Living Well with a Bad Diagnosis - Lung Disease

Sunday, January 31, 2016

Road Trip Anticipation

Dark, cold and rain with high winds are due later in the day. Love these Sundays. I was able to work in the gardens yesterday but I didn't need to cut the grass. Thank you, Michael. I spent almost three hours hand trimming and picking up all the yard waste in just the back yard. There was very little coughing and I actually felt good doing it for the first time in months. As I glanced at the all weeds and work in the front yard, I thought that I should put it on hold for another day. I didn't want to push myself too hard and take a huge step backwards. My simple goal today is to wash and iron the sheets. It takes a lot out of me but I will take it slowly. There is no other feeling in the world like climbing into a bed with clean, ironed sheets. (It all began when I was manic on 40 mugs prednisone for two months.)

Is is me or is there an unusually large number of musicians and celebrities dying since the new year? It is as if they waited to get through the holidays then BOOM! Gone. Each is such a shock.

At least a week before we take a road trip, I start putting things we are taking with us on William bed so I don't forget anything. I began with a google map of the trip and my pajamas yesterday. Next Sunday, we will load it all into our suitcases so they are ready for a fast 4AM escape the next morning. The excitement is building.

Tuesday, the Porsche is going into the dealership for an oil change.Also next week, and as important, I need to get my eyebrows waxed and remove the other hair on my face. Why, when we get older, does hair grow places it has never grown before? We will also meet with Ron next door to hand over all the keys and ask him to deal with our garbage cans, oxygen refills, the alarm for the housekeepers and the collection of the mail. His reward? A pound of delicious Cafe Vita coffee beans from Seattle. Worth all the work!!

The group William is currently touring with has been nominated for a Grammy this year. If one's name is on the album notes, they also get a Grammy. Sooooo, I am dusting off a spot on my mantel. They have been nominated almost two dozen times but this year they have a good chance. Fingers crossed.

I am so looking forward to tomorrow's first visit with the ENT regarding the fluid behind my eardrum. Years ago, I created documents to take with me to a new doctor: medications, list and dates of illnesses and surgeries, family history. Every single doctor has thanked me for those documents. They can scan them quickly and they go into my record quicker than typing it all in. I just make sure all the information is updated.

Saturday, January 30, 2016

Sorry for Yesterday

My only excuse for being MIA yesterday is that I turned on the computer at 6AM and it was locked. There was some program that wanted my password. I thought it was something that British Don had on the computer and I didn't have his password. I messaged him then waited.

May I just say that it was really strange to not be online in the morning. No news. No Facebook. No traffic information. No nothing plus the worry that there might be something really wrong with my computer.

I was with mom by 9AM, we had a Starbucks Chai for her and an Americano for me, ran an errand for her, paid my AT&T bill and as if right on cue, British Don contacted me. We drove to his loft in the city and he fixed the problem within minutes. He is a genius! He also gave the computer a check-up and it passed with flying colors. Mom loved his loft and his cat. He was also so interesting and can string words together as only an intelligent Brit can. I was so very grateful that he took the time and fixed it for me.

The long-range weather forecast looks fantastic for our 800-mile road trip to Seattle to visit William on Monday, February 8. He is already planning all the places he wants to take us, some cool things to see and where to eat. The food. It is fresh and as high end as any major restaurant in San Francisco but at a third of the price. Remarkable. When we were there for Michael's birthday three years ago, we had his special dinner in three different restaurants: Appetizers in one, main course in another, the dessert in a third. It will be fun and thankfully not snowing through the horrible mountain pass.

Thursday, January 28, 2016

Just Plain Fun

We had such a fun day together yesterday. Nothing planned except haircuts. While I was having my cut and color, Michael stayed home to keep an eye on his Barbacoa in the oven. It took him about an hour to get everything into the pot and by the time I left, the aroma was building. Marvelous.

He cut the grass for me. What a gift. It is going to rain tomorrow and would have been too wet to cut on Saturday. How sweet was that?! He also cleaned up his area on the counter, cleaned the patio then washed and waxed his car. When the Barbacoa was fully cooked after four hours, we tried a new tapas restaurant in town for lunch. Super delicious and perfect portions. Timing was great as Michael's hair appointment at the new barber shop was within minutes of us paying the bill.

It was a very manly barber shop. I always feel a bit weird being there. Fortunately, one of the young barbers and I bonded over a discussion of food. We all were laughing. Everyone was joining into the conversation, even the other customers! When Michael was done, I told them all that I was sorry I had to leave now, they all said, "No! Stay longer!" It was so much fun.

The orchestra rehearsal went really well, one more rehearsal next week then the concert on February 6th. Both Gerry and I are at the point where we are not needing to count but know the music well enough to simply play it. It just flowed. Fun.

With our first cup of coffee this morning, Michael raised his for a toast and said, "Thanks for the great day yesterday."

Wednesday, January 27, 2016

The Pink Bunny

The energizer bunny had nothing on me yesterday. My energy level was high! It began in the early morning when I decided to order my vitamins then some medications. That took time but the two boxes of inventory, my big bag of drugs, a large bag of Michael's low blood sugar snack and a very large sack of "stuff" got my attention. I had been meaning to clean them all out and get the area organized so it happened before 7AM! It felt fantastic!

From there, I went into my guest room and began to organize the year-end paperwork. Bills! Yes, they needed attention, too, so I wrote them out and worked on the checkbook. The bed was made before I jumped into the shower, dressed, bought lunch at the organic market on my way to the rehab class. Throughout the morning, I just reorganized everything I noticed.

I never sat down.

Off to the rehab class and Sherman and the new guy, Don. We both were able to get Don to laugh out loud several times before the class. Our goal was met!

After all of this, I still had energy after driving home to made a new recipe of baked spring rolls for my breakfasts or lunches. Michael arrived home while I was taking them out of the oven and ate two of them! Ground chicken and vegetable filled rice papers. Delicious but they took a lot of time to make. Still, I had enough energy to make dinner and clean the kitchen. By 7PM, I was fighting falling asleep in my chair.

I achieved a lot yesterday. These past two months have been so difficult with an increase of shortness of breath and needing more oxygen and having no stamina. Yesterday was the first day I felt that my health had taken a real turn for the better.

Michael spoke with William yesterday, he had been home just a day from a festival in Mexico but said he was looking forward to our visit. The most amazing store in the Pacific Northwest called Filson ( HERE ) just opened a new flag ship store in Seattle, which is on our list of things to see while we are there. I think William is making a list of all the food he wants us to try. For the past three years, he would say, "Next time you come up, I found this great place..." I hope we walk a lot!

Tuesday, January 26, 2016


Yesterday was a non-stop day and I was so happy to see Michael already home when I arrive right at 3PM. He hauled all the groceries into the house and helped me put them away. Everything else went as planned. Mom looked great, we had a cup of soup for lunch and talked and talked and talked.

What was so fantastic was that I was not exhausted. The past two months, I could not have done half of what I did yesterday and I still would have been ready for bed by 7PM. Definitely on the mend but still not feeling 100%.

In other news, my 58-year old brother quit his job last week. There were lots of reasons and he had been miserable for quite some time. He lives in a small town in New Mexico near the university where he earned his PhD. They had been talking to him about doing some teaching and the conversation had resolved to, "Any class. Any time." He will take some time off and maybe teach a class or two in the Fall. A lovely way to work into full retirement.

Tuesday equal rehab class. If the new guy is there early, I am going to bring him into the group and introduce him around. We will turn his scowl into a smile!

Monday, January 25, 2016

Back to Reality

No rain until Friday, no doctor's until Thursday, needed haircuts on Wednesday and rehab class on Tuesday. A rather quiet week ahead. But today, ah today, is going to be non-stop: the other rehab then the butcher then Trader Joe's then mom's then the bank then Safeway then home. I think I want a nap already. We had such a nice weekend that I really don't want to go back to reality.

The other interesting thing I am doing is stopping the Flonase beginning today as I am seeing a new ENT doctor next Monday. I want the full-blown issue to be seen by her. Ever since I got sick just a year ago, I have been struggling with fluid behind my eardrum and lots of ringing in my ear. The Flonase really helped but the side effects included coughing and shortness of breath. Time to get off of it.

Life around here has become so much simpler for me after Michael took over the laundry duties. I no longer even think about it. It has also been a lot of fun cooking together as I sit on the stool and watch while he works. Last week, while making an old-fashioned meatloaf of beef, pork and veal, he learned how to cut an onion in perfect small dice. This week, I am going to talk him through Barbacoa Tacos ( HERE). This is a very extensive recipe and it will teach him a lot of different techniques. We need to invite our new neighbors over for dinner and this is what I think we will make for them. Something different. Unique.

We are trying to peak ahead to the weather in the areas we will be driving through in two weeks on our trip to Seattle to see William. So far, so good. Lots of rain but no snow is in the forecast. So far. Fingers crossed.

Sunday, January 24, 2016

On Tour

What a treat! Barbara had bought a Groupon for a tour and tasting at a distillery near her son and his partner's house. We met in the morning then drove the hour to Brian and Denny's beautiful home where they had a lovely and thoughtful spread of food before we wandered over for the tasting.

The operation was in a warehouse. Whiskey and bourbon. A start up. The tastings were interesting. All I will say is that they have a long way to go. One cannot hurry a good bourbon. Michael bought a hat, some bourbon brown sugar and a candle. No bottle came home with us.

There was a horrific accident on the freeway, which really slowed down our drive back to Barbara and John's house. We had left home at 9AM and arrived back to our home after 9PM. A long but very fun and interesting day! There was never a pause in the conversation. It was fantastic to get out of our Saturday routine and a reminder that we need to change it up more often.

Michael is going over the hill for an hour so I am going to get a quick workout at the gym.
Football is on the agenda as is making the shopping list for the week. A cosy Sunday.

Saturday, January 23, 2016

Adult Field Trip

I just got an email trying to convince me to join How did I ever get their attention? Good for a Saturday morning giggle.

We are going on a field trip today with our friend Barbara but without her day care kids! We are going on an adult excursion. She and John are driving us up to have lunch with her son and his partner before we take a tour of a distillery, just up Michael's alley. It is way up in wine country and the drive up should be gorgeous, with or without rain. Michael and Barbara have not seen each other since my niece's wedding so these old friends will be together again. I can't believe they went to high school together. He really does remember her and even some clothes she used to wear. Who knew they would know and like each other as adults? I think my mom is rather jealous she is not coming with us but she knows it would be too much for her. She adores Barbara and never turns down an opportunity to spend time with her.

Mom and I did run around yesterday but just enjoyed our time together. I had to take off a bit early for my final meeting with the counselor. It has been a very helpful and interesting experience and I learned so much from her. It was time for a break but I don't believe it was a goodbye, as I think I will meet with her going through the transplant process. As she is a life coach, she is so positive and offers different approaches that fit into my personality well. And, I really like her.

I drove home, Wayne was at the house and suddenly all the evening's plans went out the window! We drove to the harbor and had dinner with him, a rare opportunity. His family was scattered for the evening so it was lovely to get caught up with their lives. Their youngest son is receiving letters from colleges and is going to have to choose where to attend. Great kid! Physic lover. He will do well wherever he goes.

Friday, January 22, 2016

Reaching Out

Sometimes I think I am put in a situation when someone needs to hear something. Yesterday, it happened in rehab class. There was a new man, who showed up early and stood away from Sherman, Richard and me but rather glared at us with a snarl. I repeatedly smiled at him and tried to bring him in but to no avail. Later, I comment to Sherman that he appeared to be so mean. Just glaring at us. Sherman said he thought the guy was probably a good guy but just needed us to make him comfortable.

After I worked out, I found myself in the cool down area with this gentleman, Don. I began by asking how he was feeling and if he had more stamina or able to do more since he began the 8-weeks of classes before joining our class? He opened up. I got him to laugh but what I really discovered was that he was anxious, a newly diagnosed IPF patient and afraid of the future. Clearly in the panic mode.

He was on one of the new anti-fibrotic drugs - the former ovarian cancer drug - and I gave him the history of how that drug got to market, which I learned in the ILD Support Group and actually met the doctor who ran the drug study. I encouraged him to come to the meetings as he would learn a lot. I think I spotted a slight tear in his eye when he talked all about having the disease, needing to retire, feeling helpless about it all and I responded with a smile and, "I understand." I think he finally realized that he was with people who really do understand, I was able to give him information because I was just a bit further down the road and I think I made another friend.

He needed to hear my encouragement, my information about the drug and my statement that IPF is no longer a 2-3 year death sentence and the secret includes exercise. I am convinced that this all came at a time when he really needed to hear it.

And Sherman. His color wasn't as good as Tuesday. Grayer. He stopped by while I was on the bike and talked about hospice. I told him that usually one was accepted into hospice if there was a prognosis of about 6-month or less and I really didn't think he was there. He and the head of rehab had been talking and he told me that she doesn't think that either. Then, I mentioned that only the good die young so he has many more years! He laughed!

Thursday, January 21, 2016

Pushing Myself

Between storms, I was able to cut the back lawn yesterday, as well as hauling a lot of debris out to the recycle bin. It felt great to move, though I still had to stop to catch my breath a bit. Maybe I am not 100% yet but it sure was great to be out in the sunshine. All the rains have helped to grow weeds! Lots of weeds! It is going to take days and days to pull the yards back together after the rains end.

Nothing, and I mean nothing, is better than a shower after working hard. It felt marvelous. Michael came home and we went out for a cup of coffee. A pour over. Isn't that the old-fashioned drip coffee? There is a new, very organic coffee shop close to our house so we went there, watched traffic from our perch and talked. It was nice to be out in the world together.

Orchestra rehearsal went well last night. Time is running out as the concert is February 6. We in the bass section are ready and playing well. Feeling very positive about this concert.

It was probably the most I have physically done in one day in a long time. I was not exhausted, which was a good sign. After sleeping until 6:30, I need to hit the road early for a mammogram before meeting Sherman before our rehab class. The goal will be to push myself even harder today to see what I can do on all the equipment.

William's birthday was yesterday. He was on a plane to Mexico, where it was 80 degrees and sunshine! He was so looking forward to it. He is on tour working a weekend festival and will fly home Sunday. I wonder if all mothers think back to the day their children were born. It was magical and terrifying. Emergency c-section. We always say he was born under a lucky star. As he is beginning to spread into a new venture, we have absolute confidence that it, too, will be successful. He just has that special touch. Born with it on that day many years ago.

Wednesday, January 20, 2016

Feeling Normal!

Yesterday was the first time in a long time that I worked out and didn't watch every second going by and fighting to keep going. I could have been on the treadmill forever. No coughing. No shortness of breath. I kicked it up in speed and even added a minute without realizing it. I was reading. For the first time since well before Christmas, I even added the elliptical to the routine. It felt like I use to feel while working out before the downturn of the past two plus months.

I am back.

Who was not back was Sherman. I arrived early and Dick was there! I did not expect to see him. An extra added bonus! His doctor told him to get to rehab class while going through radiation, so there he was. He went eleven minutes on the treadmill! But, we had a serious talk together before the class. I told him about my frustrations with ordering the oxygen needs for our trip and British Don's mental state after he discovered his arteries were totally blocked following his quadruple bypass only a year ago. He shared the changes he had discovered in himself since finding the lung cancer. It was a conversation we probably would not have had if others had been around. I think he felt better talking about it all.

While Dick was checking his sugar levels, I phoned Sherman. He didn't want to drive in the massive rainstorm that had hit right when he was getting ready to drive to the class. He also complained about the cold and that he didn't want to get sick. I hope to see him Thursday.

Today, I think I may walk through the high grass in the back yard to see if it is dry enough to cut. It poured yesterday so I may be a little premature. It is going to be dry and warm until the weekend, when the next storm is due.

Tuesday, January 19, 2016

Big Headaches

Rehab class this morning! Sherman! We plan to meet early, as usual, for a good chat. Apparently, during a doctor's visit, he either didn't hear or he didn't understand the implications of what the doctors was saying when he asked Sherman's daughter if they had contacted hospice yet.


We had an amazing experience with the local hospice before my aunt died. No more doctor appointments, no more having to deal with ordering medications, no more worrying about her care, we were just able to enjoy being with her. Spending time with her.

Mom and I were with her just after she died and waited for a hospice doctor to arrive to declare her dead. A young female doctor came through the night on her motorcycle and was extremely kind, thoughtful and helpful.

Through the grapevine, I realized Sherman's daughter doesn't understand what hospice entails. It will offer relief to the family during very stressful times.

I will not bring up hospice with Sherman but if he talks about it, I will explain what it is all about and our personal experience with it.

Portable oxygen systems. I tried to order one from a company I had rent from in the past. Well, no more. They no longer will rent to me if I get my oxygen from another company. Now what?!? I knew my company was a pain when ordering anything like this but...I phoned. The costs were high! $250 a week plus $35.00 for every additional day. I used to rent one for $350/month. I would need to fill out paperwork, have Dr. K. sign paperwork and get it back to them before Monday. They didn't understand that I just can't drive into town and have the doctor sign it. It would require a drive into the city and the form being left at a desk. There would be no guarantee that she would ever see it. They said they would FAX it to her. But, I needed both forms to be sent back to them together. That would be impossible. We both will FAX back, but no, that just wouldn't work for them.

But wait. It gets worse. They mentioned that the only POS they offer for rental was not appropriate for sleeping. WHAT? Isn't that why people rent one so they can bring it along on airplanes and trips instead of having to have concentrator sent to numerous hotels?

I was beginning to worry. We are only renting this to provide oxygen for just one overnight on our trip to Seattle. We were going to take two days, instead of one, to drive the 800 miles for the first time ever.

She also suggested we have a concentrator waiting for us in the Seattle hotel. So, I had to call Hilton and make the reservation. But, somehow I got connected to another department after I had my  confirmation number. I spent the next 10-minutes explaining to some guy, then his boss, that we were not interested in a nice, almost free vacation in Las Vegas for a week, if only we listened to a sales pitch for two hours while we were there. They finally got that I was not interested. Period.

Then, I phoned the oxygen company to order the concentrator. This was where I got really nervous. She told me that even though we are leaving Seattle on a Friday, the oxygen company would not be able to pick up the concentrator from the hotel until the follow Wednesday. I would be responsible for the equipment. WHAT? If it disappeared, my credit card would be hit for its cost. How much? She said $1000 to $2000. I asked if the driver notifies the hotel about the pickup date when they drop off the concentrator? Nope. And, I was responsible for informing the hotel of the pickup date. I told her that I was not too concern about ordering this one concentrator but when I order 15 of them on our cross country, that could potentially expose me to $30,000 of losses.

Immediately, I phoned the hotel where we are staying to notify them of the arrival dates of the concentrator and how sorry I was that it was not able to be picked up for five days after we leave. The woman at the desk was marvelous and told me that she would put a note on the reservation and make sure that it is protected after we leave. She told me that they have never had a problem.

Michael arrived home about this time. I explained all of the above and we made a major decision: we would cancel the order for the portable oxygen system and drive the entire 800 miles in one day. It will be exhausting, he will stay low and have lots of sleep for a few days before the drive and we will just plow through. Now, if only we could count on the weather to cooperate while we drive the major pass through the mountains near the Oregon boarder!

Monday, January 18, 2016

Feeling Better

We watched a lot of football yesterday. The rains didn't arrive when expected. We kept waiting and waiting until BOOM! a massive storm rolled in during the evening and poured well into the night. Today should be mild. Sorry that I am so focused on the weather but we have not seen rain here for four years and it feels marvelous! The big fear is that it will suddenly stop, like in past years. Apparently, El Nino is strong enough to keep it coming through May. Fingers crossed.

After working out at the other rehab, mom and I will swing by the oxygen company where I have rented portable oxygen equipment in the past. The Eclipse has continuous flow instead of just on demand. My lungs are so weak that at night, I don't have enough power in my inhale to kick it in and an alarm sounds after a bit. Years ago, it was around $350/month to rent. As I will return it in just over a week, they will give me a parcel refund.

My cough has greatly lessened. Though I have not exerted a lot this weekend, I really have not had that deep, long cough that sounds like I dying. It will be interesting to see how I do working out this morning.

Sunday, January 17, 2016

A Bad Diagnosis

Okay, so maybe I am not fully recovered yet. After nine hours of sleep, I went back to bed yesterday morning and slept another two hours.

So not me.

I slept other full night last night and feel pretty good this morning. There is still a huge storm that is supposed to continue to blow through today, so we are staying on this side of the hill. Michael enjoyed the two football games yesterday and I am sure he will be watching the two featured games today. Somewhere in there, we are going to do a Safeway run together then go to the organic market to buy some little, healthful lunch to bring home to eat while watching the games.

My mind is bouncing around preparing for our tax appointment, the trip to see William, the orchestra concert and British Don. He was told that there was nothing more they could do after his procedure and that he would eventually need a heart transplant. This has shaken him to the core. He was totally blocked in two arteries in only one year since the quadruple bypass. My mom's university hospital is renown for their work with the heart, so I encouraged him to get a second opinion from them.

The real problem is British Don. I hope this has scared him a bit. After his bypass, we brought heart-healthy dinners to his home but noticed he was eating not only regular foods but super fatty foods. Bacon. Pork belly. My mom commented that he didn't have a wife to badger him to eat properly. She also thought that maybe he didn't want to concede that he had a serious medical problem. He did really well at the rehab place after the surgery, lost a lot of weight, worked out in their gym and was looking really good. He has gained all the weight back.

They gave him 3-5 years before they will need to do another major surgery or transplant. Funny, those were the same words and prognosis I was given in 2005. I told him that I quietly replied in my head back to the doctor, "I don't think so." I knew that it was up to me to extend my life. I changed how I ate (started an anti-inflammatory diet) and began pulmonary rehab. From that point forward, I worked out six days a week for years and years.

Now it is up to Don. It is about dealing with his diet and exercise everyday. Every meal. Every bite. I am puling for him.

Saturday, January 16, 2016

British Don

A long day yesterday. British Don went through his procedure but they discovered that two of his attachments from the quadruple bypass had "healed" and were totally blocked. They had to insert two stents in other areas to open them back up again. We visited him still in recovery instead of ICU as there was no room available. The place was hopping. Talking with the nurse, they had five emergency stent or heart emergencies that morning. She was looking very tired! She also allowed us to visit but politely told us to leave after a bit. Don was drugged, enjoying our visit but fading. They kept him in overnight and he will be released sometime today.

I struggled to stay awake until 8PM last night. Michael dropped me off at mom's at 8:30 and met me there again at 1:30 to drive up to Don's hospital. Mom and I did some errands, created a car cover for the hood of her mini cooper to keep the cats from scratching the paint and had a fun, long lunch at Nordstrom. When we got home, I made a rather involved dinner, which require a rather involved cleanup. It was delicious and worth the effort but it took the final bit of energy out of me.

Today, for me, will be filled with paperwork in preparation of tax season, cleaning out the refrig and making the weekly food shopping list. Rain is expected most of the day but I hope to get out for a quick walk between rain drops.

Friday, January 15, 2016


British Don is already at the hospital waiting for his 9AM procedure. He just texted me. During his one year check-up after his quadruple bypass surgery on Wednesday, they found a new blockage in an area on the other side of his heart, away from the bypass. They will insert a stent this morning and he will have to spend the night. We are going up to see him mid-afternoon.

He is very nervous and hasn't slept in two day.

Mom and I are spending the day together again then Michael will retrieve me from her house this afternoon before heading into the city to visit Don.

I was able to make an appointment in a couple of weeks with Lois' ENT doctor to address the issue of fluid behind my ear drum. Flonase has kept it livable but I am growing concerned about the side effects. Apparently, Flonase can cause coughing and shortness of breath. Is this the reason I have been having problems with both? Time to bring in the experts!

It's Friday. A very quiet weekend is ahead. I am still gathering my strength but I am feeling so much better.

A tough way to begin a new year!

Thursday, January 14, 2016


Powerball madness! Michael's sister Anna lives near the city where the one winning ticket was sold in California. While I was at the orchestra rehearsal, they were texting. He teased her and they had fun together. We bought a ticket and hit the Powerball and one number. Not $1.5B but at least we are still winners!

Back to reality.

Michael and I spent a quiet day together. It began with a drive down the coast after a big storm blew through during the night. Signs of falling material on the road were still present, though all soil and rocks had been removed by the time we drove by. We wandered back into town for lunch then we did chores and paid bills. Nothing earth shaking! Normal life. But, as I just am coming out of downturn, it felt marvelous to be out in the world without supplemental oxygen, no pulling in my chest, no coughing, no exhaustion.

I even forgot to bring my oxygen with me to the orchestra rehearsal to wear while I pulled my huge string bass in and out of the car and rehearsal space. There was only a little coughing when I got into the car after loading it in on my way home. I was very surprised. I am really recovering. Just a week ago, I needed the oxygen and still coughed quite a bit.

We also are confirming plans to visit William in a few weeks. It will be our first time to take two days to drive the 800 miles. We realized during our last road trip that we really should not drive 13 - 14 hours in one day anymore. We are getting too old and it is too wearing on Michael. And, we really are not in any hurry. It will be a short visit. Leaving on a Sunday, arriving in Seattle on a Monday for dinner with William, leaving Thursday and arriving home on Friday. I am going to rent a portable oxygen system as we are worried about having to take a different road to avoid the quicker pass, if closed due to the weather. I can't pre-order a concentrator to meet us at a hotel if we can't get to that hotel! I am making the Seattle reservations today. It is just the hotels on the trip up and back that we are going to have to wait until the time grows closer for the weather information.

Mom has an appointment for a shot in her eye this morning, we will have a nice lunch and chat up a storm. A fun day.

Wednesday, January 13, 2016

Sweet Few Minutes

My rehab boys were waiting for me! I arrived with a piece of tiramisu for Sherman and a delicious piece of almond cake for Dick to enjoy with one of his endless cups of coffee. Sherman looked fantastic. His color was good, he looked energetic and much better than I had anticipated. Dick, not so much. The radiation treatments are taking their toll. He was rather pale and looked tired and weak.

It was so great to have the three of us together again.

Dick didn't stay long, he needed to eat and go to bed for a nap. He had just received a treatment before meeting us. Lots of hugs all around.

Sherman stayed and worked out for about 25 minutes. Amazing. I think he felt better afterwards and said he would return for Thursday's class. Everyone asked how he was doing and commented that it was great to have him back in class. He had to know how much he is loved and how much he was missed. I hope it helped with his depression. We talked about it. He has lost his confidence, even driving. He was a USP long distance driver and is very proud of that. A professional. For him to feel that it is so out of character. His real issue is that it takes so much longer to get up and out of the house that he just gives up and stays home. That is bad. We talked that he really had to fight that and come to class, at the very least. He told me his daughter is saying the something to him. Great.

I tried to just be quiet and listen to the two friends talk and drank it all in. Dick is not going to be able to join us for many more weeks/months so I just wanted to imprint the few minutes together in my memory bank.

We gathered to celebrate Sherman's 91st birthday. Mission accomplished.

Tuesday, January 12, 2016

Rehab Boys

It's all arranged. Sherman agreed to show up before the rehab class this morning but only after I sweetened the invitation with the threat of a slice of his favorite tiramisu. Bingo! He probably won't work out but he will see everyone and sign the birthday cards for the other two people in our class who share his birth date.

Then, I phoned Dick to see if he could swing by, too. He probably will come by after his radiation treatment but I told him not to come if he was too tired.

Maybe my two rehab boys will be together again. Bliss.

Today is my brother's birthday. I can't believe my little brother is 58-years old. How did that happen? We sent two cards, as I could not decide between them, and a pair of the most luxurious deer skin gloves. It has been so cold, he will use them!

I was in the gym by 8:15 yesterday then made my way to mom's afterwards. She looked fantastic, we went to a fancy lunch and talked all day. It has been a nice start to the New Year with no doctor appointments until this Thursday. A nice break.

Monday, January 11, 2016


Sherman is giving up. Word has come back to me from several sources that my rehab boy is waiting to die. His breathing is more labored, it is harder to just do activities of daily living, he is depressed and he is exhausted. I am going to see if I can postpone his downhill fall a bit.

His 91st birthday is Thursday but I won't be at the rehab class because mom has an appointment for the shot in her eye. So, I am phoning him this morning to ask if he could come to the class tomorrow, whether he works out or not. I will dangle piece of his favorite tiramisu as bait. Just come. People will rally around him, he will feel special and he will remember how great it feels to be out in the world again. I hope.

Maybe he will push himself to stay with us all a bit longer. Maybe he will be back on Thursday or the following Tuesday. 

I can't imagine my life without this sweet, marvelous man whom I meet eleven years ago. He giggles when I tell people that I have known him since he was in his 70s. A dear friend. 

Sunday, January 10, 2016

Making Memories

Sunday morning. Still dark but warmer than usual in the house. The heater is not working quite so hard. No rain dancing on the roof. The gentle hum of the dishwasher is in the background. The coffee is hot. Conversation is gentle and soft. The sky is beginning to lighten against the silhouettes of trees and houses. Nature's art.

The need to make something for breakfast is beginning to poke me out of my chair and into the kitchen. From there, the bed will be made, I will get dressed and our day will begin.

But for now, I love these moments. These are the moments I will remember when life gets rough and scary.

Sunday morning.

Saturday, January 9, 2016

Wet Saturday

It was a long day. I was out of the house by 7:30 and in the gym by 8:00. It went well, I increased my time and load on the machines and only coughed a bit on the bike. Not bad. Mom and I had soup for lunch then I dropped her off for her appointment with the foot doctor. I prompted her on how to present her case to them and left her on her own.

My appointment with the counselor was a long drive north but I arrived early. It was right on the ocean, which was churning with huge waves. I drove along the little road right on the water's edge and there were areas that were closed due to the waves breaking on the road. Fun to just watch nature having a lot of fun.

This morning, I am meeting my friend Dolores for coffee and a chat over the pass. Saturday is usually  reserved for yard work but the rains give me the perfect excuse to get out and enjoy myself! What a treat!

Friday, January 8, 2016

Stronger and Stronger

In pulmonary rehab yesterday, I added time on both the treadmill and bike. The elliptical was whispering to me but I resisted it for another day. Next Tuesday, I am going to saddle up and give it a try again. It is amazing how much better I feel everyday. Not feeling exhausted. Not feeling the tightness in my chest. Not making sounds when I breathe. All good.

Within the hour, I will be out the door and off to the other rehab for a workout. I want to keep working out everyday. Afterwards, mom and I will spend time together, have a cup of Russian Cabbage soup for lunch before I have her follow me to an appointment. She is meeting with the group of doctors who removed her toe years ago. She is not happy with the results and feels they should have offered other options. It has changed her gait, the toes next to the one that was removed are now very long and all the toes have moved, making her bunion painful again. I have an appointment at the other end of the county so I can only insure she gets there but she should easily be able to find her way home. I hope! Her sense of direction is horrible.

Saturday? Nothing. I want to putter around the house and rain is expected. A quiet weekend. I want to keep improving and will try not to overextend myself.

2016 seems to be flying by. When I was working, January seemed endless but now, BOOM. Suddenly, it will be February then summer. I am trying to enjoy and appreciate each day.

Thursday, January 7, 2016

So Much Better

I can't believe how much better I feel. My breathing at night is so much better as I am no longer making little "meow" sounds when exhaling. Even working out at the other rehab yesterday was so much easier and I was able to kick up the treadmill speed. Michael and I spent the day together, along with a long to-do list, yet I had enough energy for orchestra rehearsal last night. I am no longer exhausted and feeling that I would need a nap later in the day when I would climb out of bed in the mornings.

I feel like I have been given a reprise. I have a chance to once again, avoid lung transplants by focusing on exercise. Only time will tell. It is back to the rehab class today.

Funny story. Michael and I went to lunch at a noisy Dutch bakery on the Avenue yesterday. It was so noisy that neither of us noticed the many texts then phone calls coming in on both of our phones. It was William. He was at his DMV renewing his driver's license. We discovered this while walking through the Sur la Table after lunch and Michael felt his phone jiggle. Here is where I feel like a terrible mother: he needed to know where we were born. Our son didn't know that?!? What made me laugh was that Michael gave him the wrong city for me! Forty-two years of marriage! And he knew better! We drove by the apartment where my parents were living when I was born the last time we were in the Chicago area. Thankfully, I was standing there and was able to correct him.

We are watching the weather and hoping to slip up to Seattle between storm in early February for a visit with William before his next big tour out of the country. We haven't seen him since August. Too long.

Wednesday, January 6, 2016

A Little Bit Everyday

Yesterday, I arrived to our meeting spot near the gym for the rehab class right on time and just itching to see Sherman and Dick, my rehab boys. It had been awhile. Missing. Both of them. I phoned Sherman and became very concerned. He was needing 5-6 liters of oxygen to just sit and 7-8 to do anything. That was a major increase since I had seen him last. Scary. He also mentioned that his daughter told him he was depressed as he doesn't want to leave the house as it takes too much effort. I told him I would see him at rehab on Thursday. If he doesn't show up, I will phone him Monday to remind him to come on Tuesday. I think if he just gets to rehab, he will feel better. Everyone stopped me to ask about why he was absent and all expressed concern. He just does not realize how much he is loved.

Then, I phoned Dick. He was having lunch with his wife. The radiation on his cancer mass on the outside of his lung was really wiping him out. He probably won't be a rehab for a while.

Scary times.

Going into the class, I was rather nervous with anticipation of my numbers and coughing. It was rather remarkable. My numbers were pretty good and I didn't cough very much. Though I did a much reduced routine, I still had to push myself. What was totally unexpected and a pleasant surprise, I walked out of there feeling so much better. I was breathing better. There was no tightness in my chest nor the feeling that I needed supplemental oxygen.

So, I think the answer to getting back to better health without needing new lungs in the near future is to move everyday. Again. Starting and building myself back up. Again.

Michael and I are spending the day together and have a long list of things we need to do. On that list is a stop at the other rehab so I can spend some time on the treadmill. A little bit. Everyday. That is the goal.

Tuesday, January 5, 2016

All About the Cough

At the other rehab yesterday: I started with the treadmill at 3.5 MPH for eleven minutes. No coughing. What was even more amazing was that I chatted with a friend on the treadmill next to me the entire time. Feeling positive, I made my way to the free weights. I made the lifts also talking to the RNs the entire time. No coughing. Then, I made my way to the upright bike. That was where it fell apart. I think it was because it kicked up my heart rate, which kicked in the coughing. I only did five minutes. My saturation rates throughout the workout were fine. Even more of a surprise.

At the rehab class today: I will ask that my saturation rates be checked more often during the workout. The goal? Treadmill, wall pulleys, bike, free weights, elliptical. If I can get through that routine, I will be one tired, happy person. Coughing will determine whether I complete the goal or not.

There was a young woman hired to be the administrative assistant for the admissions department at the school where I got sick. I liked her. She had a lot to learn but was smart. Yesterday, I got a friend request from her on Facebook. What a surprise! I haven't heard from her since 2005 and was thrilled to see that she was married, had two young children and was still working at the school. Good for her!

A major storm is due today. Lots and lots of glorious rain though it will be a challenge to drive over pass. Strong winds and an even bigger storm is due tomorrow. Keep them coming!

Monday, January 4, 2016

Back to Routines

Here we go. The real beginning to the year. Back to routines. Back to rehab. Back to life.

With the rains playing in the background, the day will feature a return to the other rehab to see how I am breathing. I will watch my numbers while working out with my supplemental oxygen. I will also monitor how I am feeling before and afterwards. Am I more energized? Am I exhausted? Am I breathing better?

Mom wants to do some shopping at JC Penney in a mall far from her house so she really can't drive there. It will be a treat. But, with the stock market down so horribly this morning, she may not feel like shopping!

I am looking forward to my workout at the rehab class tomorrow to really determine whether or not to contact Dr. K. to talk about an assessment at the lung transplant clinic. I am feeling better but I find I am more short of breath while doing day chores.

To the shower! To the gym! To the store! Into life!

Sunday, January 3, 2016

All Good

I got out of bed and dressed by 1:30 yesterday. Additional sleep was really needed after dinner at Dave and Lori's on New Year's Day. I slept well again last night but still feel I need a bit more.

It is cold and now the rains are expected to return this afternoon and throughout the week.

Another quiet day ahead. The only thing on the list is to buy coffee grounds. Period.

Sorry I am so boring, though I am still worried about coughing. It has lessened but it may be because I am not pushing myself at all. Tomorrow morning, I am going to the other rehab and try a short workout. Tuesday will see my return to the rehab class.

This year is beginning to unfold very slowly, which is just fine with me. Last year, it was terrifying with the after effects of Michael's convulsion and concussion then a bad case of flu. I got the flu in January and it took almost three months to fully recover. That was bad. Don't want to do that again!

So, I am boring. Boring is a not bad at this point considering the other options.

Saturday, January 2, 2016

Rain Prep

We stayed out way too late. I don't think we settled into bed before 12:30AM. The house was cold and my feet didn't thaw until after 5AM. Sheet, blanket, quilt, bathrobe, throw blanket. Still not enough! Miserable night!

But, it was all worth it. We had a fantastic night at the Stewart's house! Endless talking for seven hours! Dinner was a perfectly cooked filet roast, potatoes and a salad. And a small piece of homemade rum cake. We were all yawning, it was clearly time to go so we made a date to do it again in June.

I am going back to bed after breakfast! Rain is due beginning tonight through the week so I am going to just blow the yards this afternoon, just to clean things up a bit.

A quiet day today. Hopefully.

Friday, January 1, 2016

Day 1

Happy New Year!

We made it to 10:00 last night. We are wimps!

A new year feels so fresh and like an unopened present. So far, so good. Coffee is strong and hot, I slept in until 6:15, the house is clean and all is right with the world.

Tonight we will be in the home of friends. We met Dave when we moved down the street from his parent's house in 1975. He practically lived with us except actually sleeping at the house. Just after William was born in 1981, Dave brought Lori into our lives. They married and had their son Joel on the same day, but a different year, as William's. What are the odds? Joel and Mindy married in 2014 so it will be fun to get caught up on their lives. Nothing like old friends.

Minor chores today. I need to water my pots in the garden and I want to quickly wash just tow windows. The rain was so dirty that we can't even see out of them. More rain expected tomorrow and the rest of the week. Thankfully.

Happy New Year to you, dear reader. Hang on, here we go.

An update on Google Friend Connect

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

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

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

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

Posted by Michael Goddard, Software Engineer