Living Well with a Bad Diagnosis - Lung Disease

Sunday, December 31, 2017

Leaving Palm Springs


I have lost track of the time and date! No television or radio for a few days will do that, I guess. It is like we were in a bubble for four days. A perfect bubble. We spent a lot of time sitting on a couch in a living room overlooking a pool surrounded by palm trees with a backdrop of a bright blue sky and the mountains looming close by. The weather was in the high 70s during the days and into the 40s at night. Good sleeping weather. It was our first experience with a form mattress and it was FANTASTIC! We will take a look at them as we need a new mattress soon.

It was the perfect place to spend hours talking with our son. It felt great. We must do it again next year!

We woke up Friday morning, removed the sheets from the beds, cleaned up the kitchen and were out the door by 11:00. The airport was all of five minutes away. William had flown in and out of it several times because of the Coachella Festival so he knew the drill. We said our goodbyes then began the 90-minute drive to Anna and Doug's.

It was so good to see them and hear all about their lives. They spend most days of the week split between the two families of grandchildren and other interests that keeps them hopping. They took us out to dinner to a fantastic place near their house. Lamb Burger (I had just a bit of the bun) and a fantastic salad of greens with the best white balsamic dressing. Delicious. We talked until I was falling asleep.

Doug made some chorizo and eggs for our breakfast, we dressed and hit the road home around 9AM. Traffic was a challenge. Others were also returning from the Christmas holiday and sometimes it was a zoo. The people in LA really tailgate going well over the speed limit and we saw more road rage in the four days we were there than we have seen. Ever.

We wove our way home on Highway 5, over a pass into Gilroy, up into the Silicon Valley then north to the pass to our little home on the coast. Home. It felt great and seemed like we had been gone a long time.

Phase two begins today. We are meeting British Don for our last meal together. Lunch in the city. Afterward, we will buy groceries for the week. Tomorrow, Michael will drive both Don and his cat to the airport around 6AM for his move to Oklahoma City. Gratefully, Michael is going alone so I can swing by to see my mom, who is having computer problems. The fun never ends!

Friday, December 29, 2017

Saying Goodbye

Resting. Relaxing. The weather was perfect yesterday. There is a smell here in the desert that invites relaxation. Can't describe it other than it entices one to slow down. We are having fun doing nothing.

The boys did go bowling yesterday after having our car washed. No one fell! Michael beat William in two games and they laughed the entire time. The people surrounding us were all involved with each other's play so it was fun and felt like friends playing together.

We drove down to Palm Desert - the Beverly Hills of the area - and bought a few tiny items before driving back to the house where we hung out for a couple of hours. After a bit of research, we found a dinner place that served a lot of Cuban food, not a fancy restaurant. It also had a variety of other styles and Michael chose a pasta in a spicy tomato sauce with chicken. But, he ordered it for the side of garlic bread! He said the entire meal was delicious. We all agreed the place was perfect for how we were dressed and felt! Afterward, we drove a bit to a Tiki Bar that was just plain fun. It was attached to a Mid-Century Modern hotel so kids were even enjoying the fun. William bought Michael a really cute Tiki mug!

William needs to be at the airport by 11AM so we have a lot to do this morning. Packing, removing sheets and towels to the laundry area in the garage, dishes to be washed, everything ready so the cleaners can get the place ready for the next group.

It has been an amazing house with amazing art and amazing authentic Mid-Century Modern furniture (and some less famous designers, too). It has been a hoot living in this type of home for a few days.

As we say goodbye to Palm Springs, we will be saying hello to Anna and Doug, who live just 90-minutes away. We will be staying there for the night then driving the coast on Saturday. It should be a beautiful but sad drive. We will be passing through some of the hardest hit areas from the recent fires. So very sad.

Thursday, December 28, 2017

Palm Springs Day 2

We had great plans but everything changed by the time we got out the door into Palm Springs. Michael and William were going to take the Tram up 10,000 feet to the top of the mountain on the western side of the valley, a Palm Springs landmark. No way could I do 10,000 feet so they left me at a cool casino. I was having fun and after over an hour later, they were suddenly standing next to me in the casino! The drive up to the parking lot for the tram was steep but once there, they discovered the wait was going to be two hours. Forget it! They came back and we headed home to talk and snack. We decided to skip lunch after a late breakfast so we could have an early dinner.

After some research, we discovered an authentic Mexican restaurant with great reviews so off we went! It was delicious!

One of William's friend's from LA drove out and met him at a Tiki Bar here in Palm Springs last night around 6:00. He Uber-ed into town and back. Michael and I fell into bed at 7:00 and slept eleven hours. We are really sleeping well here. Perfect cool temperatures at night. Mild, warm days.

We all are enjoying having no plans or no "have to" items on any agenda. Totally relaxed. I have a feeling we might be visiting one of the Tiki Bars this afternoon. Who knows where we are going for dinner?!

Wednesday, December 27, 2017

Post Christmas Recovery


Here we are! Palm Springs. Warm. Luscious. Beautiful. This was the view from the kitchen window this morning. The long ride south was a challenge as the main freeway had three, count'em, three accidents within a short span. The traffic was a nightmare and one of us needed a bathroom (Michael) so off the freeway we went! We saw the best (?) parts of Beaumont and worked our way back onto the freeway just past the final accident. It added over an hour to our trip.

The house had no address on it and, while I was walking trying to find it, the cleaning people came out to let me know this was the house! It is BEAUTIFUL and so much nicer than expected. A Mid-Century Modern filled with antiques and fun art. But NASA, we had a problem. The locking system would not work, the owner's agent had to go back to the office and brought back a low-tech key! What a concept! That took some time, which William used to find a great, simple, cool place for dinner. He and I than made our way into the hot tub for a few hours of conversation. A mother's dream.

Today, we are off to Joshua Tree. William has been there before and knows what he wants to show us. The weather will be in the 70s with lots and lots of sunshine!

What a way to finish off 2017.

Monday, December 25, 2017

Home

Merry Christmas! We made another year together! I so hope you have a wonderful day with your family and dear friends. We have our son home for the first time in two years. It feels like heaven. Face to face conversation! What a concept!

Mom has come down with a cold so she will be wearing a mask all day. Michael is picking her up at her home later this morning. We will have a lite lunch, open presents then off to an early dinner over the hill. A lovely new tradition. No five hours in a car in traffic. No stacks of dirty dishes.

We have been enjoying our time with William. He actually made most of the dinner last night, loved the Heritage Pork Chops and had three helping of the homemade applesauce. Does a mother's heart good. All this was going on while the neighbors dropped off goodies and he and Michael actually delivered a few. We met the new neighbors and their two adorable boys. I especially fell in love with the almost 3-year old and I know that we are going to be buddies, I can tell. Great parents, too!

So many people wanted to see William but we promised nothing as we didn't know if he just wanted to chill out or up for visits. He really wanted to see Wayne, Jill and their sons so we spent about two hours with them before dinner. William has known the boys since they were babies. Now, the youngest is in his second year of college and the oldest is of drinking age! Where did the time go?

The house feels complete with William home. I am cooking some bacon in the oven and will open up a tube of Grand Cinnamon Rolls, unroll them and lay a piece of cooked bacon then roll them back up for baking. A Christmas tradition. The house will smell like Christmas soon!

Merry Christmas, dear reader. May you enjoy all of the joys of the season.

Sunday, December 24, 2017

A Snag

Christmas Eve. Let the fun begin! Coffee with British Don in the morning then to the airport to grab William as he gets off the plane then home for a fantastic dinner before going to the neighbors and other friends for fun. I am ready for Christmas day and our trip.

Yesterday, two of the neighbors stopped by to share their goodies a day early but I was ready! My crazy fudge was a hit. For two hours in the morning, I organized a lot of things for the trip, picked up each room, dusted the floors and vacuumed the rugs and carpets. Then, I made the Gingerbread Cake. Oh yum. It was baked in a tube pan and has no frosting so it will be delicious with coffee. It is going on the road with us.

It was 1:30PM. I was ready. I was finished. I was getting ready to get dressed for Rick and Natalie's as I tossed the final paper towel into the kitchen garbage. Somehow, I snagged the top of my right hand on a piece of plastic on the top of the cabinet. It peeled about 1-1/5" of skin back. I quickly moved the skin back into place then applied pressure as the doorbell rang. My personal hero Michael had arrived home right on time. He took over. I quickly had a nice bandage in place. It was then I remembered that we were heading to Natalie's in a couple of hours and before being a nursing professor, she was a home care nurse with a specialty of wound care. As soon as she saw Michael's bandage, she took it off and applied a professional one. I'll be fine.

Whenever William is home, it somehow feels like the house is full again. Back to normal. I just want to drink that up and enjoy him back in our lives for a few days. Here we go!

Saturday, December 23, 2017

Conversation

What a day! I fell into bed last night and passed out! Mom and I worked on her new Jitterbug and I was able to show her all the other fun apps on the phone. She was also having computer problems but I realized it was her and not the computer! We went step by step and I think she was feeling better about one of her problems. After a few errands, we went to the Cheesecake Factory for lunch. It was a zoo! Our table overlooked an entrance to the mall and the line of cars was endless.

While mom was in the bathroom and I was waiting for our table, a couple walked in with a clearly unhappy 5-year old in tow. He was clinging to mom's legs and dad crouched down to his level to chat about the expectations of his behavior. He wanted to shop. He wanted to play. He wanted to do anything but sit in a restaurant and eat. He became to be vocal and the mom glanced over to me. I smiled and while she held him, I said, "I remember this! He is now 36-years old and I still remember doing this! Every mom in this place remembers this so don't think we are judging you, we have empathy for you!"

She immediately seemed to relax, smiled and thanked me. The dad began telling me about their two other teen-aged children and that they were older parents. He told me that this little kid was one strong person and hard to raise. I smiled at him and said, "I understand more than you know. I was that child. The secret is to put his behavior in his hands as early as he is able to handle it. I will bet that he will never do what he is TOLD to do and sometimes a gentle suggestion is all that it took for me."

The father paused and replied that other relatives had also said something similar to them.

Just then mom returned, he turned and said, "Your daughter was just telling us how delightful her mother is." So sweet. Just then my name was called and we wished each other a Merry Christmas.

I hope bumping into each other helped and maybe, just maybe the dad will reconsider his parenting style for this child.

After getting home, I had a delightful phone conversation with a dear friend. It was lovely to hear her voice and to get an update of her life. A very nice gift.

Then, the madness began. I made a huge pot of homemade applesauce and let it rest while we went out to dinner just up the road. Back at the house, I smashed the cooked apples but left some small chunks. Done. Next, the fudge for the neighbors. I needed enough for seven households so I made three pans. Michael loved watching and, at the end, finally got to lick the bowl! Done!

While all this was going on, the Wi-Fi kept going in and out while I was trying to sign the contract for the Air B&B. Then, I discovered I needed a cashier's check so BOOM, off to the bank in the middle of traffic madness. On the way home, I received a message from the owner saying the dates on the contract were wrong and that it will be voided and a new one sent. I waited until I went to bed. No contract. This morning, it was in my inbox. It is now signed, sealed and delivered!

Today, it is dust and vacuum day! Then, I am making an old-fashioned Gingerbread Cake to serve on Christmas Eve and also take to Palm Springs with us. Also, I will continue to place clothes and other items in the guest room. I almost forgot to set out the portable oxygen system! Oh my! That would have been bad! We are also having appetizers at Rick and Natalie's tonight. Mike and Lisa invited us for cocktails tomorrow with their grown children. They wanted our children to meet. 'Tis the season.

William arrives tomorrow.

Friday, December 22, 2017

Countdown

Yesterday, the last rehab class of the year was so much fun. The RNs were dressed is silly costumes with funny hats and everyone was in good cheer. One of the sweetest women at rehab made fish ornaments out of ribbons for each of us AND brought in a large tray of sushi from one of the best restaurants in the area. We all enjoyed a piece or two after the class.

The RNs thanked me for the Sugar-Glazed Walnuts and mentioned how much they love them each year. So very nice.

A few days ago, my uncle's trust asked for an update of my health and any future possible medical needs. I wrote a three page reply, let it marinate overnight and worked on it again. And again. Let it sit again. Well, when I printed it out and realized it was three pages long, I realized it was too much information. Last night, it was if I was awakened by my dad with the words from my lawyer ringing in my ears, "Give them the minimum information." So at 2AM, I reworked the entire response to just the bare facts and whittled the response down to one page. I feel so much better about it. While I am with mom today, I will let it marinate once again and let it sit overnight before replying tomorrow.

Busy day ahead! William arrives Sunday so I have to dust and vacuum the house, make homemade applesauce for our Christmas Eve dinner and make the fudge for the neighborhood holiday goodie. I have a lot to do tomorrow so I want to get ahead of the game, so to speak.

I will be with mom all day and will take a serious look at her thumb to make sure it is healing properly.

Thursday, December 21, 2017

Final Rehab Class of the Year

Another day closer, another to-do list! I thought I did the full grocery shopping yesterday but nooooo, I forgot that we have been invited to Rick and Natalie's for appetizers on Saturday evening and I promised to bring a little something. Sooooo, after a shower, it's back to Safeway this morning and I also forgot to buy the travel size of Miralax.

Today is the final rehab class of the year so I made my Sugar-Glazed Walnuts for the two RNs and also Christina, who I have known since I started rehab in 2005. She often will swings by for a chat and we stay in touch but she no longer works in our rehab class. She LOVES my Christmas walnut treats so I also made a special bag for her.

I just can't believe the end of the year is here. 2017 just flew by. I find it a bit ironic that it began with a trip to Palm Springs as a Christmas present from William and it will end with a trip to Palm Springs WITH William. Why Palm Springs? It is in the desert, warm, dry, beautiful and so many things to see and do. It is known for its Mid-Century Modern architecture, a passion of William's. Its weather is the exact opposite of ours on the coastside and sometimes it is a nice change of pace.

This year will always be known as the year of the fractured knee for me. It took about 18-weeks to heal and I still wrap it when I notice it is beginning to swell. It slowed me down. I still am not back to the levels I was in the rehab class before the incident.

My goal for 2018 is to increase my exercise, without straining my knee, and seeing the muscles returning to my thighs! I am happy with my weight so I don't have to make that New Year's resolution, thank goodness. We want to take a trip in May. Michael's mom needs a visit and she is all the way across the country. Hopefully, I will be well enough!

Wednesday, December 20, 2017

Checking My Lists

I am having Comcast issues so I am writing this when I have a bit of Wi-Fi. I did go to the rehab class on Tuesday and it felt fantastic to work out. Jeannie and I actually had an interesting conversation with the new guy who seems to be universally disliked. We learned that he was a recent transplant from Oklahoma and was a sales representative, thus the loud endless commenting. We actually had him speaking in a normal volume and learned a bit about his life. I think we calmed him down a bit, too. Maybe there is hope that we showed others in the class to not totally dismiss him. It is going to take some time as he is a challenge to be around.

The laundry and ironing for the trip did get done yesterday and the clothes are being gathered in the guest room ready to be packed on Christmas evening. I was so cold and tired last evening that I grabbed a light blanket and promptly fell asleep about 6:15! We both were awake by 5AM!

This morning, I did some banking then bought all the food I am going to need until we leave including Christmas Eve dinner and Christmas lunch. Within minutes, I will be making four pounds of Sugar-Glazed Walnuts to give as gifts to the rehab staff along with a bit of cash as a thank you for all of their hard work. I will deliver them tomorrow before the class.

Each year, all the people in our little cul-de-sac exchange homemade goodies, which gives us all a chance to see each other and offer holiday cheer. I am making a peanut butter, chocolate, butterscotch, marshmallow, cocktail peanut fudge this year. We usually exchange on Christmas Eve so I must be ready!

Tuesday, December 19, 2017

Stop at Immediate Care

What a day yesterday! Mom bought a Jitterbug cell phone for older people, simple to use with big letters and numbers. It took about two hours to program and activate it. Then, she was also having issues with her email on her computer, which ended up being an easy fix. I was pooped! So, we headed to lunch then to my butcher to buy Heritage Pork Chops for Christmas Eve dinner with William before driving mom to an Immediate Care place.

While having lunch, she mentioned that her infected cuticle was not getting better after three weeks and after using an antibiotic cream from the drug store. I looked at it and OMG! Her thumb was grey, swollen and looked horrible. I asked if she would go to Immediate Care on Tuesday but she said she didn't have time on Tuesday. That was it. I told her we would stop on our way to her house.

There were only two cars out front so no waiting! We were seeing the doctor within five minutes. He actually had to cut into her infection to get the pus out and prescribed oral antibiotics. Off to Walgreens we went then I finally drove her home.

Michael and I ate a lite dinner then drove down the coast at sunset. It was a picture postcard. The ocean was mild, so very blue and just beautiful. We went to the famous restaurant in the tiny town about 12 miles south of us, bought some Olallieberry syrup and jam for gifts then we had a piece of Olallieberry pie and coffee. It was delicious.

Both of us were in bed at 8PM and slept through the night.

I have a list of all the things I need to do today. After the rehab class, I will do a load of wash and some ironing and begin to lay everything out on the bed in the guest room in preparation of the trip.

Monday, December 18, 2017

Final Week to Christmas

Yesterday, I got word from the woman who had been waiting for lung transplants for over a year, mostly because of her tiny size, had a double lung transplant five days ago. She was the person who I was told about during the family wedding on the Queen Mary and Kristina asked if I could contact her as she was so despondent over the long wait. She then suddenly had a collapsed lung, was hospitalized for over six weeks while her transplant number rose to the top of the list. She was one sick puppy. She was transferred to another hospital where she was also listed and it happened. She is now waiting to be moved into the patient residence on the property as they want her close by for testing for three months. My heart soared for her but I was thinking mostly of her young daughter. She will have her mother back soon. What a gift. Thank you to the donor and family, whoever you are!

It is the final week before Christmas. We are so not ready but I have a list of what needs to be accomplished each day. Mom's email is a problem and her new Jitterbug needs to be programed so that will be the focus this morning and we also need to pick up three Heritage Pork Chops for Christmas Eve dinner. William suggested steaks until he found out we are going to a Prime Rib place for Christmas dinner and when I mentioned the remarkable flavor of these chops, he responded with a resounding YES. I'll even make some homemade applesauce and even thinking of making an old-fashioned Gingerbread Cake, which we can take with us to Palm Springs.

This evening, Michael and I will take a drive down the coast to the fantastic restaurant with the great artichoke soup to buy their Olallieberry Syrup and some jam made with their own berries for the owner of the AirB&B as a nice touch when we meet with him to sign in.

Sunday, December 17, 2017

Driving

It's been a nice weekend with lots of time in a car! Friday, mom and I drove over the pass for her appointments here in town, we had lunch at the Ritz pro shop then back over the pass to her home then I drove one more time to our house. All was fine.

Saturday, I was able to drive back over the pass to do the food shopping, stopped in town for a Safeway run on the way home then did some cooking. Deviled eggs for our breakfasts. I even roasted a lovely turkey breast served with cole slaw for dinner last night.

William checked in yesterday, plans to fly home on Christmas Eve, spend Christmas here with my mom then the three of us will head to Palm Springs. He is trying to get the new nightclub up and running by February but has another tour beginning in January so every day away from the job site counts. Because of that, he will be flying home from Palm Springs. Soooo, we are thinking of asking if Anna and Doug want a quick visit on our way home.

Today, the windows are going to be washed while Michael is in the city helping British Don for an hour or so. I also plan to make a pot of vegetable soup. A simple Sunday. I don't even want to think about everything that needs to be done next week! We still have not finished Christmas shopping!

Friday, December 15, 2017

Survived Thursday

Hair day! The housekeepers arrived and I took off for CVS and Peet's before my hair appointment. Done! She even got me out the door about 5 minutes early! I was able to pick Jeannie up on time and we had a nice ride over the pass to the rehab class. Everyone greeted us as we had missed three classes due to my doctor appointments. I was feeling so well that I kicked up my time and speed on the treadmill and did the rest of the routine with glee. It felt fantastic!

We were almost involved in a nasty accident on the way back over the pass. I had allowed a car to pull in front of me and as we went into a sweeping turn just before the pass, a crazy woman going very fast in an oncoming car totally missed the curve and was aiming head-on at the car in front of us. I saw it coming, was pulling over to the right, blew my horn, the car in front headed to the right, she swerved at the last moment and disaster was averted. My heart was pounding. It was a bit too close.

I had so much energy, I cooked an amazing dinner of lamb and vegetables while Michael hung more Christmas lights on the side of the house for Ron and Susan. He also bought my poinsettias so the house looks like Christmas just in time for a visit from mom today.

She has a toenail appointment this morning then we are meeting with our investment people at 1:00. After lunch, we are going to swing by the house for her so see everything. It will help put her in the old Christmas spirit!

If we get through the day, I will have make it through a week of doctors and other appointments. I do want to mention that I got an email from Dr. K. who did some research and discovered that I was checked for h pylori and it was negative. I am now waiting to hear from the lung transplant clinic to arrange an appointment with the head to discuss the re-do surgery and other options. No hurry.

Thursday, December 14, 2017

And the Doctor Said

It was an interesting visit with Dr. K. At one point, she threw up her hands with frustration because we were dealing with all acid reflux issues and nothing about her specialty, LUNGS! But, I had learned so much on how to deal with Dr. K. while working with the life coach a couple of years ago. I sat back on the chair, my feet flat on the floor with my hands relaxed on my lap. It worked so well yesterday. I also said that the reason I wanted her advice about the surgery re-do of the Nissen was that I so trusted her opinion more than anyone's. She calmed down.

She also looked at my "gout" on my finger and side it was osteoarthritis. I believe her.

So, she believed that the surgeon has experience re-doing Nissen's but she also told me of her concern. She worried that if I go through with this surgery, it may kick my ILD into high gear and I will need emergency lung transplants. But, as she is a cystic fibrosis specialist, she wants me to meet with the head of the lung transplant clinic for his opinion of whether I should go through the surgery or if medication could be a stopgap, knowing that it is not the best solution.

She also wants me to see an gastroenterologist for their advice.

All in all, I now feel there is no big hurry to make a decision and that is making me feel better. Time to gather information.

During the drive home, I let everything marinate in my brain and made the decision that I wanted a nice dinner out to talk it through with Michael. He is such a good guy. I drove up into the driveway and there he was, finishing working in the front yard getting ready for Christmas. Dinner out? Sure! We went to the nice seafood place a couple miles north of us near the harbor, watched the sunset over the water and talked. It was perfect and exactly what I needed.

Sleeping. It was once again remarkable since kicking up my oxygen to 2.5 liters. I fell asleep around 8PM and slept through the night until I forced myself out of bed at 6AM. The housekeepers are due early this morning so I need to get out of here! Hair day! Jeannie and rehab class today!

Wednesday, December 13, 2017

Back to the City - Hello Dr. K!

OUCH! That was my day yesterday!

Everything went as planned. I was able to buy some fantastic tinned fish for Michael's mom. She loves herring and sardines and I even found some kippers and smoked oysters along with some good bland crackers. She will love them all! Also included in the package, besides the new clothes, was a pound of Holiday Blend from Peet's Coffee. I rushed home to wrap everything then back to town and the UPS store. Done. On its way! Deep sigh of relief.

Off I went to the city for my once a year dermatologist appointment. I love her. Besides being gorgeous, she is smart and funny. She zapped about three dozen spots on my body. Not a lot of pain except for one spot. This spot, on the palm of my left hand, has been bothering me for over a year. I forgot to show it to her last year. She zapped it and it hurt! Really hurt! So very tender. I was grateful that the rehearsal with the Irish Fiddlers was cancelled as I am not sure I could have played. This morning, it is a large, swollen welt. Looks like a water blister. It will eventually shrink into a scar and go away in about eight weeks. She found some spots on my scalp and a very serious one on my leg. If it does not totally go away, she wants to see me for a biopsy. One of my drugs leaves my skin susceptible to skin cancer.

Michael bought new batteries for both cars, installed them then left me at 6:30 to help Wayne put one in his car. I thought I would just put my head on a pillow on the couch and, before I knew it, he was home and it was 8:00! I slept so well last night!

This morning, I need gas for another long drive to the city and three boxes of See's Candy for the housekeepers. Tomorrow will be the last time we will see them before Christmas. I also include cash in a card as a thank you for their hard work.

The bad news is that I am feeling a cold coming on. I will fill the day with Coldcalm and try to slow it down and lessen its impact. This will be a subject during my appointment this afternoon with Dr. K. The most important subject will be about the problem with my Nissen Fundoplication, the inexperience of my surgeon on re-doing the surgery, the question of medication vs surgery and I will be asking for her advice. We will figure something out together. I hope!

Tuesday, December 12, 2017

Returning Stamina!

Tuesday of a busy week! It is going to be a jammed packed day.

Yesterday, mom and I chatted a bit, tried to return a lamp to Target but forgot the lamp! It wasn't until we were getting out of the car at Target that it occurred to us. What can I say? We had been talking! So, off to her Costco appointment to have her eyes checked for reading glasses. Well, that didn't work either! The front office showed us where she had  just been checked less than 6-months ago! The information was right on the prescription! Cancel the appointment!

We had an early lunch, I dropped her off then met Michael at the mall for a few house of Christmas shopping. Now, he was really good at shopping but it was just that he wanted to do it all quickly and get out of the stores! We found great gifts for his mom, a few things for my mom and clothing for us. The funny thing about the whole experience was standing in line to pay for everything. We ended up talking to the women around us. Michael was rather embarrassed initially but I reminded him that talking to each other was what we women do! Men just don't! We met some really nice women and one reminded me to make our Christmas dinner reservations. I had completely forgotten to make them!

After we got home, I wrapped all the gifts. By 8AM this morning, I will be at the organic market buying some high quality tinned smoked oysters and sardines and anything else I can find. Mary loves that sort of thing and really can't afford to buy them herself. After buying a pound of Peet's coffee grounds, I will head home to wrap everything then head back to town to the UPS store. We also need a few things from Safeway.

All of the above has to be done by 11AM when I have to leave for my dermatologist appointment at the farthest campus of my university hospital. There are a few spots that need to be burned off.

Along with an Irish Fiddling rehearsal tonight, it is going to be a busy day.

I must once again remark about how well I am feeling after kicking up my nighttime oxygen to 2.5 liters from 2 liters. What a difference. I am no longer exhausted. That wall that would hit me in the mornings and make me pass out on the couch at 6AM is gone. My stamina level is returning.

Monday, December 11, 2017

Day 1 of a Busy Week

It's Monday. The beginning of a very busy week. One day at a time.

We spent yesterday with British Don, helped him buy some moving boxes after a fantastic New Orleans-style lunch. Always great conversation, we will miss our time with him when he moves later this month. Last night, I slept so well on the 2.5 liters of oxygen that I am going to stay there for a bit. No wheezing or coughing all night.

Mom and I are meeting this morning with her Costco eye doctor to check her eyes for reading glasses. She wants some made but also wants to know what strength she should buy at the drug store as she stashes them all over her house. The good ones will be for reading and computer work, the others will be for everything else!

After lunch, Michael and I are meeting at the mall to begin our Christmas shopping. We want to get his mom's presents in the mail by tomorrow. He will pick out a nice but casual outfit for her to hang out in or even wear when she goes out to lunch. I will add some Peet's Coffee, good sardines, smoked oysters, crackers and anything else I spot to the package. We also ordered some special goodies from Harry and David to arrive in a few days.

While shopping, we will use mom's money to buy presents for ourselves and a few things for my mom. Should be fun!

Sunday, December 10, 2017

Adorable Jingle Bells

The Irish Fiddling gig Friday night was so much fun. Festive! We even threw in a few Christmas songs including an Irish version of Jingle Bells. There was an adorable little boy about 2-1/5 years old sitting at a table near us who was just totally entranced with the music. Leslie offered him the small band of jingle bells to shake during the song. He jumped up, stood in front of us, jingled the bells, laughed and danced. He was amazing. A crowd quickly grew as people sang along and cheered him on. He was magnificent!

It made the night for all of us!

I recovered Saturday by having a nice nap in the morning then doing my list for the day. The shower needed cleaning and William's bed needed clean sheets. Both done! I have been coughing again, which I noticed at night as well as a lot of wheezing. As an experiment, I kicked up my oxygen from 2 liters to 2.5 last night. What a difference. I didn't wheeze or cough all night.

Here is where I should mention that Michael had his annual party at Mark's house last night (with whom he used to work) just a mile away. He asked that I make 15 Open-Faced Ham and Cheese Bakes Sandwiches to bring to the party. I had him help me! They turned out really well, we were packing them up when his ride arrived and off he went about 7PM. I sat back on the couch, began to drift off, caught myself so I headed to bed. I don't remember anything until his arrival home around midnight. He had fun. It was so good for him to get out with his buddies.

This morning, we are meeting British Don at his place so Michael can help him with a few moving issues. He finally has a moving date, just a few days after Christmas and he just wants to get it done. We will probably have a bit of lunch, as well.

Today, will be a nice Sunday with lots of anticipation of a busy week ahead including Christmas shopping!

Friday, December 8, 2017

Gigging

I can't go into details but after the PFAC meeting at my university hospital last night, we were once again feeling energized and the feeling that our time was not wasted. Every moment was interesting and challenging. There are now two new people joining us, one I really liked while the other will take some time to know better.

Michael took the head doctor aside and asked if they were looking for our seats to be filled with new blood and he replied, "Gawd, no!" He also mentioned that he needed our experience to help as new people are interviewed and approved to join us. We are the experienced to lead the way through honest, sometimes tough discussions. "No term limits here," he said.

Earlier in the afternoon, Michael was invited to a Christmas party of a group of men. Mostly extremely wealthy men. For the last few years, Jim has collected his favorite customers and friends together for a huge lunch at the little restaurant right on the ocean in the town just north of us. Alcohol flowed freely! The food this year included Garlic Pesto Dungeness Crab, Deep Fried Calamari and Cod, Garlic Bread before lunch was served. Michael warned the gentlemen around him that those were just the appetizers. They had their fill then a beautiful plates of salad appeared. After the salad, platters arrived filled with Lamb Chops, Teriyaki Beef, Jumbo Garlic Shrimp, Creamy Pesto Rigatoni Pasta, Butterflied Deep Fried Shrimp. As we had the meeting, he was the first to leave and was enjoying breath mints our entire PFAC meeting to cover up all the garlic breath! He said it was so good and he was not hungry for dinner!

Today, I will be with mom before the Irish Fiddling gig at the organic market in town. People arrive through the doors near us, hear the music, pause, notice the free wine tasting and suddenly, they slow down, smile, relax, take a sip, tap their toes and work their way through the store. Not too bad for a Friday evening stop at the grocery store on their way home.

Happy Friday.

Thursday, December 7, 2017

PFAC Meeting in the City

Michael discovered the joys of a pedicure yesterday. There was moaning when they put the hot cloths on his feet after massaging his feet and legs and when he was finished, he said he didn't recognize his own feet! I hope his follows up on these every two months. We will see.

After my dentist appointment, I ate a quick lunch then made Shrimp Stuffed Deviled Eggs for our next few breakfasts and dinner of Ground Beef and Pepper Stuffed Quesadillas. After cleaning the kitchen and enjoying our sugar-free Popsicles, I passed out on the couch then stumbled to bed a couple of hours later. It was a good night. I feel so much better today.

Later this afternoon, we have our PFAC meeting at my university hospital and we will be wearing our fancy, hard fought volunteer security badges. The conversation in this meeting will focus on our experiences with referrals. The good and the bad.

This time of year is always interesting when managing all of my drugs. I have several available for reordering but not a lot of money left in Stage 2 before I fall into the donut hole of Stage 3, which would mean I have to pay the full price.  I have enough of everything to get through the end of the year but it will be close with a couple of drugs. This morning, I am going to count pills and days left to the new year and decide which drugs to order, place the order and see if I can keep below the dreaded donut hole. On January 1, a full order will be placed.

Wednesday, December 6, 2017

FINALLY

The cell phone was out on the counter and I had been taking it room to room with me as I picked up the kitchen, living room and family room yesterday morning when I needed to make a quick run to the bathroom. Televisions were on in several rooms and I was only gone just minutes when I glanced at the cell phone upon my return to the family room. THE SURGEON HAD PHONED! Oh no! A week of hauling the phone around on my body so I would not miss his call and I MISSED HIS CALL! I will admit to saying a few bad words out loud. He left a message to phone him back. I did. Three times. It was so upsetting. It had been over a week of worry of possible stomach cancer, which would preclude me from the process of lung transplants. It has been a very long week, emotionally.

Jeannie and I went to the rehab class but she could tell I was upset and very frustrated. I just wanted to know the results of the biopsy and the next steps regarding the fix to my Nissan fundoplication. Thankfully, I had a good workout and felt better on our way home. I did have to tell Michael that I had missed the call and we were going to have to drive to the city today to meet with the surgeon.

That's what we were planning last evening after dinner. I was just about to get ready for the Irish Fiddling rehearsal in preparation of a gig on Friday night when my cell phone rang. It was the surgeon's number.

He told me that the stomach biopsy was fine. Normal. No pre-cancerous anything anywhere. The problem was the Nissen wrap for the acid reflux I had in 2009 was loose and needed to be re-done but the fatality rate was very high when it had to re-done. I asked if he had experience re-doing the procedure, which I learned was the difference between success and death of the redo surgery, and he said that he had no experience. Yikes. I mentioned that Dr. K. said that the drugs would not be enough to keep the acid reflux down. I also mentioned that the lung transplant process could not go forward with acid reflux and micro-aspirations flowing into my lungs.

There was a long pause. He reviewed all of my tests once again. Another pause.

It was then that I mentioned that I was going to meet with Dr. K. a week from today and I could ask her to review the tests. He said that was probably the next step and asked that Dr. K. contact him after our appointment. They will talk then bring me into the conversation. The decision on the way to move forward would be made by the three of us. Surgery? Medication? Watch and wait?

The drama continues.

Tuesday, December 5, 2017

It Continues

The drama continues. The cell phone rang right as the eye doctor walked into the room to give mom her shot in her eye late yesterday morning. Great. I headed out into the hallway. It was not the surgeon's assistant but another woman, Franny. Clueless. Veronica was going to be out for a few days so I filled her in then suggested that since we were going to be on the campus for a board meeting on Thursday,  could we meet with him in a hallway, staircase, office or coffee shop! Anywhere as I just wanted to know if I had stomach cancer or not!

Franny told me that he had an all day surgery on Thursday but too bad we weren't going to be around on Wednesday. Wednesday? My brain raced. I told her I could be there after my noon dentist appointment. I was worried about having enough time to meet with the dentist then the long drive into the city. She told me that I could arrive anytime but just check in to the front desk.

So, we agreed that if the surgeon did not phone me by 3PM today, I would make the drive up to see him tomorrow.

Why won't he phone me?

I just don't get it and I don't want to make a big deal about it as my life is in his hands. With the loosened Nissen, he will doing more surgery on me. It will certainly be an interesting conversation.

Monday, December 4, 2017

Continue to Wait

The cell phone will be on my body all day waiting for the call from the surgeon. Before I leave for mom's this morning, I will leave a message for his long-suffering assistant that I did not hear anything Friday afternoon or evening. Maybe, just maybe I will hear something today!

We did all of our Christmas decorating yesterday and were exhausted! We didn't do half of what we normally would decorate but it looks pretty good. I need to add the dozen poinsettias before photos are taken. Michael hung his new fancy outdoor lights after hauling all the boxes of decoration down from the attic. He slept like a baby last night.

At one point in the late afternoon, I looked out the front window and saw each and every neighbor hanging lights or decorating their houses. Later, Michael and I talked about what I would be making for the annual goodie exchange on Christmas Eve with everyone on the street. I love our little neighborhood.

Mom is having her macular degeneration shot this morning then we will get a quick lunch somewhere. This week has some interesting things. I am seeing the dermatologist next week for my annual appointment to burn off any pre-cancerous spots, caused by medication, from my body. Since many are on my legs, I wanted to get my toe nails painted for the holidays before I see the doctor. The wounds take about 6-8 weeks to heal. The appointment for my toe nails is this Wednesday morning before my dentist appointment. The fun news is that Michael is actually going with me and having his second ever pedicure. Much needed!!! I am hoping this becomes a routine.

Sunday, December 3, 2017

Lights!

Fearful of sounding like a broken record, I did phone the surgeon's assistant on Friday and she was dismayed that I had not heard from the surgeon. I commented that sleeping was becoming difficult and I know she was doing her best. She sent yet another email to him, as he was just finishing up some surgery. She said he should phone me but, if not, call her on Monday.

I waited through the late afternoon into the evening. No phone call. I just can't believe it. So tomorrow, I will phone sweet Veronica once again.

Yesterday, I put all that aside and spent a marvelous couple of hours with a dear friend. We enjoyed conversation and breakfast. It is moments like this that really fills my soul, makes me smile the rest of the day and gives me the confidence to continue to fight the good fight against this disease.

Christmas arrives today. We are beginning with the inside of the house and Michael kind of went crazy and bought a lot of new fancy lights for the exterior. I promise photos.

Friday, December 1, 2017

No Word

Frustrating. No phone call from either the surgeon or the assistant yesterday. How very cruel making me wait to hear the biopsy report. Cancer? Not cancer? Come on, people!

I will phone again this morning.

Yesterday, we were just settling in to wait for the rehab class when it was announced that there was an emergency on the pool deck. Pool deck? We all looked at the closed doors to the pool just inches away. People came running. I chatted with a woman who was watching for the ambulance and we learned it was a male who was now awake and out of the water. Cardiologist came and went, nurses measured blood sugars, things were calming down.

Firemen! Lots of firemen arrived. This hospital has no emergency department so the ambulance staff arrived to move him to their sister hospital (my other rehab hospital). As they rolled him by us, I gasped. I knew him! OMG!

Back story: My mom is always kind and will greet everyone at her apartment complex for independent living people 55 years old or over. Men or women, she is the same. One man sniffed around her before she mentioned that she still considered herself married, though my father has been gone just over twenty years. He backed away. She has no interest in developing any deep, personal relationships with men.

About two years ago, she stopped to greet then asked this man how he was doing. He reached out and grabbed her breasts. She was shocked and fled. After she told me what happened days later, I said she should have slapped him then called the police. She finally told the staff in the office, they contacted his wife and mom learned that this was something he did. There were many complaints.

While waiting for my rehab class shortly after this event, I was shocked when this same man walked past me, turned around and stared at me before taking off. I never saw him there again but was ready to say, "If you every touch my mom again, we will press charges against you."

Guess who was on the stretcher yesterday? Yup. Him.

Thursday, November 30, 2017

Getting Closer

The surgeon's assistant phoned yesterday while I was having coffee with my dear friend, Sue. Apparently, the 12/23 date means nothing. No procedure is scheduled for me. Thank goodness! I don't have to worry about missing our Palm Springs trip! She said that she printed out my pathology report for the doctor, would show it to him at the end of the day and that he or she would phone me. Nothing yet. I do expect to hear from one of them today.

Sue. We met when our children were in kindergarten together. She is a teacher who retired in June and is loving every minute doing all the projects in her house that she has been putting off for years! We enjoyed a 3.5 hour coffee break together with plans to do it again in January. We are always amazed how we just pick up where we left off. We run ideas past each other. We tell funny stories about our teaching experiences. We share updates about our children. A dear friend.

Back to rehab this morning!

Christmas is arriving to our house on the weekend, inside and out. We are doing a less decorative indoor this year, just one Christmas tree, but it will still be very festive. Few presents under the tree, as well. We all decided not to share this year, except for mom. We will still buy ourselves gifts from mom and gave our special presents for her. We think we have decided where we are spending Christmas early dinner, a Prime Rib place here on the peninsula close to mom's home. The plans are coming together!

Wednesday, November 29, 2017

Sad Goodbye

Step one happened yesterday afternoon. I phoned the surgeon's assistant, left a message and received a return call from a colleague. She said that she would be speaking with the assistant today and would pass along my message. I told her that I noticed that I am scheduled for some kind of procedure on December 23, as I received a message to view a video about anesthesia again. I just wanted to know what was the procedure and what was the findings of the stomach biopsy?

She was amazed that I knew so much and told me that I would hear from the assistant today or Thursday. We will see.

December 23. A bit close to December 26 when we are scheduled to leave for our four days in Palm Springs, an eight-hour car trip from our house. Will I even be out of the hospital? Can the procedure be done endoscopically as the surgeon once suggested? That would be fantastic as I would be home that evening.

If I am not feeling well enough to take the chance for a road trip, I will send Michael and William without me.

Other news: I was saddened to be told by the RN at rehab class that my friend Richard had died. What a man. I wish I could write all the stories he shared with me. Having personally known so many famous people at the school where I got sick, no one was more interesting and intriguing that this gentle, 77-year old Texan.

He was very connected in Washington, worked for the State Department at one point, was a professor at several universities and began life on a ranch in an area of Texas that was founded by his German ancestors. He arrived to grade school knowing no English. He shared that, as a younger man, he flew his plane through the Gateway Arch in St. Louis and since it was daytime, people reported his plane numbers and his license was pulled. It took many years and a lot of hoops to get it back. He still was flying his 23-seat plane, the last trip was cross country over a year ago.

Sherman and I learned to be quiet when he would begin to speak. As he would pause, we would put our fingers on our mouths so we could not speak. If we waited long enough, Richard would continue and he would become even more interesting. I learned that just this year, he gave testimony and answered seven hours of questions to a closed door, very important committee in DC. Realizing he was far more that a simple professor, I began a search on the Internet. Nothing. It was if he never existed. I will never find out. For me, he was the most interesting person I have ever had the pleasure to meet. I will deeply miss him.

Tuesday, November 28, 2017

Waiting By the Phone

Still waiting. Maybe today I will hear from the surgeon with the biopsy results. Mom and my friend Lois reminded me that it might take a week for the results so I will contact his office tomorrow, if I hear nothing today. The waiting is the hardest part of the whole process.

My mom was given her first computer when she was 80-years old and it has fun to watch her grow to the point where she panics if she is offline for a day. She loves her computer but sometimes she hits buttons she shouldn't. That happened over the weekend and she, somehow, stopped her email account. After a call to Comcast, we headed to the store for help. Slimy guy biting his fingernails then tapped her computer keys and had an insolent attitude towards us did not gives us any confidence. Very nasty guy.

He didn't fix it.

This morning, mom is heading to her friend in a private computer store who has helped her out but refuses to accept any money from her. He loves that an 89-year old woman knows how to use a computer. A really good guy.

Today, Jeannie and I head back to the rehab class after the holiday, which is really not a lot of fun but more like a chore. I so miss the teasing and fun with my two rehab boys. Before class, I am going by two banks and city hall then catch a tiny lunch at the organic market.

Monday, November 27, 2017

Facing the Week

Back to the action. Monday. I am expecting to hear from the surgeon today with the results of the biopsy and next steps to fix the Nissan site. Hopefully. If I don't hear from him today, I will phone his assistant tomorrow to see if the he plans to phone or shall I make an appointment. (He told me that he would phone me.)

The bank statement came in and it needs to be balanced, the bills need to be paid, I need to phone Morgan Stanley, Michael is out of breakfast food so I need a quick stop at the market on the way home from spending the day with my mom. We have nothing on her calendar so it will be fun to see what she wants to do after I arrive at her home this morning.

It is amazing, since the biopsy, I have stopped coughing and I am feeling so much better. The fatigue is still present and I drop off to sleep at the drop of a hat, but I am not as short of breath when walking quickly and I even climbed four flights of stairs at British Don's yesterday.

In preparation of his move, he and Michael moved a lot of stuff to the trash in the garage of his loft (no elevator), while I chatted with his huge cat! He never took his eyes off of me, was very suspicious that I was his new babysitter and seemed convince his owner was never coming back. He sat by the door and complained loudly.

We had a marvelous lunch at the French restaurant and we all ate too much! Just when I was feeling thin again! This morning, I am feeling better as we did not have any dinner last night. I will eat lightly for the next two days and I am returning to the rehab class tomorrow, which will help.

Sunday, November 26, 2017

Time Out

This has been such a lovely, relaxing, long holiday weekend that I feel totally recovered and energized for a good week ahead. The final bit of fun will be today. It is beginning with the final Formula 1 race of the season live from Dubai right now then later, we will be with British Don so Michael can help him pack up a few more of the larger items for his move to Oklahoma. Somehow lunch will be involved and we will be thoroughly entertained by him, as usual.

It is pre-dawn right now but a nice storm is due in an hour or so and will continue throughout the day. Yesterday, Michael cut the grass then we suddenly had the garage filled with the neighbors, we served cocktails and enjoyed an impromptu get together. We are blessed to have lovely neighbors.

Leslie and her family arrived home last night from a week vacation in Spain.

Susan and Ron arrived home last evening from almost a week in Palm Springs.

Kevin, Kelley and their two girls arrived home from a week in No. Carolina.

The new family on the other side of our challenging neighbors have moved into the house.

The neighborhood feels alive with kids! Thank goodness!

Towards the end of each year, I have always admired Michael for actually reviewing the year and setting goals for the new year. Yesterday, we were talking about a simple re-do of our kitchen, it is time, and maybe give our bathroom a face lift. We want to remove a lot of landscaping in the front yard to make it easier to maintain and the house needs to be painted. Lots of plans.

Friday, November 24, 2017

Thanksgiving Photos

It was a success. Our new tradition of staying local, celebrating in a restaurant with a lunch of traditional foods and being home before most people begin their holiday meal was a success. It worked well.

Mom, Michael and I had no traffic problems as we drove to the harbor north of us. The luncheon began with cocktails and fresh calamari, which my 89-year old mom had never tried before. She liked it! Check that off her bucket list! A plate of traditional holiday food was perfectly cooked and properly portioned. We even brought home some leftovers for today.

Our change of tradition has been a challenge but I think we agreed that it was so much better for us. We didn't spend 5+ hours in a car in holiday traffic only to come home exhausted. We were home by 3:00 and in bed at our regular time.

We are going food shopping this afternoon and I am going to try to get a pedicure appointment for both of us. I have been working on Michael to begin to have someone take care of his feet. When he mentioned he was ready yesterday, I want to jump on it quickly before he changes his mind. I may even take before and after photos!

Thursday, November 23, 2017

Happy Thanksgiving

Happy Thanksgiving! My best wishes for a wonderful day to enjoy with family.

Our day is the beginning of a new holiday tradition. We are just the three of us today: mom, Michael and me. We decided that the two-hour drive in holiday traffic to my sister's house and driving home in horrible traffic at midnight was enough. We have lunch reservations at a lovely restaurant here on the coast, which has a special Thanksgiving plate. No buffet. No all-you-can-eat. Just a nice plate of the traditional foods of the day.

Perfect.

We are planning to walk the pier after lunch and maybe even buy a few fresh crabs for dinner or maybe even lunch tomorrow. It is going to be warm and beautiful here on the coast. We may even spot a whale or two!

The exciting news is that my niece and her husband got the keys to their first house yesterday. They are now homeowners. We will give them some time to get settled before we drive mom up to see it. She is also excited about the new traditions and they are beginning some of their own now that the "tradition" bonds have been broken. Changed. Updated.

Enjoy your family traditions but realize that it is okay to adjust them if our health requires a tweaking. Adjust and keep moving forward.

Wednesday, November 22, 2017

The Endoscopy

It didn't begin well. We arrived for the procedure at 9:30 for a 10:00 check-in then waited until 11:45 to be called upstairs for it to begin. It was a long wait. I slept a bit but was worried about being in a room of a lot of sick people waiting for surgery along with their families.

Upstairs, we ran into a well-oiled machine. These people knew what they were doing. One woman brought me to a bed in a corner, told me to undress and put everything into the bag. When ready, a young anesthesiologist peeked in and began to ask a lot of questions about my health and what medications I had taken in the morning. Then, the anesthesiologist arrived dancing. I fell in love. She was so amazing and we found out that she had 38 years of experience. Perfect! Just what I wanted.

Initially, I thought we might have a problem. She wanted to give me general anesthesia, which would put me into ICU for a couple of days. I told her about my experiences with the liver biopsy and my nose implant where I asked to have mild sedation and it worked just fine. I was tough.

She was worried about aspirations flowing into my lungs during the procedure, causing a specific kind of deadly pneumonia. We talked back and forth before she said, "I choose to phone a friend." Just like the TV show. And she did. She actually phoned the anesthesiologist who deals with the lung patients. They chatted and he supported light sedation along with several other things like a certain spray on my throat and a horrible drink of something to knockdown all the acid in my stomach.

I told her that I absolutely trusted her and whatever she decided was the safest choice was fine with me. She decided to go with the light sedation. Thank goodness.

The surgeon arrived. He confirmed to her that the entire procedure should take 15-20 minutes, which also seemed to confirm her decision not to give me general anesthesia. When the surgeon was leaving, he pointed to her behind her back and mouthed, "The best!" to me.

She talked to me throughout the procedure. I was floating and drifting and sleeping but remember gagging while the instruments went down my throat, but was not concerned as I had a lot of lovely drugs on board. She kept checking in with me. In the end, she asked how I was and I replied, "Fine." She said, "You are an amazing patient."

Thank you very much.

I was wheeled to recovery, met a nice nurse who was amazing that I was awake and doing so well so quickly. I had no pain. I had no problems, even standing up to get dressed. We were out of there by 2:00. So unexpected.

Now the bad news. The doctor spoke with Michael while I was in recovery and told him that he was shocked that the Nissen was too loose, the exact opposite of what he had expected. He also told Michael that they found something "odd" in my stomach and took a biopsy. I should know what it was in a few days. I so pray it is not stomach cancer.

I think the results of the biopsy will determine the next steps regarding the Nissen. Again, everything is on hold.

Monday, November 20, 2017

Mentally Ready

The weekend was restful. I feel ready for tomorrow's endoscopy. Today, mom wants to hit Costco to buy a Jitterbug phone but we may have to make another stop afterwards.

On Friday, she told me that she had been up eight times to use the bathroom the night before. Eight times. A record. I think she had a UTI or bladder infection. She has a good immediate care place near her, feels comfortable going there and likes the doctors. I suggested that she have it checked out on Saturday. If she didn't, I will take her today.

I probably won't write a blog tomorrow morning as we will be heading into the city early and I really want to focus on all the things I need to bring with me, the medications I need to take, the shower with Dial Antibiotic soap on my belly, to wear the appropriate loose fitting clothing and so much more. Focus.

Wednesday, I am expecting to stay home all day so I will write all about the experience. Hopefully, the doctor will decide the next steps after the test.

Saturday, November 18, 2017

Now Michael?

My goal this weekend is to rest, take a few walks, water the garden and take lots of naps in preparation for Tuesday's endoscopy. But, who I am more concerned about, is Michael. The past couple of months, I noticed that he was short of breath after exertion, ran out of air at the end of a sentence along with a light, non-productive cough. I have slipped my saturation meter on his finger and his numbers have been fine. This all leads me to the possibility that he might have some blockages in his heart.

As a typical man, he had lots of excuses, even this morning when I told him I would be making an appointment with our primary doctor to look into the symptoms. "It is not bad. It only happens sometimes. I was tired."

I am now done with the excuses. An appointment will be made.

Friday, November 17, 2017

Endo prep

As scheduled, the anesthesiologist and I connected regarding next week's endoscopy. What a well-oiled machine! It did not take very long, we reviewed my medications and over the counter drugs, I told her about my problem with general anesthesia, allergy to latex, my low blood pressure, severe lung disease, blood transfusion when William was born and my supplemental oxygen needs.

She then emailed a five page document of our discussion, which also included helpful hints like no jewelry or makeup the day of the endoscopy. Also, it listed the drugs and vitamins I needed to stop immediately and the ones I cannot take the morning of the procedure. Immediately? No vitamin E, Omega 3 fish oils, melatonin and Ostro Bi-flex. The morning of the surgery? No Miralax (for my UTIs) or spironolactone. I was also instructed to bring my inhaler.

At the end of the conversation, I asked if the assigned anesthesiologist would be prepared and experienced to deal with all the issues of my advanced lung disease. She told me that I would be meeting the anesthesiologist that morning and could ask any questions directly to him/her at that time. It was then that I told her that I was not as nervous about this procedure but more concerned about an upcoming surgery to fix the problem that would be revealed during Tuesday's test.

"My family and I are very sensitive about anesthesiology issues because 20-years ago yesterday, my dad died after elective same day surgery. The problem was with the anesthesia. My mom is very concerned and she doesn't want to lose me, too" She paused then responded, "I understand."

What I hope that meant was that I will be assigned a more seasoned anesthesiologist and maybe a notation on my file for the next, more difficult surgery. Fingers crossed.

Thursday, November 16, 2017

Waiting By the Phone

After my hair appointment this morning, I will be home waiting by the phone for my interview with an anesthesiologist. This is preparation for the endoscopy next Tuesday to take at look at the valve inside my Nissen Fundoplication surgery site and possibly the hernia. The valve seems to not be working properly, which is allowing acid reflux to flow into my lungs.

I want to confirm with them that I will be given light sedation for this procedure but I want it in my file that I, like my mom, become very ill after general anesthesia. We also need to review my medications, what I can take that morning, what I need to stop taking immediately, list of previous surgeries and a couple of other questions.

There is a two-hour window for this phone call so I will be just hanging here at home. That is not a bad thing as a big storm blew through last night and it is expected to rain on and off all day. A good day to stay home.

Michael has a Boys-Night-Out tonight. They are meeting at the same restaurant where we have a reservation for Thanksgiving luncheon. I am so grateful that he has a large group of male friends, several whom had dealt with illnesses and one a death of a spouse. He can talk about living with someone dealing with a chronic fatal illness and the reality of being a caretaker. They understand. They are his support group.

When William was in kindergarten, I met a woman who was a transplant from Boston with a son in his class. JR and William became friends as did their parents. Sue continued her teaching career and just retired last June. I sent her an email last month wondering how she was doing not getting up early every morning and heading into the classroom. I received her reply this morning. She wonders how she ever found the time for work! Her son, wife and grandson are living with them as they save to buy a house so they are keeping her hopping. We are making plans to meet for coffee and a good chat. Our lives have been so busy that I hope we will now have the time for a proper friendship with lots of conversations and coffee and walks along the ocean. Old friends are the best.

Wednesday, November 15, 2017

Two New Gentlemen in Class

I was shocked at Jeannie's appearance when I picked her up for our rehab class yesterday. Expecting a weak, pale person, she moved the fastest I had ever seen her make her way to my car. The last two weeks of rest really helped her lungs to recover and she looked fantastic. Her color was good, she was smiling and so thrilled to be back out into the world. We had a fun time together.

While I was absent from the class last week, two new people joined the group. Gauging the staff's reaction to the younger gentleman, it was clear that my read on him was right on. He was a loud, obnoxious pain. We will see if I can settle him down. I'll work on him.

The other gentleman was an elegant looking older man. I began a conversation with him while lifting free weights and discovered we were both coastsiders. Until recently, he was a competitive tennis pro and I detected a bit of a British accent. He grew up just north of our British Don.

He wanted to talk with me about vanity. In his classes, he was appalled that a woman would not food shop as she would need oxygen and she refused to be seen in public with her cannula and tank. Another person also refused to use the oxygen as he was embarrassed. The gentleman asked what I thought.

I replied that in my personal experience, I initially was very nervous using oxygen in public until I discovered that people were actually very kind when they noticed it. Still surprises me. I really only had that one bad experience I have mentioned before, the horrible woman in the hospital elevator after working out at the other rehab. She looked me up and down and said, "You shouldn't have smoked!" I smiled back and replied, while leaving the elevator, "Funny, but I never smoked."

And, here is the time when I must mention that one of the major reasons to use supplemental oxygen is to protect your heart. When the heart does not get enough oxygen over time, a part of it hardens and will not function correctly. Sadly, this is very common in patients with longtime lung diseases.

Tuesday, November 14, 2017

Rehab Class

Jeannie phoned to ask if I could drive her to the rehab class today. She convinced the hospice nurse that she would feel so much better getting out into the world and moving her body. The nurse finally gave her approval to try it one day this week. I was thrilled that Jeannie had so much determination and guts. My kind of girl!

About an hour after we spoke, the phone rang again. It was her sister sounding very concerned. She wanted to give me her contact information but I could hear a nervousness in her voice about Jeannie returning to rehab. I told her that the exercise physiologist and the RN will be watching her closely to insure she did not push herself too hard on her first day back in a couple of weeks. That seemed to help.

My cough is better and I am feeling better, in general. The endoscopy is schedule for a week from today. I received a secured email from the surgeon's office, which included all the information I will need, for example, medications, food, vitamins, what to wear, what not to wear, etc. The only problem was that I could not open it. So, later this morning, I will be phoning their help line for help! Frustrating.

Monday, November 13, 2017

Video

My university hospital has an interesting process when a patient is facing a new procedure. They sent me a video accessed through their patient email site. Yesterday afternoon, I watched a 20-minute video about anesthesia. All the different anesthesia options. It may have fallen into the category of too much information. In other words, it scared me to death. Death? Yes, that was mentioned a couple of times during the video!

All this was in anticipation of the endoscopy next week and it left me with more questions than answers. I will be phoning the surgeons assistant asking if I was going to be given light sedation during the procedure, asking if I can take only the most important drugs that morning, where exactly do I check-in and probably a few other things while I have her on the phone.

The video was intended to give information so the patient feels educated before a new procedure but it left me feeling anxious.

Michael took me to lunch yesterday and we split an award winning (and featured on Drive-In, Diners and Dives) pastrami sandwiches on toasted rye with sauerkraut and dressing. OMG. I have never tasted such tender, lean pastrami. We split it but I swear I am still tasting it this morning. Burped all evening! Dinner was a scrambled egg. I will be eating very lightly today.

Mom has wanted to see the sweet park in her city that has a hidden Japanese garden, with koi, and beautiful paths to follow along the large pond. Today will be the day, if it is not raining. We don't have anything special on the calendar.

Also today, I will be checking-in with Jeannie to see how she is doing and if she needs my help to food shop.

Finally, yesterday morning when I unplugged Michael's phone, I noticed a missed call from a +00 number, usually an out of the country number. I looked it up and realized it was William's number but from Argentina. I panicked. He never phones when he is out of the country. Was he okay? We messaged him. Hearts pounding. Reply? Pocket dialing. Oops. He did write that the concert went really well, he had fun wandering around the city and had eaten an amazing steak. Deep sigh of relief. They are flying home today.

Sunday, November 12, 2017

Slept Through

I slept throughout the day yesterday, right up to 30-minutes before walking over to the neighbors at 4:00. They were hosting a family and friends pre-Thanksgiving dinner for thirty people. We stayed for appetizers and lots of conversations. Most of the relatives this year were from Mike's side of the family, who we had never met before. Lisa's mom was there, which is always a treat. Their daughter had just returned from a vacation in Cuba and their son was visiting from Colorado. It was great to spend time with both of them.

We walked home, ate a light dinner and I promptly fell asleep on the couch.

Last night, I woke up around 2AM and was wheezing and coughing. Not wanting to awaken Michael, I grabbed my pillow and a blanket and headed to the living room. After using my inhaler, both the wheeze and cough calmed down so I was able to drift back to sleep.

My goal today? Only one: water the pots. Michael is going to cut the grass for me so I will water this afternoon. This morning? I have a feeling there will be another nap. It was such a busy week, I really need to recover.

Friday, November 10, 2017

Birthday Recap

One more birthday done. It was a nice, quiet, easy one. Michael bought a very hip pair of black ankle boots with two, count them, two buckles wrapped around them for my birthday present. I feel empowered! I feel taller! I feel like I will wear them tonight at the Irish Fiddling gig at the brewery. Black jeans, black boots and a rockin' bass. Yup, perfect after a birthday.

We had lunch at a Chinese restaurant we used to go to years ago. Not so great anymore. Sadly. He also bought a piece of cake so I could plant a candle on it and make a wish. He covered all the birthday bases.

As a treat, our friend Randy dropped by. We met him when we moved to our coastal town, he was 16-years old and he is now 60! Long time friends. His dad owned the mortuary in town and his parents didn't like us at all as Michael was "blue collar." Old school people. He currently lives across the bay with his wife and three children, just over an hour away.

Randy was a local cop then got a job with the county sheriff's department, which was where he retired from about five years ago. As part of his retirement two days a month, he runs a driving course here on the coast for police officers and sometimes private citizens. When Michael was in Oklahoma City in September, they visited the shops from the TV show "Street Outlaws" and bought a t-shirt for Randy. He came by to say hello but to also pick up the t-shirt. A twofer.

It was such fun to get caught up, chat and to remember old times together. He stayed three hours, sang Happy Birthday over the birthday cake with us and lazed out on the new reclining love seat. A perfect ending to a nice, quiet birthday.

Mom and I will be together all day today with no plans. We can have some fun! Maybe I can get a nap in before the gig tonight. Or, maybe not.

Thursday, November 9, 2017

Another One

Well, it has happened again. It's my birthday today. It's still such a surprise and a gift that I have lived another year after being told way back in 2005 that my time on this planet was going to be very limited. A couple of years. HA! Guess sometimes even doctors make mistakes.

Sometime today, William will phone. It will be good to hear his voice as he begins the journey to Argentina for a concert. He loves South America and can't wait to enjoy the food while there.

To celebrate the day, Michel and I are going shopping for some ankle boots for the rains then we are going to lunch. That's it. Well, maybe we will find a piece of cake somewhere so I can blow out some candles and make a birthday wish.

Simple day together. That is my idea of a nice birthday.

Wednesday, November 8, 2017

Out into the World

Yesterday, at four-thirty in the morning, the alarm rang. We were filled with coffee, then quickly dressed and out the door by 6:00AM. We were off on an adventure!

Michael and I promised mom that we would drive about two hours away to place fresh silk flowers on my dad's crypt for the holidays. We make this trek twice a year. It was a stress free trip with little traffic as the rush hours mess was in the opposite direction. We flew.

The cemetery has always been beautifully tended and was exceptionally pristine yesterday. Though it was icy cold, we still enjoyed our visit with dad and mom arranged the new flowers. She always talks to him and kisses her fingers then places them on his plaque. She still misses him so much even though November 13th is the 20th anniversary of his unexpected death. He would be so proud of her and how she continued to grow and even thrive after his death. She deeply misses him and still dreams of him every night.

After the visit, we headed into the Sierra Foothills, through tiny towns, even the very famous gold town of Sutter's Mill, on our way to an Indian casino. After an hour, we arrived and mom was in heaven. She could have gambled all day! By 3:00, we were done. She could have stayed a few more hours but we faced another three hour car ride home.

Mom was the big winner, Michael second and I was the total loser! Oh well, can't be lucky in everything! We all still enjoyed the day together.

At 7:15, Michael was dozing so I suggested we head to bed. We both were asleep in minutes and slept until 6:00 this morning. A quiet day of just grocery shopping ahead.

My cough is getting slightly worse and I have been using my inhaler more and more. We only had to move once when someone sat at a machine next to me and lit a cigarette. The air quality in the casinos has been greatly improved from the old days. I made sure to keep my hands away from my face and washed them often throughout the day. Today and tomorrow will be recovery days and hopefully, I will be ready for an Irish Fiddling gig on Friday night!

Monday, November 6, 2017

Beginning of a Wild Week

It was a restorative weekend. I needed it as it is going to be a whopper of a week ahead. Just taking it day by day. Today? Rather simple. Mom has an eye doctor appointment and we need to get a new 2018 calendar for my purse from the book store. That is it. Well, maybe a bit of food shopping but that is really it. I think. Oh, I forgot to water the pots so I will do that after I get home but that is it. And, I need to phone Jeannie.

A simple day.

Tomorrow is going to be really exhausting.

I have been making an interesting breakfast for Michael, Avocado Toast. I brush a bit of olive oil on a slice of French bread and bake it until it is crispy. Then, after a rubbing of fresh garlic, I spread half of a mashed avocado on the toast and add of bit of pepper. He loves it. Something different. He will also have a bit of yogurt on the side. It keeps his blood sugar level until lunchtime, which is always the goal.

Happy Monday. Hold your hats. Here we go.

Sunday, November 5, 2017

Hospice

After speaking with my rehab class car pool buddy Jeannie on Friday, I learned that so much had happened since we last spoke. She now was officially in hospice. Apparently, for the last two years, the people at the Sutter hospital where we have our rehab class had been keeping in touch with her since she was hospitalized about two years ago. When they phoned last week, Jeannie talked about how the fires and heat really hurt her lungs and all the other issues.

The hospice nurse arrived the next day. She was one wonderful woman who, through an interview and her observations, began to make big changes. Immediately, she had Jeannie take a leave from the rehab class so her body could heal. I had been so worried that she was going to do even more damage as she was really struggling through the workouts. Smart move.

At the recent pulmonologist appointment, he refused to give her anti-anxiety drugs that she so desperately needed. "Go see your primary doctor." The only problem, Doc, was that would take another long Ready Wheels trip and several weeks to get an appointment. Immediately, the hospice nurse was able to get her the drug, watched her take it then realized it was a bit too strong. She adjusted the dosage and Jeannie told me the drug had made a tremendous difference. She was able to function.

Remember when her oxygen supplier told her she used all of her oxygen tanks for the month during the fires and heat? No more for you. Sorry. Deal with it. Well, the hospice nurse fired that company and arranged for a larger shipment of oxygen tanks to be delivered immediately.

Jeannie had no experience dealing with hospice and was shocked when I knew so much and was telling her that she was not going to have to see doctors. Hospice would be the go-between and would provide all the drugs and care directly. She asked how I knew everything. I told her the story of mom's sister Rita, who I was responsible for from 1998-2007, when she died under hospice care. They had been amazing not only with Rita but with my mom and me.

The hospice nurse also arranged for her tiny studio apartment be cleaned twice a week and that woman was trained to take Jeannie for a walk, which she so desperately wanted. She has always been careful with her food choices all of her life and only ate as a way to improve her health. The food at the facility where she lives is pretty awful so she shops and cooks herself. She really wanted to continue to shop, not only to keep excellent food available for herself but for the act of getting out into the world. I have agreed to take her shopping every week. It is something I can do for her.

Friday, November 3, 2017

Comes the Rains

I think Michael woke me up to put me into bed around 6:30 last night. I was done. Yesterday was busy but fine. Mom and I met, did her shopping and dropped her off to meet her friend for lunch while I went to the rehab class. Jeannie did not car pool with me, I phoned her after the class, she asked if she could phone me back but she never did. I hope all is okay. I will try again this afternoon.

Michael and I were both up at 4:45 this morning, which was great. I need a shower before meeting mom to pick up her car. It is ready after breaking down on Tuesday. She is also having her shot in the eye to fight macular degeneration. A full day ahead as I also have an Irish Fiddling gig this evening. Two hours. I should be dragging by the time it is over.

No word from the surgeon's assistant about scheduling the endoscopy. I also have a nice cough, not yet into the bronchitis level but heading that direction. The goal this weekend is to take it easy and recover from a busy week.

And, the rains are to begin today. The first ones of the season. My gardens say thank you!

Thursday, November 2, 2017

Frantic Moments

It was a fantastic day of getting caught up on emails and paperwork and even a nap. Lovely. We decided to drive up to the harbor around 3:00 to see if a restaurant was taking reservations for Thanksgiving yet. They were closed between lunch and dinner service. Back in the car, Jim phoned and we met him at his business south of town.

He and Kathy raised two sons, now both working in the business, and are very successful. They were local kids and now in their mid-60s. We sat in the kitchen and had a great chat and lots of laughs. I kept glancing at my watch. I had an Irish Fiddling rehearsal at 6:15 and we had planned to grab dinner out some place.

Time ticked away.

We were now at the opposite end of town and facing rush hour traffic on the little coastal road. No dinner and running late. Finally home, I threw together a good dinner while the messages were flowing about the rehearsal. They were now planning for all of us to meet at 6:30, hop in a car and drive to the other side of our neighborhood to deliver dinner and a song to our violin player who was recently home from cancer surgery.

I made it on time!

She looked tired but relieved. The doctor had just phoned before our arrival with the good news that all the pathology was cancer free. It had not spread anywhere. Her sister was staying with her and we all enjoyed seeing each other.

By the time we got back to Leslie's house, it wasn't worth unpacking my bass and hauling it over for about 20-minutes of playing. So, I am going into Friday's gig at the organic market without having played for a few weeks. No problem.

Today, I am not driving Jeannie to the rehab class. She needs to rest and recover. So, I am meeting mom and driving her around as her car is still in the shop. After I leave her to have lunch with her friend, I will head to the rehab class.

Another busy day.

Wednesday, November 1, 2017

Evening Filled with Children

What a night! We had about thirty kids swing by for their goodies, which was not as many as usual. I loved the little kids who were just so excited about the whole experience about being out at night with mom and dad and getting candy, too!

Our sweet neighbors with very young Cora and Ella were the first to arrive. Even their mom was dressed up! We had special gift bags for them, including a few little toys. Cora's best friend and 7th grader Lily (who is Leslie daughter, the head of the Irish Fiddling group) came back with another group of friends. I love that Cora was hanging with the older girls under the strict supervision of Lily. What a great neighborhood where her parents were comfortable with that! It made me smile.

My favorite family arrived right on time for dinner. Natalie, Ethan, Winnie and Oliver all were in full costume and excited about the evening ahead. Oliver loved his mini hot dogs wrapped in crescent rolls while the rest of the family had my Italian Casserole and homemade applesauce. There were cookies for dessert. Winnie and Oliver also had gift bags of candy and small toys.

I have to say that I was stunned when I first spotted the kids. Having just seen them during the summer, I swear that each had grown a few inches and Oliver had matured so much since the beginning of school. It was fascinating to watch them both throughout the evening. Natalie and Ethan looked great, he is the final interview phase for a new job so our fingers are crossed for his success.

After they left around 9PM, I was not tired but energized. My soul was filled to the brim with all the conversations and just having kid interaction. I must admit that I fell into bed and slept like a rock, the first time in a few days.

Some sad news: I went to pick up Jeannie for the rehab class yesterday and she never came down to the car from her apartment. She lives in Senior Housing and there was no air conditioning during the fires and the 90+ temperatures. Her lungs crashed and she has not been able to recover. I phoned and she told me that the Hospice nurse was due to help with several issues. Hospice. It was hard for me to hear that but I saw how Hospice works when I was taking care of my aunt. It would help Jeannie so much in so many way that, in a way, I am happy that she is under their care. I will phone her today.

Other news: Mom. Her Mini Cooper would not go into gear and she was stuck in a parking lot. She had someone phone AAA, they couldn't get it going and had it towed. She tried phoning Michael with the tow truck driver's cell phone, he didn't recognize it and didn't answer. She phoned me after she got home, tired and hungry. She refuses to carry her burner cell phone as it is too heavy. We are going to have to talk about that. So, she has no car. I am going to meet her tomorrow morning, drive her to the mall to buy a birthday present for her buddy before they meet at a restaurant in the mall for lunch while I go to the rehab class. It is going to be a rough few days for her while the car is being fixed but it is a preamble to the time in the near future when she no longer can drive.

Tuesday, October 31, 2017

Trick or Treaters

Mom and I checked off all of the stuff on my list and I have more on the list for today! Natalie and family are due around 6:15, I will be cooking dinner for everyone before they head out the door to trick or treat. Last evening, I put together little gift bags of candy and little toys for Winnie and Oliver but also made one for Lily and two for the little girls, Cora and Ella. So much fun.

Today, I am making the dinner this morning, will dust and vacuum the house, clean the front door, buy Halloween cookies in town and go to the rehab class. A busy day ahead. A fun day.

I still have not heard from the surgeon's assistant regarding my endoscopy. The not knowing when is driving me crazy so I must just give in and phone her tomorrow or Thursday. Just a reminder to schedule it. Please.

My biggest worry is that the surgery to fix the problem will happen before Christmas and maybe interfere with our plans to enjoy Palm Springs together just after Christmas. I want to be well enough to still spend time with our son on a vacation together. In a way, I want to push it to happen quickly but on the other hand, I want it to happen after all the holidays. I guess it will happen when it happens.

Monday, October 30, 2017

Halloween Prep

We worked side by side in the gardens and it felt like I had a good workout when it was finished. It also looked great! It had been a long time since I cut the plants along the driveway and the four other ones between Ron and us. Lots of work. Lots of picking up the piles of trimmings to put into the recycling bin. Into the back yard, the old lilies needed to be pulled and everything needed watering.

It felt so good to move my body. I did wrap my knee and only felt one twinge while I was tromping around. When it was finished, I was soaking wet and breathing hard. There was some coughing and I am a bit worried about it. It was not my usual short, non-productive cough but it sounded looser and it was a longer cough. Keeping my eye on it.

It all looks good for Natalie and her family arriving Halloween evening. The house will get a quick dusting and vacuuming tomorrow and I am making a simple dinner for the entire family so they have energy to trick or treat as many houses as possible in our neighborhood.

My list for today is ready. Shower and hit the road. Food shopping. Mom. Costco. Pay bills in person. Every year, I put together small bags of toys and goodies for the neighborhood kids. We have two very little ones in the corner house and I still make one for Lily, who is in 7th grade. Winnie and Oliver will also get a special bag. I am going to put those together this afternoon. Next year, we will have two additional kids on our street. The very first house on the cul-du-sac has just sold to a family with young children. Wonderful. Keeps the neighborhood young!

The weather has finally turned to Fall. It will be a jacket day and a chance to wear my new boots. I love everything about this time of year from the smells in the air to the pumpkins to the planning ahead for the holidays. But, it is also the beginning of cold and flu season. Just a reminder to wash your hands every time you arrive home and keep your hands away from your face. Keep the germs at bay.