windows on Sunday, inside and out. Love that!

All this is just a preview! Next Saturday, my friend Christien from No. Carolina is going to visit for three days on her way to a wedding in Australia. She and mom really want to meet each other so we will go from the airport to mom's house then out for a nice lunch together. She also wants to drive by the house she sold five years ago. We'll have a light dinner, spend Sunday on the coastside then Monday will be special. We are going to visit the new Upper School built well after we both left the school where I got sick. The Head of the school really like Christien but this will be my first time dealing with her since we sat across from each other during her deposition. Should be interesting.

We also made a major decision. We usually have two Christmas trees: a huge one in the living room and a small one in the family room. The house is decorated with a dozen poinsettias and other beautiful seasonal scenes. It is a lot of work to decorate and a lot of work to put it all away. Since we are not having the family here for Christmas this year, we are just decorating the family room with its small tree, the manger, a few candles and other decorations but that's it. Simple.

I love Christmas and I never thought I would ever cut back. I'm not feeling great, have lost a lot of stamina this past year, not breathing well and have a sporadic cough. Time once again to stop, adjust for the disease and keep moving forward.

Friday, November 27, 2015

Post-Thanksgiving

It was one of the best ever. Traffic? Piece of cake! Dinner? Delicious! Prime rib with roasted garlic mashed potatoes, whole sweet potatoes, cranberries, au jus. A treat. My desserts were a hit. Being with family? We loved meeting Russ's family and there was a lot of laughing going on! Wonderful all around.

It was fun to see Shelley and Russ in their new home together, he finishes his Master's formal classes in December then he will need to finish his thesis to graduate in May. He knows EVERYTHING about history. He even influenced this year's choice of what we are having for Christmas.

Each year, we choose food from another country to serve what the grandmas are cooking in the kitchen. Last year, I made Jewish food for Christmas. It was fantastic and one of our favorites! My sister announced last night that they would be serving food featured in a Lewis and Clark cookbook. Now, if we tried to feature what they ate on the trail, that would be a lot of buffalo and fish. Russ said to picture what foods were served by Thomas Jefferson at Monticello. Now, I know he spent a lot of time in France so I am expecting to see those influences. A rather great idea! So, they are trying to find some Elk to roast with cranberries as the main course. It should be interesting!

It is windy and cold today. Cold, as in a high of 54 degrees. We are delicate so we will be wearing coats as we go to the bank, pay bills and food shop. A nice day together!

Thursday, November 26, 2015

Thanksgiving

The happiest of Thanksgivings to you. I so hope you have lots of family and friends sharing this holiday with you. We are going to my niece's Shelley's house where we will meet her boyfriend's family for the first time. There will be a total of twelve for dinner and they will include his mom, sister and her children.

Children. I am a bit nervous. I hope they are well and have not picked up any new bugs in school this past week. But, I have to say, the teacher in me comes out, I dearly love being around children so I am expecting to have an extra special Thanksgiving.

It was a long day yesterday. I made a Pumpkin Cheesecake with a Gingersnap Cookie Crust with Chopped Spiced and Roasted Walnuts. The recipe was four pages long and it was a lot of work. It took hours as it had to be made in stages. For those who don't like pumpkin, I made an Apple Crisp, which will be served with a caramel sauce. Both of these and mom's cranberries will be hauled in a car for the 2.5 hour ride to Shelley's. And that's if traffic is not horrible.

Michael brought home 40 fresh clams for dinner last night. They were delicious and we were moaning while eating them! I had never cooked them before.

May all your travels be safe without lots of delays! Enjoy the family, food and fun!!

Wednesday, November 25, 2015

Pre-Thanksgiving

Rehab kicked my butt yesterday. I worry that the exposure to the mold in the house Natalie and I looked at last Sunday had started something bad in my lungs. My numbers weren't great and I couldn't do my entire workout. Before class, I sorted and filed paperwork I have been avoiding, cleaned the kitchen, balanced the checkbook, wrote out the bills, ran into town to buy stamps and just kept moving all morning. Feeling pretty good.

It was such a surprise that I struggled so much in the class.

This morning, it is going to be a marathon of baking. Pumpkin Cheesecake! Apple Crisp! I will stick all my hair under a hat, roll up my sleeves and go at it until it is done. It may take all morning. Rather looking forward to it.

William contacted us yesterday to say that he would phone today. He was knee deep in Thanksgiving prep. He gets together with good friends every year and all the men do the cooking while their wives/girlfriends enjoy the day. Love that.

Tuesday, November 24, 2015

Holiday Plans

The holiday is almost here. Our baking begins tomorrow morning at dawn and hopefully will be finished by lunchtime. We are planning a nice lunch out filled with fresh seafood and served right on the ocean shore. Bliss. We will also not need dinner afterwards! Well, maybe a some eggs...

We do not look forward to the drive to Shelley's house in Sacramento. The freeways between our areas are notorious for horrendous traffic and we will be in the midst of it. For the usual two hour drive, we are planning for three hours. The drive home can be equally difficult. But, in the meantime, we can all be together. Mom is so excited to see everyone.

Shelley and Russ have moved into a new house and we are meeting his mother, sister and nieces for the first time. Fun! They announced that there will be no turkey this Thanksgiving (they just don't like turkey!) so, we will be enjoying Prime Rib. Kind of nice to have something different!

But today, I will be working out at the rehab class and seeing both of my rehab boys. Dick is arranging his biopsy on the growth outside his lungs for sometime after the holiday. I'll get more information from him today.

Monday, November 23, 2015

Road Trip

We put the top down on the Porsche and drove the ridge overlooking the ocean to the West and the entire Bay Area to the East. It was cool but we were cozy warm. No one was on the road as it was so early. At one point, we were supposed to make a turn onto a smaller road to take us to a sweet little town for a nice cup of coffee. That was the plan. Well, Michael insisted that it was the wrong road and kept going straight. It was uncharted territory for us and out in the middle of nowhere. Even the iPhone didn't work.

We kept driving and driving. Then, we realized that we were on an adventure and had all the time in the world. A change of plans and a full tank of gas. Suddenly, a very little sign appeared, we turned left and that led us down the side of the mountain on a ONE LANE road. Thankfully, we were in a small car and rarely met others. We finally passed civilization markers like a couple of huge houses and, further down the road, a school. We missed our little town for coffee and the next larger city by a long shot. We were west of them on a road to Santa Cruz. Not the plan but...okay. Here we go.

The iPhone came alive and I searched for a great lunch place and found one! Near the harbor! We arrived and stood in line for almost an hour. Here is where I should mention that we were the oldest people there. It is a college town. I had a ball watching all the fashion and the pretty young women and the young families having a late breakfast or lunch together. Everything was made onsite. Michael had Eggs Benedict with bacon and avocado on a house made croissant. I had a very healthful, filled with vegetables, bowl of chili. Perfect.

We climbed back into the car for the long drive back up the coast. It was beautiful, crispy cool but sunny. I met Natalie to look at another house in our area. Nope. Awful.

It was a nice Sunday. We had an adventure, we were out in nature, we were hanging with young people, we had a great lunch and we spent the day together. Just about perfect!

Sunday, November 22, 2015

Liver Advice

When I saw the liver doctor last week, he asked about my general health and my workouts. I told him about the earlier hip problem that had repaired with the help of physical therapy and also about the recent bouts of sciatica down both legs. He was amazed when I told him I discovered if I could walk and move in the morning, the pain would be gone for the day.

In those early morning struggles with pain, I told him that his words whispered in my ear that I should avoid all over the counter pain relievers like ibuprofen. My poor liver has so much work to do processing all my medications, especially the prednisone, it is best to avoid adding anything to the mix. It is also why I am so happy I have never had a habit of having cocktails or wine as it would be yet another thing I would have to give up.

He smiled and said, "If you have to take something on a rare occasion, that would be fine." But then he smiled a very "I am proud of you" smile for remembering his advice and not falling to the pain relievers. I must say that I am careful but the pain is gone. I do not sleep on my right side anymore, I try to stay on my back all night and I learned to ease out of bed in the morning, just to be sure everything is working properly.

So far, so good.

It is Sunday. We are putting the top down and driving the ridge run with views of both the Bay Area (and Silicon Valley) and the ocean. A gorgeous drive through the redwoods. We'll work our way south for some early lunch before heading home up the coast highway. It is warm today, a nice breeze but it is going to turn to cold and rain the next few days. Today may be the last vestiges of summer.

Saturday, November 21, 2015

End of Project #2

Project #2 is coming to fruition and really an end to my participation. The work is done. My university hospital's hired advertising company has taken lots and lots of photos and I just edited my written story to be published along with twenty other patient's stories. It will be used in advertisements and for fundraising.

It was an honor to have the opportunity to begin to re-pay them for saving my life.

Having Michael home has done so much good for my garden! All the things that I have been wanting to have removed are being dug out one by one. A large agapanthus was hacked into pieces and removed yesterday. It was man against bush. He won but it was a battle. I am going to clean the last of it up this morning while doing the rest of the yard work. It is also lovely to go into the weekend with all the laundry and ironing done. He is getting good at sorting the clothes into different piles! Next up? I think he may be ready for Loading the Dishwasher 101.

He is also cooking dinner tonight: Skirt Steak with homemade Chimichurri Sauce with a side of cole slaw. I will leave the area as to not micro-manage him through the process. Such a treat.

I never have mentioned this before but I try to make a special lunch on gardening day. Something quick but a treat for all my hard work. Today, I am using a La Tortilla low carb wrap to be filled with smoked salmon, cucumbers, cream cheese, capers and a bit of lettuce. It is something to look forward during my lunch break between the front and back yards.

One project done. One to go. My mind is wandering to all that needs to be prepared for Thanksgiving next week. I am baking two desserts for twelve people but they need to travel to my niece's home about two hours away so I have to be creative. Something to think about while I'm in the gardens today.

Friday, November 20, 2015

Evil Cookies

The Fibroscan results pretty much matched the liver biopsy I had last year. Stage 1. Nothing that would stop me from having lung transplants. Good news. I needed to have a blood draw to see how the old liver is doing and it was transplant day! Apparently, people who have been transplanted have testing once a week and it was packed. Finally, it was done and I was free around noon!

I celebrated by going food shopping then hauled everything home. Then, the fun began! I made Michael's deviled eggs for the next few mornings and dinner. By bedtime, I was sooo ready. It was a long day for me.

In October, an adorable child was selling magazines and cookie dough for the Middle School here in town. We always support all the local sport programs and any other school fundraisers. Michael eyes lit up when he heard "cookie dough." I told her that she would be responsible for the two newly fat people walking by her house!

Well, it arrived yesterday and he cooked a batch after dinner last night. Coconut macadamia chocolate chip cookie dough. The aroma was just plain evil! I fell. How am I ever going to be able to resist these? I guess just plain resolve and extra time on a walk and at the other rehab. I already feel my thighs are not as defined as I would like so I really don't want to gain weight. That should keep me honest. But, I have to say, the aroma of baked cookies was still thick in the air this morning.

Just evil.

Thursday, November 19, 2015

Holiday Plan to Stay Well

Holidays are around the corner. A very busy time to spend time with relatives, hold new babies, attend parties with friends and co-workers and shop amongst the crowds of shoppers.

It is also a very scary time for those of us with no immune system because of prednisone. There is a nasty cold going around here and I can feel that the flu is just sneaking up behind it!

So, what do we do? What's the plan?

  • Shop for the holidays on Monday mornings or late evenings when there are no crowds.
  • Use hand cleaners climbing into the car. Every time.
  • Wash hands when arriving home from anywhere.
  • When hearing a cough, change directions and get out of the area.
  • Babies are full of germs. The worst illness I had three years ago was caused by holding a baby. Masks are good and washing hands afterwards is important.
  • Sick relatives show up at holiday celebrations. My family knows that if anyone is ill, I will not attend.
  • Attend work parties but keep it limited. If it is a buffet, eat after the party. People use the utensils and sneeze or cough or even breathe on the food. 
  • Avoid crowds of people. No movies, no concerts, no plays.
The goal is to stay well into the new year. 

Wednesday, November 18, 2015

Dumb Luck

We made it through yesterday's long trek into the Central Valley. Traffic driving out in the morning was terrible but we were able to keep to our schedule. We visited Dad at his crypt, added some fresh flowers, mom kissed the marble then we worked on her brother's plaque to shine it up. We drove to her old hometown for coffee before meeting her friends for lunch. We had a ball. Her best friend Grace, also raised in Chicago and born in 1928 like mom, looked so much older than the last time we saw her. She needed a walker to get around and very slumped over. Rather sad to see from such a dynamic woman.

We are planning to attending a meeting of our Patient Advisory Board late this afternoon. There are nineteen members but only about six regularly attend. With that small of a group, our voices are heard. They also serve a heck of a dinner!

About a month ago, I had my first Fibroscan to test for scaring of my liver. It is so less invasive than a biopsy as it uses sound waves to determine the thickness of the liver. Michael and I will see the liver doctor tomorrow morning to find out the results of the test. As I have had a biopsy of my liver, and the results were excellent, I am expecting a good report. With all the medications I have taken over the past eleven years, I am convinced that had I been a person who had wine with dinner or a cocktail once a week, I would be in deep trouble right now. Dumb luck!

Tuesday, November 17, 2015

Partners in Care

I was mis-diagnosed. Most people with an ILD are mis-diagnosed. Most people with Hypersensitivity Pneumonitis are mis-diagnosed. I saw a local doctor in July but by August, I knew I had to go over his head. He was not sending me along to a pulmonologist and I was becoming sicker and sicker.

I took matters into my own hands by calling my endocrinologist to beg for a referral to my university hospital. I was in the chest clinic by October.

But, what makes this story end well is that I met Dr. K. the following May when she was hired as head of the clinic. Before that, there was no specific doctor in charge of my case, just a resident who was impossible to reach. I was floundering after the biopsy.

After all these years, I realized just recently that Dr. K. saved my life by taking me under her care. Pulmonary rehab! Testing for GERD! Testing to see if I could fly! Testing to see if I needed oxygen at night! I can't even remember all the tests she ran me through! She has driven my disease from the very beginning.

What happens if a patient never meets a Dr. K? What happens if a patient bumps up against doctors who resent the patient asking for a second opinion then won't even consider their report? What happens when they refused to even confer or work with other doctors?

We, as patients, have to be advocates for ourselves and educate ourselves while trying to deal with a fatal diagnosis and, frankly, being very sick. We are not doctors. We are not trained and being in that role is often terrifying.

A woman who interviewed us to be on the board at our hospital has taken a job on another continent. I love her position: Chief Experience Officer.

After a horrible personal experience, she dealt with "poor care-coordination, confusing communication and unreliable transitions and hands-offs, rushed or un-empathetic care, this invariably leads to increased anxiety, frustration, fear and misery." She also points to the latest research that shows a connection between a positive patient experience and improved outcomes.

It is a growing movement: to reduce patient suffering and provide seamless, compassionate, individualized and empathetic care experience, while also engaging them as partners in their care.

Wow. Doesn't that make so much sense? 

Monday, November 16, 2015

Fireplaces

Fireplaces. Wood or chemically-laced fake wood or pellet burning fireplaces are my nemesis. The neighbors next door are lighting theirs beginning yesterday and at 3AM this morning. I woke up immediately with our bedroom smelling of chemicals. Michael went up into the attic and said it is even smellier up there.

Traditions. I am big on traditions like cozy fireplaces during the cold holidays. My lungs just can't take it anymore. There is a bill making its way through the California Legislature demanding the end of wood-burning fireplaces. Gas only. Fake wood. No smell.

Yes, please. Can't breathe.

If you have a relative dealing with a lung disease, please show some empathy and not burn such things in your fireplace.

I am taking my oxygen and heading out early to the other rehab. It will feel so good to workout and try to get my thighs back. They are beginning to look funny. Mom and I are going shopping. She is itchy to buy some new clothes and I will be the assistant. Tomorrow, we are leaving to visit my dad and to have lunch with her girlfriends in the Valley. It is a long drive to and from but so worth it for me when I see her with the girls. Dear friends. I think she really misses them.

Sunday, November 15, 2015

Quiet Before the Storm

Today is the day my dad died in 1997 after elective surgery and a month in the hospital. (HERE) My mom continues to dream about him every night and sometimes they just talk together about their children and grandchildren. She is deeply comforted by these dreams. She still misses him and we will be visiting his crypt this week. She decorates it for the holidays.

Rehab Dick phoned yesterday to let me know they are going ahead with a biopsy of the tumor growing on the outside of his lung. There were questions of whether he was strong enough for the biopsy and if his lung would collapse during the process. A tumor board recommended the biopsy and he has agreed to it after Thanksgiving, in case his stay in the hospital is longer due to complications. He didn't want to ruin his family's holiday. So Dick.

I just didn't feel well yesterday. After doing the gardening, I napped on and off most of the day but just felt off. No fever. No coughing. Just...off.

Michael glanced over to me and said, "It is really okay if you want to go to bed at 7:30." I was gone and asleep by 7:45. Maybe I just needed more rest as I am feeling so much better this morning. Michael and I will be together all day so it will be quiet but wet and cold outside. Perfect fall day. A quiet before the storm of an extremely busy week next week.

Saturday, November 14, 2015

Paris

After lots of phone calls, emails and messages from friends and relatives, we were able to connect with our son after the attacks in Paris. He was shaken. He is in Luxembourg for a weekend of concerts but had worked the concert venue in Paris many times. The band on stage during the attack, The Eagles of Death Metal, was primarily made up of veterans from Palm Desert, California. The Deftones were due to perform Saturday night and were actually backstage watching the concert, then left minutes before the attack. They are friends and he was happy they were safe. William also commented that had it happened while his group was performing, he would have been in a terrible spot.

A bit too close for comfort.

They only have three more concerts after this weekend before they fly home. Home. Never sounded so good. I wonder if this will change what he does for a living. For ten years, he has loved to travel and eat the local food in countries on five continents as a perk of his job as the head live sound engineer for major groups.

It's a dangerous world right now. I will be holding my breath until he gets on a plane on the 17th.

Friday, November 13, 2015

Fighting Back

We dealt with a marvelous Comcast tech who solved all of mom's problems. He came early so I missed the rehab class but was still able to have a nice visit with Sherman and Professor Richard. By the time I got home around 3PM, Michael had done another load of laundry and was beginning to think about dinner. When he began, I left him alone. I didn't want to micro-manage him. He made a delicious crustless quiche with some ham and cheese and Egg Beaters and cottage cheese.

I think it was even more tasty because I didn't make it! It was so nice to be served a homemade dinner.

It is another early morning for me, mom has a doctor appointment at 9:15 then we have to deal with a billing problem at another campus. We'll have a nice lunch somewhere then I have my meeting with the counselor this afternoon. She had suggested a book and I was able to find it yesterday. So very interesting. So much to learn.

I am looking forward to this weekend. We have NOTHING on the agenda. I will cut the grass, read my new book and take a few naps. We may even go for a ride down the coast. I need some downtime.

The stubborn cough is still present on occasion but the sneezing has stopped and I feel like the cold has been halted. The cocktail of a few days of Aprodine followed by a run of ColdCalm always seems to help. Maybe I have fought it back. I hope.

Thursday, November 12, 2015

Not Slowing Down

We had a great time with British Don last night and I was in bed by 9PM. Michael and I had spent the day running errands and buying food for the week. Lots of driving and hauling heavy bags into the house. Thank you, Michael.

Mom phoned last night. Comcast had increased her bill, she contacted them and they talked her into adding her phone to "bundle" her account. I set it all up on Monday, except the living room phone did not work and we had a hard time getting her WiFi hooked up. She, apparently, had been on the phone with Comcast for two days trying to get everything up and running. Now, she is unable to make any phone calls. She is 87-years old! She needs to be able to reach 911! Get this: They told her that the living room phone would need to be a separate phone number and it would cost her as a second account.

The guy is due to set things up for her today from 2-4. I will be waiting.

Maybe, idiot, run a phone cord from the living room to the modem in the bedroom. No second number. No extra cost. He will not be leaving without having everything working - both TVs, both phones, the computer and the Wifi.

Michael, in the meantime, will be making a crustless quiche for dinner. By the time I get home in the rush hour traffic, it will be hot and ready. How great is that?

But, before I see her, I will go to the rehab class and sweat and talk and feel better afterwards.

Another full, active day ahead. I will make sure to appreciate every moment.

Wednesday, November 11, 2015

Changing Password

Sorry about no blog yesterday. The alarm rang at 5:30, I had to be out the door by 6:50 for an appointment for mom. No problem until we turned on the news to find that Comcast was recommending changing passwords. My computer had been doing weird things, I ran into a malware site when opening a recipe then earlier something downloaded, which I quickly deleted, trashed, emptied trash and restarted the computer.

I got into my Comcast account site but could not answer my security question. The clock was ticking. I was able to live chat with Travis, who was wonderful. After 15-minutes, I was able to reset my password and off I went with two bites of breakfast but all my medications on board.

Problem. Lots of traffic here on the coastside. Lots of traffic on the other side trying to get to mom. She actually was in her car and ready for me. We flew down the freeway, more hideous traffic, and arrived exhausted at her university hospital. We decided to get her a bit of food at the clinic to let the traffic settle down.

We went to a mall miles north to visit JC Penney for pajamas for Michael's mom. Great choices available. I bought two pair, which will be in the mail today. After dropping mom back at her house, I headed to the rehab class.

Dick looked good but was trying not to think about the cancerous tumor growing on the outside of his lungs. After being reviewed by a tumor board, he has an appointment on the 23rd with his doctor to discuss his options. Sherman looked fantastic and was full of the old Nick. It felt great to workout and sweat but also to check-in with everyone. I had been gone a week.

Michael was home when I arrived and surprised me by having done all the laundry by himself! Even had it all folded on the bed! Miracles do happen!! Finally, after a very rushed and frantic day, I was able to take a deep breath and relax before making dinner. Afterwards, I ironed just four shirts so I wouldn't have to do it today.

Today. We will be together all day. Lots of errands this morning then lunch over the pass then food shopping. We are meeting British Don for an early dinner in the city to celebrate our birthdays. I am still fighting something, been taking my Aprodine at night but will start Coldcalm today.

Monday, November 9, 2015

A Birthday

Well, it's my birthday today. When one is told they have a limited number of years left on this earth, each birthday ticks one more year closer to the end. I used to hate them and not want to celebrate them until I turned 60 a few years ago. Sixty. I was not expected to live to see sixty, yet there I was celebrating that milestone. It was also the year we celebrated our 40th anniversary, which had been our goal for so many years. Now, we wonder and wish that we will be together to celebrate our 50th together in 2023. Doesn't seems so impossible now.

I appreciate and am grateful for each year and each day, so I will be celebrating today. There will be cake! There will be a birthday wish when I blow out the candles!

There will also be glorious rain. We so need it and it is a special birthday present.

Michael and I are running a couple of errands then going to a special lunch. Nothing too fancy. Just right. We will then drive mom to her post-op eye doctor appointment and fight all the horrible rush hour traffic coming home. But, we won't care. We will be together.

My hope for the year ahead? Project #1 is still in process and should be completed within the year. Project #2 kickoff is tomorrow night in the city. I hope it takes me another step closer in my goal of working with more people who are struggling with a bad diagnosis. I think that is my life's work.

Sunday, November 8, 2015

Catching our Breath

I am sleeping so much and beginning to feel like I have fought back getting a cold. Good news! The yards were in pretty good shape so I worked only a couple of hours in them and was dozing when Michael got home around 2:30PM. The house was warm, the sun streaming in and I felt like a cat in the sun. I made a delicious Lamb Stew for dinner so our bellies were warm and satisfied.

Rain is expected later today and tomorrow on my birthday. Isn't it lucky to have rain on a birthday or is that just on a wedding day?

Michael and I are staying home today. A rare event. Football (oh, those poor 49ers) and a nap are the only things on our agenda. Oh, and I will be teaching Michael how to do the laundry. A quiet day.

Saturday, November 7, 2015

Spotlight, Please

It was like going home. As members on the Patient Advisory Board, we spoke with the staff at the pulmonary clinic at my university hospital. The room was filled with dear friends I have been working with through the years. It is the finest clinic of the thirteen I have visited. Organized. Efficient. Friendly.

There is nothing like being greeted by name and not asked to show ID. After I got out of the hospital with pneumonia a couple of years ago, I checked in for a visit with Dr. K. "I've been in the hospital," I shared with the staff. Each and every one of them said, "I know!" They knew. Amazing. And, when I returned two week later, each and every one of them said, "You look so much better!"

They wanted our input on a few issues from the perspective of a patient. It was a conversation.

Michael said afterwards that it was the best of all of our presentations. He is beginning to feel more comfortable speaking in front of an audience and it was not on a big stage but in a classroom.

It was a very satisfying experience.

Friday, November 6, 2015

New Chores

It is amazing all the things that demanded our attention yesterday after being gone just a few days! We were both exhausted and slept through the night. We did see mom and will return to spend more time with her today before we go to a meeting at my university hospital after lunch. More on that tomorrow.

Michael did the grocery shopping with me, I was able to make some hard-boiled eggs for his breakfasts and a pizza for my breakfasts or lunches. Dinner was delicious and it was good to be home and eating our own foods.

The women where Michael worked used to tell him that he was so lucky to have me. I did everything. He replied that he made coffee in the morning. In the car driving home from LA, I asked what he was going to do to help me since he was now retired. What chores? I suggested the laundry and that he cook dinner one night a week. That includes cleaning up. So, that leads us to advanced chores: loading the dishwasher. He agreed and told everyone we ran into yesterday about his new chores. Even the clerk at Safeway!

What I have also asked was that he help with the food shopping. I shop at the butcher's, Trader Joe's, Safeway and sometimes our little organic market all in one day. By the time I haul it all to the car then into the house and finally put it all way, I am pooped.

We are having fun blending our daily lives and schedules together. This retirement thing is okay.

Thursday, November 5, 2015

Back Home from LA

 Anna and Doug have the perfect setup for their three grandchildren. Anna has everything so well organized and spotless that everything looks so comfortable and welcoming. She even bought a new bedspread for her guest bed! For us!! What a woman.

Doug is doing so amazingly well after his brain surgery just months ago. A bit of short term memory issues but, wow. His tumor was the size of a tennis ball.

Anna, Michael and I took Michael's mom, Mary out to lunch the first day. It was a Vietnamese place just down the street from her home. Here is a photo of the Spring Rolls. HUGE!! Thomas, from Michael's work, told us to go to this place in Garden Grove named Brodards. They sell about 10,000 of these spring rolls per day. Yes, 10,000.

We talked and talked and returned the next day with Doug and Aunt Patty (Mary's sister) in tow for all of us to go to a German village for a fun sausage and sauerkraut lunch. And beer. Huge beer steins!

We took photos on Mary and Patty's front porch. Doug is in the white jacket, Michael in black. Anna and Michael are on both sides of their mom.

I had a ball talking with Anna's two of three children, April and William. Just plain fun.

On the drive home yesterday, we stopped just south of Santa Barbara in a tiny beach town for lunch sitting at a counter. Michael's favorite type of place to eat. It was fresh and delicious and we didn't need dinner! But, we did make a quick stop in the town of Solvang. The entire town is filled with bakeries, pastries, windmills and tourists! It was pretty quiet for a Tuesday.

We only bumped into some rush hour traffic in Castroville, of all places. It is a tiny agricultural town but access to Highway 1 goes right through it. Once we were on the Highway, we never slowed down.

It felt good to sleep in our own bed, there was frost on the car this morning and it is fall. Definitely fall. We are even expecting some rain on Monday!




Wednesday, November 4, 2015

Leaving

We are packing and ready to hit the road this morning. We have so enjoyed spending time with Michael's mom and his sister's family. Anna and Doug's youngest son William is in college and is one confident young man with a plan. Their daughter April joined us our first evening with her son Steven, who is in 1st grade.

Doug looks and feels fantastic after his brain surgery to remove a tennis-sized tumor. Very few lasting effects.

To be able to spend actual face time with these people has been so good for all of us. But now, it is time to get back to our lives.

Will posts photos from home tomorrow.

Monday, November 2, 2015

LA Story

We made it! We did run into a classic freeway traffic jam on the Pasedena where it was stopped. Totally stopped. We sat for over thirty minutes then made our way to an exit. With no idea what we were doing, we followed the other cars through the streets, made two illegal turns and got back onto the freeway just ahead of the jackknifed truck blocking all lanes. We flew!

Anna and Doug are doing so well and Doug shows no negative signs of his brain tumor surgery. Their daughter April came by with her son so we were able to get caught up.

We are heading to Michael's mom's house within the hour. It will be great to see her after two years.

I slept well. The sciatica is not too bad this morning.

Sunday, November 1, 2015

Road Trip Begins

Here we go. It is 5:30AM and we are packing up the Porsche for our road trip to LA. First stop? Harris Ranch for breakfast in about three hours. We are driving into 90 degree weather so we are freezing at the moment but know we will be craving this coolness in a few hours.

Hopefully, I haven't forgotten much!

I have Michael's iPad with us so I will offer short blogs but save the photos for the blogs after we get home.