Living Well with a Bad Diagnosis - Lung Disease

Tuesday, May 31, 2011

Lung Transplant Information #3 - Waiting on the List



We have previously reviewed the Evaluation and Listing process for a lung transplant. Again, the process is:
Evaluation
Listing
Waiting on the List
Being Called in for Transplant
Life after Transplant

Today, I will pass along what we learned at the Lung Transplant Clinic last week. Following the lung transplant process, next is Waiting on the List.

Waiting on the List – one must be available 24/7. If the team can’t reach a potential candidate, they move down the UNOS list to the next appropriate person. There must be transportation available to get to the hospital quickly.

I learned that the donor does not actually have the lungs removed until the receiver is in the hospital; blood tested and set up for surgery. The goal is to have the lungs exposed to the environment and not hooked up for the shortest possible time. If there is a change in the receiver like an infection or illness, one is removed from the list until recovered.

The goal, of course, is to find the right donor. Most of the donors come from the area around the transplant hospital. It is rare to have them flown in from other areas. The donor lungs must be from someone with the same blood type and the same approximate size. Lungs too small will not support the body and too big will not allow enough room for the lungs to fully expand. The actual chest wall of the receiver is measured during the testing process. The other consideration is the Lung Allocation Score.

Tomorrow, I will write about Being Called in for Transplant.

Monday, May 30, 2011

Lung Transplant Information #2 - Listing



We have already reviewed the Evaluation process for a lung transplant. Again, the process is:
Evaluation
Listing
Waiting on the List
Being Called in for Transplant
Life after Transplant

Today, we will follow the listing process. The entire lung transplant team meets in a weekly selection meeting to discuss patient cases. After gathering all the information, it is now the time to determine if the patient is sick enough yet well enough to be a transplant receiver.

Once the person is approved to be listed, there needs to be an insurance authorization to cover the surgery itself, the time in the hospital and the extraordinary financial burden of the post-transplant drugs. When the patient is told that all is in order, their data is entered on the UNOS secure website. UNOS – United Network for Organ Sharing – which is the national overseer of all transplants of every organ.

At this time, the patient is given a Lung Allocation Score (LAS). This number is the way to determine who receives donor lungs based on medial testing completed during the evaluation process. The number is determined by UNOS at the time of the listing. The score is 0-100. 

UNOS takes into consideration the medical testing and other information like oxygen needed at rest, age, BMI, diabetes, functional status and diagnosis. So, what number do you want? Kind of hard to get a straight answer. Seems to be a lot of leeway.

The average score for those waiting for a donor at home is 35-50ish. For those on ventilators in the hospital waiting for a donor, the score is between 70 and 90. Those people would be ahead of those waiting at home.

We asked and discovered that the average time on the list in my area is 3-5 months but sometimes it can be just one day.

Tomorrow, we will look at the next process – Waiting on the List. 

Sunday, May 29, 2011

Lung Transplant Information #1 - Evaluation

We were able to see a power point presentation while at the Lung Transplant Clinic last week. The Transplant Coordinator, K. K., walked us through it and we learned so much. Here is what we learned:

The entire process was reviewed:
Evaluation
Listing
Waiting on the List
Being Called in for Transplant
Life after Transplant

Today, I will pass along what we learned about the evaluation process.

The beginning of the process is the initial meeting with a Pulmonologist and possibly a Transplant Coordinator, Social Worker, Dietitian and Financial Coordinator. The Pulmonologist will make a decision as to proceed with the evaluation process.

In my case, the doctor felt that I had a downturn and my numbers are horrible, but they are always horrible. I appeared to be stable and functioning. At this point, she said that I am under their auspicious in case there is a sudden downturn. With that, she sent me back to Dr. K. until she feels the transplant team should see me again, hopefully not for many years.

But, let’s say that it appeared that I was ill enough to be an appropriate candidate for a transplant in the near future. There are a lot of test done at this point.

There are tests to:
            See how sick I am
            See how well I am
            Insure there are no current infections
            Check my esophagus.

I guess the tests are to determine that one is ill enough for a transplant yet well enough to survive the process. During the surgery, immunosuppressant drugs are introduced so it is important that there are no current underlying infections. They also want to insure that no acid reflux is going up and into the fresh new lungs.

Here is the list of testing:
Blood Tests
PFT’s
6-Minute Walk Test
CT Scan
Chest X-ray
EKG
Echocardiogram
Cardiac Catheterization
Abdominal Ultrasound
Urinalysis
24 hour Urine Test
Bone Density Test
PPD – skin test for TB
Vaccinations – Hep A., Hep B., Tetanus, Pneumonia, Flu
PAP Smear
Mammogram
Colonoscopy
24 hr pH/manometry
Dental Clearance

Dear reader, that is a lot of testing. When they are all completed, it is then time to meet once again with the pulmonologist, surgeon, transplant coordinator, social worker, financial counselor and cardiologist.

Tomorrow, I will write about listing a person in the national registry – UNOS –when one is ready and waiting for a donor.

Saturday, May 28, 2011

Lung Transplant Clinic Visit #1 - Introduction

Photo of a lung with fibrosis from an interstitial lung disease (ILD)
We visited the lung transplant clinic Thursday morning. The good news is that even though there is an increase of fibrosis in my lungs, I am stable. My numbers are horrible but they have always been horrible.

They referred me back to my wonderful Dr. K. to monitor me until I need to take the next steps. They said that I am too stable and, if I don't crash which is an issue with my disease, it should be many years before I darken their doorway again. I am now in their system and that is good. They told Michael to get me to their hospital if anything out of the ordinary happens. 

We looked at each other and realized we were just given our lives back. We also learned that it is very common for transplants recipients to be 70-years old. 70! Jeez, I was happy just to make it to 60! So, we are back in the land of the living. We also learned more about the process and met with amazing people, which removed the fear and doubt about receiving new lungs. 

We felt like we dodged a bullet. We both took a deep breath and realized that indeed, we will probably grow old together. That is all we really wanted.

We learned a lot. In the next few blogs, I will pass along a lot of information about the process of a lung transplant that was presented to us at the clinic – before, during and after transplantation. Many thanks to them for this information.

Tomorrow, I will blog about the evaluation process.

Friday, May 27, 2011

No Board Sitting

Last week, the current board of the local orchestra asked me to sit on their board. I was touched. They even said that I would not be assigned any work but they just wanted my input.

I do have a tendency to take over and run anything I do. I had made a vow to Michael that I would just be the bass player in the orchestra. I would offer no opinions nor be involved any further.

So, I mentioned it to him. He reminded me that I am facing a lot of lung transplant issues. He reminded me of my promise not to get involved.

I told the head of the board that I would have to decline. They understood my decision.

I did mention that I could meet with anyone over a cup of tea to discuss any issues about the orchestra. 

Thursday, May 26, 2011

Appreciated Contact



I received a long e-mail from my friend Lois from the other rehab that really touched me. I can’t tell you how much I appreciated her words and emotions. Here is just a portion:

You have made such a difference in the lives of so many people--your doctors, your fellow lung sufferers, your rehab companions, and me.  To see such courage on a weekly basis has been really inspirational for me. Your joy in life, your trips, even your fights with the insurance companies, have all been very heartening in my own fights to keep Peter alive and functioning.  So do not be downcast.  Upset, yes, but come to terms with what is possible and keep up your hope in some outcomes that may be better than they look at the moment.

I feel that maybe all this was not for naught.

Tuesday, May 24, 2011

Angel's Trumpet

Our friend, whose wife has lupus, had a medical scare. She combined an over the counter drug with her other drugs and was within an hour of death. She had developed an e-coli based pneumonia in her lungs and it was winning. She spent a week in ICU and is now home.

She phoned. The news was scary but the good news is that this episode had opened her eyes. She had spent the last few years totally drugged and lying in bed all day and night. She demanded to be waited on. Her weight dramatically increased which had made everything more difficult.

She is now walking and staying out of bed. She was proud to tell me that she walked around her house 24 times yesterday. Her next goal is the mailbox and from there, she plans to eventually walk around the block. Baby steps. Such a positive change. I guess she has finally chosen to live well with a bad diagnosis.

Because of all my long phone calls yesterday – even Christien phoned from North Carolina and we chatted for a couple of hours – my portable phone went dead in the middle of the conversation with our friend’s wife.

I ran to our bedroom to plug in the FAX machine and grabbed that phone when she tried to reconnect. So there I sat, on the floor of our bedroom looking into the garden.

Last summer, we planted an Angel’s Trumpet plant just outside our bedroom window. We were thrilled when the first blooms became to expand to produce the most wonderful, huge trumpets. It was rather windy and I was delighted to watch the large bells appear to “ring” with the breeze.

It was just a reminder to me to appreciate the little things in life and that, even with the scary downward change in my health, life goes on. The seasons change. The earth abides.

Sharing the Bad News

I decided I needed to tell my mom and siblings about the downturn of my health before I would be able to move forward. So, I phoned mom on Monday morning. I was able to tell her everything without breaking down. I tried really hard not to scare her.

We have been expecting this fibrosis to happen and have been so lucky these past years.

She made a statement about how worried Michael must be. In reality, he is so beyond worried. I think we are both just frightened by the prospect of having to have a lung transplant whether we are ready or not.

With one hard phone call under my belt, I phoned Betty –my brother’s wife – to tell her the whole story. She totally got it. I wanted them to hear it from me because Chip phones my mom every Monday. He is a good son.

Later last evening, I phoned my sister. She is leaving on a business trip today and will be stopping to see mom for coffee when she drives through her town. She needed to be told before she sees mom. In the less than 3-minute conversation, 90% of it was about her. She didn't get it. She was not affected by the news in anyway. Weird.

Monday, May 23, 2011

Days Later

So after the hearing the news that I would need lung transplants sooner than expected, we have yet to tell many people. I must tell my family soon.

On Friday, I ran into our next door neighbor Ron. After chatting, I told him. He was the first. I was able to do it without crying. On Saturday while working in the garden, Vicky strolled over from across the street. After we talked for a bit, I told her, too. It was becoming easier to say the words without tears.

Also on Friday, Michael was only able to share the bad news with his boss and the twin. He had a hard time keeping his emotions under control. I told him that I discovered that actually talking about it made it somehow easier. On Sunday, he was able to tell his best friend Wayne without tears.

Mentally, I am preparing to tell my mom. Once that is over, I think I will be able to not feel so much stressed about it.

On this Thursday morning from 8:30 to noon, we will be at the Heart and Lung Transplant Clinic at my university hospital to have the entire process laid out for us. I am craving information.

So, the lists begin. Funny, but the first thing I want to do is write my obituary. I also need to set up the filing system to make everything very clear for Michael and William. That is going to be a lot of work. I also want to prepare an e-mail to send to the Head of the school where I got sick to be sent just as I am going into the hospital for the transplants. I also want to send an e-mail at the same time to our wonderful Workmen's Comp lawyer with our thanks.

With all that on my brain, I am heading to rehab this morning then to a fabric store. Winnie's brother Oliver is going to celebrate his 1st birthday the first weekend in May. I made a quilt for her when she was little but never made one for Oliver. It is time.

Sunday, May 22, 2011

Do You Want to Meet Me?

It is something that has been playing in my mind. What if I arranged to be somewhere like a café or a park at a certain time, would you like to have a conversation? I still want to remain anonymous in this blog but I think I am ready to step out to reveal myself in person.

I even had a fantasy of being able to do this while we travel through different cities, if there is any interest at all.

What do you think?

Saturday, May 21, 2011

Winnie and Cooking

I needed a break from the bad news. What better way than to have my favorite 4-year old over for a few hours? Winnie, her mom and brother Oliver came for a visit yesterday afternoon. Just what the doctor ordered.

Several visits ago, I noticed it was time for a change during their visits. Having Winnie at my home was becoming a bore for her. I just didn’t have enough things to keep her engaged. The light bulb went on over my head.

Cooking.

I believe children need to learn how to cook. It not only builds confidence, it is great to learn how to measure and follow directions. It also is fun and delicious!

I pulled out the old Klutz Cookbook for Kids that I used when William was young. Our favorite recipe was homemade applesauce. It you have never eaten it, it is an entirely different experience. You will never buy another jar of applesauce in the store again.

Winnie and I went over all the recipes in the cookbook and talked about what we would cook. When she arrived on her next visit, she was ready to cook the applesauce. I tied an apron around her, had her wash her hands, put a towel down on the counter and had everything set out and ready.

We read the recipe together. The recipe called for an adult assistant to help peel and dice the apples. Natalie and I were forever after called her assistants! We placed the apples on a plate then Winnie would toss them into the pan. She measured the water and sugar and spices, gave it a stir then set it on the stove.

When it was cooked, we let it cool a bit. We transferred it to a bowl where Winnie slowly and carefully smashed the apples, which were magically transformed into applesauce. The taste test: the best ever. Even Oliver had some. The rest was taken home to share with dad. 

Her next visit, we made hot dogs wrapped in refrigerator crescent rolls. She loved them and again brought the rest home to share with dad.

Yesterday was a true cooking experience. We made an Ambrosia Salad. It was a fruit salad of mandarin oranges, apples, bananas, pears and strawberries along with marshmallows mixed together in a white dressing of slightly sweetened sour cream. Winnie to cut the strawberries and bananas and did the mixing and measuring. She was not too sure she would like it. It only took one small taste and she ate two smalls bowls! She brought the rest home for dinner.

After we cook a lot of different foods, we will work together to create our own recipes.

Cook with your children or grandchildren. It is a lovely bonding experience and will build a life long love of preparing homemade healthy food.

Friday, May 20, 2011

VERY, VERY BAD NEWS

  My twice-yearly visit with my lung doctor, Dr. K. was Wednesday. I was excited to surprise her with my recent weight loss and hitting the qualifying BMI to being the lung transplant qualifying process. I hoped never to have to have a transplant but I thought it would be smart to get qualified.

She was so surprised to see the weight loss! She sent me for two quick Pulmonary Function Tests, blood tests and an x-ray to be sure the pneumonia was gone from last December. She also wrote the referral to the lung transplant group. So, the 6-month qualifying process of testing every organ of my body will begin. One must be qualified before being on any list to receive lungs.

I was thrilled. I could hold this as long as possible unless I get another disease, which would disqualify me. But, if nothing is wrong with me now, I will qualify.

There was a complication with the transmission of the x-ray into my file. The system was down. Dr. K. asked if I would leave a message for her in the morning to remind her to check my x-ray.

Wednesday night, I called my mom, brother and sister to share the good news. I was now under the BMI of 30 to begin the process of qualifying for lungs, if I would ever need them. It had been my goal. It was a milestone that was reached.

We were so happy.

Yesterday, Dr. K. phone at 4:30PM. The conversation began, “The fibrosis radiography has advanced in both lungs dramatically since the last x-ray in December. I am really sorry to tell you this, as you are such a great patient. The timing of you losing the weight and all of your exercising make you a great receiver for the lung transplants.”

Thunk.

That was my heart sinking. The world swirling. I was alone in the house. Michael was due any minute. It as really hard to hear. I was depleting quickly.

I thought I had more time.

She asked my age and said that it gives us three years to get ready. I don’t know if that means there is an age limit to receive a lung transplant. I didn’t have the sense to ask.

She said again that within 6-months of the surgery, I will have a remarkably improved quality of life. She also said that we need to get my insurance in order and that since she is on the transplant team but also my doctor, she had learned a lot and can walk me through this and offer me unique advice.

Dr. K. also contacted the transplant coordinator to give her a heads up. I should expect to hear from this woman in a few days.

Twenty minutes later Michael drove up. I went out to meet him determined to not break down but to tell him as calmly as possible. He hopped out of the car with his great smile and before I could even get him close, I started to cry.

“I have really bad news.’ He thought it was about one of my rehab boys. “No, it’s me.” We stood out front and both cried in each other’s arms.

I relayed all the information I had and we looked at each other with tears running down our cheeks just stunned.

It is now out of our hands. Did we ever really have control? All the exercise and all the food choices and everything we have done had paid off. I have had a relatively healthy six years. That is now over.

We began to think about my health in the past year and realized that I had lots of infections and needed antibiotics more often than in the past. My lungs were changing and not for the better.

We talked about how we are so grateful that we have traveled so much. That we have appreciated every day together.

We are just not able to share the news with anyone. We can’t look at each other without crying. I want it get it settled in my body before I begin to calmly share it with everyone. It may take a few days.

So you, dear reader, are invited along to follow this whole crazy process with me. It is into unknown territory. We shall to together.

Thursday, May 19, 2011

Crossing a Major Threshold

Tuesday’s horoscope:

SCORPIO October 23-November 20
The Full Moon in Scorpio shows you crossing a major threshold. Perhaps the biggest surprise is in how easy this turned out to be.

I paused after reading this. It was so true. Since the issue with Michael’s twin, I have struggled with my weight. I could go into the personal and psychological reasons for this, but I won’t bore you, dear reader. It is just the fact.

Weight issues are about so much more than just the weight. So much other baggage is tied to it. I have been very careful with my diet through the years after my diagnosis but I was never able to lose the big weight. After working with the nutritionist, Mr. B., he gave me the tools and I guess I was just ready. I was ready to begin to shed the protective layers.

Once the process began, it was rather easy. I never felt like I was hungry or being punished. Now, with the liquid diet, I flew through each group of ten pounds in weeks in what would normally take months. Let me be clear, it is not easy. It is not very tasty. I am trying not to gag while drinking it.

But, it pushed me over a major threshold, just like the horoscope said. I now have reached the maximum BMI to begin the process to be qualified for lung transplants.

What a threshold!

Wednesday, May 18, 2011

Lung Transplant Qualification Decisions


I have a decision to make. Michael and I disagree. Here is the issue: Now that I have met the weight threshold of 30 BMI to begin the qualifying process for lung transplants, when should the 6-months of testing begin?

Michael wants me to begin now. Tomorrow. Immediately.

I want to get my weight lower, get it stabilized and just focus on it. After the liquid diet, I have to return to the low-carb diet while slowly adding food back to my diet. After I am eating three meals a day on the low-carb diet, Mr. B and I will begin the experiments to test if I can add some carbs back into my diet. Can my body process them properly? This should take until the end of the year.

So, I am advocating to begin the 6-months of testing to qualify for lung transplants in January of next year. It will be 2012 – the year of testing. It feels right to me.

Dr. K, my lung doctor and I will be having this discussion today. I want her input before making a final decision.

Tuesday, May 17, 2011

Weight Management Group Check-In

Monday morning found me at the Weight Management doctor’s office. Early. Dr. M-J interviewed me regarding any symptoms or issues from the 800 calorie liquid diet. She had been concerned about my blood pressure. I have VERY low blood pressure and they thought that it might even go lower with this diet. Fortunately, that has not been the case.

I also have been struggling with seasonal allergies for the first time in my life. Lots of sneezing, coughing, blowing and watery eyes. I feel miserable. She suggested Clariton but not until I discuss it with Dr. K., my lung doctor, on Wednesday.

I will see her again in six weeks. Six weeks. I should be over 20 pounds lighter. I hope.

The food on this liquid diet is not great but the quick weight loss makes is more palatable. I am never hungry. I have lots of energy. All is well except for the allergies.

On the positive side, I lost another two pounds since Wednesday. Nice.

Monday, May 16, 2011

Grocery Shopping and a Concert


What a weekend. Sunday morning we went grocery shopping for Michael before my concert in the afternoon. The concert went well and I was so happy to see Jill and her mom in the audience for the first time.

This little local orchestra donates all of their revenue to music scholarships for children in the community. Nice. This year, there were four. One student asked for a scholarship to fix the piano at the local middle school. Love these kids.

While we were grocery shopping at the local “Whole Foods-type” market that morning, I realized that this was actually good for Michael. He has to think and make decisions regarding his food for a week. In the past, I used to get frustrated when I would ask if he needed anything, i.e. cereal, OJ, shaving cream, deodorant. He would say no then run out during the week. Now, he has to return to a store after work to pick up whatever item he didn’t buy. It was milk last week.

He also learned that he needed to buy more vegetables and fruit for a whole week. It is a bit difficult to make a dinner of nothing but protein. Lesson learned.

While I was playing in the concert on Sunday, he made himself dinner. He had to figure out how to cook a New York Steak on the stove top. He was very proud of himself when I got home. It was a success.

I was thinking that these are all lessons learned so he will not starve or only eat out when the time will come when I can no longer shop or cook. 

Sunday, May 15, 2011

A Pain-Free Exhausting Day

Last Friday was a long day. 

I was out of the house at 8:00 to begin the 100 mile trek to my mom's house. We hopped back into the car for another 45 minute drive north to a surgery center. There, at noon, she had the nerves around her broken back "shocked."

The hoped for results was for her to be pain-free for a year or two.

No pain. 

Imagine.

She did great but afterwards, her right leg was just dead weight. It would not work. She fell getting into the car. Her legs could not support her weight.

I was worried. Is this permanent? Is there a problem, NASA? 

On the way home, we went by her high-end grocery store for a Starbucks Chai Tea, a special treat for her, while I bought some food for the next few days. The doctor told her not to drive or leave the house on Saturday.

When we arrived home, I had to run in to turn off her alarm. Halfway to the alarm, I heard a thump. She had fallen down while leaning over to grab her purse. She could not get up on her own. I helped her up and we quickly went to the bathroom where she promptly fell trying to sit on the toilet. I helped her up once again. She could not stand up without help.

I had not planned to spend the night but I certainly could not leave her home alone in this condition. 

Having had no food, we sat while she ate her sandwich. We never stopped talking. Before long, a couple of hours had passed. We tried her legs again, which she claimed were better. I was skeptical because I told her that if she was not better, I was going to bring her home with me. She really didn't want to leave her house. The thought of packing everything she would need was overwhelming to her. That is when I saw her steely determination to get her leg to work again.

And it did. Around 4:30 she was able to get up out of the chair, walk down the hallway and use the restroom all without help and without falling.

A good sign.

I waited until 6:00 to head home when she said she was 90%. So, I drove the final 100 miles home. Michael hugged me. It was a perfect end to the day. But, it did not stop me from worrying all night that she might fall. If she hurt herself, my siblings would never forgive me.

It was a relief to talk with her on Saturday morning to discover that she had a great night and her leg was 100%. Big relief.

I stayed home, cut the grass and napped on Saturday in preparation for today. The final orchestra concert is this afternoon. The week ahead is filled with two days of doctor appointments and rehab. And, I am fighting a cold.

I feel a nap coming on.

Saturday, May 14, 2011

Just the Three of Us - Michael, Mother Nature and Me


There were three of us on our road trip. Mother Nature was along for the ride. Though she had us a bit worried, she behaved herself. Thank goodness.

We missed all the bad weather by one day. Had we left a day earlier, we would have been in the worst of the weather.

We missed the high heat of Barstow, the snow in Flagstaff, the fires in the southwest, the storms in Memphis, the rains in Kentucky, a tornado in Raleigh, 27 tornadoes between Memphis and Atlanta, a blizzard outside of Denver and we enjoyed a rain-free sunny outdoor wedding in Tennessee,

We did hit one bit of bad weather but is happened during the night. In Atlanta, the storm hit right at 8:00PM. We watched it arrive from our hotel room in an older building in downtown Atlanta. It really stormed with lots of thunder and lightening. Because it was a well-built older building, we never heard a thing. Slept like babies. And we had a clean car in the morning.

So, thank you to Mother Nature for being good to us.

Thursday, May 12, 2011

Liquid Diet First Weigh-In

What a day! Yesterday, I did a lot around the house then headed to the city to see the nutritionist, Mr. B. I always get a bit nervous having to drive the 60 miles round trip into lots of traffic and some parking drama. I found a parking spot on the first pass so that was a good sign!

I also arrived an hour early but he took me back into the room after just 30 minutes. We talked. Yes, I am losing my hair, my skin is dry, the food is not very good, my energy is up not down, my oxygen saturation rates are up during rehab and I am never hungry.

Then, the weigh in.

Drum roll, please. 

I lost 8.5 pounds in two weeks. Huge. Amazing.

This along with the 25 pounds I have already lost since Christmas brings me to a grand total of a 33.5 pounds.

GONE.

Forever.

On Monday, I head back to the same office to meet with the doctor assigned to me. Blood tests will happen. She will listen to my heart and lungs. Later in the week, I will also be visiting Dr. K., my lung goddess. She will be so surprised when she sees me!

Wednesday, May 11, 2011

Music on the Road

We listened to some great music while on the road. We often just listened to the local radio stations but we also played our CDs. That was when a couple of funny coincidences happened.

For one of our wedding anniversaries, Michael bought a CD of music from 1973 – the year we married. We popped it into the car CD when the radio stations didn’t have strong signals and listened to it while we were driving from Arizona into New Mexico. At the boarder, the scenery immediately changed and the beautiful colors and vistas of New Mexico were breathtaking. I couldn’t help but think about the Native Americans who, at one time long ago, had this spiritual land to themselves. As we crossed the boarder, the song on the 1973 CD played: Indian Reservation, The Lament of the Cherokee Reservation Indian by Paul Revere and the Raiders.

While on a lazy small road driving through Macon, Georgia the song “Georgia on My Mind” suddenly played. We sat silently as we really felt being in Georgia through the song.

At the end of our visit to Graceland, we bought “The Essential Elvis” CDs which included many of his hits. I loved that they were in chronological order and it was so interesting to listen to the growth of Elvis’ technique and song styling. We played it leaving Memphis on our way to Kansas City. We also popped it in for the final leg into Las Vegas. It just seemed like the right thing to do. Having never been a big Elvis fan, I have grown to respect him and his music.

On the radio, we heard a group of songs over and over again. Endlessly. Through 17 states. Funny.

Tuesday, May 10, 2011

Love Letter to Memphis


On our road trip in April, we spent one day in Memphis before heading east then 10 days later spent two additional days as we were heading west.

We fell in love.

We walked the city. We walked along the Mississippi. We visited Elvis. We toured the Gibson Guitar factory. We walked amongst the families enjoying the Crayfish Festival. We walked Beale Street closed to traffic and filled with Corvettes for the day.

We sat and listened to the music.

The glorious music.

The music of Memphis.

We also ate too much! The Rendezvous saw us twice. We had to eat at Interstate BBQ, which is a standard that was set decades ago. Then, there was that dive on Beale Street where we ate oysters and sang along with the singer.

My heart breaks when I see the flooding. We were just there. We walked where the water now has taken back the land.

We think of all the people we talked with – the waiters at The Rendezvous, the many families enjoying a Sunday afternoon together, the barkers enticing people into their restaurants on Beale Street, the sweet girls working at Graceland who laughed at Michael’s Elvis impersonations and the workers at the Gibson Guitar factory.

Are they okay?

Will the city recover?

Will there be music again?

Our hearts go out to them. They are the pulse of the city.

Take care. Clean up. We will be back.


Monday, May 9, 2011

Mary's Slow Recovery

We were very concerned about Mary, Michael’s mom, for most of the road trip. She had fallen and injured herself a week before we left. We stayed in contact with her about every other day while on the road. She began to sound less drugged and in less pain as the days went by. When we were able to see her in Vegas as the end of the trip, I was so pleased to see her moving so well.

As it turns out, she did not break anything. She did take a hard fall so she was very tender and swollen.

When we drove to our final destination of Las Vegas where she lives, we checked in into the hotel, took a cab to New York, New York and bought lunch to-go for everyone before heading back in a cab to their condo.

We had not seen Michael’s brother Matt in many years. We usually meet Mary at one of the hotels for a fancy lunch. She just was not up to it yet so we brought lunch to them. Matt cried when he saw us. He looked so old. I always picture him in my brain as a twenty-year old strapping young thing. He is 55-years old! Where did the time go?

We told them all about our trip in detail all the while assessing how Mary was moving or seeing if there was pain in her eyes.

It was great to see that she is almost off of all pain medications, got off the couch on her own and walked us to the door when we left. She is a lot further along the road to recovery than I had anticipated. Thank goodness.

During yesterday's Mother's Day phone call, she told us that she is off of all pain medications. Another huge step forward.

Sunday, May 8, 2011

Happy Mother's Day


Happy Mother's Day.

Moms.

So happy I still have mine. No one cares more than a mom.

No one listens more than a mom.

As a mom, I do tend to worry some, as well. I understand from my mom that the worrying never ends, 
no matter how old the child becomes.

My child. 
The phone call will be later today. So much to talk about. So wish he could be here in person.

He is the reason to get out of bed each morning, work out in rehab and fight to stay well 
for as long as possible.

Saturday, May 7, 2011

Rudely Disabled

I met a very nasty older disabled woman. It was not a nice meeting. We had pulled into a McDonalds in a town in Southern Utah on our way to Las Vegas. Michael ordered his coffee and a biscuit while I had an ice tea.

We had noticed an older couple when they pull into the disabled parking spot next to us. It was closer to the door. Michael smiled to the gentleman and said, “I saved the closer spot for you.” The guy just glared.

After we got our order, they sat rather close to us. As Michael was finishing, I headed to the bathroom. I usually like to use the stall marked for the disabled because I am always concerned about germs. I have found that they are usually cleaner because they are used less than the other stalls.

So, there I sat. Going. When suddenly someone banged with their fist on the door of my stall three times. Bang, bang, bang. “Just a minute!” I said.

As I came out of the stall, guess who was glaring at me as she was standing next to an empty stall. Yes, it was her and she was not happy that someone else would dare use HER disability stall. “There you go,” I said as I left the stall.

She never said a word.

Weird. 

Friday, May 6, 2011

Debbie and Family


After we left my aunt’s home in Chattanooga, we made arrangements to meet Michael’s sister Debbie and her family for a couple of hours at a Crackerbarrel Restaurant for breakfast on Sunday morning. We arrived first, of course. When they arrived, I couldn’t believe how much Debbie’s 13-year old grandson Josh had grown since we had seen him two years earlier. So cute. Eating everything in sight!

Debbie had won a huge award at her work and was given a trip to Disneyworld, a luncheon in her honor, conversations with the CEO of her major corporation, lots of gifts and a money award. Nice. She beat out 600 other nominated people.

Michael is so proud of her. She changed her life around. She is living a good life.

Her daughter is also working at her mom’s company while going to school to be a social worker. She had huge issues as a teenager and a really tough childhood. She wants to help other avoid all the pitfalls she found herself in. I love her. She is so positive and outgoing.

A cute conversation with Josh began with my asking him if he still was going into the military. He responded that he and a friend were going to join together and both wanted to be snipers. “But now that won’t happen,” he said. I had to ask why.

“My mom won’t let me.”

Such a typical kid response that it really made me smile. Really love this kid.

As we were leaving, Debbie took my face in her hands and told me how wonderful I am so much that I told her stop or I would cry. Too late. The tears came. We hugged and kissed many times.

Then it was Michael’s turn. I don’t know what she said to him but as we walked to our car alone, I told Michael that she brought me to tears. Michael said, “Me, too!”

We sniffed and cried for a few more minutes before we got back on the road.

Thursday, May 5, 2011

A Bit of a Scare

Every few days on our road trip, I called home to listen to any messages on our machine. I was shocked to hear Dick’s wife’s voice telling me that he was in the hospital after emergency surgery. WHAT?!? My 77-year old rehab class friend?!?

I called his cell phone and a very weak sounding Dick answered. Apparently, he thought he was having a heart attack but it was a serious gall bladder attack. It was removed within hours and he ended up spending five days in the hospital.

At the rehab class on Tuesday, he came to welcome me home, though he was not supposed to even be in a car let alone drive one! He had the same type of surgery that I had during the Nissen: five puncture wounds, air into the belly equals no big scars. It took a full six full months for me to recover. He was driving a car the day he got home.

So, he came to see us. He looked very weak, had lost some weight and moved very slowly. It was difficult to see. We sat and chatted and told stories. He stayed just 30 minutes.

Nothing can happen to my rehab boys. They are both such a huge part of my life. I continue to worry about him.

Wednesday, May 4, 2011

Barefoot Tennessee Wedding


It actually was very beautiful. This trip was inspired by an invitation to my Uncle Bill’s wife’s granddaughter’s wedding. It was on her daughter farm about an hour north of Chattanooga in the middle of nowhere. Really. Nowhere.

Even with specific directions, it was a challenge to find. At one point, we stopped at a convenience store and asked for help. One local woman heard my plea along with the statement that we had the grandmother of the bride with us and we were late and lost. We followed her directions and arrived in time. 

The weather held and it was a most beautiful day. There were two huge tents for the ceremony and the reception. I was told not to wear heals as it was a farm, after all. Well, what I didn’t expect is that the whole wedding party walked down the aisle barefooted. They wore sandals after the ceremony.

The bride and groom were adorable, there was a live band, my aunt danced with the groom, the food was exceptional, we sat at a table with my aunt’s neighbors and really had a nice time. Casual. Lovely. Very well done.

Since the weather was warm and a bit humid and were we high in the mountains, I did have a tough time breathing. Michael was able to go through the buffet line for me and chose all the foods I could eat. Love that man. We sat at a table with my aunt and her neighbors, who were funny and very kind. No dancing for us but is was fun watching my aunt and the groom tearing up the dance floor. I am sure it is on YouTube. That 80-year old woman can really dance.

We loved being in Tennessee. We loved staying with my aunt. We were able fulfill my promise to him by visiting my uncle's mausoleum again. We loved the wedding high in the mountains. I am so happy that I am still well enough to travel. We have made a vow to plan another road trip for the Fall of 2012. New York? Maine? Newport? We will be making those decisions as we dream about being on the road again.