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Sunday May 10 2015 DAY 64 WHAT A MIRACLE!
The first miracle is that I actually attempted to write a blog last night. I did not proof read it until now and I am embarrassed. If you read yesterday’s blog you might want to re-read it. I just hope I found all the mistakes.
Today was another one of those wonderful, full of new surprises and wonders. Just life alone is a new surprise to me every day. What a miracle each day is when I arise and know I am still here. There is nothing quite as beautiful as an undisturbed day, yet to be lived.
I attended my second Calvary Chapel Church on my trip. The last one was in Modesto two weeks ago. This morning’s service was quite a bit different that the previous Calvary Chapel. Different presentation of teaching. The message was very interesting and simply stated. It is always a fresh new experience to visit the churches where my friends attend. I love being able to picture in my mind where my friends live and worship.
After the church service we visited awhile with Rebecca’s friends, enjoyed some refreshments and then walked to her house. Yes, we walked. The church is actually two short blocks from where they live. Rebecca lives in an industrial park area. She and her husband manage a 660 unit storage area. The facility is enclosed with tall wrought iron fencing. There is a beautiful building inside the iron fencing which is the office area for the business. Above the office is a full 1600 square house. A beautiful dwelling place. It has large rooms with lots of windows all around it. The windows overlook the APPLE COMPUTER facility next door. There is around the clock surveillance at the Apple computer headquarters right next door. Being in a house, on the second floor, behind a locked gate, within the “compound” storage units makes me feel like we are protected. Protected from what I do not know. ‘
We both went to the gym where Rebecca is a member and worked out for over an hour. It felt so good. Please look below and note that I have posted a new picture. It is off Rebecca and Eddie and his son’s family (the only one of their five children that made it home for Mother’s Day. We had a feast around the table. Rebecca is such a good cook and seems to do it so effortlessly.
It was a really delightful time around the dinner table with Rebecca’s son and family.
Before the company arrived Eddie and Rebecca told me the story of their last 14 years. Here is the story of Eddie’s MIRACLE. It is a story with many lessons.
In 2001 Eddie developed a rash that was all over his body. It itched with an intensity of pain. He was treated by several doctors with creams and prescriptions. Nothing seemed to help. He went to several doctors only to be prescribed more salves and topical creams and medications. The suffering was intense. In 2006 Eddie was in the room with several doctors and each one had different ideas. Eddie raised his hands and exclaimed in a loud voice that that was it! To stop all the talk about prescriptions and creams and to find out what was wrong with him. He told them he would not take another pill or cream until they found out what was wrong no matter how long it took and how many tests it took. THAT WAS IT! So they did a blood test and said not to be concerned and they would call him with the results. No one called on the first day. No one called on the second day. On the third day he received a call and was told that he had to come in immediately.
Rebecca and Eddie went together. He was told he had T-Cell Lymphoma and that there were some treatments for it. His was in stage 4. The doctors talked to them for awhile and they left. As they walked out Rebecca said to Eddie, “I think they just told you that you have cancer”. Eddie said he didn’t hear the word cancer. All Rebecca knew was that lymphoma is cancer.
Again Eddie was put through many different treatments. After many “treatments” there were 4 more options since the previous 6 options had not helped. His T-Cell count was up to 30,000 when it should have been in the 250 count range. There were many situations that came up that led Eddie to being chosen to do trials at Stanford hospital. He knew someone who knew the leading Doctor at Stanford whose specialty was working with T-Cell lymphoma patients. When he saw this doctor she told him that anyone in his condition will be dead within one year. He was chosen (the 10th patient) to do a trial medication procedure to lower his T-Cell count. The telling of his story was horrendous as to what he went through. When the white blood cells were almost extinct (as he lived in isolation) he had a window of time when he would be able to have a bone marrow transplant. The bone marrow implant was also being done on trial. He was one of the first few to receive the transfusion in the manner I describe below.
Three live donors were found. The best match was a man in the armed service serving overseas at the time. The U.S. government actually flew him to the states so he could be the donor for Eddie’s transplant. There were so many grueling situations that Eddie had to go through to get to this point. Multiple biopsies in the flesh and in the pelvic bone. Several different procedures were done while he was awake due to certain situations. Unbelievably painful according to Eddie’s description.
The bone transfusion was actually not painful at all. It was just getting to that point where his body would be suppressed enough to not reject the new morrow that was grueling. In the not too distant past the bone marrow transplant procedure was much more complicated as the while bone cells were harvested from the donor’s bone marrow and then through surgery deposited into the recipients bone. Now, however, the donor has blood drawn and the lab extracts what is need out of the blood and the patient then receives it intravenously. The T-Cells deposited in the blood stream make their way into the bone and set up taking over if not rejected. Well, Eddie’s body did not reject them. He was hospitalized until is was safe for him to be with people again. The doctors told him if it worked it would take two and one half years before he felt back to normal. After the transfusion Eddie was unable to eat anything that was not cooked, drink no water that was not boiled for many months.
They waited. Once the food restrictions were removed Rebecca started him on a regime of healthy eating, no sugars, and additives that increased his healthy. Eddie said it was exactly two and one half years before his body felt like it was back to normal.
Eddie sat across from me today as he and Rebecca told the story, each adding a bit of their own feelings and facts to complete the story. I wish it had been recorded because I have left out more than half of the experiences they went through. The greatest lesson I learned while listening to this is that we must be our own best advocate. Four years he went from doctor to doctor before putting his foot down and saying NO MORE! Only then was he taken seriously and in two days he had a diagnosis. The second thing I learned was that you need a recorder with you so you can look up all the words the doctors tell you, especially when they skirt the issue of saying the word CANCER. Eddie walked out of that consultation not realizing he had just been given a cancer diagnosis. And the third thing is that you need to take someone with you to receive any news that comes from a telephone message telling you to come in immediately.
Eddie told so many other stories related to the hospital personnel that were so attentive and caring. Had it not been for diligent nurses willing to stay past their line of duty to get him over near death experiences he wouldn’t be here today. The doctors may have the education to diagnose (sometime), it is the hospital staff and nurses that do most of the work in the hours between the appointments. Eddie went through hundreds of hours of treatments, some with very serious results.
Today Eddie is alive and strong and leading a life with his family, his wife, 5 children and their mates, and all his grandchildren, (of which I have lost count) with more on the way. I remember all those years he was struggling for his life as I read the email messages sent out.
Even the doctors know that Eddie is a walking miracle. A miracle that he was diagnosed because this disease does not usually get diagnosed for up to 10 years after the first symptoms. A miracle that he was connected to the doctor in Stanford. Another miracle that his chart was perused by a doctor with the clinical trials in mind and saw that Eddie fit the criteria for the trials. Eddie went in for more blood work in March 2015 and was old that 29 patients have now had this treatment with a survival rate of about 50%. So it is working for some.
It worked for Eddie.
I am celebrating this time of life with Rebecca and Eddie. I told him I am so glad to see him alive. They are dear dear friends to us who we have know for 41 years. I thank God for this miracle!
I asked Eddie what his wisdom for the world would be. Here is his response:
“If I had one book to give you I would give you the Bible and tell you to read it for it is the map of life. Everything you need to know about living your life is in those pages.”
Rebecca’s wisdom is”
“When you choose your life mate for life remember you are TEAM MATES FOR LIFE — NOT ADVERSARIES!”
Please read the article below taken from a website regarding the SEZARY SYNDROME which interpreted means T-Cell Lymphome”
What is Sézary syndrome?
Sézary syndrome is an aggressive form of a type of cancer called cutaneous T-cell lymphoma. Cutaneous T-cell lymphomas occur when certain immune cells, called T cells, become cancerous; these cancers characteristically affect the skin, causing different types of skin lesions. In Sézary syndrome, the cancerous T cells are called Sézary cells and are found in the skin, lymph nodes, and blood. A characteristic of Sézary cells is an abnormally shaped nucleus, described as cerebriform.
People with Sézary syndrome develop a red, severely itchy rash (erythroderma) that covers large portions of their body. Sézary cells are found in the rash. However, the skin cells themselves are not cancerous; the skin problems result when Sézary cells move from the blood into the skin. People with Sézary syndrome also have enlarged lymph nodes (lymphadenopathy). Other common signs and symptoms of this condition include hair loss (alopecia), thickened skin on the palms of the hands and soles of the feet (palmoplantar keratoderma), abnormalities of the fingernails and toenails, and lower eyelids that turn outward (ectropion). Some people with Sézary syndrome are less able to control their body temperature than people without the condition.
The cancerous T cells can spread to other organs in the body, including the lymph nodes, liver, spleen, and bone marrow. In addition, affected individuals have an increased risk of developing another lymphoma or other type of cancer.
Sézary syndrome occurs in adults over age 60 and progresses rapidly; historically, affected individuals survived an average of 2 to 4 years after development of the condition, although survival has improved with newer treatments.
Although Sézary syndrome is sometimes referred to as a variant of another cutaneous T-cell lymphoma called mycosis fungoides, these two cancers are generally considered separate conditions.
Goodnight. It is 1:40 a.m. on the 11th. This is my May 10th blog documentation.
May 9, 2015 Day 63 THE TOWER CAFE
I am quite good at not remembering to take photos on my IPHONE. I wanted to put a photo up of the Tower Cafe in Sacramento California. What a sight. Tower Theater was built in 1938 and is impressive in height and style. Adjacent to the The Tower Theater is the Tower Cafe, both indoor and outdoor dining. Well, that is where I met my two nieces for lunch. One problem. I was very hungry and there was an 90 minute wait. We waited.
I left Jeanette’s home with a farewell and headed north for the city of the State Capitol Building. I’ve been there many times while growing up but if I have a chance I would again like to tour the capitol. It is truly a beautiful building, much like our own state capitol building in Madison. But today was family day.
The nieces I met up with were children of my sisters. Scarlett’s daughter, River and Faith’s daughter, Ericka and Ericka’s daughter, Lilly, who is 5. And we all waited until our table was called up. It was worth the wait. The food was good as was the outdoor atmosphere with a shade umbrella over our tables. It was a pretty sight to behold. The food was delicious, the talk was interesting, the decor a chaotic scene of amazing clutter and color. I took a picture inside but it was only on my camera and not my cell phone. When we finished eating we left and all drove back to Ericka’s home. Later in the day Ericka’s husband came home bearing gifts. Bags and bags of fresh produce bought from the farmers market. He made a pot of beet soup. It was tasty and delicious.
There is so much I would like to relay to you but I am extremely sleepy and must get up early for church in the morning. Just wanted you to know I was hanging out with the “fam” . In Wisconsin I had to grow my own extended family through one son and one daughter. But only our son stayed in the area. I can’t tell you how good it feels to know that you have family close even if they are over 20 miles away. Remember when your kids move away and stay within driving distance you have another place to go for dinner. And it is really nice.
While driving today I notice lots of farm fields and orchards and even some wineries. I loved these farm fields even as a young child. I was surprised at how slowly the area has grown between San Francisco area and Sacramento I think I am falling asleep in my chair so I must go.
River’s words of wisdom today are “Forgive and make amends quickly.”
Ericka said something profound but I didn’t write it down. I will find out what she said and post later. My brain is on overtime right now and ready to shut down.
Do want you to know however, that I arrived at my next destination all in one piece. I am in a town right next to Sacramento called Elk Grove visiting with Rebecca and Fred Edward (whom I always knew as Eddie). He is a walking miracle of life. I’ll find out exactly why and tell you tomorrow or some other day. It is an amazing story. We have known Rebecca and Eddie since we married and have lots of fun memories of those days long ago. They have 5 children and it is good to get caught up on all that is happening in their lives.
I am going to bed now at 11:29.
Good night.
s