Joe's energy level is decreasing which is expected since he is tapering off the INCYTE trial drug. He has decent energy in the morning then he knows to take breaks and time outs. His stomach looks much bigger to me which would be his spleen increasing from the INCYTE withdrawal.
This morning I misplaced my car keys, my sunglasses and my credit card. After a irritating search for at least an hour, I found them all. They were all in different places. I need to focus when I put something down. There is no doubt in my mind that it is stress related since our minds will react even if we think we are OK. Another stress related issue is that I get sores in my mouth that are nasty. You heard if the saying, " Well, just suck it in." It is what I do without realizing it. I suck the sides of my mouth that they rub on the teeth thus the sores. I do it during the day and have no idea I am doing it. I have a special mouth wash to numb it that does give me some relief. It aggravates me that I do it. Crazy, isn't it?
Last night it was LLS Support Chat On Line. Some of the people are the ones with leukemia or lymphoma. Some of us are caregivers. It lasts two hours but people come and go from the chat. The situations, that some have, are mind boggling and sad. I was disappointed that Phred from Texas was not on line since I knew that he was having a very difficult time the day before. He has health insurance issues and he lives alone. It is so cruel to have to handle everything alone. His computer also died so he is desperate for a new or borrowed one. If any one has an extra one, please let me know and I will ship it to him. My heart goes out to him. I tried to reach out to him today via texting on the phone but I could not get him to open up. I will keep trying. Lord, be with Phred.
My new hearing aids suck. After an adjustment yesterday, I had squeals about 60% of the time that I was ready to throw them at the wall. I drove back over to COSTCO today and they took program #2 off of them. It is somewhat better but I still get some squeals (feedback). Please Lord give me the patience to get them right and know when to give up and get a different type. For those who do not know, I have a 60% hearing lost in each ear since I was about 3 years old from having Inward Measles with a high fever for a number of days. It killed the nerves in my ears. My hearing issue did not come to light until I was in 5th grade when I went from an A student to an F student. It was the first time in school that I was sitting in back of a classroom. I did not know that I could not hear. Hearing specialists in NYC could do nothing for me and told my Mom to get me to learn lip reading. I did not get my first hearing aid till I was about 30 years old when my supervisor told me to get a hearing aid or be fired. There was no America's Disability Act back in 1974. I got a hearing aid even though past physicians did not think it would help. I excelled at the job and eventually took early retirement from that employer 21 years later. Every few years I get an ear medical expert to give me opinion but nothing has changed. So it is what it is so one just deals with it. I pray that I can get these new ones to work properly to assist me.
Tomorrow is my MRI at Emory Orthopedic to see of they can pin down my right shoulder issue. We shall see.
The grass we planted is coming up and looks great to see grass grow where it died from the prolonged drought. The key is to see if we can make it last. Green thumb, come to me! I do not feel too bad since most people in our subdivision who had fescue, their lawn is gone even though they had sod, sprinkler systems and yard people. I am carefully watering it to what is suggested.
Butterflies are in my stomach as we get closer to next week. Thank goodness we have some fun things planned this weekend to get both of our minds off next week.
God has been directing us the last thirteen years as well as the last month. I need to trust God that He will not give us any more than we can handle. I am so worried about Joe next week about his after effects from the FCR chemo. I am concerned whether if he has a rough time with the chemo and if it does not work and he goes through this challenge for no reason. I am not asking for words of wisdom from anyone. I am just letting my emotions out of this blog.
Peace be with you all,
Bonnie
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