Archive for August, 2014

Dealing With Heart-Breaking News

Needless to say, this visit shook our very being to the core. How do we prepare for the future? What future? “Prayer.” Tony began the process of shutting down his business and selling his delivery van. He was an independent driver through another company that did his dispatching. Our prayers were all ready being answered as the dispatching company bought his van and hired another driver so that Tony could retire as soon as possible. It took exactly a month before the Chemo was started. Tony was so stressed just knowing the cancer was growing rapidly and he couldn’t do anything about it. Tony would be the first to tell you that it was his own fault he had cancer because of smoking. He was taking responsibility for his choices, but being human, we prayed for a cure. He felt his chances were slipping away each day.

I am a firm believer in the biblical concept that states “God does not bring something into our lives that he does not see us through,” nor does “God gives us more challenges in life than we can withstand.”

We were, and are very fortunate to have wonderful family and friends who prayed and cried helping us through each day. We thanked the Lord for every day we had and Tony being a happy-go-lucky guy. He would find humor in each step of the way. Our walk was mild compared to so many people. We would thank the Lord daily for his blessing.

Tony was fearful of the Chemo that it would cause him nauseousness and vomiting etc. He was blessed in the fact that the new cancer treatment being used did not cause him to lose his hair (He always said it was gone already and he didn’t care.) nor would the treatment make him nauseous. It did, however, make him weak and tired. He started his Chemo in January, every two weeks until the first week in May. Sharon and Bonnie J. stepped up to the plate big time in taking us to the Chemo treatments, sitting with me the 3- 4 hours the treatment would take. Bonnie usually took us to the treatments, while Sharon was making her wonderful homemade chicken soups and goodies for Tony. Special friends I call “prayer warriors” would sit with him – pray and talk. He was losing weight rapidly . This 6ft., 200 lb. man soon became a skeleton. He tried to walk several blocks each day, taking Tuk with him.

A dear friend had a four wheel scooter that she wanted me to use, because of my Charcot, and store for her. From April ’till July, Tony’s exercise, or getting out was riding the scooter and taking Tuk for walks.

Tests were done first part of June to see how the cancer was reacting to the Chemo and the fact that his body could no longer stand that treatment. There would have to be another type of treatment started. The doctors said he was to weak to begin another series of Chemo and it was a matter of time. He was getting thinner and thinner not able to eat or drink water and his body organs were shutting down. He was admitted to the hospital on July 13th and left this world on July 25th. It was a blessing and celebration for him to be free of pain and illness and really begin his walk with the “Lord.”

My two sons, Shannon and Chad, and their families were such a source of love and healing for both of us and for me now and always. Shannon and family lived in Anchorage, so were with us a lot. Tony loved to be around the grandchildren, wonderful memories and times. Chad and his wife Jenny lived in California, lots of phone calls. Chad was able to come and visit which made Tony very happy. They were with us at the time of Tony’s passing and just took over doing what needed to be done. They both are such a comfort to me.

Bonnie’s continuing story.

Brought to you by Charcot Awareness Education Foundation

Our Life Path Changes Again

Since Charcot in the right foot was now somewhat in remission. I was finding adjustment to the new prosthesis easier than the first. So, I will share what was happening with the next stage of our lives.

My husband, Tony, had been under such mental and physical stress from my being ill. He was not eating, or resting well and complained of some pain in his abdomen. I called and set up doctor’s appointments for him. When the day would come to visit the doctor, he would find himself too busy to go. He would have me cancel the appointment. This went on ’till the first part of November. He finally went to the appointment. This started a series of tests that took several weeks.

When he went in for the test results, he was told he had pancreatic cancer and that they were setting him up with an appointment with a surgeon to discuss his options in dealing with his cancer. The next couple of weeks were awful. The surgeon was very busy and we could not get in right away. So, Tony’s mind was going crazy trying to figure out what his destiny in life would be.

During this time, we talked and prayed trying to lead a normal life. If Tony were here today, he would tell you that he should have listened to me and not canceled his doctors appointments. Like I mentioned before, he was a heavy smoker and knew the dangers of this bad habit. In one of our conversations, he asked me to not let him become bitter about his destiny. My response to him was, “Honey, I have already been praying about that for both of us.” And I had.

God answered those prayers throughout that next year and for me, He is still working in my life. We finally saw the surgeon on December 20th 2005. At first sight of the surgeon, we both knew we had the right doctor for he was one of the surgeons who had cared for me. I must interject here also that in our talks Tony had told me, “If the report is bad, I do not want to do Chemo.” I told him whatever he decided was fine with me – I would back him up totally. The report was bad, the cancer had spread to stomach lining and liver. Surgery was not an option at this time and Tony had a life expectancy of 7 months.

The surgeon said Tony could do Chemo to try and slow down the cancer but the outcome was the same time frame. I knew Tony’s response would be “no Chemo.” Before Tony could respond the doctor said, “We have a new Chemo that is proving to help pancreatic patients greatly, but is still in a trial mode.” By receiving this Chemo treatment, Tony could help future patients in fighting the disease. Tony said, “If I can help someone else – I will do it.”

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation

Adjusting To A New Prosthesis

The summer of 2005, I was recuperating nicely from the second amputation, a BK cut (Below Knee), on my left leg. I had gone back to answering phones and setting up appointments for the carpet cleaning business. I was feeling better every day. My check ups showed that the amputation wound was healing well. I would be fitted for a prosthesis by the end of August. I was on the road to recovery. Praise God for his healing.

(I interrupted this posting of Bonnie’s as I wanted to know more about the difference in the amputations and prosthetic devices, as well as adapting to the apparatus. She had an appointment with her “prosthesis guy” a few days ago and this was her response.

My visit to prosthetic guy was good. The first amputation I had, because of Charcot Foot, was called a Symes Cut to the base of the ankle. This was in January 2004. The prosthesis is built with two parts, wearing a gell sleve over the stump to protect it from rubbing. Then the outside part or hard part slips over this and clicks into place below the knee. The foot part can cost as much as $30,000 depending upon the type of activity expected to take place. The more activity, running, walking, the more expensive the device. The prosthesis I have now fits up to just below the knee because of the BK cut..

As I remember, the difference in the base & foot apparatus can feel unsteady and moves a bit. I did not feel real steady. I was wearing it the only time I fell. I told Mark that I didn’t remember having any trouble with the new prosthesis for the BK amputation . He said, “No, you wouldn’t the BK prosthesis fits better. It’s more stable and since you were already used to a prosthesis an easy transition.”

My new clam shell is on order for my right foot – will be here in a month or less.)

(For further clarification the Syme’s amputation: All of the bones of the foot are removed thus separating the foot at the ankle joint. The lower end of the tibia is cut leaving a flat end of the bone. An amputee can walk about the house on it without a prosthesis or crutches. His leg is a bit shorter however.

The below the knee amputation often referred to as the BK or BKA is thought to be more stable for the amputee. There are two major techniques. The Burgess technique brings the skin and muscle from the back of the calf forward to cover the shin bones after they have been divided. The other technique the skew flap (kinsley Robinson) is where the muscle of the calf are brought forward same as the Burgess but the skin flaps are skewed in relations to the muscle. The division of the tibia produces a good size stump to which a prosthesis can be fitted.)

Bonnie’s continuing story

Charcot Awareness Education Foundation

Infection: A Silent Destroyer

In re reading Bonnie’s last posting where the suture had been left in her first amputation, a sore developed into an infection which required amputation of another 6 inches of her leg which caused me to do further research concerning infection.

My surgeon was very concerned about infection. I had a very minor one after surgery to correct Charcot in my left foot. He aggressively treated it and it was soon gone. There were signs around the hospital warning people about MRSA.

I was watching a popular TV program that had a guest doctor and the topic was Sepsis. I had no idea what it was, and was shocked when they said more people die from this than diabetes and cancer. It was infection.

I then began to talk with health care professionals and having my husband search the web. There is a lot of information for you to read, so I will break down some of the information for you.

You have probably heard of Necrotizing Faciitis (NF), but more commonly called Flesh-Eating Bacteria. This is really scary to me. It can destroy skin, fat, and tissue covering the muscles within a very short time. Fortunately, this infection is very rare, but deadly if you contract it. In fact 1 in 4 that get this infection dies.

Higher Risk Group
• Has a weak immune system
• Have chronic health problems such as diabetes, cancer, or liver or kidney disease
• Have cuts on your skin, including surgical wounds.
• Recently had chicken pox, or other viral infections that cause a rash.
• Use steroid medicines, which can lower the body’s resistance to infection.

• Skin is red, swollen, and hot to the touch.
• A fever and chills.
• Nausea and vomiting.
• Diarrhea.

These usually happen after an injury with pain worse than expected for the size of the injury. In fact it may feel fine and a day or so later it suddenly gets worse. You could go into shock. The bacteria destroys the soft tissue and fascia, which quickly becomes gangrenous (dead) This tissue must be surgically removed to save the life of the patient. NF can cause excruciating pain, dangerously low blood pressure, confusion, high fever, and severe dehydration due to the toxins poisoning the body. It can also occur under the skin resulting in a misdiagnosis.

If it occurs in the muscle or bone, major limb amputation is necessary. Death from this condition is not uncommon. Aside from tissue decay, the bacteria causes the rest of the body’s organs to go into systemic shock.

NF is not a recurring condition. Once treated the bacteria is eradicated from the body. (A good thing) However, this is a very fast moving infection, so time is the most important factor in survival.

For further information on Necrotizing Faciitis use your favorite search engine. Much of this was based on NNFF’s information from Dr. Steven Triesenberg, MD (Infectious Disease Specialist) in Grand Rapids, Michigan.

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation