Living Well with a Bad Diagnosis - Lung Disease

Thursday, February 28, 2013

Test, Test and Done

What a day yesterday. I arrived early to the hospital for the echo sonogram to check for pulmonary hypertension. Kevin, the tech, was fantastic and a foodie! He is married to a woman from southern Georgia and he is Chinese so he really understands and loves a wide variety of food. We had a ball. While we were talking, he was taking various photos and sound recordings of my heart and measuring the pressures within my lungs. After about 45 minutes, a nurse came in and put a line in my arm to inject a saline solution. The solution would appear on the screen as it went through my heart and other photos were taken. It was to see if there was any leakage or backup.

The big news: All is well. The pressures were low. No pulmonary hypertension.

I dodged that bullet. Next up, the pulmonary function tests. The DLCO was up from 12.2 last time to 12.6. The VLC was also up a bit but nothing significant. But, at least there was not another downturn. Before the test, there were two other people waiting with me. Both had never had PFTs before and were very nervous. Because I am so consistent with my tests, I was finished in 40-minutes. One of the other people asked how I was finished so quickly? The techs laughed and said, "Oh, she's an old pro." That I am.

In the middle of the test, my phone rang. My sister called to announce that she got a job at the place she has been temping for almost two years. A real job with benefits and vacations. They put her through seven interviews. Crazy. So happy for her.

Finally, I made my way to Dr. K. and the lung clinic. I love the staff! Everyone came by to say hello while I waited. Even chatted up a few of the big, famous doctors who have known me for years but haven't seen for a while. Dr. K. reviewed the PFTs but the report for the PH was not finished and in my file yet. I told her everything the tech had told me so we were both relieved. As she reviewed everything she said the sweetest words to my ears, "Well, you are stable. See you in six months. Call me if you need me." She also mentioned that I was not ill enough to begin the lung transplant process and sounded rather disappointed. I think she wanted me to get two lungs, which would require me to be under 60-years old. I turn 60 this November.

I told her about the upcoming memorial service and promised not to hug, kiss or shake hands with anyone. She congratulated me for getting through the flu season unscathed but warned me again about the colds that are still infecting people.

The ride home was beautiful along the ocean cliffs. It had been a good day with good news.

Wednesday, February 27, 2013

Pulmonary Hypertension?

I slept through the night last night even though I went to bed filled with anxiety about today. Today is the day. The echo sonogram is happening this morning to determine if I have pulmonary hypertension. That could be bad news. It will be quickly followed by the arduous pulmonary function tests then an appointment with Dr. K. to review all the results.

In general, I am fatigued. I just don't have the energy or stamina that I had just a year ago, before the constant battle with bronchitis. It scares me. I have to constantly push myself to do anything because I refuse to sit is a chair and nap all day. It takes longer to recover from activities. Life is changing.

I pulled the following information from the Internet:

Pulmonary Hypertension: Causes, Symptoms, Diagnosis, Treatment

(Also Called 'Secondary Pulmonary Hypertension', 'Secondary Pulmonary Hypertension')

What is pulmonary hypertension?

Pulmonary hypertension is a rare lung disorder in which the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. As a result, the blood pressure in these arteries -- called pulmonary arteries -- rises far above normal levels. This abnormally high pressure strains the right ventricle of the heart, causing it to expand in size. Overworked and enlarged, the right ventricle gradually becomes weaker and loses its ability to pump enough blood to the lungs. This could lead to the development of right heart failure.
Pulmonary hypertension occurs in individuals of all ages, races, and ethnic backgrounds although it is much more common in young adults and is approximately twice as common in women as in men.

Why do the pulmonary arteries narrow?

Scientists believe that the process starts with injury to the layer of cells that line the small blood vessels of the lungs. This injury, which occurs for unknown reasons, may cause changes in the way these cells interact with the smooth muscle cells in the vessel wall. As a result, the smooth muscle contracts more than normal and narrows the vessel.

What are the symptoms of pulmonary hypertension?

Symptoms of pulmonary hypertension do not usually occur until the condition has progressed. The first symptom of pulmonary hypertension is usually shortness of breath with everyday activities, such as climbing stairs. Fatigue, dizziness, and fainting spells also can be symptoms. Swelling in the ankles, abdomen or legs; bluish lips and skin, and chest pain may occur as strain on the heart increases. Symptoms range in severity and a given patient may not have all of the symptoms.
In more advanced stages of the disease, even minimal activity will produce some of the symptoms. Additional symptoms include irregular heart beat (palpitations or strong, throbbing sensation), racing pulse, passing out or dizziness, progressive shortness of breath during exercise or activity, and difficulty breathing at rest. Eventually, it may become difficult to carry out any activities as the disease worsens.

What causes pulmonary hypertension?

The following are some known causes of pulmonary hypertension:
  • The diet drug "fen-phen." Although the appetite suppressant "fen-phen" (dexfenfluramine and phentermine) has been taken off the market, former fen-phen users have a 23-fold increase risk of developing pulmonary hypertension, possibly years later.
  • Liver diseases, rheumatic disorders, lung conditions. Pulmonary hypertension also can occur as a result of other medical conditions, such as chronic liver disease and liver cirrhosis; rheumatic disorders such as scleroderma or systemic lupus erythematosus (lupus); and lung conditions including tumors, emphysema, chronic obstructive pulmonary disease (COPD), and pulmonary fibrosis.
  • Certain heart diseases. Heart diseases including aortic valve disease, left heart failure, mitral valve disease, and congenital heart disease can also cause pulmonary hypertension.
  • Thromboembolic disease. A blood clot in a large pulmonary artery can result in the development of pulmonary hypertension.
  • Low-oxygen conditions. High altitude living, obesity, and sleep apnea can also lead to the development of pulmonary hypertension.
  • Genetic predisposition. Pulmonary hypertension is inherited in a small number of cases. Knowing that someone in the family had or has pulmonary hypertension should prompt you to seek early evaluation should symptoms occur.
Pulmonary hypertension may also be caused by other conditions, and in some cases, the cause is unknown.

How is pulmonary hypertension diagnosed?

Because pulmonary hypertension may be caused by many medical conditions, a complete medical history, physical exam, and description of your symptoms are necessary to rule out other diseases and make the correct diagnosis. During the physical exam, your health care provider will:
  • listen for abnormal heart sounds such as a loud pulmonic valve sound, a systolic murmur of tricuspid regurgitation, or a gallop due to ventricular failure.
  • examine the jugular vein in the neck for engorgement.
  • examine the abdomen, legs, and ankles for fluid retention.
  • examine nail beds for bluish tint.
  • look for signs of other underlying diseases that might be causing pulmonary hypertension.
Other tests that might be ordered include:
  • Blood tests:
    • Complete metabolic panel (CMP): Examines liver and kidney function
    • Autoantibody blood tests, such as ANA, ESR, and others: Screens for collagen vascular diseases
    • Thyroid stimulating hormone (TSH): A screen for thyroid problems
    • HIV: A screen for human immunodeficiency virus
    • Arterial blood gases (ABG): Determines the level of oxygen in arterial blood.
    • Complete blood count (CBC): Tests for infection, elevated hemoglobin, and anemia
    • B-type natriuretic peptide (BNP): A marker for heart failure
  • Doppler echocardiogram: Uses sound waves to show the function of the right ventricle, to measure blood flow through the heart valves, and then calculate the systolic pulmonary artery pressure.
  • Chest X-ray: Shows an enlarged right ventricle and enlarged pulmonary arteries.
  • 6 minute walk test: Determines exercise tolerance level and blood oxygen saturation level during exercise.
  • Pulmonary function tests: Evaluates for other lung conditions such as chronic obstructive pulmonary disease and idiopathic pulmonary fibrosis among others.
  • Polysomnogram or overnight oximetry: Screens for sleep apnea (results in low oxygen levels at night).
  • Right heart catheterization: Measures various heart pressures (ie, inside the pulmonary arteries, coming from the left side of the heart), the rate at which the heart is able to pump blood, and finds any leaks between the right and left sides of the heart.
  • Ventilation perfusion scan (V/Q scan): Looks for evidence of blood clots along the pathway to the lungs.
  • Pulmonary angiogram: Looks for blood clot blockages in the pulmonary arteries.
  • Chest CT scan: Looks for blood clots and other lung conditions that may be contributing to or worsening pulmonary hypertension.

How is pulmonary hypertension treated?

Appropriate diagnosis and analysis of the problem is necessary before starting any treatment. Treatment varies per individual based on the different underlying causes but generally includes taking medications; making lifestyle and dietary changes; having surgery, if necessary; and seeing your doctor regularly. Listed below are medication and surgical treatment approaches.
Many different types of medications are available to treat pulmonary hypertension. Treatment choices, such as those listed below, depend on the severity of pulmonary hypertension, the likelihood of progression, and individual drug tolerance.
  • Oxygen — replaces the low oxygen in your blood.
  • Anticoagulants or "blood thinners" such as warfarin sodium (Coumadin) — decreases blood clot formation so blood flows more freely through blood vessels. Note: when taking anticoagulant medications, it is important for you to monitor bleeding complications and have regular lab work to monitor the level of medication in your bloodstream.
  • Diuretics or "water pills" [such as furosemide (Lasix®), spironalactone (Aldactone®)] — removes extra fluid from the tissues and bloodstream, which reduces swelling and makes breathing easier.
  • Potassium (such as K-dur®) — replaces potassium (an essential nutrient) that may be lost with increased urination when taking diuretics.
  • Inotropic agents (such as digoxin) — improves the heart’s pumping ability.
  • Vasodilators [such as nifedipine (Procardia®) or diltiazem (Cardizem®)] — lowers pulmonary blood pressure and may improve the pumping ability of the right side of the heart.
  • Bosentan (Tracleer®), ambrisentan (Letairis®) — helps block the action of endothelin, a substance that causes narrowing of lung blood vessels. These medications require monthly labwork to monitor liver function.
  • Epoprostenol (Flolan®), treprostinil sodium (Remodulin®, Tyvaso®), iloprost (Ventavis®) — dilates pulmonary arteries and helps prevent blood clots from forming.
  • Sildenafil (Revatio®), tadalafil (Adcirca®) — relaxes pulmonary smooth muscle cells, which leads to dilation of the pulmonary arteries.
Surgical therapies
Pulmonary thromboendarterectomy: If present, a large clot in the pulmonary artery may be surgically removed to improve blood flow and lung function.
Lung transplantation: Currently, this is the only cure for primary pulmonary hypertension. Transplantation is reserved for advanced pulmonary hypertension that is not responsive to medical therapy. The right side of the heart will generally return to normal after the lung/lungs have been transplanted. About 1,000 lung transplants are performed annually in the United States. Many people are on the waiting list, yet a shortage of donors is the major limiting factor. Your health care provider will discuss transplantation if it is an appropriate treatment option for your condition.
Heart/lung transplantation: This type of double organ transplant is very rare but is necessary for all patients who have combined lung and left heart failure.
© Copyright 1995-2010 The Cleveland Clinic Foundation. All rights reserved.
Can't find the health information you’re looking for?
This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 1/14/2010…#6530

Tuesday, February 26, 2013

Feeling a Bit of Guilt!

We had a wonderful early dinner last night, sat at the waterfront and watched the sunset while enjoying Lobster Rolls - over a pound of Maine lobster on a specially designed bun served with potato chips and cole slaw. (I had a crab salad.) George and Mary Ann loved the food and the location. We were even able to talk together without music blaring, which is often a huge pet peeve of mine.

Potato Chips. Probably my most favorite food and NOT allowed in our house for many years. Too dangerous! Dick, one of my rehab boys, left a bag of the new Sriracha Lays Chips for me with Sherman on Thursday. OMG! They were fantastic but, darn, I am trying to be so careful with what I am eating. Thankfully, Michael helped eat them! So, I am searching for the Chicken & Waffle flavor Lays Chips to bring with me to rehab today to surprise Dick. I can't find them. Anywhere. I am going to try a few more stores this morning.

My goal is to be showered, dressed and out the door by 9:30 tomorrow morning for the drive into the city. The appointment for the Echo sonogram to check for Pulmonary Hypertension is at 11:00, the Pulmonary Function Tests are scheduled for 1:00 and my meeting with Dr. K. to review all the tests will be at 2:30. It is going to be a long day. My prayers are that I do not have Pulmonary Hypertension.

We were just watching the news and seeing all the storms hitting much of the country. Poor Amarillo! And we have a friend driving from Chicago to Raleigh right now. We are expecting 64 and sunny here today. I almost feel guilty.

Monday, February 25, 2013

Dinner and a Movie

For the first time in years, we watched the Academy Awards last night. I loved all the music. I loved the gowns. And the hair. Sadly, we had not seen any of the movies! I really must visit that machine at the grocery store. Argo will be my first choice. I remember when it all happened.

I always like to have the yards and house looking exceptional when someone will be swinging by for the first time. This evening, George and his wife are meeting us here before a dinner as a thank you to Michael. We are going to the place right on the water, which flies in their lobster from Maine everyday and serves a 1.5 pound of it on their lobster rolls. So yesterday morning, I washed the windows, dusted and vacuumed the house and even washed and ironed our sheets. We sat out in the garden for an hour in the afternoon then settled in to watch the Red Carpet and Awards.

While we were outside, I told Michael that I am really anxious about the memorial service and being in the same room with his brother and wife. I REALLY don't want to say anything that I will regret. I will avoid them and just nod a hello. I hope. My focus will be to help Anna with the food and to talk with her children and spouses, each of whom I adore. There will be other relatives present who I haven't seen in decades so it should be fun to catch up with them, too. We talked about what we are going to wear for the service and what we will wear during the trip itself. Michael said to focus on the road trip and how much fun that is going to be.

I am going to the other rehab for a quick workout then to mom's. She has her final rehab for balance issues, which will be followed by lunch.

Sunday, February 24, 2013

Bumping Into Greatness

We often feel like we have had Forrest Gump-type experiences. In our lives, we have met and have known many famous people and had weird experiences like being invited to a surprise birthday party for baseball legion Reggie Jackson. A friend of Michael's was a manager at his auto dealership. He invited us to the party at a fancy restaurant in Oakland, we thought it was a fundraiser-type thing so I brought along our checkbook. I was excited to recognize the mayor, Bobbie McFerrin and several huge men who were obviously professional athletes.

It was only then that we realized that this was a private party. No fundraiser. We really should not have been there.

Suddenly, the doors opened and in walked Reggie with his mom and sister. As the crowd moved in his direction, we moved to the opposite side of the room. We kept expecting him to point at us and say, "You! I don't know you!" Finally, after a while of doing this dance of trying to dodge the great man, we fled. We drove back over the bridge to SF, arrived hungry around midnight to a cool restaurant along the Embarcadero, which was in an old railroad car. The waiter looked at us and said, "Where have you been?" We replied, "We were at a private birthday party for Reggie Jackson." He looked at us, blinked and asked, "How did you ever get invited to that?" Our reply? "Exactly!"

We have had dozens of these types of experience and often don't realize the implications until many years later. In the 1970s after we were married but before William was born, we were doing the music for the Mass when we met a man. He was a short, black man with a lovely accent and with such an unusual name that I would remember it years later. He was on a speaking tour of the US to fund raise. At our church, a few times a year, missionaries spoke and a special collection box was passed. We talked with him before the Mass and had an interesting conversation. He spoke about his homeland in Africa. Afterwards, we said our goodbyes and hugged. I remember commenting that we clearly were in the presence a holy man. Little did we know. The following year, he was back. It was shocking to us that he remembered us. We again had an interesting and lively conversation and again, we wished him our best and hugged goodbye.

This little man was at that moment was beginning his fight against apartheid. He was Desmond Tutu. What makes this story more stunning is that over thirty years later, Bishop Tutu was on a US tour with the Dali Lama and appearing in Seattle. William's group was invited to perform. Yes, the circle was completed.

Saturday, February 23, 2013

Weeds Begone

I love Saturdays. Michael is usually gone for most of the day, I try not to leave the house and can just move at my own pace. No where to go. Nothing I HAVE to do. Around 10:00, I usually go into the gardens and do a quick clean up or a long, all-day session. Last week, it was seven hours. This Saturday? I need to do a lot of weeding in the front and a general clean-up, which should take around four hours. After working in the garden, I always look forward to a nice shower and a cold glass of water while walking through the gardens to look at all my work.

This early evening, Michael wants to go over the pass for a casual dinner. That is a rare event for us. We just don't go out to dinner much anymore so I am looking forward to a change to our routine.

Anna phoned last night and wanted some advice with the memorial service for Matt. At the National cemetery, the service has a time limit of 30-minutes. Period. Of that time, 15-minutes is the military ceremony. So, her husband is going to have lead everyone in the Lord's Prayer, he will give a short eulogy and that will be it. She said Matt's remains are in a cardboard box and wanted to know how it should be displayed. We decided to have fabric draped over it and a framed photo of Matt next to it. We are also praying that the weather will be warm and dry. I also suggested that there should be one arrangement of flowers on the site from the siblings. She agreed. She also said that there should be about thirty people present.

The sun is shinning and it is beginning to warm up. A good Saturday ahead.

Friday, February 22, 2013

Lost a Few Years

I was rather surprised when I heard the garage door open and Michael suddenly appeared at 3:00 yesterday afternoon. A nice surprise. He said, "Are you ready?" Ready? For what? "The first road test down the coast in the 1966 Mustang."

So, with windows down and the heater on, we drove south of town along the ocean. It was sparkling clear and exciting. At first, it felt very strange. We are so used to nice modern cars with their safety equipment and their quiet exhaust systems and their fuel injections. It was LOUD, it had that gassy smell about it that I had forgotten and as we drove, I felt the years drift away. I remembered driving this road, in a 1966 Mustang about 40-years ago. 

As we were driving a long downhill, a car coming north started flashing its lights. Cop ahead. Michael slowed down and we passed a Sheriff hidden on the side of the road. We turned off into a beach parking lot and took a photo. We told William we were taking his car places and would send photos. This one was labeled, "First visit to the beach."

He and Michael texted back and forth after we got home. He is so looking forward to driving it. It is fast. It is loud. Thank goodness they put seat belts in it!

After we got home, Michael went through the car and it all looked good. Nothing leaking, Nothing loose. As he was in the garage celebrating with a small bourbon and fixing little things in the interior, the oxygen company driver came to refill my liquid oxygen tank. He LOVED the car and asked Michael if he would start it up which made Michael's day. I was in making dinner, went back out to the garage after 20-minutes and there were two men standing around a car talking cars. From the beginning of time with cavemen sitting around a fire, it was such a male moment. The driver told us that we were the youngest older couple he has ever met! What? We are old? After driving that old car down the coast, we both had forgotten and felt like kids again.

Thursday, February 21, 2013

Beginnings, Middles and Endings

I was in the yoga hell class yesterday and finally got it. I understood for the first time what the teacher was trying to get us to feel in each position and with each breath. I was so focused on only myself and what I was able to do - as opposed to what I was not able to do - that I felt exhausted but energized afterwards and am not sore this morning. After an hour of recovery time, I met Natalie and the kids for lunch and by the time I was at the orchestra rehearsal last night, I was fighting to stay awake. 

Michael's sister Anna phoned before I went to the rehearsal. She was having a rough day. Apparently, she had all the proper paperwork and was instructed by the military person who was organizing the memorial for Matt to go to any post office and they would give her a flag for the service. Sounds easy. The first woman she presented the paperwork to berated her and told her she that the funeral director in Las Vegas should have supplied the flag. No flag. She went to a second post office. There she was also denied. Finally, the third one took pity on her and gave her a flag after asking for her paperwork so they could be reimbursed by the government. She had been frustrated and angry so when they handed her the flag, she burst into tears. The wonderful people at that post office hugged her and offered their condolences for the loss of her brother. She had been juggling so many balls in the air right now, her nerves are frayed. I offered to help in any way I can when I get down there. 

After she got home, she got a phone call from her husband Doug. He is a public defender with just a couple more years left before retirement. He told her that he had the roughest day of his entire career then she told him of the emotional and frustrating day she had also experienced. They both started to laugh then made plans to go out for cocktails and dinner. That made me smile. They had a relationship in the past with lots of disagreements and arguments. I think if I were married to a public defender, I too would be arguing all the time! It is what they do best! In the past, this conversation would have led to a fight. Now, as they are older, they are totally enjoying each other and have grown so close. It is nice to watch their transition from parents into exceptional grandparents and being loving and happy with each other.

The 1966 Mustang that Michael and William have been building for the last couple of years is now back in our garage. Everything is done, except for the paintwork. Everything is new. Michael and I are going to begin to take it on short trips into town or down the coast to make sure all the kinks are out of it. William is coming down soon and is so excited to drive it.

Something I have been dreading happened during the orchestra rehearsal cookie break. The violin teacher who was an original founder of the orchestra and with whom I have been playing concerts with her private students the last couple of years has rejoined the orchestra. She has some health issues and her return to playing is rather remarkable in itself. I was able to tell her that I am no longer going to play with her group. It really had become too much. It began with a couple of rehearsals for a Christmas community performance then grew into another major concert then she was talking about getting the adults together to play ensembles. I told her that Michael is the person who keeps me reeled in as I want to do so much. Too much. He had noticed that I was using Thursdays as recovery after the orchestra rehearsals then I would have a late Friday evening rehearsal with this woman's group and use Saturday to recover. By Sunday I would be catching my breath so Mondays, Tuesdays and Wednesdays were great but really the rest of the week was not healthy for me. I had to choose and the orchestra had won. She was disappointed but understood. I am rather relieved I finally told her. I also feel relieved that I won't have to rehearse on Friday nights as I miss those evenings with Michael. 

It was a day of beginning to feel and understand the yoga instructions, being a needed ear for Anna as she is making of plans for Matt's memorial service and the ending of the work on the Mustang and my relationship with the small performance group. In a word? Life. As the doctor still reminds me, I should have been dead or transplanted about five years ago. But, with my determination, diet, exercise, medications and lots of luck, I am so grateful to be here experiencing the highs and the lows. The joy and the sadness. The flow of life. 

Wednesday, February 20, 2013


I am looking at frost on the roof behind us. It is one very cold morning, the heat came on through the night which is very unusual for us. What happened? It was in the 70s last weekend!

After not sleeping well for a few nights, I finally feel like I am rested. Almost a relief. The plans for today include the yoga hell class, meeting Natalie and the kids for lunch and orchestra rehearsal this evening. Hopefully, I will sleep well again tonight.

I feel like right now is a lull before a storm. A quiet time before all heck breaks loose. I don't know what is coming but I can feel lots of changes in the air. I always get nervous when I feel this as it means a lot of adjustments and different ways of thinking and new lessons to learn. Tough times ahead. We'll see what happens in the next few weeks.

With the cold weather has come coughing. I learned that when I reduced my prednisone to 12.5 mgs, I coughed constantly. When I went back up to 15 mgs, the coughing stopped. Right now, I am finding myself coughing a lot. Hard, deep coughing. It will be interesting to see what my pulmonary function tests numbers are next week. I have a feeling they are going to be down from my lows of last time.

Tuesday, February 19, 2013

Naggings in my Brain and Menus for the Week

Lamb Gyro Burger with Greek Salad
One of the recipes for the week
Mom and I both feel that we did a good deed yesterday. Peg was so thrilled to be with her for a few hours as we celebrated her 92nd birthday. It involved a lot of driving and energy and I didn't get home until past rush hour but it was so satisfying to see my mom and her friend together.

In two weeks, I will be having an echosonogram for pulmonary hypertension, PFT tests and a meeting with Dr. K. to discuss the results all in one day. During the ILD Support Group Luncheon last year, I spoke with a doctor whom I have admired, an expert on my disease and the doctor who has been overseeing my case. I told her that I had been struggling with bronchitis since March and she later advised Dr. K. to have me tested for pulmonary hypertension. It was rather shocking to me to see that one of the symptoms is an enlarged pancreas and liver, both of which I have and are being monitored by the Liver Clinic. I so hope I do not have PH as that is really bad news. The test was negative several years ago when a CT scan suggested that I might have it.

Nervous. Apprehensive. Anxious.

It may explain why I have not been sleeping well. That is nagging in my brain then it suddenly switches to the upcoming memorial service for Matt. Not only am I anxious about all the things I need to do before we leave for a few days but I am more worried about dealing with the twin and his wife. It is going to be a dance to physically stay away from them both in Anna's little house after the services. Wedding and funerals always bring emotions to the surface and people say things they later regret. I don't want to be drawn into any conversations or say anything at all that can later be misquoted.

This morning, I am having my hair done, grabbing some groceries and trying to take it a bit easy. The dinner recipes for this week are below. I make each recipe to serve either 4 or 6 servings and then we eat the leftovers for 2 or 3 days. Enjoy!

Gyro Burgers with Greek Salad - I buy the Trader Joe's Tzatziki Sauce instead of making it -

Ginger Beef with Broccoli - with rice for Michael -

Red Enchilada Chicken - I cut the chicken breasts in half for each serving - I will serve this with a vegetable -

Pork Chops with Walnuts and Blue Cheese - This recipe is no longer available online so cook four 4-oz pork chops and mix the following together to serve on top of the hot pork chops:
Roast 1/4 cup chopped walnuts in a pan.  Mix the slightly roasted nuts with 1/2 cup Roquefort cheese and 2 chopped green onions. I serve apple sauce to Michael as well as a side salad. Makes 4 servings.

Monday, February 18, 2013

Memorial Service Plans

 Michael and I spent time enjoying the back garden yesterday even though it was not too warm but at least we had sunshine. Michael spoke with his sister Anna and the plan is that we will be driving down to her home on the Thursday before the Friday funeral for Matt then leaving early Saturday morning. I think it is so kind of her to invite us to stay at her home, especially since she is expecting family back to her home after the services. Planning a funeral, serving food afterward and us as company. That is a lot to deal with. I need to remember to order a concentrator from my oxygen carrier to be delivered to Anna’s hours for those two nights.

William and Kimberly had planned to be with us around that time so we are trying to arrange their visit just after we get home or even before we leave. They would love to stay at the house a few extra days with its access to the city while we are gone. Michael is going to connect with him today. 

This morning, mom and I are driving the two hours to visit my dad at their crypt and install new flowers to celebrate the coming spring. Afterwards, we will drive another half hour to my mom’s former town to celebrate the 92nd birthday of her friend Peg. She was the wonderful woman who helped my mom live again after my dad’s sudden death as she had lost her husband about a year earlier. They cried and grieved together. They are dear friends and both are so looking forward to spending some time together today.

It will be a long day but I am grateful that I can do this for my mom.

Sunday, February 17, 2013

Working Through Grief

It is set. The full military funeral and burial in a National cemetery in Riverside for Michael's brother Matt is scheduled for March 8th. Michael's sister Anna is going to host the get together afterwards. Our plans at the moment are to drive the eight hours down to Riverside the morning of the service, stay a bit to see all the relatives then leave heading north to Highway 101 onto Highway 1. From LA to our front door along the coast is a total of 12 hours. We have not driven it since our honeymoon 40 years ago! We will stop for the night somewhere along the way.

I was deeply in the garden and barely heard the phone when Anna called yesterday afternoon. We talked about the services and Matt while I continued to work in the garden. She cried several times. Michael was telling me that it is hard for him to think of his family of five siblings being suddenly reduced to four. He said I would understand one day if one of my siblings dies before me. It must feel strange.

I am happy the services are going to happen sooner rather than later. It has been hard to begin the healing process for his mom until her son is buried. The family was trying to put it off for a few months, which I thought was rather cruel. I remember when my dad died and it was almost a week before his burial. We felt our lives and emotions were put on hold until we saw him safely entombed. It was only then that we were able to begin to put one foot in front of the other and try to return to life. Here is what I wrote about going through the grieving process for my dad:

It will also be the first time in 25 year that the twin, his lovely wife and the two of us will be in the same room together. My job will be to make no conversation with either that can be misquoted. I will keep myself surrounded by witnesses!

This morning, I feel my seven hours in the back yard gardens in my arms and hands. My poor hands!  There are bruises and there are a few scabs. The earth was so hard that I hand turned all the beds with a little trowel. I slept like a baby last night!

The weather has changed and the couple days of summer have returned to winter this morning. It is cool and overcast. I am going to take it easy all day to recover because tomorrow is going to be a long day.

Saturday, February 16, 2013

Wishing for Summer

I have a photo of mom's foot but I don't think anyone would want to see it. It is rather strange looking, minus the second toe. The stitches are out and we need to go back in two weeks for a peek to make sure it is healing properly.

When we were making that appointment with the one out of six schedulers for mom's doctor, she mentioned to her next cube-mate that she had the vegetarian tamales. I said, yummmm. She said that it was a fundraiser for someone and asked if we wanted one. I said that I loved tamales but just can't eat them anymore, she asked if it was an allergy and that began the story.

When this sort of thing happens, I try to keep it to just answering questions, but they - the cube-mate rolled over to listen - kept asking more questions! We talked about the cause of the disease, the Worker's Comp claim and even the disgusting Warren Buffett and his shoddy long-term disability insurance. But mostly, we talked about my diet and exercise program and my new entry into the world of yoga. What I have discovered when I now talk about yoga, is that I am the last person on earth taking their first yoga classes. Everyone takes yoga! Who knew?!

Into the gardens I go. Yesterday was in the 70s and most of today should be the same. Perfect weather for cleaning up the gardens from the winter. It all should be much cooler by tomorrow and we are expecting rain on Tuesday! Back to winter! It was nice to haul my sandals out from the back of the closet, even for just one day. I am so ready for summer!

Friday, February 15, 2013

To NieNie with Admiration

"But even with all that others were willing to offer me, I realized along the way that ultimately nothing they did could make me happy.  I felt comforted by family and my faith, but peace was different from happiness.  At first I thought stubbornly that the only thing that would make me happy was for my life to look like it did before the accident.  But no one could give that to me, and no one else could make me happy. Happiness was my choice, and though it is hard won, I am the only person who can stand in the way of it."
-taken from my memoir, Heaven is Here. 

This was the blog from the NieNie Dialogues this morning.  
She is the young wife and mother who suffered devastating burns from a plane crash. I deeply admire her ability to put her feelings into words and to be brave enough to face a very "beauty-driven" critical world. Her scars are dramatic and sometimes people's comments bring her to her knees ("You look like a monster!") but she continues to live her life, love her husband and raise her children. She carries on. She has chosen to live life to its fullest with joy and happiness.

I remember how it felt to hear the words that I had a devastating illness. From that moment on, choices were made on how to live the rest of my life. Do I want to fall apart, throw the hand of cards on the table, lay in bed all day with depression, make everyone around me miserable? Or, do I want to learn as much about the disease as possible, get up and make a plan for everyday, remember to smile and be nice to others, remember that the disease does not define me, not waste an extra moment of the remaining time in anger or self-pity? It is a choice. How are you going to play out your hand? NieNie made the decision very early in her recovery. She still had children to raise. What is your motivation to continue on and live well with a bad diagnosis?