I have written about our friend Barbara many times. She went to high school with Michael, married one of his friends, they moved to Northern California after he did and we all just continued down life's path. She had her first son, wanted to stay home so she began a daycare. My niece Shelley was her first baby. They had another son and Shelley was with her for many years. Barbara's daycare is the one mom and I hang out with during the summers. She is a calm, talented, smart, thoughtful, amazing person. Shelley was blessed to have had her in her life.
Barbara's mom had a stroke a few weeks ago. It was a very scary time. But suddenly, she was awake, she was complaining that they wouldn't let her smoke, there were glimpses of her old self that came more and more often and pretty soon, she was sent to a rehab center. She hated it. She worked hard to get to her new assisted living apartment on April 4.
She was doing great until Barbara noticed that she was not well. She was hospitalized with pneumonia on the 20 but she returned to her apartment last Tuesday on hospice care. Sadly, she passed away on Sunday, April 27.
What I think is so wonderful is that her mom survived the stroke and was recovered enough to say her goodbyes. What a gift to her children and grandchildren.
As I walk this path, that is the one thing I am so grateful for: time. It is a long goodbye. Sometimes I think a quick death is easier on the person dying but harder on the family. It is so sudden. Things are left unsaid. This long goodbye allows time to make sure that everything that needs to be said is said. Everything is settled.
To live this way is very freeing. But after all, aren't we all dying, in a sense? It is sad that it takes a bad diagnosis to live better. To live making sure that all the relationships are fine.
Our deepest sympathies for the loss of Margie to Barbara, Michael, Brian, Barbara's brother and John.
Wednesday, April 30, 2014
Tuesday, April 29, 2014
Final Day with Mom Before the Trip
It was my chance to show mom our very old rhododendron in full bloom. I was even able to snap the photo above! Today, I am going to fertilizer the other rhododendrons and water the pots. It is going to be close to 80 degrees.
After our tour of the garden, we drove down the coast. The ocean was magnificent and there were no tourists on the highway. I wanted to treat mom to our final lunch together before the roadtrip, so we went to our favorite dive where Michael and I ate dinner Friday night. He had mentioned that my mom would love their crab sandwich as it is small but perfect. They grill one side of the very thinly sliced bread and not mess up the crab with a lot of other ingredients. We had an artichoke and I had a small bay shrimp salad. We sat at the counter, chatted with others around us, had fun with the waitress and phoned Michael. He had mentioned that he would like another piece of pie. To go. Which flavor? He asked for TWO pieces of olallieberry pie as he wanted his foodie friend at work to try it. We drove back up the coast to the Ritz to buy a gift for my friend in Raleigh, drove over the pass to Michael's work to drop off the pie for Thomas, paid the AT&T Mobile bill and made a quick run to Target before dropping mom off at her home. She sang "Happy Trail" to me as I drove off.
It was a long but fun day. I slept well last night!
I will not be going over the pass again this week. Today, I am paying the water bill in person, phoning the garbage company to pay their bill, buying something for a person we are visiting, getting my toenails painted and my eyebrows waxed. Too much information? Tomorrow will be jammed with hair appointments for both of us and a late doctor's appointment in the city. But for today, I am going to enjoy being home here on the coastside. I'll open up the house for the cool ocean air to clean it out and maybe even have time for a few chapters of a book out on the garden swing.
Monday, April 28, 2014
Magic Ointment
Because of being on prednisone for so many years, I have all the bad side effects including very thin skin. I bruise so easily and if wear a bracelet with a spring clasp, my skin sometimes gets caught and a beautiful blue mark appears. It lasts for days and days and is not attractive. I also have a problem if I even bump my hands or arms. I noticed all the other people in my rehab class have the same problem. Lots of nasty looking blue marks!I was whining about it to mom since I was dealing with two big blue spots on my right hand. She ran to her bathroom and returned with an ointment. Her bridge playing friend, who was an RN, had told her about this cream. She had an extra little tube, I used it and the blue marks disappeared! GONE! Quickly! I am now using it on my skin cancer scar!
It is called "Advanced Healing Ointment" for severely dry skin treatment and hers was the CVS brand.
The local weather this final week before the roadtrip is breaking records for heat. It is forecasted to be in the 80s here on the coast by mid-week before returning to our cool weather. Nice to give us a good send off. I have long lists of things to do including toenail painting, eyebrow waxing, both of us having our hair cut, weighing in with the doctor, seeing mom for the final time today, paying some final bills in person and so much more.
The thing that drives me nuts is that I think I have covered everything. Then, in the Saturday mail, I received a notice from the insurance company that the VIN number of the car we are driving on the roadtrip was incorrectly reported to them. That means that our proof of insurance has the wrong VIN listed. They had an "F" instead of an "S." So, I immediately emailed the correct VIN to the insurance company with a CC to our agent requesting a proof of insurance emailed to me us ASAP to take on the trip. It's always something!
Sunday, April 27, 2014
A Rainy Sunday
Michael just made a plate of food for his Sunday morning breakfast. He is having Breakfast Meatballs and Green Eggs and Ham hard-boiled eggs. Wait, here it goes! He LOVES the meatballs. Wait. He likes the eggs but says they would be great with a glass of wine or champagne. They are almost too rich for breakfast but delicious!
I was a whirling dervish yesterday from morning until mid-afternoon. Cooking, paperwork, filing and bookkeeping, washing and ironing vacation clothes before taking my book into the garden. It is raining this morning, which is sad. There is a major fundraiser for the local Senior Center featuring planes and fancy cars at the airport. People just don't bring their perfect show cars out in bad weather. The rains are supposed to stop by noon so hopefully, people will still come.
We looked at the 10-day forecast for our trip over the Rockies next weekend with great relief. Temperatures in the low 70s. No snow though maybe some rain on Sunday.
William has the day off tomorrow so we plan to phone to see how he is doing. I have been giggling thinking about him working with three women as he usually works with males. I know he really loved recording with two sisters a few years ago. They were excellent musicians and were able to articulate their likes and dislikes while listening to the playbacks. He worked for a group of a male and female a year before she became a really famous TV star. She trusted him and it was a fun tour. So, this is really the first time he has three female bosses. My bet is that he is doing just fine, they love him and his work. Is that a mom talking?
I was a whirling dervish yesterday from morning until mid-afternoon. Cooking, paperwork, filing and bookkeeping, washing and ironing vacation clothes before taking my book into the garden. It is raining this morning, which is sad. There is a major fundraiser for the local Senior Center featuring planes and fancy cars at the airport. People just don't bring their perfect show cars out in bad weather. The rains are supposed to stop by noon so hopefully, people will still come.
We looked at the 10-day forecast for our trip over the Rockies next weekend with great relief. Temperatures in the low 70s. No snow though maybe some rain on Sunday.
William has the day off tomorrow so we plan to phone to see how he is doing. I have been giggling thinking about him working with three women as he usually works with males. I know he really loved recording with two sisters a few years ago. They were excellent musicians and were able to articulate their likes and dislikes while listening to the playbacks. He worked for a group of a male and female a year before she became a really famous TV star. She trusted him and it was a fun tour. So, this is really the first time he has three female bosses. My bet is that he is doing just fine, they love him and his work. Is that a mom talking?
Saturday, April 26, 2014
Olallieberry?!?
Next Saturday, we will be on the road. This week will focus on all the chores to get us on the road! But, I also am seeing the Weight Management doctor on Wednesday for my final weigh in before the trip.
Last night, Michael and I hopped into the Porsche for a run down the coast for dinner at our favorite dive. They had a special of steamed artichokes with a their aioli sauce. They grow them. Small. Juicy. Light. Delightful. Michael moaned when he bit into the best crab sandwich ever while I had four cooked oysters. But, the bread. Oh my. A freshly baked hunk of SF Sourdough at its very best. Yes, I had a small piece with the oysters. Heaven on earth. Michael finished with a piece of their famous Olallieberry pie (a la mode, of course!) and a cup of coffee. We give bottles of Olallieberry sauce as gifts to the people we visit on our road trips. Always a hit. Years ago, they used to also make Olallieberry Jam but they now use those berries for the pies. So, we also bought a few jars of Strawberry-Rhuberb and Strawberry Jam made from berries grown on their land.
What the heck is an Olallieberry? I found this quick explanation online:
Last night, Michael and I hopped into the Porsche for a run down the coast for dinner at our favorite dive. They had a special of steamed artichokes with a their aioli sauce. They grow them. Small. Juicy. Light. Delightful. Michael moaned when he bit into the best crab sandwich ever while I had four cooked oysters. But, the bread. Oh my. A freshly baked hunk of SF Sourdough at its very best. Yes, I had a small piece with the oysters. Heaven on earth. Michael finished with a piece of their famous Olallieberry pie (a la mode, of course!) and a cup of coffee. We give bottles of Olallieberry sauce as gifts to the people we visit on our road trips. Always a hit. Years ago, they used to also make Olallieberry Jam but they now use those berries for the pies. So, we also bought a few jars of Strawberry-Rhuberb and Strawberry Jam made from berries grown on their land.
What the heck is an Olallieberry? I found this quick explanation online:
This is our most frequently asked question!
What is an Olallieberry?
Genetically, it is approximately two-thirds Blackberry and one-third European Red Raspberry. The Olallieberry was developed in 1949 by the U.S. Department of Agriculture at Oregon State University by crossing a Loganberry with a Youngberry. While primarily developed in Oregon, it has never been very productive there and is primarily grown in California. Because the olallieberry has blackberry on both sides of its parentage, it exhibits many of the same flavor characteristics of the blackberry. However, olallieberries are much larger in size and generally are sweeter than blackberries grown under the same conditions.
How did the Olallieberry get its name?
“Olallie” is a word for berry that was used by Native Americans of the Pacific Northwest. So you’re actually saying “berry berry”!
How do you pronounce Olallieberry?
Say the “o” first and the rest will follow (oh-la-leh).
How do you spell it?
We have seen it spelled all sorts of ways – ollieberry, ollalieberry, olallie berry, lallieberry, olalliberry, ollaberry, olliberry, and even hallieberry! But it is o-l-a-l-l-i-e-b-e-r-r-y.
And, how does it taste?
It’s tart, sweet, juicy and delicious.
And we serve it up every morning in preserves, yogurt, and, on occasion, Olallieberry Stuffed French Toast!
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Friday, April 25, 2014
Recipes for the Week
The housekeepers came yesterday so packing for the trip will begin this afternoon and through the weekend. Washing, ironing and laying everything out on William's bed will happen all the way up to the moment we throw everything into suitcases next Friday. Michael has been counting down the days on the big calendar at work.
I did the final food shopping run after rehab yesterday so here is the menu for the week. Again, this is food that is processed properly for those of us on long-term prednisone therapy.
Breakfast:
Spinach Deviled Eggs with Crispy Prosciutto - http://www.healthyrecipeecstasy.com/2014/02/20/green-eggs-ham-spinach-deviled-eggs-with-crispy-prosciutto/
Breakfast Meatballs - I cut the recipe in half and use turkey sausage -
http://www.fatsecret.com/recipes/breakfast-meatballs/Default.aspx
Smoked Salmon Dip - I use low fat cream cheese and non-fat sour cream - http://www.foodnetwork.com/recipes/ina-garten/smoked-salmon-dip-recipe.print.html
Lunch:
Any of the above or a Salmon Wrap made with La Tortilla Low Carb tortilla, light cream cheese, red onions, smoked salmon, capers and greens.
Dinner:
Grilled Chicken Satay with a side salad for Michael - I use 2 boneless chicken breasts for 4 servings -
http://www.food.com/recipe/grilled-low-carb-chicken-satay-113639
Rack of Lamb and Sun-dried Tomato, Goat Cheese and Fresh Basil Frittata - http://www.health.com/health/recipe/0,,10000001657240,00.html
Pan Seared Fish with Shiitake Mushrooms (rice for Michael) - http://www.seriouseats.com/recipes/2013/01/pan-seared-fish-shiitake-mushroom-recipe.html?ref=search
Thursday, April 24, 2014
Sonogram, Saturation, Story
What a day yesterday! The drive to the city was truly spectacular! The tide was in, the waves were bigger than usual and there was very little traffic. After checking into the Radiology Department for the sonogram of my liver and other organs, I waited while looked through floor to ceiling windows to a view that is recognized throughout the world: the Golden Gate Bridge, Golden Gate Park, downtown high rises and a clear view all the way to the ocean. I was not bored.
The sonogram took about 30-minutes and the technician was new to the university from Philadelphia via Buffalo. We chatted throughout the procedure. Her husband was hired by Google so they took a deep breath and made the move. Afterwards, I went down to the lobby to eat my REV that I had in my purse (no food for 6 hours before the procedure so I was hungry by 3:30) then back up the elevator to wait in the Chest Faculty Clinic to see Dr. K. Rumor on the street was that she as not in the best of moods and I was her last appointment of the day. Oh my.
So, I checked in. They took my vitals and, for the first time in many years, my oxygen saturation level on room air was 100%. Amazing. Then, I had to be weighed. There it was. I finally broke through. I lost another pound and am now only three pounds away from where I want to be. I was, as of yesterday, the lightest I have been since 1989.
Then I waited. It was getting late. Most of the staff left. Finally, around 5:00, I saw Dr. K. She was smiling. It was a good sign. Her first words to me, "You lost a lot of weight." I told her that the two bouts of pneumonia had shaken me so my goal was to lose 10 pounds and kick up my exercise. But, I lost 22 pounds and feel fantastic. She was thrilled. I now have a 26.2 BMI. She, along with Michael and the Weight Management Group all feel that I am done. No more...
I told her about our roadtrip, confirmed some antibiotics to take with us and asked about some other drug issues. She looked at the results of the liver sonogram and said that my liver is still mildly fatty but not swollen. A good sign. She also recommended the transjugular biopsy that I have been nervous about and said she would also like piggyback on it with something to do with my heart. I will pass this along to the liver doctor when I see him next. They can have a conversation together.
She wrote the orders for a full set of PFTs and a HRCT after our trip. As I was walking out the door, she mentioned that she recommended me to be on the Patient Advisory Board at the university hospital. I was stunned. She is so highly regarded by her colleagues that I worry I won't live up to her recommendation!
Another thing happened yesterday while I was waiting to see Dr. K. The co-head of the ILD Clinic was walking through the waiting room to see a patient. We both stopped, hugged and quickly got caught up. She has a two-year old (she is an older mom) so we talked about the joys of young children. She was shocked at my weight loss, I told her the story about having pneumonia twice last year and she said that how I handled it made her day. She had a really rough day (I think she lost a patient) so she thanked me for telling her my story. If Dr. K. retires, I asked her years ago if she would take me on as her patient. We really have a nice relationship.
I finally arrived home within minutes of Michael. In the morning, I had made dinner so it was ready. So much to share that we talked the evening away.
The sonogram took about 30-minutes and the technician was new to the university from Philadelphia via Buffalo. We chatted throughout the procedure. Her husband was hired by Google so they took a deep breath and made the move. Afterwards, I went down to the lobby to eat my REV that I had in my purse (no food for 6 hours before the procedure so I was hungry by 3:30) then back up the elevator to wait in the Chest Faculty Clinic to see Dr. K. Rumor on the street was that she as not in the best of moods and I was her last appointment of the day. Oh my.
So, I checked in. They took my vitals and, for the first time in many years, my oxygen saturation level on room air was 100%. Amazing. Then, I had to be weighed. There it was. I finally broke through. I lost another pound and am now only three pounds away from where I want to be. I was, as of yesterday, the lightest I have been since 1989.
Then I waited. It was getting late. Most of the staff left. Finally, around 5:00, I saw Dr. K. She was smiling. It was a good sign. Her first words to me, "You lost a lot of weight." I told her that the two bouts of pneumonia had shaken me so my goal was to lose 10 pounds and kick up my exercise. But, I lost 22 pounds and feel fantastic. She was thrilled. I now have a 26.2 BMI. She, along with Michael and the Weight Management Group all feel that I am done. No more...
I told her about our roadtrip, confirmed some antibiotics to take with us and asked about some other drug issues. She looked at the results of the liver sonogram and said that my liver is still mildly fatty but not swollen. A good sign. She also recommended the transjugular biopsy that I have been nervous about and said she would also like piggyback on it with something to do with my heart. I will pass this along to the liver doctor when I see him next. They can have a conversation together.
She wrote the orders for a full set of PFTs and a HRCT after our trip. As I was walking out the door, she mentioned that she recommended me to be on the Patient Advisory Board at the university hospital. I was stunned. She is so highly regarded by her colleagues that I worry I won't live up to her recommendation!
Another thing happened yesterday while I was waiting to see Dr. K. The co-head of the ILD Clinic was walking through the waiting room to see a patient. We both stopped, hugged and quickly got caught up. She has a two-year old (she is an older mom) so we talked about the joys of young children. She was shocked at my weight loss, I told her the story about having pneumonia twice last year and she said that how I handled it made her day. She had a really rough day (I think she lost a patient) so she thanked me for telling her my story. If Dr. K. retires, I asked her years ago if she would take me on as her patient. We really have a nice relationship.
I finally arrived home within minutes of Michael. In the morning, I had made dinner so it was ready. So much to share that we talked the evening away.
Wednesday, April 23, 2014
Big Day
Craziness today. I have made a long list of things to do this morning then I will head into the city this afternoon for two appointments. The first one is a sonogram of my liver and the other is an appointment to see my lung doctor, Dr. K. I won't see her until 4:30. Late. She is rarely in a good mood when I see her that late during clinics. My guess is that she will want a quick VLC and DLCO. It will be interesting to see if either has improved since my weight loss. I wonder if she will even notice...
Since I won't get home until after Michael, I am making and plating dinner this morning: Pesto Chicken with Pasta Slim. Simple but good. Two separate Apria branches phoned yesterday with questions about my order of concentrators for the roadtrip, so I will be returning those calls first thing today. The housekeepers are due early Wednesday so I will pick up the house, bring in the vacuum and cleaning supplies and writing a check. My main goal is to deep clean the inside of our shower. Afterwards, I will enjoy a nice shower so I am clean for my appointments. A busy morning.
The good news is that I am still feeling great, my numbers in rehab yesterday were excellent and I slept for 10 hours last night. The drive into the city should be gorgeous: sunshine, no wind and high waves.
Since I won't get home until after Michael, I am making and plating dinner this morning: Pesto Chicken with Pasta Slim. Simple but good. Two separate Apria branches phoned yesterday with questions about my order of concentrators for the roadtrip, so I will be returning those calls first thing today. The housekeepers are due early Wednesday so I will pick up the house, bring in the vacuum and cleaning supplies and writing a check. My main goal is to deep clean the inside of our shower. Afterwards, I will enjoy a nice shower so I am clean for my appointments. A busy morning.
The good news is that I am still feeling great, my numbers in rehab yesterday were excellent and I slept for 10 hours last night. The drive into the city should be gorgeous: sunshine, no wind and high waves.
Tuesday, April 22, 2014
"When Tomorrow Starts Without Me"
Mom bought "Proof of Heaven" by Neurosurgeon Dr. Eben Alexander and highly suggested that I read it, too. He was in a coma and visited heaven so the book was about his experiences while in the coma and "coming back into his body."
When tomorrow starts without me,
And I'm not there to see,
If the sun should rise and find your eyes
All filled with tears for me;
I wish so much you wouldn't cry
The way you did today,
While thinking of the many things,
We didn't get to say.
I know how much you love me,
As much as I love you,
And each time that you think of me,
I know you'll miss me too;
But when tomorrow starts without me,
Please try to understand,
That an angel came and called my name,
And took me by the hand,
And said my place was ready,
In heaven far above,
And that I'd have to leave behind
All those I dearly love.
But as I turned to walk away,
A tear fell from my eye
For all my life, I'd always thought,
I didn't want to die.
I had so much to live for,
So much left yet to do,
It seemed almost impossible,
That I was leaving you.
I thought of all the yesterdays
The good ones and the bad,
I thought of all the love we shared,
And all the fun we had.
If I could re-live yesterday,
Just even for awhile,
I'd say good-bye and kiss you
And maybe see you smile.
But then I fully realized
That this could never be,
For emptiness and memories,
Would take the place of me.
And when I thought of worldly things
I might miss come tomorrow,
I thought of you, and when I did
My heart was filled with sorrow.
But when I walked through heaven's gates
I felt so much at home
When God looked down and smiled at me,
From His great golden throne.
He said, "This is eternity,
And all I've promised you.
Today your life on earth is past,
But here life starts anew.
I promise no tomorrow,
But today will always last,
And since each day's the same way,
There's no longing for the past.
You have been so faithful,
So trusting and so true.
Though there were times
You did some things
You knew you shouldn't do.
But you have been forgiven
And now at last you're free.
So won't you come and take my hand
And share my life with me?"
So when tomorrow starts without me,
Don't think we're far apart,
For every time you think of me,
I'm right here, in your heart.
While reading it, I was learning a lot. Suddenly, this poem was attached to a photo of his sister, who had died. It was written by David Romano in 1993. I began to read it and the tears just flowed. This is exactly what I want Michael to hear and take to heart after I die. I will be printing and placing it into an envelope with a note to be opened by Natalie (Winnie's mom) just before she reads it at my service.
When Tomorrow Starts Without Me
When tomorrow starts without me,
And I'm not there to see,
If the sun should rise and find your eyes
All filled with tears for me;
I wish so much you wouldn't cry
The way you did today,
While thinking of the many things,
We didn't get to say.
I know how much you love me,
As much as I love you,
And each time that you think of me,
I know you'll miss me too;
But when tomorrow starts without me,
Please try to understand,
That an angel came and called my name,
And took me by the hand,
And said my place was ready,
In heaven far above,
And that I'd have to leave behind
All those I dearly love.
But as I turned to walk away,
A tear fell from my eye
For all my life, I'd always thought,
I didn't want to die.
I had so much to live for,
So much left yet to do,
It seemed almost impossible,
That I was leaving you.
I thought of all the yesterdays
The good ones and the bad,
I thought of all the love we shared,
And all the fun we had.
If I could re-live yesterday,
Just even for awhile,
I'd say good-bye and kiss you
And maybe see you smile.
But then I fully realized
That this could never be,
For emptiness and memories,
Would take the place of me.
And when I thought of worldly things
I might miss come tomorrow,
I thought of you, and when I did
My heart was filled with sorrow.
But when I walked through heaven's gates
I felt so much at home
When God looked down and smiled at me,
From His great golden throne.
He said, "This is eternity,
And all I've promised you.
Today your life on earth is past,
But here life starts anew.
I promise no tomorrow,
But today will always last,
And since each day's the same way,
There's no longing for the past.
You have been so faithful,
So trusting and so true.
Though there were times
You did some things
You knew you shouldn't do.
But you have been forgiven
And now at last you're free.
So won't you come and take my hand
And share my life with me?"
So when tomorrow starts without me,
Don't think we're far apart,
For every time you think of me,
I'm right here, in your heart.
Monday, April 21, 2014
Easter Recap
Here we are at Easter Brunch yesterday. Michael and Mom are taking care of the Apple Crepes with a nice Caramel Sauce dessert. I think Michael was thinking about licking the plate. It was the perfect end to a nice meal. They each had a rotisserie roasted half of a small organic chicken with the most amazing roasted potatoes while I had a salad featuring the same chicken and other goodies on lightly dressed greens. Perfect! The restaurant was lovely and quiet enough to easily carry on a conversation. We drove home with one stop at Michael's favorite specialty liquor store to buy a gift for someone on our roadtrip. I am giving no hints here! Mom loved wandering this store with its choices of things like 60 different bitters and the fanciest of cocktail napkins and glassware. We hung out at her place for a bit before heading home. The weather was gorgeous, we enjoyed the evening together and now are ready to jump back into Monday!
When we got home, there was a holiday message from our son on the answering machine. He phoned again later and was in a panic. He had planned to take the summer off but at Coachella on Friday, a friend told him he had to be somewhere and asked if William could take over as head of sound for a two month US and European tour with his group. So, he was home for 48 hours before having to join them on the road. We quickly reviewed where he was going to be while we are on the road but soon realized that we were not going to be even close to each other. It would have been fun to meet up with him...but it sure was great to hear his voice. He also told me that he got a huge box via Fed Ex, opened it and was shocked that his other two gold and one platinum records came from the box. Apparently, the record company discounts the cost to the band if they are awarded so many years after achieved. So, he will be bringing them down to us to join his first gold record on our hallway wall. I think he feels they will be safer with us. I reminded him that he had promised my mom one of the gold records years ago so he is going to surprise her with one of them. All will be returned to him one day when he is ready for them.
I was able to snap some photos of the garden in the late afternoon yesterday. Happy Easter. Happy Spring.
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| Pompoms and Bottlebrush |
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| Front yard Annuals |
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| Front yard |
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| My 40+ year old Rhododendron with a younger one in the background |
Sunday, April 20, 2014
Easter Sundays
Easter Sunday. Growing up in the Chicago area, Spring was pure magic. After a Winter world of black and white, suddenly grass and bulbs would peek up out of the darkness. Colors would re-appear. Renewal. Life returning.
We would have new Easter outfits including hats, gloves, shoes and purses to wear to church. The Easter Bunny would come in the night to fill and hide our baskets. Lee and I always found ours easily but our younger brother Chip's took longer. There was one time I remember when he was heartbroken as he just could not find his basket. Lee and I were already popping jelly beans while he continued to search. He must have been 6 or 7 years old. Finally, we were all dress and ready to hop into the car to go to church when...there it was. In the backseat of the car. Nothing was sweeter than finding that basket before church. He was so very happy.
William also would need to search for his basket. The bunny even left little powdered paw prints down our wooden hallway. Proof of the Easter Bunny!
Today, we are seeing mom after she returns from Mass this morning for an Easter Brunch at a lovely place in Palo Alto. We will dress up, though not in our Easter Bonnets of the past. It will be nice to spend the time together and remember that Spring is proof that life continues. A fresh new start.
We would have new Easter outfits including hats, gloves, shoes and purses to wear to church. The Easter Bunny would come in the night to fill and hide our baskets. Lee and I always found ours easily but our younger brother Chip's took longer. There was one time I remember when he was heartbroken as he just could not find his basket. Lee and I were already popping jelly beans while he continued to search. He must have been 6 or 7 years old. Finally, we were all dress and ready to hop into the car to go to church when...there it was. In the backseat of the car. Nothing was sweeter than finding that basket before church. He was so very happy.
William also would need to search for his basket. The bunny even left little powdered paw prints down our wooden hallway. Proof of the Easter Bunny!
Today, we are seeing mom after she returns from Mass this morning for an Easter Brunch at a lovely place in Palo Alto. We will dress up, though not in our Easter Bonnets of the past. It will be nice to spend the time together and remember that Spring is proof that life continues. A fresh new start.
Saturday, April 19, 2014
A Normal Saturday
Saturdays. I love them. Michael takes off later than usual to work on his latest project, I run to the bank and gas up the car for the week, come back to the house then my day begins. I do the little things in the house before heading into the gardens. Hours and hours later, I am soaked in sweat, my muscles give me gentle reminders of my work, I strip off the dirty, wet clothing and hop into the shower. After I am cleaned up, I walk through the garden with a bottle of cold water and look at my work. Gardens are only perfect for a few minutes before the wind kicks up or leaves fall. Tonight, I need to cook dinner after all my yard work. I will bet that I am in bed early. It should be mentioned that when I am working in the garden, I am fully covered to protect my skin from the sun, wear my oxygen backpack, gloves and a mask to protect from the dirt spores.
There is a F1 race this weekend from China. It rained throughout qualifying, which we are watching right now. Rain is an equalizer. It if rains during the race tomorrow, it should be very interesting. The drama of the head of the Ferrari team retiring last week (or pushed out if you believe the gossip) because of the poor results so far, is front and center. They put the most money and pride into their team and are embarrassed by the poor results this season. The new head was just transferred from his position as head of Ferrari USA but has no racing background. The drama will continue.
I peeked ahead at my schedule next week and it is going to be ugly. There are four doctor appointments for both mom and me. It is also the last time I will go to rehab before the trip. The following week will be packed with other appointments and last minute chores before we leave. In my mind, the road equals freedom. Nothing to do but navigate and enjoy each other. I am so ready.
There is a F1 race this weekend from China. It rained throughout qualifying, which we are watching right now. Rain is an equalizer. It if rains during the race tomorrow, it should be very interesting. The drama of the head of the Ferrari team retiring last week (or pushed out if you believe the gossip) because of the poor results so far, is front and center. They put the most money and pride into their team and are embarrassed by the poor results this season. The new head was just transferred from his position as head of Ferrari USA but has no racing background. The drama will continue.
I peeked ahead at my schedule next week and it is going to be ugly. There are four doctor appointments for both mom and me. It is also the last time I will go to rehab before the trip. The following week will be packed with other appointments and last minute chores before we leave. In my mind, the road equals freedom. Nothing to do but navigate and enjoy each other. I am so ready.
Friday, April 18, 2014
Saturation Rates are Looking Good
Rehab class yesterday. Treadmill. Two liters of oxygen. Saturation rate. I usually desaturate on the treadmill and struggle to get it up to 92%. Sometimes I need to kick up the oxygen to three liters. But yesterday: 97%. Again. I still can't believe it.
I am breathing really well while I am running around in my daily life. I am not short of breath while taking a shower. Or making the bed. Or food shopping and hauling all the groceries into the house.
Since returning to real food after the liquid diet, we have eaten at home (except for lunches twice a week with mom and twice with friends) and I often wonder if my exposure to germs is lessened because of the rare exposure to other's food.
With all this good news comes a concern: I felt tickles in my nose last night. Coldcalm begins this morning. Michael mentioned that he either was beginning a cold or is having allergy issues due to the winds yesterday. We are fighting to stay well before the trip. I really need to be healthy when I see Dr. K. on the 23rd or she could call this whole thing off.
My thighs will once again enjoy a workout at the other rehab this morning before I spend the day with my mom. We have no plans and sometimes those days are the funnest. The gardens are bursting with blossoms and color and I will try to remember to take some photos this weekend.
Thursday, April 17, 2014
A Beautiful Day for a Disappointment
It was not what I expected. I climbing onto the scale and...one pound. I lost one pound. Disappointing. Mr. B. said, "You are doing really great. You are well past your goal. You are stable. This is it. This is where you should be." But of course, I always want another five pounds! Michael was really happy as he didn't want any more weight loss. It was my last appointment with Mr. B. before the roadtrip but I still am meeting with Dr. O the weight doctor right before the trip. Two week from today. Maybe, just maybe another couple of pounds lighter?!? We'll see.
The highlight of the day was the easy drive into the city. It was sunny and warm as I drove along the ocean cliffs with glorious views. It may be that everyone was out of town for Spring Break because traffic was very light the entire day. When I got home, I had a bit of lunch before I realized that I was tired. Sleepy. I thought I would just lay down for a few moments...turned into two hours. It felt great and I slept well again last night. I really must have needed the sleep.
Rehab class today! Sherman! Before class, I need to buy Mother's Day presents for mom since we will be on the road. Anna is organizing the siblings to chip in to buy Mary a nice new TV for her bedroom. Anna's son works at Best Buy while going to college so we can use his discount. Perfect. I will send a check for our portion to Anna this week.
My 7th grade neighbor Julie came over last night with her 7-year old assistant/sister to learn how and what to water in the garden while we are gone. Julie was three-years old when they moved in and here she was, almost as tall as Michael! She towered over me! They were both so very cute!
The highlight of the day was the easy drive into the city. It was sunny and warm as I drove along the ocean cliffs with glorious views. It may be that everyone was out of town for Spring Break because traffic was very light the entire day. When I got home, I had a bit of lunch before I realized that I was tired. Sleepy. I thought I would just lay down for a few moments...turned into two hours. It felt great and I slept well again last night. I really must have needed the sleep.
Rehab class today! Sherman! Before class, I need to buy Mother's Day presents for mom since we will be on the road. Anna is organizing the siblings to chip in to buy Mary a nice new TV for her bedroom. Anna's son works at Best Buy while going to college so we can use his discount. Perfect. I will send a check for our portion to Anna this week.
My 7th grade neighbor Julie came over last night with her 7-year old assistant/sister to learn how and what to water in the garden while we are gone. Julie was three-years old when they moved in and here she was, almost as tall as Michael! She towered over me! They were both so very cute!
Wednesday, April 16, 2014
Facing the Scale
I think we have a small leak in one of the plastic pipes connected to the backyard sprinklers. So this afternoon, I am going to move stones we use for drainage up against the house to see if the soil underneath is overly wet. This is the area where the four valves for the sprinklers live and we have had a leak in this area in the past. It is going to be a nasty job.
Yesterday's lunch with Natalie lasted four hours. We celebrated her birthday at the harbor eating the best, fresh fish. When I first hired her back in 2000, she posted a huge notice on the department's large wall calendar to announce her birthday. We made sure to celebrate it. Through the years, after two children, she is not so focused on it and was rather touched that I remembered it, hosted the lunch and even brought a present. We talked non-stop during lunch, then walked along the harbor to a nice coffee shop and talked about the business of a music program. She showed me what she had developed for next year, we tweaked it, I shared some administrative information that she found very helpful and my mind felt like it was empty when I got home. Her life is fun and busy. She loves her two jobs of developing and teaching a large music program and directing a private choir, her two fantastic kids and said a few things about her husband that made me smile. They are so happy and will be celebrating their 10th Anniversary this summer. Isn't that wonderful?
We are counting down the days to the road trip but are rather nervous about the weather on Highway 80 over the Rockies. This snow stuff must stop! I can't believe another storm is headed that way. Please, may we ask for no snow in two weeks? Our car doesn't do snow!
Tuesday, April 15, 2014
"Her"
One of us connected with our son yesterday. Michael phoned him and they talked about him. He didn't ask about the wedding, South America, the earthquake, the festival and many of the other bits of news I have been waiting to hear. Michael was smart. He never asked anything other than, "How are you?" And isn't that really the most important question?
He is tired. It has been a full year of touring and he said he needs a break. The current group is opening for a HUGE band in big arenas but he has decided to take the summer off. It actually is a good move for him. He needs to visit his favorite coffee shop, ride his bike 20 miles a day, cook amazing food for himself and reconnect with friends.
After my lunch today with Natalie, I will make my phone call to him. Hopefully, I will catch him. Often, we just leave a message. I will ask how he is doing then ask if he would like to join us on the roadtrip for a bit. I will try not to interrogate him about everything else.
While mom was in the booth testing her new hearing aids at Costco yesterday, I wandered the store. I found the bathing suits. Years ago, I bought a two piece set at Lands End. Black. Long top. Skirt bottom. Fine. Worked well. Looked nice. I tried on the suit last weekend and it was way too big. Almost every hotel on the roadtrip has a pool so we are packing bathing suits. While glancing through them at Costco, I noticed that they all had high cut legs, which is not a good look for me. Then it hit me: You already have the skirt bottom in black so just buy a black suit in the right size. Well $19.95 later, I am the proud owner of a new black suit with pretty white accents. I tried both pieces on last night and Michael gave me a thumbs up. But, what was kind of creepy was that the suits are sold on a plastic form of half of a woman's body. I threw "her" into the trunk and kept referring to "her" as a body in the trunk. When we opened it to pack the groceries, it was just plain creepy.
I got home, cooked a lot of food (Crack Slaw, Bacon and Eggs a Different Way, Chicken Mango Sausage for Michael) after I threw "her" on the bed. When Michael got home and settled into dinner, I asked if he had seen the woman on our bed. He looked at me as if I had finally gone around the bend. His response when I brought "her" out for his inspection? "Just creepy!" I laughed and told him that it was recyclable, too!
He is tired. It has been a full year of touring and he said he needs a break. The current group is opening for a HUGE band in big arenas but he has decided to take the summer off. It actually is a good move for him. He needs to visit his favorite coffee shop, ride his bike 20 miles a day, cook amazing food for himself and reconnect with friends.
After my lunch today with Natalie, I will make my phone call to him. Hopefully, I will catch him. Often, we just leave a message. I will ask how he is doing then ask if he would like to join us on the roadtrip for a bit. I will try not to interrogate him about everything else.
While mom was in the booth testing her new hearing aids at Costco yesterday, I wandered the store. I found the bathing suits. Years ago, I bought a two piece set at Lands End. Black. Long top. Skirt bottom. Fine. Worked well. Looked nice. I tried on the suit last weekend and it was way too big. Almost every hotel on the roadtrip has a pool so we are packing bathing suits. While glancing through them at Costco, I noticed that they all had high cut legs, which is not a good look for me. Then it hit me: You already have the skirt bottom in black so just buy a black suit in the right size. Well $19.95 later, I am the proud owner of a new black suit with pretty white accents. I tried both pieces on last night and Michael gave me a thumbs up. But, what was kind of creepy was that the suits are sold on a plastic form of half of a woman's body. I threw "her" into the trunk and kept referring to "her" as a body in the trunk. When we opened it to pack the groceries, it was just plain creepy.I got home, cooked a lot of food (Crack Slaw, Bacon and Eggs a Different Way, Chicken Mango Sausage for Michael) after I threw "her" on the bed. When Michael got home and settled into dinner, I asked if he had seen the woman on our bed. He looked at me as if I had finally gone around the bend. His response when I brought "her" out for his inspection? "Just creepy!" I laughed and told him that it was recyclable, too!
Monday, April 14, 2014
Sons vs Daughters
I got a peek of four-day old baby Cora while our neighbors took her out for a walk in the stroller for the very first time yesterday afternoon. What a sweetie. I hope to book lots of baby holding time.
It felt so good to work all weekend, I am feeling strong and breathing well. I had crazy high numbers at rehab on Thursday so everything is going well. I am looking forward to a fun week including a long lunch with Natalie (music programs and policies will be discussed) and my weigh-in with Mr. B. Today, mom will have her remote pacemaker test from her house then she will have her new hearing aids fitted at Costco. I so hope she likes them.
Sunday, April 13, 2014
Recipes for the Week
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| Bacon and Eggs in a Different Way |
Today, I am washing and ironing both guest room bedsheets and Michael's work shirts. It will be a lot of work. But for dinner tonight, we are having our first repeat recipe since I began the refeeding process from the diet. Michael's request: Chicken Shawarma - http://www.busyinbrooklyn.com/chicken-shawarma-recipe/
Here are the recipes for next week. Again, for those of us on prednisone therapy, it is important to stick with protein and non-starchy vegetables so we don't gain 50 pounds. Or more! Stay within three to four ounces of protein and around 1,400 calories a day to maintain and 1,200 per day to lose weight (for women).
Breakfast:
Salmon Wrap - One La Tortilla Low Carb Wrap filled with two slices of smoked salmon, red onion, capers, low fat cream cheese and greens.
Bacon and Eggs in a Different Way -
http://www.lowcarbsosimple.com/bacon-and-eggs-in-a-different-way/
Summery Pizza (Sunday treat) -
http://healthystories.com.au/2014/01/summery-pizza-omelette-recipe-redux/
Lunch:
Crack Slaw - Named because it is so addictive
http://www.food.com/recipe/crack-slaw-low-carb-434863
Chicken Salad - Cut the recipe in half for 4 servings and also do not add the grapes
http://www.foodnetwork.com/recipes/ina-garten/chicken-salad-veronique-recipe.html
Dinner:
Chinese Tacos and Warm Red Cabbage
http://www.food.com/recipe/chinese-tacos-low-carb-112065
Grilled Fish from Trader Joe's served with Cheesy Creamed Spinach Casserole - Cut the recipe in half for 4 servings - http://allrecipes.com/Recipe/Cheesy-Creamed-Spinach-Casserole/Detail.aspx?evt19=1
Steak and Cheese Stuffed Peppers with fingerling potatoes for Michael -
http://www.slenderkitchen.com/steak-and-cheese-stuffed-peppers/
Baked Pesto Chicken with Pasta Slim (fake pasta found in speciality store's refrigerator section) - use 2 chicken breasts for four servings (cut them horizontally) -
http://www.kalynskitchen.com/2010/09/easy-recipe-for-baked-pesto-chicken.html
Happy, healthful eating!
Saturday, April 12, 2014
New Product! Losing Weight
Michael told me last night that he thought I shouldn't lose any more weight. No one in my entire life has ever said that to me! It was a moment. I won't let him know yet but I am trying to lose as much as possible before the trip. It will give me a cushion to enjoy bites, not plates full, of BBQ in Texas and North Carolina and other goodies. On the road, I will still eat the portions and foods on my low fat/low carb diet but if we bump into something specific to an area, I will have a bite. Also, if we are invited to someones house, I eat what is offered. And I look forward to a special treat! I hate it when I invite people to dinner and they inform me that the husband is a vegan, the kids won't eat anything but hot dogs, the wife will only juice...you get the point. I have vowed never to do that. Never.
So, I should be able to lose an additional five pounds by the time we leave on our road trip. It will put me right at 25 BMI, which is the minimum to begin the lung transplant process. I really like being at the minimum rather than bumping into the 30 BMI maximum.
Friday, April 11, 2014
Saturation Rate/Weight Loss
Since I have lost this last bit of weight, my numbers in the rehab class have been excellent. The best in a long time. Yesterday, my saturation rate was 97 on the treadmill. I often work to keep it above 92 but 97? That is amazing. The next appointment with the nutritionist is Wednesday. It will be interesting to weigh in. I think I have lost around four pounds since our last visit three weeks ago and hope to make that a solid estimate by doing a lot of yard work this weekend. Hours of it!
Our sweet young neighbors welcomed their new baby girl Wednesday. All eight pounds of her! While out with mom today, I will buy a little something to welcome her into this world. Seeing the photos from the hospital brings back so many memories. I hope to book some baby holding time! Nothing like the smell of a baby!
I am feeling great. Knock wood! If I get sick, we will have to cancel the trip. I REALLY don't want to do that. Mom and I went to Apria yesterday to pick up all the confirmations for the oxygen concentrators. That was a huge check off my list of things to do. Now, if I could only control the weather!
Our sweet young neighbors welcomed their new baby girl Wednesday. All eight pounds of her! While out with mom today, I will buy a little something to welcome her into this world. Seeing the photos from the hospital brings back so many memories. I hope to book some baby holding time! Nothing like the smell of a baby!
I am feeling great. Knock wood! If I get sick, we will have to cancel the trip. I REALLY don't want to do that. Mom and I went to Apria yesterday to pick up all the confirmations for the oxygen concentrators. That was a huge check off my list of things to do. Now, if I could only control the weather!
Thursday, April 10, 2014
A Day Off
Do you ever feel like you had a day off? After a bit of drama, yesterday was a really nice day. Michael finally found casual shoes to wear while driving on our road trip but another store had his size, he put them on hold and I had to swing by to pick them up right as they opened yesterday. No problem. It was while I was getting dressed when my ears suddenly heard, "Large tractor trailer gravel truck overturned. The pass is closed." Nuts. I quickly got dress.
That is a story. I bought a new Ralph Lauren light weight black and white polka dot sweater to wear with my black skirt. It was perfect for my luncheon with the rehab boys. Eighty-two year old Dick loves women's legs and I usually wear workout clothing so I thought I would wear a skirt for him. He thanked me again and again!
I hit the road by 9AM then drove north to bypass the accident. Well, many others were doing the same thing and we all just crawled along the ocean cliffs. I did arrive with ten-minutes to spare and sat outside Foot Locker waiting for them to open. Suddenly, one of the mall walkers glanced at me and we both froze. "I know you," I said. It was a woman I had not seen in over twelve years from the school where I got sick. It was so good to see her, we exchanged email addresses and I quickly grabbed Michael's shoes.
Next up: See's Candy. It is West Coast candy. It is actually made near the mall so I went by the factory store and bought a box of candy for the Apria lady who arranged all 11 of my orders for concentrators for the trip and several goodies for the office at Michael's work. With them in hand, I delivered them to the staff. A bit a chocolate always makes things better.
Michael loved my fancy outfit, thanked me for the chocolate for the staff and I headed to lunch. A three hour lunch. The rehab boys were in great form and Allyson, the retired RN who worked with us, laughed a lot. She said she misses us. We certainly miss her a lot. At one point, Dick turned to her and told her, with tears in his eyes, that she was in the top of a handful of people who he utterly respected and who affected his life in a positive way. It was a really lovely lunch of four good friends.
I rolled the windows down in the car and drove home over the opened pass, played some piano and made dinner. It felt like I had a day off. Time together with friends, bumping into an old friend, feeling great about how I looked all dressed up, enjoying my piano, making a great dinner. A nice day off.
Back to workout clothes and the rehab class today.
That is a story. I bought a new Ralph Lauren light weight black and white polka dot sweater to wear with my black skirt. It was perfect for my luncheon with the rehab boys. Eighty-two year old Dick loves women's legs and I usually wear workout clothing so I thought I would wear a skirt for him. He thanked me again and again!
I hit the road by 9AM then drove north to bypass the accident. Well, many others were doing the same thing and we all just crawled along the ocean cliffs. I did arrive with ten-minutes to spare and sat outside Foot Locker waiting for them to open. Suddenly, one of the mall walkers glanced at me and we both froze. "I know you," I said. It was a woman I had not seen in over twelve years from the school where I got sick. It was so good to see her, we exchanged email addresses and I quickly grabbed Michael's shoes.
Next up: See's Candy. It is West Coast candy. It is actually made near the mall so I went by the factory store and bought a box of candy for the Apria lady who arranged all 11 of my orders for concentrators for the trip and several goodies for the office at Michael's work. With them in hand, I delivered them to the staff. A bit a chocolate always makes things better.
Michael loved my fancy outfit, thanked me for the chocolate for the staff and I headed to lunch. A three hour lunch. The rehab boys were in great form and Allyson, the retired RN who worked with us, laughed a lot. She said she misses us. We certainly miss her a lot. At one point, Dick turned to her and told her, with tears in his eyes, that she was in the top of a handful of people who he utterly respected and who affected his life in a positive way. It was a really lovely lunch of four good friends.
I rolled the windows down in the car and drove home over the opened pass, played some piano and made dinner. It felt like I had a day off. Time together with friends, bumping into an old friend, feeling great about how I looked all dressed up, enjoying my piano, making a great dinner. A nice day off.
Back to workout clothes and the rehab class today.
Wednesday, April 9, 2014
Latest Research for ILDs
The head of research for Interstitial Lung Diseases spoke once again at the ILD Support Group meeting. There were several newly diagnosed people in attendance. The search for drugs to treat fibrosis in all organs seems to be a focus and almost a race among the drug companies. It will bring in millions of dollars but it will finally offer a treatment for IPF and other ILDs.
Archer once again went through the research process, which were blogged here:
http://livingwellwithabaddiagnosis.blogspot.com/2012/04/april-ild-support-group-recap-1.html
And here:
http://livingwellwithabaddiagnosis.blogspot.com/2012/04/ild-support-group-recap-2.html
And here:
http://livingwellwithabaddiagnosis.blogspot.com/2012/04/april-ild-support-group-recap-3.html
The best part of the day for me was an update about the current research projects. I was thrilled to hear that the one study - BIBN - which closed last December and the results are currently being reviewed, seemed to show positive results. This is the study using a cancer drug we learned about after a visit by the doctor who initiated the study. You can read about it here: http://livingwellwithabaddiagnosis.blogspot.com/2011/07/latest-drug-and-treatment-guidelines.html
It was also rather a surprise to discover that my university hospital was currently enrolling for ten interventional and observational studies. Interesting things like WRAP-IPF which is weighing the risks and benefits of laparoscopic anti-reflux surgery in patients with IPF in a Phase II Clinical Trial. That is the surgery I had, which did a tremendous amount of help in getting rid of my GERD. They are also looking at Biomarker Discovery for Novel Drug Development in IPF called PPG.
Studies coming soon: PIPF031: A treatment protocol to allow patients in the US with IPF access to Pirfenidone.
Studies on hold: LIBERATE: Lung function improvement after Bronchoscopic lung volume reduction with Pulmonx endobrochial Valves used in the treatment of Emphysema.
Active studies no longer enrolling: There are six including one looking at the role of Microaspirations (ROMI), a phase II trial of inhaled carbon monoxide for the treatment of IPF (INHALED CO), and an open-label extension trial of the long term safety of oral BIBF with IPF (1199.33)
Recently Completed Studies: There are currently four including the famous ASCEND study regarding Pirfenidone and my favorite - 1199.34 as a Phase 3 study.
In addition to the trials listed above, they are also conducting several other ongoing clinical research studies in patients with interstitial lung diseases.
Hang in there friends. There is hope of an anti-fibrotic drug on the horizon.
Archer once again went through the research process, which were blogged here:
http://livingwellwithabaddiagnosis.blogspot.com/2012/04/april-ild-support-group-recap-1.html
And here:
http://livingwellwithabaddiagnosis.blogspot.com/2012/04/ild-support-group-recap-2.html
And here:
http://livingwellwithabaddiagnosis.blogspot.com/2012/04/april-ild-support-group-recap-3.html
The best part of the day for me was an update about the current research projects. I was thrilled to hear that the one study - BIBN - which closed last December and the results are currently being reviewed, seemed to show positive results. This is the study using a cancer drug we learned about after a visit by the doctor who initiated the study. You can read about it here: http://livingwellwithabaddiagnosis.blogspot.com/2011/07/latest-drug-and-treatment-guidelines.html
It was also rather a surprise to discover that my university hospital was currently enrolling for ten interventional and observational studies. Interesting things like WRAP-IPF which is weighing the risks and benefits of laparoscopic anti-reflux surgery in patients with IPF in a Phase II Clinical Trial. That is the surgery I had, which did a tremendous amount of help in getting rid of my GERD. They are also looking at Biomarker Discovery for Novel Drug Development in IPF called PPG.
Studies coming soon: PIPF031: A treatment protocol to allow patients in the US with IPF access to Pirfenidone.
Studies on hold: LIBERATE: Lung function improvement after Bronchoscopic lung volume reduction with Pulmonx endobrochial Valves used in the treatment of Emphysema.
Active studies no longer enrolling: There are six including one looking at the role of Microaspirations (ROMI), a phase II trial of inhaled carbon monoxide for the treatment of IPF (INHALED CO), and an open-label extension trial of the long term safety of oral BIBF with IPF (1199.33)
Recently Completed Studies: There are currently four including the famous ASCEND study regarding Pirfenidone and my favorite - 1199.34 as a Phase 3 study.
In addition to the trials listed above, they are also conducting several other ongoing clinical research studies in patients with interstitial lung diseases.
Hang in there friends. There is hope of an anti-fibrotic drug on the horizon.
Tuesday, April 8, 2014
Judgemental
So much is coming together. I will pick up the last of my medications for the trip this morning and return a call from Apria to confirm the 11 concentrators that have been ordered for the 11 hotels during the trip this morning. Then, I need to arrange a lunch tomorrow with my rehab boys and the retired RN in charge of the rehab program. That will be a lot of fun!
But this afternoon, I will be at my university hospital for an ILD Support Group meeting. The manager of clinical trial for the ILD Program is coming to talk to us about clinical trials in general, and will give us an update on all the current ILD clinical trials. He is so interesting, never dry, speaks in English instead of Medicine which makes it all so easy to understand and I usually drive home feeling hopeful.
I have a story: I was on the bike at the other rehab yesterday morning when I glanced up. It was that feeling of being watched. A woman I had never seen before was getting ready to hop on the treadmill but had paused just staring at me. Her face showed clear disdain. I have seen that before. People see my oxygen and think and often say that I really should never have smoked. The need for oxygen was my punishment. It makes them feel superior. A bit judgemental considering I have never smoked. I usually smile then educate them politely.
Something about her really tweaked me. After I watched her work out for a few minutes, I developed a plan. I finished on the bike, strolled over to the treadmill right next to her then kicked it up to my normal 3.4 mph. I could see her glance over to see how fast I was going. She kicked hers up for a bit before kicking it back down. She couldn't keep up. So, the lesson here that I was trying to teach this woman was that a person on oxygen was still able to be active and fit. Still feeling superior?
Then, she got me back. Suddenly, the horrible smell of flatulence invaded the space. Gas. I refused to acknowledged it, did another four minutes next to her then left for the day. Maybe I will begin a conversation next time I see her at the gym. Maybe I will explain to her how I got my disease. Maybe I will mention that it is the only lung disease one cannot get if one smoked. Maybe we will become friends. Maybe not.
But this afternoon, I will be at my university hospital for an ILD Support Group meeting. The manager of clinical trial for the ILD Program is coming to talk to us about clinical trials in general, and will give us an update on all the current ILD clinical trials. He is so interesting, never dry, speaks in English instead of Medicine which makes it all so easy to understand and I usually drive home feeling hopeful.
I have a story: I was on the bike at the other rehab yesterday morning when I glanced up. It was that feeling of being watched. A woman I had never seen before was getting ready to hop on the treadmill but had paused just staring at me. Her face showed clear disdain. I have seen that before. People see my oxygen and think and often say that I really should never have smoked. The need for oxygen was my punishment. It makes them feel superior. A bit judgemental considering I have never smoked. I usually smile then educate them politely.
Something about her really tweaked me. After I watched her work out for a few minutes, I developed a plan. I finished on the bike, strolled over to the treadmill right next to her then kicked it up to my normal 3.4 mph. I could see her glance over to see how fast I was going. She kicked hers up for a bit before kicking it back down. She couldn't keep up. So, the lesson here that I was trying to teach this woman was that a person on oxygen was still able to be active and fit. Still feeling superior?
Then, she got me back. Suddenly, the horrible smell of flatulence invaded the space. Gas. I refused to acknowledged it, did another four minutes next to her then left for the day. Maybe I will begin a conversation next time I see her at the gym. Maybe I will explain to her how I got my disease. Maybe I will mention that it is the only lung disease one cannot get if one smoked. Maybe we will become friends. Maybe not.
Monday, April 7, 2014
Let the Shopping Begin!
It is going to be 70 degrees on the coast today. It was so beautiful yesterday that I opened every window in the house and let the air do its job. Even just before bedtime, we were sitting in the family room in shorts and shirts feeling the soft warm breeze. Sadly, we heard a lot of sirens throughout the afternoon. Warm weather always brings a ton of tourists to the coastside and they do get distracted.
In the afternoon, we watched some free HBO, the Giants game (I don't want to talk about it!) and later sat on the swing in the garden after dinner. I earned the rest. After playing some piano, I attacked the Japanese Maple between the two bedroom windows in the front yard. One large branch had died so Michael cut it off on Saturday. The tree then needed to be balanced and thinned and shaped by hand, which took over an hour. By the time I trimmed the flowers along the driveway and cleaned everything up, it was lunchtime!
Today, I will head back to the other rehab early this morning then I will be spending the day with mom. Lots of shopping. I will begin buying things for the roadtrip (I have a list!) beside the groceries for the week. Tonight, we are going to the Nordstrom Rack to buy some shoes Michael has been stalking for the trip. He also needs a pair of shorts and a new pair of jeans. It will be a shopping day!
On an embarrassingly stupid note - I did it again. After getting out of bed this morning, I went to the garage to hang up the long hose and to turn off my oxygen when I discovered that I HAD NOT TURNED IT ON LAST NIGHT! No oxygen all night. I swear I need a handler.
In the afternoon, we watched some free HBO, the Giants game (I don't want to talk about it!) and later sat on the swing in the garden after dinner. I earned the rest. After playing some piano, I attacked the Japanese Maple between the two bedroom windows in the front yard. One large branch had died so Michael cut it off on Saturday. The tree then needed to be balanced and thinned and shaped by hand, which took over an hour. By the time I trimmed the flowers along the driveway and cleaned everything up, it was lunchtime!
Today, I will head back to the other rehab early this morning then I will be spending the day with mom. Lots of shopping. I will begin buying things for the roadtrip (I have a list!) beside the groceries for the week. Tonight, we are going to the Nordstrom Rack to buy some shoes Michael has been stalking for the trip. He also needs a pair of shorts and a new pair of jeans. It will be a shopping day!
On an embarrassingly stupid note - I did it again. After getting out of bed this morning, I went to the garage to hang up the long hose and to turn off my oxygen when I discovered that I HAD NOT TURNED IT ON LAST NIGHT! No oxygen all night. I swear I need a handler.
Sunday, April 6, 2014
BOOM!
Briefly, I will mention the overwhelming, pure joy I experienced playing through a ton of music on the piano yesterday morning. Bliss. But, do I ever need work! Nothing came easily and like muscles after not working out for a month, I am sure it will all come back to my fingers.
I have been thinking a lot about what my friend Barbara said about her mom having a stroke. In a moment, life changed forever. There was now a new normal. She was so right. There was no warning. No matter how much we feel that we have control or confidence in our health, BOOM! A wake up call.
It is at that moment when we discover what we are made of. What is in our core? Who are we REALLY? Like Barbara's mom, do you fight, work at rehab and transfer to your new home at an assisted living place? Or, do you decide you want to lay in bed and wait to die?
This blog has always been about giving information, medical updates in the latest research and proving that we can all live well with a BOOM! A life changing incident. A bad diagnosis.
Personally, I had mentally prepared myself for a long downhill towards lung transplants. What I have finally learned is that it is a sudden BOOM! A crash. A small window of opportunity to complete the tests and get on the list. Sick enough to need the transplants. Well enough to survive the process. The window is opened for such a short period of time.
I have just recently realized it may not play out like that. It may end with a sudden stroke like the beautiful Susan. Or in a car accident. Or die of pneumonia. Or a cancer. Who knows?
So now what? We appreciate each day and the joy that it brings. We make sure all relationship are good. Everything that needs to be said, has been said. We smile. We live. We make every moment count.
We live well with a bad diagnosis.
I have been thinking a lot about what my friend Barbara said about her mom having a stroke. In a moment, life changed forever. There was now a new normal. She was so right. There was no warning. No matter how much we feel that we have control or confidence in our health, BOOM! A wake up call.
It is at that moment when we discover what we are made of. What is in our core? Who are we REALLY? Like Barbara's mom, do you fight, work at rehab and transfer to your new home at an assisted living place? Or, do you decide you want to lay in bed and wait to die?
This blog has always been about giving information, medical updates in the latest research and proving that we can all live well with a BOOM! A life changing incident. A bad diagnosis.
Personally, I had mentally prepared myself for a long downhill towards lung transplants. What I have finally learned is that it is a sudden BOOM! A crash. A small window of opportunity to complete the tests and get on the list. Sick enough to need the transplants. Well enough to survive the process. The window is opened for such a short period of time.
I have just recently realized it may not play out like that. It may end with a sudden stroke like the beautiful Susan. Or in a car accident. Or die of pneumonia. Or a cancer. Who knows?
So now what? We appreciate each day and the joy that it brings. We make sure all relationship are good. Everything that needs to be said, has been said. We smile. We live. We make every moment count.
We live well with a bad diagnosis.
Saturday, April 5, 2014
Recipes for the Week
In the late afternoon, I put together the menus and recipes for next week. Michael asked for the Chicken Shawarma again. Lots of new recipes this week:
Breakfast - Fried Cabbage and Sausage - I use Trader Joe's Turkey Kielbasa sausage
http://www.fatsecret.com/recipes/fried-cabbage-and-sausage/Default.aspx
Light Breakfast Scramble - http://www.latortillafactory.com/recipe/light-breakfast-scrambler/
Lunch - Pizza - I am using 1/2 of the mozzarella for a thinner crust this time.
http://www.genaw.com/lowcarb/thinandcrispy_pizza.html
Buffalo Chicken Dip - I will have celery and some rye crackers with this dip.
http://recipes.sparkpeople.com/recipe-detail.asp?recipe=79073
Dinner - Chicken Shawarma with Red Cabbage Salad (on a flatbread for Michael)
http://www.busyinbrooklyn.com/chicken-shawarma-recipe/
Low Carb Jambalaya - I will use 1/2 of all protein
http://allrecipes.com/recipe/low-carb-jambalaya/
Popeye's Special - http://www.sugarfreechic.com/2013/03/popeyes-special/#more-1837
Low Carb Stuffed Bell Peppers - I will cut the peppers lengthwise and I think they might need about 45 minutes to bake the peppers - http://www.food.com/recipe/low-carb-stuffed-bell-peppers-156140
Friday, April 4, 2014
Tickling the Ivories
Norm the tuner arrived and told me it was indeed flat but it shouldn't be a problem getting it up to A440. I was thrilled. No strings were broken in the process! He even told me that how I keep the piano with the front part of the lid folded back and the keyboard cover closed was the perfect way for air to circulate. I had been doing everything right!
After three hours of cleaning, vacuuming and tuning, my piano was wonderful. I can now play it! We made plans to re-tune it in four months and I promised to play it a lot to help the strings settled in. I am joyful. My fingers are using muscle memory to remember songs and pieces of music I haven't played in years. Since I was able to cut the yards yesterday before this morning's rains, I now have all day Saturday to mess around with it. Hours. So exciting!
Mom and I are going to the Gem Show today, thanks to Grace. She gave us free tickets. We will go after I work out at the other rehab this morning and we have a bit of lunch. A nice day.I feel good. No sign of the cold, though I was worried because I had a bit of a dry throat after spending the entire day with mom on Wednesday. But, I still don't want to push my luck, so this weekend will be a quiet one. I am gathering my strength for all the preparations for the trip.
Thursday, April 3, 2014
Tune it Up!
Mom and I had an easy ride out to the Valley and an easier ride back home. Still, it was a long day and I was trying to gather my strength for orchestra rehearsal after dropping mom off at her home when suddenly, my cell phone rang. It was Gerry. She told me she was not going to be at the rehearsal and that she also was not going to be able to play the concert. They are going to have to hire someone to fill in for us. I was so very happy that I didn't have to go to the rehearsal, in fact, there would be no more rehearsals until September. I need a break.Grace was a teacher and is a history buff. Conversations with her are always so interesting and the luncheon was lovely. She gave mom a few pieces of costume jewelry, which she loved. It was good for these two friends to sit and talk together. I tried to stay quiet and let them have their time.
The piano tuner is due this afternoon so I am going to try to cut the grass early this morning. More rain is due tomorrow so today is my only chance.
My piano. It is a full grand made in Korea. It is not a GREAT piano but it is good enough of this not-so-great pianist. But, I miss playing it. It is so out of tune that I can't stand hearing it. When William was growing up, I would play it while waiting for dinner to cook or Michael to come home or if I was bored in the afternoon. He bedroom door would be shut. It was on the Nordstroms escalator when I discovered he actually was listening and had developed a decent musical ear. It was the era of "Chariots of Fire" and I had bought the sheet music. Suddenly, the pianist at Nordstroms began playing a rather flowery arrangement of it and he said, "You play that song, mom." He was eight-years old. Little did I know where his musical ears would take him. He is in Sao Paulo, Brazil today.
My goal is to have the piano tuned twice today then once again after our road trip. I know he can't get it up to 440 but he can tune it up a bit and to itself. The goal is to re-tune it at least two more times to get it up to 440 by Christmas so we can sing and play other instruments together.
Wednesday, April 2, 2014
Quiet Day with a Bit of Panic
I clearly made the right decision to stay home yesterday. Several bans of the big storm blew through and there was even some snow on the peaks surrounding the Bay Area. A rather rare event. It was COLD! I washed and ironed our sheets along with several loads of laundry, finally got an appointment for the sonogram of my liver and other fun organs, the box arrived from DirecTV for the return of two of their boxes, the list was started for all the little things to remember before we leave on vacation, I ran out to the grocery store for a couple of things I forgot on the weekend then put some gas in the car all before lunchtime. Around 1:00, I settled into my chair and slept for close to two hours. I really needed the time off. Coldcam did its job. There is no sign of the cold that was threatening to settle into my body. I do believe that a quiet day yesterday really helped.
Today is going to be long and hard. It is still raining and I need to be showered and dressed and fed and gone within two hours. Mom and I are driving over 100 miles to replace the flowers on dad's crypt and have lunch with her friend Grace. After driving home, I will have a moment to eat dinner before the orchestra rehearsal. Bedtime will be 10:00 but hopefully, I will be able to sleep in a bit on Thursday.
I am trying to be so careful. I really don't want to get sick.
Worried parents: I must say that I was stunned and panicked to hear about the massive earthquake in Chile. William was just there. I was quickly searching the band's tour site to see if he had moved on to another country or if he was still in Santiago. Just then, Michael phoned and he, too, was worried. My fingers were shaking as I tried to get the information and relief flooded through my body when I read he was working a concert yesterday and today in Buenos Aires, Argentina on the other side of the continent. We both took a deep breath.
Today is going to be long and hard. It is still raining and I need to be showered and dressed and fed and gone within two hours. Mom and I are driving over 100 miles to replace the flowers on dad's crypt and have lunch with her friend Grace. After driving home, I will have a moment to eat dinner before the orchestra rehearsal. Bedtime will be 10:00 but hopefully, I will be able to sleep in a bit on Thursday.
I am trying to be so careful. I really don't want to get sick.
Worried parents: I must say that I was stunned and panicked to hear about the massive earthquake in Chile. William was just there. I was quickly searching the band's tour site to see if he had moved on to another country or if he was still in Santiago. Just then, Michael phoned and he, too, was worried. My fingers were shaking as I tried to get the information and relief flooded through my body when I read he was working a concert yesterday and today in Buenos Aires, Argentina on the other side of the continent. We both took a deep breath.
Tuesday, April 1, 2014
Staying Put
I think I have broken through and hit my goal of getting under my lightest weight since 1989. After pulling on my 512 Levi's - the smallest thing I own - I discovered they were LOOSE! It was rather shocking. Exciting. Another 5 pounds pre-vacation would be ideal but we'll see what I can do before we take off in May.
Mom got a call from her dear friend, Grace who said, "I want to give you something before I die." She and mom are the same age but her diabetes was unmonitored and not treated for years. She ignored it until a medical crash, a hospital stay and education about two years ago. She began eating properly, taking her medications and dropped a ton of weight. The last time we saw her though, mom didn't think she looked well. She must be feeling something for her to make such a statement. Early tomorrow, mom and I will be making the two hour drive to the Central Valley to replace the flowers on Dad's crypt before meeting Grace for lunch. Afterwards, it is another two-hour drive home and then I have an orchestra rehearsal.
I am still fighting this bug though the Coldcalm seems to be doing its job. We didn't get to bed until after 10 last night due to our visit in the city with British Don. No one tells a story like Don. With his British accent and the stringing of unusual words together, it is purely entertaining.
There is a huge storm blowing through all day today so I am considering not going to rehab and staying home. I have a lot of lists to make for the trip and this might be the day to begin that process. Since I won't be home until later tomorrow afternoon, I thought I would make tomorrow's dinner. Trying to think ahead.
Mom got a call from her dear friend, Grace who said, "I want to give you something before I die." She and mom are the same age but her diabetes was unmonitored and not treated for years. She ignored it until a medical crash, a hospital stay and education about two years ago. She began eating properly, taking her medications and dropped a ton of weight. The last time we saw her though, mom didn't think she looked well. She must be feeling something for her to make such a statement. Early tomorrow, mom and I will be making the two hour drive to the Central Valley to replace the flowers on Dad's crypt before meeting Grace for lunch. Afterwards, it is another two-hour drive home and then I have an orchestra rehearsal.
I am still fighting this bug though the Coldcalm seems to be doing its job. We didn't get to bed until after 10 last night due to our visit in the city with British Don. No one tells a story like Don. With his British accent and the stringing of unusual words together, it is purely entertaining.
There is a huge storm blowing through all day today so I am considering not going to rehab and staying home. I have a lot of lists to make for the trip and this might be the day to begin that process. Since I won't be home until later tomorrow afternoon, I thought I would make tomorrow's dinner. Trying to think ahead.
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