Living Well with a Bad Diagnosis - Lung Disease

Friday, May 31, 2013

It's Friday, Friday

It sure makes a difference to sleep the entire night without awaking. I feel fantastic this morning. The coughing has really lessened and the goal is not to push myself so hard that it returns. Mom has an afternoon appointment with the eye surgeon to have a look at the surgery site. But first this morning, I am going to the other rehab, we will go to lunch and begin to buy things for Michael's mom's 80th birthday visit in July. I want to buy some defusers for both guest bedrooms, new pillowcases and fancy hangers for the closets.

Since it is Friday, we are looking forward to our after work music and conversation -with a cocktail for Michael - in the garden. The weather should be gorgeous and expected to be even warmer this weekend.

Michael mentioned this morning that on Saturday night, he wants to put the top down on the car and drive the ridge, which overlooks both the ocean and the Silicon Valley through the redwoods. It opens into a small town in the Santa Cruz mountains and that road leads into a city, which is a gateway to Santa Cruz on the coast. We usually stop for a cup of coffee or a quick dinner before driving the very mountainous and curvy Highway 17 to Santa Cruz then begin to drive the 45-minutes north to our little town. The best time to ride in a convertible is at nighttime. We have driven this same route in the past and since we are away from any city lights when we are driving up the coast, the large array of stars is always breathtaking and there is always a feeling of total awe in its vast beauty.

William phoned on Wednesday. It is so hard for a mom to hear that a child is ill. I wanted to rush wherever he was and fix it all. They all got something while in Europe and even had to cancel a concert as the lead singer had no voice. He was under doctor's care, told to not speak, given shots and isolated. They made the concert last night and have today off on their way to Houston. We just sent him an e-mail regarding a restaurant there. He must go. The owner/chef was a guitarist who played with Michael and me before we even dated. I have known the chef since he was 15-years old. When we were traveling between San Antonio and New Orleans, we had arranged to meet him at one of his restaurants. Forty years had passed since we had seen him. We had a ball. He knows about William and his job so we suggested that William let the him know he is coming. We'll see if he takes our advice and goes or not. When we saw this on the menu, we knew it would entice him: Seared Foie Gras ‘Poor Boy’ w/ Truffle Slaw & Foie Gras Remoulade. Bingo!

Thursday, May 30, 2013


A shout out to Lisa. I hope all is well and you have begun the process. Many prayers headed your way.

Sometime every week during the yoga hell class, I become nauseous. Just a bit. It passes. I think it is due to all of the core work and the smell of my latex yoga mat. Yesterday, it reached a new level. We only had five people in the class so there was a lot of individualized attention, we held poises longer, I was able to work my core with more intensity and towards the end of the 90-minute class, I suddenly realized I was going to vomit.

My mouth began to fill with that horrible tasting salty pre-vomit fluid as I quickly left the class for a bathroom. I spit it all into the toilet while fighting the urge to just let lose and vomit. I was able to hold it down, walked outside to get some air, took a sip of the yoga tea and headed back to the class. Thankfully, it ended within 10-minutes.

Racing home, I changed my clothing and was with mom by lunchtime. We had a nice lunch at Nordstroms, I paid the mortgage and cell phone bill, bought a gift card at Target for a grandchild of a worker at Michael's job and found a Sally's Beauty Supply for mom. We talked non-stop. Of course.

Mom's eyes looked fantastic. Six days after the surgery, there was no bruising or swelling. The doctor is going to be very pleased when we see him tomorrow. This was the surgery to bring her lower eye lids closer to her eye balls so the tears would properly flow to the corner of her eye instead of down her cheek!

The only thing on my schedule today is the rehab class and I need to swing by the organic market. That's it. I didn't sleep well last night so that should be enough!

Happy Thursday.

Wednesday, May 29, 2013

Skin Checked and a Recipe

It all went well. The drive into and home from deep in the city and the actual meeting with the dermatologist went smoothly. It really was a 10-minute appointment. She said I looked good and only spotted a little blue mark in my hair line, which will be re-checked in three months. Thank goodness. She also told me that the basil cell carcinoma I still have bits of on my chest is VERY slow growing and not to worry.

Before the appointment, I went to the dermatology surgery department to see what was going on with my biopsy slides. Turned out they had been read and a report had been written. NO ONE PHONED ME. So, I made an appointment with the surgeon for a mandatory consultation before I can make an appointment to finally have the rest of the cancer removed. I will make the long drive back into the city on Monday for a 4:45PM appointment but it will be worth every minute to get the process moving towards completion. I just want the cancer to be removed.

My former student rescheduled our lunch to next Wednesday so I am going to the yoga hell class within the hour then spending the rest of the day with mom. Since her surgery on Friday, I have been in touch but haven't seen her. I need to run some errands and she wants to swing by a store and since I don't have orchestra tonight, I can spend the extra energy with her!

Michael is excited for dinner tonight. Years ago, I used to make homemade Gyros, even before we had them in a restaurant. It was his request for the week. I pulled the old recipe originally from Bon Appetit, bought the Tzatziki sauce from Trader Joe's instead of making it and will have it ready for dinner tonight.
Here is the basic recipe:

3/4 lb. ground lamb
1/4 lb. ground beef
1 cup fresh bread crumbs (I leave this out)
3 T. fresh minced parsley
1 large egg, beaten lightly
1 garlic clove, minced
1/2 t. cumin

four 6-inch pita cut in half
12 Greek Olives, chopped
4 scallions, sliced thin

Combine first 7 ingredients. Salt and pepper. Form the mixture into the eight 4-inch logs and bake the logs in a baking pan in a preheated 375 degree oven for 15 minutes, or until they are cooked through, heating the pita rounds in foil in the oven for the last 5 minutes. Unwrap the pita rounds and arrange a meat log in each round. Spoon some of the sauce over the meat and add the olives and the scallions. Makes 8.

Tuesday, May 28, 2013

Ten Minutes

Monday, we ran some errands for Michael then enjoyed a lovely lunch in Palo Alto, where we had celebrated Mother's Day. It was empty! We split an appetizer, Michael had a wood oven cooked pizza and one of his most favorite things for dessert - Spumoni! Gentle rain fell as we drove home where I promptly fell asleep for an hour.

I am feeling better this morning and think I finally am beginning to recover from whatever was wrong. My cough is lessened but it will take a while for my energies to return. This afternoon, I will begin the long drive up to another campus of my university hospital. I schedule two hours to get there, find a parking space and to walk to the appointment. It is always a struggle with lots of nasty city traffic. I have a 3:40PM appointment to have my entire body checked to see if there are other cancers needing removal. I plan to also swing by the dermatology surgery department to see where I am in the process of having the last bits of the remaining original cancer removed. It is growing daily.

What is disheartening, was in the email reminder of this appointment where it noted that I was scheduled for a 10-minute appointment. Ten whole minutes. Two hours driving, 10-minute appointment, two hours driving home.

But, what I am really looking forward to after the yoga hell class tomorrow, is seeing a former student who just graduated from college. I am so proud of him I could bust. His entrance into college was delayed for a few years but when he finally arrived, he REALLY arrived. There will be just a bit of down time before he heads to Harvard to begin working towards a PhD in Economics. Spectacular.

Monday, May 27, 2013

Memorial Day

Happy Memorial Day! On this day, I always remember my Uncle Jerome who was shot down over Bremen, Germany after having engine problems during WWII. He was a navigator of a "Flying Fortress" B-17. Several others survived the crash, some made their way back to England while two others became POWs until the end of the war. They contacted my grandmother to give her the details. They never found Jerome's body and his death killed his mother. She was never the same. My mom was only 13-years old when he died and it forever changed her life.

Jerome was a published poet, pianist and composer. Mom tells about her brother bringing a piano home and trying to get it up into his bedroom on the second floor. It got stuck on the stairs. As pianos and dining room tables are not real necessities, these were usually sold first if a family needed money during the depression. It cost her family more money to hire movers to get the piano into her brother’s bedroom than the cost of the piano itself. She talks about having her sister and brother playing duets with him in his bedroom and her in the living room while Mom would tap dance or sing from the bathroom. He also had an engineering mind and I often wonder what he would have done with his life. He was only 19-years old when he died.

When mom met and decided to marry my dad, he had a very German surname. My grandmother insisted that her daughter would never have a German name, she paid the court costs to have it changed and I was raised using his mother's maiden instead. Very English. Sadly, my brother was the only boy born in my dad's family so the German name was forever stopped.

My best to all the families of our soldiers. May they all come home alive and well.

Sunday, May 26, 2013

Surprise Night Out

The timing could not have been better. I awoke to rain. A light drizzle. After five hours working in the garden yesterday, I am thrilled that I didn't put it off until today and the grass is getting a good watering after its first post fertilizing cutting. The camellias, azaleas and rhododendrons have all been fertilized to set next year's blooms, new flowers have been planted in both the front and back gardens and I pulled out one section of a small hedge which had died, for which I have wounds. My poor arms. With the prednisone, my skin has become rather thin and delicate. Working is a small spot, on my knees under the front window boxes, I caused massive purple spots on my hand and two more spot up my arm. Rather ugly!

I really was not feeling well but the garden needed work. It was a struggle but I did it. Afterwards, I was going to take a shower, climb into my pajamas and go to bed early. Nope. Didn't happen. Instead, Michael phoned. Chuck, the owner of the restaurant right on the beach north of us, phoned to tell him about a band that was led by a fantastic saxophonist who was scheduled to perform last night. A must see.

At 7:00, we were both showered and dressed and in the car. We sat at the bar over looking the stage and dance floor, listened to music while watching the sunset. The band was REALLY good. I wish I could sing and play like them: just full out, from the guts, bluesy, sweet, soulful singing. Chuck bought drinks, sauteed calamari and an appetizer of hot goat cheese, Greek olives, sundried tomatoes and roasted garlic for us. Delicious.

I started chatting to a guy next to me as he was waiting for someone. He had only been there a few times so we had him try the calamari and suggested a few other selections. Finally his date arrive. Guess who? My yoga teacher!!!!! What a shock!!!!! We ended up talking music and discovered he was a classical pianist going to school to become a chiropractor. He wanted to know if I knew a good jazz piano teacher. Next time I see my glaucoma doctor, I will ask with whom he first studied and pass the name to my yoga teacher!

It was weird to see her in that setting. I introduced her to Michael, she learned that I am a classical bassist, I learned that she has been taking classical singing lessons and is learning Italian operas. Good for her! They took off and we were not far behind them. I was in bed by 9:30 and slept the night.

I plan to climb back into bed this morning to try to catch a bit more sleep. We are so looking forward to a quiet, slow day tomorrow.

Saturday, May 25, 2013

New Patient Appointment

Next Tuesday, I have a first ever appointment to see a dermatologist for an all over body check to see if there are any more cancerous spots on my body. It will be a new patient appointment. Years ago, I discovered that it was wise to bring a lot of data and facts with me. There are always forms asking for current medications, family history, surgeries and illnesses. How do they expect people to remember dates and facts in a waiting room right before an appointment?

When I began the journey of my lung disease, I kept a document on my computer of all doctor appointment dates and what was discussed. It was labeled Lung History. It saved me many times. After the lawsuits, I made new documents; one was of all the current medications and why they were prescribed, another was of all the serious illnesses and surgeries in my life and finally, my family history going back four generations. I cannot tell you how many doctors told me that it was so much appreciated. They had the correct facts, no guesses.

I will print them this morning so I don't forget to bring them with me!

It is cloudy, windy again and cold outside. I don't want to go out there but the gardens are screaming for attention, water and fertilizer. It will be a long day. The joy will come when everything is finished and I can enjoy a hot shower.

Friday, May 24, 2013

Begin the Antibiotics!

I napped in starts and stops yesterday. First, I was awakened when my oxygen supplier phoned regarding a change to the delivery schedule. Settling back into my chair and covered in a nice blanket, I dozed for about 45 minutes before my friend phoned from Raleigh. After chatting for almost two hours, it was almost time to meet Michael for his hair appointment!

We had a quiet evening and I fell into bed right at 8PM. I feel rested this morning.

I started antibiotics yesterday. The cough was becoming worse, I was feeling awful, had a low grade fever and I noticed the beginning of pain in my lower right side similar to the pain I experienced a couple years ago when I had pneumonia. I tried to avoid taking antibiotics but it was time. We will see if it helps because the last several runs could not dispatch my bronchitis.

This morning, I am going to work out at the other rehab, run to the butcher's then a check-in with mom. I hope she was not in too much pain last night from her surgery yesterday. We might do a grocery run and get a Starbucks, if she is up to it.

My weekend plans include time working in the garden. The grass in a foot long (okay, an exaggeration) and lots of wind messiness. The camellias and several of the rhododendrons have finished blooming and need to be fertilized.

We are expecting a busy holiday weekend but looking forward to watching the Formula 1 race from Monaco on Sunday and maybe a little drive down the coast on Monday. Happy Memorial Day!

Thursday, May 23, 2013

Early Morning Surgery

I am blogging a bit late today. I left home at 4:30AM, grabbed mom at 5:00AM and arrived at the eye surgery center at 5:30AM. Early, once again. Her ectropion went perfectly and she is now resting at home with ice packs on both eyes.

I need a nap.

While I was gone, the housekeepers were due. I usually wipe down the toilet, make sure there is nothing in their way like shoes or other stuff and just generally pick up before their visit. I did what I could but left it, for the first time, to Michael to take care of before he went to work. He did a surprisingly good job: all breakfast dishes in the dishwasher, the coffee pot cleaned and even the bed was made!

I still am not feeling great and hope a long weekend off will offer my body a chance to recover.

Wednesday, May 22, 2013

Ran Out of Gas

I have to admit to being a bit scared yesterday. After running to Safeway then to the rehab class hospital early for a quick mammogram, I sat with Sherman and waited for the class to begin. As I waited, the more tired I became. I was yawning. My contact lenses had to be removed. I felt my energy draining out of my body. By the time I entered the class, Kelly asked if I was okay. I replied that I was very tired.

The workout was horrible, I had no energy, my numbers were horrible and I barely made it to the end. Kelley and the RN were both concerned. They had never seen me so quiet and low energy. I explained that we have been super busy and I think I finally hit the wall.

That was my reply but in my brain was a little noise of: Oh no! What is wrong? Has the Pulmonary Hypertension kicked it? Do I have pneumonia? Is this my liver getting worse? Scared that this was just not normal nor something I have felt before.

I drove home and did a couple things in the house, got a call from the tax lady who is finally beginning our taxes then climbed into my chair. After a two hour nap, I felt better. Not great but better.

Last night, I went to bed by 8 and slept through the night until I heard Michael at 5:45. I still feel tired and rather relieved that I don't have an orchestra rehearsal tonight. The only things on my agenda today are the yoga hell class this morning then I need to find some documents the tax lady wants dropped off tomorrow and finally to make some dinner. That's it.

Today is a day off. Tomorrow is going to be a challenge.

Tuesday, May 21, 2013

Imuran vs CellCept

So I have been thinking: My liver is not doing well due to the long term prednisone and Imuran use. As I understand it, the Imuran works in the liver. With this in mind, why not go back to Cellcept, which works in the bone marrow? If I changed drugs, it might give my poor liver a bit of a rest.

Years ago, I was on Cellcept as it was a new fancy expensive drug, which worked to stabilize the lung disease, along with the prednisone. Medicare baulked at having to pay for it so I was prescribed the cheaper 1950s Imuran. It has done well but I was never expected to live this long thus the organ damage.

I will have this discussion with Dr. K. when I see her in mid-August.

Only lately I have realized that I am so tired because of the damage to my liver. Amazing what abuse it has taken due to the drugs. Thank goodness I have never been a person who had cocktails. I think it would be so much worse.

Last evening, I attended Winnie's end of year concert at a small venue in town. The entire school performed a song, a dance and on xylophones. It was fantastic to be around children again. Natalie has done wonders in one year.

Having been to the Oklahoma City area many times in our travels and we have actually been through Moore, we were horrified at the broadcast of the devastation. A school. A direct hit. This morning, the numbers of the dead were revised downward, a rare event. Apparently, there was a miscount.

I remember the feeling of not knowing if my child was injured or not when he was in a school bus accident. It turned out to be a minor accident but was broadcast as serious. I flew home from work as soon as I heard about it and found him at the district office waiting for me. The overwhelming feeling of relief as I held him was something I will never forget. As I watched the images of parents being reunited with their children, that feeling of total panic then relief reminded me of this incident.

Lives are changed forever. So very sad.

Monday, May 20, 2013

Dinner with Marx and Lenin

We sat in the garden yesterday afternoon, talked, listened to music and the birds singing. There was a hummingbird who flew close to the rock fountain to catch the spray off the water. It was just feet from us. Then, we climbed into clothes appropriate for the city, picked Rick and Natalie up in our little car and headed north.

With the coastal weekend traffic, it was rather a miracle that we arrive to the East German Restaurant with two minutes to spare. Marx and Lenin gazed down on us sitting at kitchen tables. Very utilitarian. The sign on the door when entering was in three languages: You are now leaving the American Sector. But, the food was fantastic.

The dinner was a late birthday celebration for Natalie. She was in Germany for years when she was younger because her dad was in the military and Rick is German. They know their German food! They had the Weinersnitchel, as did Michael, and I had cabbage soup. It was fantastic. It was served in a light tomato broth, with pieces of pickles and a few tiny pieces of salami. I also had a side of sauerkraut. Rick and Natalie loved it and said they would recommend it to other German friends.

We were in bed by 8:00! I feel so much better today but will still need another good night of sleep to get caught up from the weekend.

Today, I am going to the other rehab then mom has an eye doctor appointment later in the morning. Summer has come just for a day as the weather will be in the mid-80s before it all cools down tomorrow and the rest of the week.

Sunday, May 19, 2013

Spring Concert. Done.

Our dear friend Randy and one of his three children dropped by for a visit yesterday afternoon. It has been three years since I had seen their oldest son at his grandmother's funeral. Oh my, he has grown up and is in college. During the conversation, I was telling them what I learned about telomeres at the last ILD Support Group meeting, Randy thought it was fascinating but his son not only knew about them but was able to explained the whole process more clearly. Kids!

This son was born with a major heart defect and had the first of three heart surgeries when he was a toddler. I was telling them about my upcoming liver biopsy that will be done through the jugular vein. He told me that during one of the later heart surgeries, they moved the equipment up through the artery in his leg but sent the little camera down the jugular vein. He doesn't even have a scar from it.

Because of his experiences, he has always been interested in medicine. He is working towards his AA degree at the moment, which is the first requirement to becoming a certified radiologist. That is his goal: Nuclear medicine. It will take many years.

Within the hour, mom and Michael arrived. They were happy to see Randy and his son, chatted for almost another hour then they headed home while I made dinner for us. It was a quick one of fish, cole slaw and cranberries. I quickly drove to the concert venue, set up, tuned up, mom and Michael arrived, warmed up with orchestra then waited for the downbeat. I glanced over at Michael. He had his eyes closed and looked exhausted. He ended up in the back of the room so if he fell asleep, he wouldn't bother anyone! Mom sat with a couple a used to know years ago who travelled from Colorado for this concert in celebration of the orchestra's 30 years. They had fun talking together.

Gerry (the other bass player) and I both played very well. It was one of the most fun concerts I have played in a long time. Even Michael stayed awake for it! His quote of the night, "You just can't beat Haydn!"

We drove mom home and finally got into bed around 11:00. Michael just looked at me this morning and announced that he was not leaving his chair until we have to go out tonight. I think he is finally exhausted, which takes a lot for him. He has such good stamina.

I actually feel pretty good. The sun is out. The garden is in total bloom. It will be a nice day. It is a good thing as next week includes a doctor's appointment for mom, a mammogram for me, rehab, yoga, eye surgery for mom at 6:15AM on Thursday and possibly a visit with my niece for the weekend. I promise never to be bored again!

Saturday, May 18, 2013

An Evening with the Swells

See that little table on the far left? That is where we were last night.

Ohhhh, I am tired. We climbed into bed at 1AM. I felt fine up until that point then I remember just passing out. On the way home, we never had a car in front or behind us. A rare event.

We began with kisses on both cheeks from the French manager of a Mexican restaurant owned by our French friends near Don's loft neighborhood. Young. Hip. Inexpensive. Somewhat gritty area. I had a duck confit soft taco. It had Chinese spices and vegetable cut into fine spears with a finish of creme fraiche. Rich, a bit sweet but the perfect blend of flavors to feature the duck.

Both Michael and our friend Don had the duck confit quesedilla which was HUGE and they ate every last bite. We made our way down a hill, took one exit off the freeway then drove straight for a couple of miles, all the way up to the top of Nob Hill. We entered the Huntington Hotel named after one of the Big Four Transcontinental Railroad guys. Yes, the "Driving the Golden Spike" guys. The others were Leland Stanford (his only child who died young was the reason he and his wife began Stanford University), Collis Huntington for who the old hotel is named, Mark Hopkins (one must visit the Top of the Mark also on Nob Hill) and Charles Crocker (I have a connection with him, which I can't tell you. Sorry. Too much information.)

When entering, there is a carpeted staircase with a cosy area around a fireplace, which we passed as we strolled past the bar. The room reeked of old money with lots of dark wood and many pieces of original art from the Big Four's past. It felt right. Monied but somehow comfortable. The bar is famous but the restaurant even more so as it has a reputation for serving odd meats, like lion, once every couple of months. Don has attended each of these "wild game" dinners, though very expensive. (The animals are all raised for their meat.) Ah, no thank you.

It was packed last night but since Don is there most Friday or Saturday nights, we were quickly seated at a private table just inside the bar and dining room. The reason it was so crowded was a wedding reception found its way to the bar through the evening. The groom was famous. Lots of "swell" people, using an ancient term. It was fun to watch the hair styles, shoes and fashions of both sexes. They closed at midnight, Michael and Don finished their THIRD cocktails and I drove back down the terrifyingly steep hill, back to the freeway for one exit and back to Don's neighborhood.

I am grabbing a quick breakfast within seconds, just enough for a base for my morning pills, then I am going back to bed. I got under 6 hours of sleep and I need to have full concentration inorder to play well at the orchestra concert tonight. Mom is due at 4:00, the call to arrive at the venue is 5:30 and the downbeat is 7:00. Here we go.

Friday, May 17, 2013

Caution: Late Nights Ahead

I stumbled through yesterday on six hours of sleep. By 8PM, I was done. Mom and I ran all the errands and her doctor's appointment went well. She is now approved and arranging to have a pacemaker/defibrillator implanted.

My coughing has returned, which is not good news. I think I just have not been able to get enough down time or sleep. To that end, I planned to take today off, pull the house together, do the laundry and work in the gardens. A quiet day. But, I learned last night that Michael had arranged for us to have an evening with British Don. We have not seen him and have been trying to get together. So tonight, we are going to enjoy some duck confit tacos together then going for cocktails to a fantastic place he goes to at the top of Nob Hill in SF. I will be the designated driver for the evening. I fear it might be a rather late evening. Tomorrow is my orchestra concert when I need to be rested and focused. It was not the best night to arrange a late night.

Saturday, mom is arriving around 4:00 for an early dinner of fish, cole slaw and cranberries (for her) before my concert. Afterwards, we will drive her back home.

Another late night.

Sunday night, we are hosting a dinner for Rick and Natalie at the East German restaurant in the city in celebration of her birthday. We are looking forward to it but it will be another late night.

Monday, mom has an early eye doctor appointment and Natalie invited me to Winnie's school's end of the year concert in town, which she is conducting. Not too late of a night but still...

So, I am concerned that I may not survive to Tuesday. The plan beginning today is to make sure I only do what I really need to do, try to take a nap each day, not to panic, eat well (when I am exhausted, I am tempted by carbs) and be grateful that I am able to live such an active life ten years after Hypersensitivity Pneumonitis invaded my lungs.

Thursday, May 16, 2013

Too Much

A quick blog this morning. Mom has a 9AM appointment at Stanford so I need to be dressed and gone within the hour. We're meeting with the pacemaker doctors to arrange one for mom. It won't fix her but it will allow her heart to function at a slightly higher level.

Afterwards, we will go to the shop to complete the transfer of title of Michael's old car. We gave it to a mechanic friend as it needed a lot of work. That will be followed by a visit to Trader Joe's and the butcher then lunch! Busy day.

Because of the orchestra concert on Saturday, I am going to stay home tomorrow to do the yard work and to pick up the house. With Michael's mom and her sister coming in July, I am also going to begin cleaning both guest room closets. Later Saturday afternoon, Michael will bring mom home with him and we will have a quick dinner of fish, cole slaw and cranberries before the concert.

The dress rehearsal last night went very well and both Gerry and I played well. It was in a new venue and I actually liked the sound better than our old spot. When I got home, Michael was listening to the new CD of the group on tour with William. It was fantastic and we stayed up a bit too late listening to it. William phoned Michael earlier in the evening just before boarding a plane to Europe for a week of concerts.

Busy day today, crazy tomorrow, concert on Saturday and then let's throw in a birthday dinner in the city on Sunday night! A wild few days ahead.

Wednesday, May 15, 2013

ILD Support Group Meeting - Telomeres

It was interesting. The Interstitial Lung Disease Support group meeting yesterday afternoon featured Dr. Paul Wolters, who is a researcher primarily in “bench work” (lab). We all learned so much and I am going to try to present most of what we learned.

We began with a scientific understanding that Pulmonary Fibrosis is a disease of aging. At one point, he said that if we all lived to 150 years old, we would all have pulmonary fibrosis. Why? Here we go:

He primarily talked about Idiopathic Pulmonary Fibrosis. That means that the origin of the disease is unknown but the results are just like all of us with an interstitial lung disease: our lungs become fibrotic. So, in effect, the process of IPF is very similar to any other scaring in an ILD.

We reviewed the basis structure of the lungs beginning with the trachea then the branches in the lungs grow smaller with 25-35 connectors to end at the alveoli, which looks like sponges. This is where the gasses are exchanged. They are three cells thick – blood cell, epithelial cell, fibroblasts.

With fibrosis, these areas fill with scar tissue, grow thicker and the transference of gasses is not properly achieved.

Dr. Wolters explained that research into the disease of Dyskeratosis Congenita gave the first clue to understanding fibrosis. It is a disease of premature aging. The patient’s skin becomes hyperpigmentation and they also have naidstrophy, oral leukoplakia, liver cirrhosis and 20-30% get lung fibrosis. They discovered a genetic mutation in this group of people. It had to do with telomeres and telomerase. Telomeres are the aging agent. They began to see that the telomeres were damaged in patients with fibrosis.

Telomeres are part of the DNA. A chromosome is just a long string of molecules. It has ends, which are protected by proteins. They act like a shoelace with the ends that protect so that the laces don’t become ragged. The same is true of the proteins that surround the ends of the chromosome. If something happens and the ends of the chromosome are not protected, they grow shorter. Everyone’s chromosomes grow shorter getting older thus is the reason we age. It all has to do with the length of the telomeres. Aging is programmed. In the Dyskeratosis Congenita, the proteins fall off as the cells are constantly being regenerated, which is why they age faster than normal.

So, cells divide, the telomeres get shorter and shorter and when critical, it dies. This is aging.

So, a lung doctor studied familial ILD (within a family) for the genetic link. They related to the telomeres and sequenced the gene.

The familial IPF studies showed 10% had a mutated gene but all familial IPF patients had short telomeres. Very, very few people are diagnosed with IPF under the age of 50. It happens when the telomeres have become shorter and shorter.

The next study was with non-familial IPF also had short telomeres. We actually saw staining on lab slides of lung tissue and were able to see the telomeres. How is it measured? With a blood test. The shorter the telomeres, the more advanced the lung disease.

Short telomeres + time = lung fibrosis

Mom and Dad both contribute to a child. One may have shorter telomeres. That one is the weakest link. It is passed on to the next generation. The following generations will get even shorter telomeres until finally, the two shortest chromosomes drive the process. Families with mutations can develop different forms depending on age, health and environments. He also mentioned that they feel that IPF may in fact be caused by an exposure to a dusty working environment…

Someone asked Dr. Wolters his goal as a researcher. He said that he is trying to understand the disease and trying to find a way to slow it down. He mentioned that cirrhosis of the liver also related to IPF in their research.

Stem cells are a whole other ballgame. They are in us; we can culture them in a dish. Many tissues and organs have stem cells. Stem cell failure leads to the inability of lungs to heal and for fibrosis to occur.

To engineer new lungs in a rat, researchers observe the epithelial cells in air sac; the air sacs sit on proteins in a matrix with a few fibroblasts and all rest on blood vessels. Researchers washed the lungs with a soap to get rid of the cells but kept the matrix of protein. It looked like a lung but it had no cells. They added epithelial cells into the air sacs and the lungs worked in a rat. The structure was the same. It grew and worked…only for 8 hours.

Through this process of washing lungs, they are taking human lungs, which are injured, wash and heal them for transplantation into people. “Lung in a Box.” They are reconditioning what were formerly non-transplantable lungs. The next step will be fixing the patients own matrix.

Dr. Wolters listed the following at the end:
Clinical studies are important especially those using biological samples from patients
Animal models are vital
IPF is a disease of the aging
Lungs likely have cells capable of cell renewal (stem cell)
Using stem cells to reengineer or treat lung disease is at the embryonic development phase.

Future:  Stem cell magic is a long way off for lung disease. What is happening right now is that drug companies are developing drugs to make the telomeres longer or try to stop them from becoming shorter. If the telomeres stay longer, aging is slowed and diseases are postponed.

I hope I was able to accurately relate what was presented.  Just when I thought I understood what happened to me and why I got this disease, I realized today there is oh so much more to learn.

Tuesday, May 14, 2013

ILD Support Group Meeting Today

I am going to the monthly Interstitial Lung Disease (ILD) Support Group at my university hospital this afternoon. Dr. Paul Walters (who I ran into last week at the lecture) will be talking about the genetics of interstitial lung disease (telomeres), biomarkers and stem cells in lung disease. This is a subject I know nothing about. It is going to be a high learning curve. I am sure he will break the information down to a level for us to understand so I will be able to report back tomorrow.

Yesterday, I drove mom past the shop where Michael is now working. She was shocked how large it was and that the center of their front parking lot was filled with huge, white, blooming rose bushes. She was also shocked how far he has to walk between the shop and the paint shop many times a day. Lots of exercise. Lots of weight loss!

Michael had a minor screw up at work yesterday and asked if I would make a couple of baking dishes of baklava today. The owners of the business are Persian, we have talked food (I actually make one of their very traditional lamb recipes) and Michael has been bragging about my baklava. So, this morning I will buy the walnuts, butter, honey and phyllo to make it when I get home this afternoon.

We have been invited to my sister's house for a pool party in June. Her husband's family will also be there, they are really nice people and my sister lives in an area where it will be hot! So looking forward to it! I now have to decide what food to bring to share.

I promise to take lots of notes at today's meeting.

Monday, May 13, 2013

Post Mother's Day Wrap Up

Perfect weather. Perfect food. Lots of stories and lots of laughter. It was a very nice Mother's Day. Mom looked spectacular, Michael wore his cranberry 501 Levi's with a dress shirt tucked it and my Christmas dress never fit better. All in all, we felt fantastic.

We took mom to a French restaurant where we began the meal with muscles. Delicious muscles. Mom ate a skirt steak with pomme frites, Michael has a Croque Madam and I had a Salad Niscoise with seared tuna. Mom was in heaven. This is a woman who does not eat much beef and NEVER eats French fries. Apparently, the fries were an exact replica to the ones served when she was in high school in the 1940s when she would walk miles to Cooley's Cupboard in Evanston for an order of fries. She couldn't stop eating them yesterday. It was fun to watch! She said it made her feel like a teenager again.

On the way home afterwards, we decided to crash a Mother's Day dinner party we had been invited to but had to decline. I told Michael I wanted to just stay for a few minutes but we had so much fun, we stayed three hours! We were so full from the late lunch that we did not eat anything but had so much fun talking. Jim is trying to lose weight with the Atkin's-tpye diet and for the first time, the weight loss showed. He is large but I'll bet he has lost probably 40 to 50 pounds. We talked food and recipes and rewards. I used clothing and shoes as a reward. I tried to encourage him not to use food as the reward for weight loss. Their two teen-aged granddaughters were there and I spent so much time with them. Really great young women. One was home from college for the summer, the other is going into her senior year of high school.

William phoned to wish me a Happy Mother's Day. His wrenched neck is better and he is ready to begin the next leg of the tour on Wednesday with a week in Europe followed by three weeks through the US. There is talk about extending the tour as all the concerts are sold out.

A very nice day. I hope everyone had a Happy Mother's Day!

Sunday, May 12, 2013

Love to Mothers

Happy Mother's Day! Michael will phone his mother this morning, we will expect a phone call later today from our son and we will be spending the afternoon with my mom. There is a lovely French restaurant featuring their normal menu with waiters in long white aprons and fantastic art of the walls in Menlo Park near Stanford. We are not buffet or brunch people. We have 2:00 reservations with my mom. It should be fun. The weather will be warm, the majority of brunch loving families will be gone and I am sure she and Michael will clink cocktails together. Guess who is driving home?

It is pre-dawn and we are up watching the Formula 1 race live from Spain. It's all about the tires today!

Yesterday, after completing my yard work, I drove into town to see the small group performances in four venues. They were a thank you to the community for 30 years of the local orchestra as well as advertising next week's concert. The Bluegrass violin/guitar group featuring my neighbor was so much fun to watch. A group of people gathered and there was a lot of toe tapping. They were followed by Scottish Fiddlers in full garb. Professionals. Former members of the orchestra and one of the founders. I walked to another venue inside a fancy restaurant to watch a violin, cello and piano trio, which was so excellent that people trying to eat lunch just didn't! They were too busy listening! Then I walked four long blocks to an inner courtyard to hear a flute/oboe duet followed by a solo violinist then a violin duet.

It was a lovely way to spend two hours on a Saturday afternoon.

I so hope wonderful memories of your mother come to the forefront during the day. Happy Mother's Day!

Saturday, May 11, 2013


The Formula 1 race from Spain is tomorrow with qualifying today. We are watching the DVR of qualifying right now. Michael has picked Lewis Hamilton to win the race but I don't know if I agree. We'll see tomorrow.

Quickly this morning, I am going to bank and to pick up a couple things at Safeway before spending the rest of the morning working in the yards. My little orchestra is featuring concerts today in five venues to thank the community for 30 years of support and advertising the concert next Saturday. Half of the venues are outside so people will see and hear them as they stroll by. So, this afternoon, I may head into town to see some Scottish Fiddlers or a harp/cello duet or a clarinet duo. There are 21 small groups playing over a four hours period.

Michael and I sat out on the new swing last night, lit the fire pot and talked for well over an hour. His work is going well, he finds it very interesting and has been very busy, which he likes. We watched the rest of the Giant's game, which they won. Today, Michael is going to put a new windshield in mom's car and will deliver it to her late this afternoon. She will be very happy to have a nice, new windshield.

Friday, May 10, 2013

Liver Biopsy Info, Possible IPF Cause and a HP Lecture All in a Day

The drive into the city for my liver appointment was beautiful and very simple. No traffic. A delight. It was a pleasure to greet my liver doctor, we always hug!, he shared that he just closed on his first house near my mom, we laughed at how broke he feels!, then we got down to business.

The numbers looked pretty good. He wanted to do tests for the pressure in my liver and also a biopsy. He could do a needle biopsy but it is very close to my damaged lung. Having never hit a lung before, he really doesn't want to go near mine. So, we are talking about having a transjugular liver biopsy. Yes, it is what it sounds like: They run the equipment through my jugular vein down into the liver to take a sample. There is very little chance of bleeding. Very safe. YIKES! It would be done under sedation but I would not be intubated. No way would my lung doctor allow me to be intubated unless it was an emergency. If intubated, I would have to be in ICU afterwards and I REALLY don't want to be in ICU again.

To check the pressure in my liver, they have discovered a correlation with a blood test for Hepatitis C Fibrosure. With that number, they are able to accurately predict the pressure. Interesting!

All this is because I still have a fatty liver and a slightly swollen pancreas caused by longterm prednisone use. So, I am arranging to have another sonogram to check the current status of both organs, see my lung doctor in August to get her approval for the liver biopsy then see the liver doctor in late August to set a date in September for the procedure.

I have been on the campus of my university hospital since 2004 yet I discovered an entirely new area yesterday. After the liver appointment, I tried to find the hall for the lecture given by Dr. Talmedge King, Jr. on Hypersensitivity Pneumonitis. Through the classroom area, I climbed a huge flight of stairs only to arrive at an outside grass square near the Nursing School. At that moment, Sally (the head of the ILD Support Group) arrived as well. We found the room, sat near the back and watched as it quickly filled with doctors, industrial hygienists, Occupational Disease Specialists, pathologists and my friend Marty from the ILD Group. While chatting, Sally shared with me that the very latest studies of IPF (Idiopathic Pulmonary Fibrosis) are suggesting that the disease may be caused by dust. So very interesting.

Dr. Talmedge was a funny and lively speaker as well a presenting a fascinating lecture about how to diagnose HP, what are the possible signs in the patient's history, how it needs to be treated and other facts. The far majority of cases are Farmer's Lung and Bird Fancier's Lung. Farmers and people who have birds in their house. The farmers have to quit farming and the bird owners must give up their birds, which is often very difficult and some refuse.

I also learned that I need to get rid of all my house plants. It is the soil....

The last question for Dr. King was from a woman several row ahead of me. She was the daughter of a woman who had HP, got it from visiting her daughter house as she had a bird. He told her she has to have her entire HVAC system cleaned, her ducts from her dryer and her entire house scrubbed professionally and still it may not remove all of the antigens from the bird.

After the lecture, they passed by, I smiled and mentioned that I also had HP. Mother and daughter stopped to talk. Marty spotted us and join in. We stood for an hour sharing information as they are in the early crisis stage of their journey. We highly encouraged her to join a rehab program and to join the ILD Support Group.

Marty looked fantastic and has begun his march towards transplants. The tests have been concluded, he passed them all and now he waits for the next stage of being listed. We both said our goodbyes to the mom and daughter and took off in search of an elevator as Marty is on high levels of oxygen and did not want to do the stairs. We found one, was high jacked to the upper floors, took another as that elevator only went to our original floor, found one, went down, arrived at a hallway of old refrigerators and no humans. Kind of creepy. All the while, Marty is almost out of oxygen. We finally went back up a floor, found a person who walked us back to the original staircase where we began. We quickly said our goodbyes so he could get to another tank of oxygen in his car.

It was an easy ride home, I fought to stay awake so I could sleep well last night, had a dinner of Five-Spiced Chinese Pork with Asian Slaw for dinner and fell into bed and a deep sleep by 8:00.

A nice, interesting day.

Today, I am going to the other rehab to workout then spending the day with mom. Michael is going to drop off her old car and nab her new car on his way home tonight. We have arranged to have a new windshield on her new Mini Cooper installed tomorrow. It has a big scrape right where she looks out and it bugs her.

Tonight, we are planning to sit in the yard, listen to the CD of band who is on tour with William and talk. We also are going to take the 1966 Mustang out for a run sometime this weekend. Oh, and Mother's Day on Sunday. What a weekend ahead!

Thursday, May 9, 2013

And the Fun Continues!

Did I mention that I have skin cancer? It was a small red thing that did not bleed or heal just two inches south of my collarbone. I had it removed by the local doctor on April 17th and had the stitches removed on the 26th. At that time, the doctor told me that it was a basil cell carcinoma, which is a slow growing skin cancer due to sun exposure.

I am old. We did not know about sun screen when we were young. I was raised in the Mid-West where we spent the hot summers in shorts and sleeveless shirts. I had major sunburns every summer.

The local doc sent the biopsy report to my university hospital as she did not get it all and now won't touch it. It needs a specialist. After waiting to hear from the hospital, I phone them this week. What a mess. They won't even talk to me without having their people read the biopsy slides.

Back to my local doctor. They don't actually have the slides, just the report from the company where they sent it to be read. Paperwork is involved. Paperwork to requisition the slides had to be sent from the local doctor to the current owners of the slides but not before it goes to the university hospital to make sure someone there will pay for its shipping. More time. More paperwork.

I was told that it would take two to three weeks for the slides to be read and reviewed at the university hospital. Then, and only then, will I get a consultation appointment and at that time, I will be allowed to make an appointment to have the rest of it removed. Can you feel my frustrations?

Did I mention that I have cancer?

Today? The meeting with the liver doctor is this morning. I am nervous. I know he is going to want to arrange a liver biopsy. After that meeting, I was invited to a lecture on my specific ILD giving by a very respected pulmonologist. There will be a reception following the one hour talk as part of a lecture series.

I could not settle in last night after the orchestra rehearsal. Gerry, the other bass player, and I played well, chatted and realized that we both were dealing with frustrations for the past two days. We started to laugh when we chalked it up to being Scorpios. It is in the stars. I sure hope this trend passes soon!

It was well past 11PM before I finally fell asleep and woke up at 4AM. It is going to be a long day with a major drive to and from the appointment and lecture.

Wednesday, May 8, 2013


I feel like I was running into huge blocks all day long. Frustration abounded. Snafus all around! Issues? Cancer, broken liquid oxygen container, small Levi's, gas leaking from the car, major road work right where I needed to go, Mother's Day book not on sale anymore and Starbucks.

It was a long day.

Broken release button
Last Thursday, my oxygen supplier was here on their normal every other week routine to fill up the large holder from which I fill the portable backpack for rehab and yard work. I noticed something was wrong when we wheeled it in that evening. The entire top was loose. It was then that I spotted a screw that was to keep the cover in place and the plastic was broken around it to leave the screw totally up and exposed. No problem except it was inside the area where I fill the portable for the backpack. The end of the portable was metal. The screw was metal. If I were to hit the bottom and the screw together, it could cause a spark. That, plus very flammable liquid oxygen, could be a disaster. Very dangerous. Also, the entire top was cracked and broken including a piece that removes the portable after filling. It was a mess.

So, I tried to phone Apria before I left in the morning. I waited on hold for 20 minutes. I finally just left.

I went into town to buy a Mother's Day card and a Starbucks gift card for mom. When approaching Starbucks, a woman saw me and ran to the door to get in line ahead of me. She had a large complicated order. I just wanted a gift card. I took a deep breath. Finally, got it, returned to the car and noticed a pool of liquid near the back of the car. Smelled like gas. Yikes! Inside the car smelled like gas. I headed over the pass with all the windows down.

When we bought Michael's Levi's on the weekend, we thought he had lost enough weight to go down a size. Wrong. We bought three shirts to got with the cranberry and light turquoise 501s so I just wanted to replace them with the correct size. NONE AVAILABLE. I searched for some help and finally found someone who suggested that I order the correct size to be delivered to my house. Perfect! They should arrive in 3-5 days. Back to the car, there was a bit of gas. Off to the bookstore.

Maeve Binchy's latest for mom was on sale when we were at Barnes and Noble last week. Nope. Sorry. Buy one get one half price. I put it back. Back to the car. No gas drips.

On the way to the rehab class, I had to swing by a framing store to pick up a painting that mom had matted. The entire 4-lane street was reduced to one lane. It was a mess. Parked, ran in, grabbed it and off to rehab.

While eating lunch in the car, I phone the local doctor to see if they had sent the biopsy slides to my university hospital. They wanted the FAX number so I promised to phone them back with the information after I got home from rehab.

Then I phone Apria again. The woman argued with me that my normal delivery was this Thursday. No, for the past eight years, it has been every two weeks. It was just refilled last Thursday. No, she argued, it showed that they were coming again Thursday. I told her the problem with the broken container, she said she would fill out the form. Nothing else. I asked for a new container to be delivered during my normal refill schedule. I said to her that I didn't have confidence that: 1. they would not come on Thursday and 2. they would bring a new container with them in two weeks. I was right on both counts.

No gas smell. After rehab class, the car seemed just fine. I went by the local organic market for a few things for tonight then home. I phoned the FAX number to my local doctor so they could send my biopsy slides. I will phone the university's dermatology department today to try to get an appointment to finally have the cancer removed.

Exposed metal screw
Then the phone rang. It was a robo call from Apria with a message that they would be at my home for my normal delivery on Thursday. NOOOOOOO! It was from the main headquarters! I had a number! Someone might listen to me! I quickly returned the call and spilled my guts to my new friend Adam.

He got it. He told me he would return my call. Within minutes, he did. He changed my files to reflect the every two week delivery and contacted my local branch to arrange a new liquid oxygen container to be delivered this Thursday. He said it was too dangerous to wait another week.

The other news is that when Michael got home, he tore apart the trunk to access the gas tank and found that one of the something for the something had moved and the overflow was what was leaking...I really didn't understand it other than it was fixed. He drove it to work this morning just to be sure it is fine.

And did I mention that the Giant's lost last night?

Tuesday, May 7, 2013


I am so irritated. I spent time on the phone with my university hospital's dermatology/surgery clinics yesterday. They had not contacted me to make an appointment for the removal of the last of the basil cell carcinoma so I phoned them. First, they denied there was a referral. Oops! Found referral. They then said they were waiting for ME to call them. It has been a month since they received the referral.

When finally speaking with the surgery side of the clinic, she said that they have not received the biopsy slides, which would have to be reviewed by their pathologists. It would be 2 -3 weeks before I could get an appointment to remove the rest of the cancer. YIKES! I'm sitting here with cancer at least another 2 - 3 weeks! I replied that I would try to have the local doctor do it then I made an appointment to have the general dermatology department check to look for any more cancer.

Sooooo, I phoned the local doctor who said it needed a specialist and she would not do it. Her office is checking to see if the slides have been sent to the university hospital or not. They will contact me sometime today. Now, with that information, I will have to start all over again to try to make an appointment for the damn cancer to be removed! No one seems to be in any big hurry!

I am going to shop for Mother's Day before the rehab class this morning. We are taking mom to a late lunch on Sunday to a wonderful French restaurant in Menlo Park (near Palo Alto). Today, I am buying the latest and final book written by one of her favorite authors Maeve Binchy who died just 10 days after submitting the final draft to her publisher. Since she loves her Tall Extra Hot Non-Fat Chai with Sprinkles at Starbucks, we will include a gift card and confirmation of the subscription renewal of the large print Reader's Digest in her Mother's Day card. 

Last Sunday, we surprised Michael's mother, Mary by telling her that we are flying her and her sister Patty for a three day celebration on her 80th birthday in July. Mary cried. We are keeping all of our plans a secret but it will be guaranteed fun. 

Monday, May 6, 2013

Short of Breath? See a Doctor!

I went to work out at the other rehab yesterday.

Returning again this morning.

My breathing is so much better, the saturation rate is holding steady during the workout, I am not coughing on exertion, my thighs feel tighter (!), it has been fun to connect with everyone and I just feel better for having done it.

A woman, who I have gotten to know but haven't seen in a while, was working out on a bike when I arrived yesterday and we had a quick chat. She had just been diagnosed, via a needle biopsy, with fungus in her lungs. Very scary. Difficult to rid. Her doctor, who is very good and treats a lot of the people in my pulmonary rehab class, is treating her with antibiotics for 18 months with the hope of knocking it down before having to expose her to the anti-fungal drugs. They are brutal. I think that they are even harder on the body than prednisone. One of the women in my rehab class has been treated by these drugs for several years with no improvement. The fungus continues to grow. She continues to deplete.

Yesterday, I asked the woman about her symptoms and she replied that she was just short of breath. Nothing else.

Shortness of breath. It is a symptom of a problem with the heart or the lungs. One or the other. Or both! It is such a little symptom, which I ignored as I was overweight and thought that I was out of shape. I didn't see a doctor. Such a minor symptom. Then came the cough. The dry, hacking cough that grew until it sounded like I was coughing my brains out.

A cough. Shortness of breath.

By the time I saw a doctor, it was the summer of 2004. According to the big doctors at my university hospital where I was finally diagnosed via lung biopsy, I have had my ILD since late 2002. By the time I had my first Pulmonary Function Test, my DLCO was 7.7. As one doctor told me, I arrived so ill that there was not a whole lot they could do for me. Hypersensitivity Pneumonitis is a curable ILD if caught early. When removed from the antigen, the lungs heal. By the time I was diagnosed, the lungs were permanently damaged.

Simple symptoms. A bad diagnosis. A fatal diagnosis.

Know someone with these symptoms? Get them to a doctor!

Sunday, May 5, 2013

Come Drive with Me!

It was sunny while I was working in the garden yesterday and just when I was finishing up, the fog blew in along with the winds. Again. It was windy all night. I couldn't believe it. This morning, I will be back picking up small twigs from the birch trees and the Camellia blossoms that have been blown all over the yard.

Around 5PM, we drove over the packed-full-of-tourists pass to the Avenue for dinner then put the top down on the car and drove home. We took my favorite way home. I made Michael promise that when I am close to death, I want him to throw me in the car and let me die on this road as it is as close to heaven on earth that I have found. It begins passing a little market and one of the most famous restaurants in the entire silicon valley because of all the deals made under its roof. It winds past huge mansions with endless horse fences. The rich and famous. After a bit, it begins an uphill that offers spectacular views of the entire Bay Area until finally it winds under a canopy of huge redwood trees. At the top, funky restaurants offer food and drinks to the hundreds of motorcycle riders who may take this road but most arrive riding the north/south ridge. It now continues straight to the other side of the mountain for the downhill. It still is a very curvy road, again through the massive redwood trees, steep cliffs off to the side, strange small almost cabins-like houses all built near a stream of water that runs through the canyon. As we descend, the land suddenly opens to reveal barns, rolling hills and larger homesteads mostly built in the 30s and 40s, there is a huge horse farm which features many horse show events yet still the road is very curvy. The air changes on our faces as the coolness from the far ocean is first felt and then smelled. The road runs through a wide canyon surrounded by hills of larger homesteads and vast open land. After passing an old market featuring everything from camping equipment to French milled soap to a full bar, it ends at the ocean. Yesterday, we listened to the Giant's baseball game during the drive home but usually we listen to soft jazz or something very quiet.

When we got home, Michael cleaned out his car as we are giving it to a mechanic friend. It needs a lot of work and is going to need two catalytic converters - very expensive. This is the car that William gave to us when he bought his new car. We have driven it on two cross country trips and Michael has used it as a pickup truck through the years but most importantly, it is the car I have been using to haul my string bass. It has been a good car.

I am going over the pass with him this morning to work out at the other rehab then we are going buy another pair of jeans and a shirt to wear to work.

So we begin another week. Food shopping tomorrow after working out at the other rehab and mom has a list of things to do. Thursday is the day I meet with the liver doctor followed by the one-hour lecture about my specific ILD that I was invited to attend. I am looking forward to talking with a few of the doctors during the refreshments afterwards. It should be an interesting week.

Saturday, May 4, 2013

Exciting Times

I worked out at the other rehab yesterday. Due to mom's doctor appointments the last three weeks, I really have not put in my time. It felt fantastic, I did not cough at all and felt renewed afterwards. Michael needs to do some work on Sunday so I am going over the pass with him to work out again. I must get my thighs back!

There is a little store near mom which sells donated items with the proceeds going to the local Humane Society. Mom had read an article in the free local paper about a 91-year old woman who was a long-time volunteer there and she wanted to meet her. Alas, she was not working yesterday but we both bought some books and other items. I bought this bowl for $8.00.

Mom always says that we run into someone I know everywhere we go. We went to AAA to add collision to her insurance policy, waited while a woman finished with the agent and when she walked towards us I said, "You look so familiar to me. Did you graduate from high school in 1971?" She replied with my maiden name. It was her. She looked the same, had two daughters in the 20s but she clearly had an alcohol or drug issue. Then, after we had lunch on the Avenue and were walking back to the car, I ran into former parents from the school where I got sick. I loved their daughter. She was profoundly gifted, was able to get into the school in third grade and fell in love. It was a perfect school for her. She was no longer the problem students nor the smartest one in the class and she felt normal for the first time ever. She graduated from Stanford and is doing some post graduate work in Vail. I love to hear about the children who graduated from the school and what they are doing in their lives. There are no accountants! It was such a creative environment and the students were encourage to be in charge of their own learning as a life long challenge, that they are afraid of nothing, not even failing.

Michael arrived home after a busy and very hot day at work. He fired up the BBQ, cooked the Rib Eye Steak on the bone to perfection and I served it with sliced sauteed mushrooms and cole slaw. Afterwards, we sat on the new swing in the garden while he had his Friday night bourbon and talked non-stop. There was so much. He talked about his relationship with several of the workers, how he has carved out a routine that is working well, how he has been dealing with the customers and he was just full of stories from the week. The owners of the business revealed their plans for him. It is huge, waaaay out of his comfort zone but I believe he would be able to do it well. Michael told them he did not have the needed computer skills, which they dismissed as no problem. I told him that they could hire people to help fill in his holes but what they couldn't easily hire was his experience. It is invaluable. They adore him.

It is an exciting time for us. He is finishing some work for other friends then planning to spend the future weekends with just me to recoup from the busy week. He loves our Friday nights, we are going to drive down the coast in the convertible tonight, grab a light dinner somewhere and he wants to spend as much time with me on Sunday as possible. I am so proud of him doing so well as a manager, which he has avoided all of his working life.

Friday, May 3, 2013

The Quiet Before the Storm

One more warm, sunny day on the coast before it all changes tomorrow. It is our last chance to fire up the BBQ tonight, watch the sunset and enjoy the rib eye steak I bought earlier in the week. I have a feeling there will be a shot of bourbon over lots of ice in Michael's future!

My thighs are growing! I have missed so many days in the gym with all of mom's doctor appointments that I think their definition is waining! I must recommit to hitting the gym before her appointments, if at all possible.

We have a quiet weekend ahead but it will be the last moment of peace for a few weeks. The upcoming schedule is crazy and I am trying not to panic. Lots of doctor's appointments and a surgery for mom, doctor appointments for me, a lecture at the hospital, a mammogram, dentist checkup and cleaning, my orchestra concert and dress rehearsal, Mother's Day celebration, arranging a new windshield for mom's new car and hosting a birthday dinner out at the East German restaurant with Rick and Natalie. All within the next three weeks. Life is not boring!

This morning, mom has her final meeting with hunky Dr. M, her foot doctor. Her foot has healed but she has a bit of pain once in a while from the original bunion now.

For me, I am so looking forward to tomorrow and working in the garden. The winds did a bit of damage again and a few bushes need trimming. We are even planning to take the Mustang out for a cruise down the coast. The quiet before the storm!

Thursday, May 2, 2013

Smells of Fire

I just stepped outside to roll the large container of liquid oxygen to the side of the house for a refill today. It smelled funny. Michael came out to give the air a sniff and noticed a haze to the east. It was really windy and it smelled like a fire.


The winds shifted during the night and the hot air from the inland valleys is now blowing onto us on the coast. The poor people in Napa County, about 100 miles north of us, have been dealing with fires for several days. They are expected to be fully contained later today. Several of the major wineries were threatened. It is amazing that we are smelling it here.

The smell will probably be very pronounced on the other side of the pass when I leave for the rehab class in two hours. This could be bad. When it is smoggy, hot, muggy or with the smells of fire, all of our saturation rates drop like rocks at rehab. I have to bring some tax papers to mom or I would cancel the class. If I were to predict, I bet Sherman and I are going to be working out alone as everyone else will stay in their houses with the windows shut.

The rehearsals for the upcoming orchestra concert went well last night. It is not ready, it may never be ready, but Gerry (the other female bass player) and I are almost there. A couple more passes and we will have it. It is just a little local orchestra, not the big fancy one with whom I used to play. I always feel relieved after a concert but there is not the satisfaction of a well done performance that I would always feel with the other group. But Michael reminds me that I am playing, which is rather a miracle in itself. I had given up performing as I just didn't have the stamina to haul the string bass into the venue, stand to play it during rehearsals and stay out late one night a week.

William leaves on tour for a week in Europe, has one day off then a three week tour of the US. He pulled a muscle in his neck during the last leg of the tour so he has been taking it easy to allow it to heal during the last three week time off. We will phone him before he leaves as it is a ritual that we connect before a tour.

I chatted with Betty a couple of hours yesterday. She has recovered from her burst appendix but my brother Chip is still dealing with pain from his broken foot. He is seeing yet another doctor. It was 91 degrees in New Mexico but they were expecting a hard frost last night. She said that they would probably have to replant their tomatoes for a third time! Just weird weather.

Michael's sister Anna wrote yesterday that she is dealing with depression from the death of their younger brother. I am going to phone her tomorrow and encourage her to get a bit of help. It's hard.

I just heard on the news that the winds here are expected to shift this afternoon, temperature will cool and the smells of a fire will disappear. I just need to get through the next few hours.

Wednesday, May 1, 2013


May 1st. Summer is coming. When I was working at the school where I got sick, I hated May. It was so long, it was the month of culminations and written evaluations, it was about budgets both the current and the next year, it was about endless meetings and when every other teachers began winding down, I was in charge of the graduation ceremonies. It was a mad dash to the bitter end. It used to take until July 4th for me to begin to relax. Every July was wonderful but the beginning of every August began the ramping up to the start date, which used to begin a week before school then changed to two weeks then two and a half weeks. I hear the staff goes back to work the second week of August now. Too soon!

May for me now? Warm days and cool nights. The garden is in bloom. No stress or pressure anymore. When I met Natalie for a walk last week, her wild end-of-year schedules so reminded me of those times and I could hear her stress. At least I only had one school to deal with, she has three! She was definitely feeling so overwhelmed.

As it is Wednesday, it is yoga hell class this morning and orchestra rehearsal this evening. The hours in between will be filled with reading while swinging in the garden and a nap. A quiet day.

Pause today. Enjoy a moment of May. Of Spring.