On Monday 10/4 Joe reduced the INCYTE trial drug to a total of 10 mg a day. Joe claims he can feel the difference in his energy level but he keeps going and going. He continues to keep in a positive frame of mind.
On Monday afternoon Joe and I met with our pastor, Caleb Clarke, at his office at our church. The conversation gave Caleb an idea how we are handling things thus far. He had stated the congregation has us deep in their thoughts and prayers. Joe and I have gotten such strength from so many people prayer's across the world. It is very touching and humbling to know that there are so many people in our corner. Thank you from the both of us.
On Monday and Wednesday nights I participate with an on line chat for patients and caregivers who have one of the many forms of leukemia. Way too many have lost their jobs and no longer have health insurance coverage. Some are fighting their battles alone. Each has a story to tell but yet each person is real, compassionate and loving. The tales are heartbreaking but each one of us gains strength from each other. When one is fighting a life threatening disease, one gets comfort from others in the same boat or worse. If you are fighting something, there is a support group that could help you and help your love ones. You will learn so much. If you need help in finding one, please contact me and I will research it for you.
Today I had a follow up for my painful right shoulder/arm with my Emory Orthopedic at 10:30 AM. I was not seen till 11:47 AM and let the doctor know that I was unhappy with the wait. The staff should explain any delay to their patients instead of brushing them off. I told him that the cortisone shot he gave in the shoulder on 9/9 did not help at all and after three weeks of Physical Therapy it is worse. Now he wants to order a MRI of the neck! He feels 90% sure that the issue is in the neck because of the ineffectiveness of the shot and the pain worsening with physical therapy. I swear that it is in the shoulder joint and think the MRI should be of it. He disagreed. This afternoon I went to the Physical Therapist who twisted and pulled on my neck and he does not think it is the neck. I requested that he call my Orthopedic doctor and he said he would. I had asked the doctor whether the MRI could also be done on both the neck and shoulder at the same time but Doc said the MRI people do not like doing that since it is totally two different positions plus I would be in the machine trying to be still for one hour which would be very difficult. I wonder. I got a prescription to take steroids for a week which I am dreading since I have seen it blow up people in width. I do not need that. My self esteem is crappy already.
Since I was in the Perimeter area, I stopped by my hairdresser at Hair Clips to get my hair trimmed up. I have been going to the same hairdresser for about 20 years. I saw someone at the Tucker Walmart that had fabulous haircut and I asked her who did it and that is how I found my gal. In the same Georgetown Shopping Center there is Goldbergs who has great bagels and a fabulous rare roast beef sandwich so I had to stop there for lunch.
Tonight Joe and I had dinner at Prime at Lenox Square where this week it is Restaurant Week Special which consisted of a Wedge Blue Cheese Bacon Bits Salad, 8 oz perfectly cooked and tender New York Strip with au jus, fresh French Fries with garlic and Parmesan cheese, as well as a cheesecake for an amazing $25. I try to make all our restaurant reservations through OPEN TABLE where we earn points that one can cash out for a meal. We are up to 11,500 points which equals $115 if we cash it out now. I have used OPEN TABLE all across the United States as well as in Vancouver, Canada. It has valuable information such as comments from other people. Links for maps and the menus. Prime is one of our favorite restaurants in Atlanta and since we eat there so much, we belong to the "Friends of Tom" Club which gives you s discount on your meals. Hey, it all adds up. Joe and I belong to many restaurants VIP cards that cost nothing but you get all kinds of good stuff and coupons over the year including free birthday and anniversary meals.
I found out today that Cristy Bennett's 80 year old Dad, our wonderful neighbor, has bile duct cancer. A physician found it during an exam for his hurt back. Luckily they caught it at an early stage which is unusual since it normally found when it has spread quickly since one does not "feel" like there is anything wrong. Keep her Dad and Cristy in your prayers.
Thank you all for your support since it means the world to Joe and me. You are giving us strength with your prayers to the Almighty. We will make this journey a success with your help.
Ciao!
Bonnie
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