Thank you so much for your prayers. We had a great trip to Little Rock. All tests showed stability of disease level and I am so grateful. However, due to persistent low blood counts and other side effects, the doctor decided to lower the dose of two of the chemo drugs. The hope is that these dosages will still keep the disease in check. I think they have given up on getting me back in remission, but I haven’t!
We got home from Little Rock about 9:00 Thursday evening. I had been aching and light headed all day but thought nothing of it since I deal with things like that off and on. I went to bed and was delirious all night. I could not wake myself up enough to call to Gary or get up and take my temperature. When I finally got cognizant about 7:00 am, I took my temperature and it was 101.7. I went to the doctor knowing I was in trouble and was entered into the hospital (notice, however, it was not a Thursday). Things got worse before they got better and Sunday afternoon I was having great difficulty breathing. The nurse contacted the doctor and he prescribed some new medications and added oxygen. I was better by the time Gary came from church Sunday evening. (Yes, I insisted he had to go. His message was important and as it turned out, the church family prayed for and loved on him and he needed that.) The problem was fluid around the heart and in each lung. The fever and tests also indicated infection. The first assumption was pneumonia but with additional tests the source of infection was unclear. My heart must pump better or this will be a chronic problem.
In the hospital I was given four different IV antibiotics, breathing treatments, oxygen, my regular medications, and other things. I was finally released Friday evening. One of the doctors was hesitant, but my oncologist felt it was okay and knew Gary was to leave Monday (7/20) for Brazil. The oncologist, his P.A., and the hospital nurses all worked to help me get out as easily and quickly as possible Friday evening. They all knew it was important for Gary to go and that he needed to see me home and doing better. They gave us a great gift by getting me home. I came home with infusers of IV antibiotics that I could administer myself and the necessary equipment and medications for the breathing treatments. Though I was weak, I have gained strength everyday. I have slept really well, have been able to eat more, and have been emotionally better off at home.
I was weaker after this eight day hospital stay than is usual for me so I have been taking it easier than usual. I am regaining strength everyday and hope to be back to “normal” soon. I may have shared with you from Sandy Lynam Clough’s book, And I Know He Watches Me. It was one of the books I read shortly after my diagnosis of multiple myeloma. In her battle with illness she writes, “I had arrived at a new ‘normal.’ My ‘normal’ had changed. It would change again and maybe again. But ‘normal’ now is the new situation I find myself in—circumstances I am powerless to change. . . There is Someone you can bring with you to this not-quite-comfortable new ‘normal.’ Someone who never changes.” Then she quotes Psalm 71:5-6 from the Amplified Bible, “For You are my hope; O Lord God, You are my trust from my youth and the source of my confidence. Upon You have I leaned and relied from birth; You are He Who took me from my mother’s womb and You have been my benefactor from that day.” If I find myself at another new “normal” as a result of the current issues related to my illness, it is faced with joy and anticipation because I know God has been with me since I was conceived and He will be with me in whatever “normal” I find myself.
Also, in speaking of courage, Sandy Clough said, “We can choose to live through the days before us, or we can choose not to live. Choosing not to live is cowardly.” I can’t imagine choosing not to live each day to its fullest. I know if God gives breath, He has a plan and purpose for me that day. And He promised, “Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you or forsake you” (Deuteronomy 31:6). I know when He gives life, He is right there beside me helping me live it.
I had a follow-up visit with the oncologist Monday (7/20) and he was very pleased with the way I looked and the way my lungs sounded. My counts had recuperated enough that the decision was made to restart chemo. Though neither of us wanted to do so, I have been off for two weeks and cannot stay off the chemo for any length of time. It is always bittersweet to restart the chemo—I don’t like the chemo but am grateful to be well enough to take it.
Gary will be in Brazil until next Tuesday. Please pray for all that God is doing there and pray for Gary’s peace of mind in regard to me. I say over and over again that I don’t want my illness to rob him of the ministry God has called him to do. He is with me when I need him and would be with me any time I asked him. I have a family and a church family that will take care of anything I need while he is gone.
Thank you for your prayers and support and may God give you the courage to live this day to its fullest.
Tuesday, July 21, 2009
Saturday, July 4, 2009
HAPPY FOURTH OF JULY! I am so grateful to have been born in this country. Even with all our problems, we are still the greatest country on earth. We certainly owe a great debt to our founding fathers and those who followed for their commitment to freedom and faith.
June was an eventful month. After leaving the hospital on Tuesday (6/2) I saw my oncologist and got clearance for Gary and I to go on to the beach for a few days. I continued to be a little weak, but on Friday we decided I was better and we headed over to Ormond Beach. All of our children and grandchildren were going to be there on Saturday, some would be there Sunday, and some would be there the following Tuesday and Wednesday. We were really looking forward to time together and time with all of them.
I awakened during the night Friday night with AFIB. It was off and on for about two hours. During that time I prayed, “God please let me be able to be here this week. Please don’t let me mess things up for everyone. Let me at least be able to sit and watch them all as they talk and play.” As the day progressed on Saturday, I knew I was in trouble. I did not have the breath and strength to do much more than sit on the couch. I did take the elevator down to the beach and watch the children play for a while. I was glad that we had an ocean view so I could see everyone even when I was in the condo.
By the way, I did get rid of the wig. When Johanna (5 years old) saw me she started laughing. She said, “DiGi that’s the funniest thing I ever saw.” I have enjoyed the freedom of no wig but am still adjusting to seeing myself with short hair. I also wish I had prayed for more than the ability to sit on the couch and watch while we were at the beach. God gave me what I asked for. I have wondered if I should have asked for more. (I did enjoy a lot of good food during the week.)
Things did not get better with my heart through the week and I finally called the doctor on Thursday. On Friday we talked again and the decision was made to admit me to the hospital. I was having so much difficulty that I was nauseated and unable to walk even a few steps without feeling like I would pass out. We traveled home planning to unpack and then pack me a bag for the hospital. The doctor’s office called back and said they could not increase the dose of the new heart medication because of a negative response of my heart to the drug. They asked if I thought I could make it until Tuesday and let the doctor see me in the clinic. Things had settled down a little by that time so I told them I would try.
When I saw the doctor on Tuesday they pulled the memory from the pacemaker and found that there was a function in the pacemaker that had not been turned back on after one of the tests in the hospital. Every time I had gone into AFIB my heart would begin racing at 120-130 beats per minute because the bottom chambers of the heart would try to keep up with the upper chambers. This had been occurring for over half a day many of the days I was at the beach. It was like I was running a race almost every day and then I was exhausted in-between the “races.” The nurse looked at me and said, “You must have been feeling absolutely horrific.” That was a good description. I sat there thankful that my heart muscle was strong so I did not have a heart attack during those episodes. They checked the pacemaker carefully and reset it. The doctor asked if I wanted to continue to try the new medication because there was no way of knowing if it was working properly since the pacemaker was not working properly. The other options were to switch to a medication that is very toxic to the body or have a surgical procedure to cut a nerve from the atrium to the ventricle which would solve the problem but make me pacemaker dependent. I decided to give the current medication more time to work.
I left the office thinking about the previous week and the effect on our time at the beach created by the mistake with the pacemaker. For a moment I felt angry. Then I decided that I did not want to lose anymore time or energy over what was already done. Mistakes happen. No one is perfect. Instead of spending my time being angry I would be grateful that the solution to what had been happening was so simple and I would enjoy the day before me. Anger saps too much of our time and energy in life. In Ephesians Paul writes, “In your anger do not sin. Do not let the sun go down while you are still angry, and do not give the devil a foothold” (4:26-27). God knows that keeping anger inside of us is not good for us. We need to deal with it quickly. Otherwise, the devil does gain a foothold on us. We become a prisoner to the anger. It takes our mental and emotional energy and we aren’t able to think about and do those things that are good and productive. The funny thing is that the person we are angry with usually doesn’t even know it and has gone on with their life. We are the one trapped in our anger. We need to forgive and move on. I know I make many mistakes and just pray that others will forgive me. Since I want forgiveness I must be willing to give it. It is ultimately the best thing for me.
The heart continued to struggle and have episodes of AFIB for the next two weeks. I think it had been through so much, and with all my chemo medications, it was just slow in recovering. This week I have finally begun to have more energy. The episodes of AFIB have been less so I am hoping the medication will now be able to work. I do not want to have to go to either of the options the cardiologist proposed.
I will be leaving Monday (7/6) for Little Rock and a few days of testing and evaluation. I have not sent any labwork since earlier in May but trust we will find cancer levels reduced or at least stable. The protocol that I have been on since the first of November has been somewhat difficult on the body. The original plan of the doctor’s was to leave me on it four months. When I was in Little Rock the first of March, they asked if I thought I could continue to handle the side effects since the disease was stable. I said yes. This last month the side effects have increased and become more difficult to deal with (but I am still able to enjoy life). That may be related to the poor heart function and the inability of the body to get the medications through the system and out of the body as quickly as had been happening before. I am not sure what the doctors will decide to do this time. I will undergo testing beginning at 5:30 am on Tuesday and then see the doctor on Thursday. I hope to return with good news and a protocol that will enable me to continue to be in Gainesville and active with family, friends, and church. Thank you for your prayers as we make this trip. We really appreciate and count on them.
I’m going to post this and go have hamburgers, corn on the cob, watermelon, cherry pie, homemade ice cream, and who knows what else. I hope you have a Happy Fourth!
June was an eventful month. After leaving the hospital on Tuesday (6/2) I saw my oncologist and got clearance for Gary and I to go on to the beach for a few days. I continued to be a little weak, but on Friday we decided I was better and we headed over to Ormond Beach. All of our children and grandchildren were going to be there on Saturday, some would be there Sunday, and some would be there the following Tuesday and Wednesday. We were really looking forward to time together and time with all of them.
I awakened during the night Friday night with AFIB. It was off and on for about two hours. During that time I prayed, “God please let me be able to be here this week. Please don’t let me mess things up for everyone. Let me at least be able to sit and watch them all as they talk and play.” As the day progressed on Saturday, I knew I was in trouble. I did not have the breath and strength to do much more than sit on the couch. I did take the elevator down to the beach and watch the children play for a while. I was glad that we had an ocean view so I could see everyone even when I was in the condo.
By the way, I did get rid of the wig. When Johanna (5 years old) saw me she started laughing. She said, “DiGi that’s the funniest thing I ever saw.” I have enjoyed the freedom of no wig but am still adjusting to seeing myself with short hair. I also wish I had prayed for more than the ability to sit on the couch and watch while we were at the beach. God gave me what I asked for. I have wondered if I should have asked for more. (I did enjoy a lot of good food during the week.)
Things did not get better with my heart through the week and I finally called the doctor on Thursday. On Friday we talked again and the decision was made to admit me to the hospital. I was having so much difficulty that I was nauseated and unable to walk even a few steps without feeling like I would pass out. We traveled home planning to unpack and then pack me a bag for the hospital. The doctor’s office called back and said they could not increase the dose of the new heart medication because of a negative response of my heart to the drug. They asked if I thought I could make it until Tuesday and let the doctor see me in the clinic. Things had settled down a little by that time so I told them I would try.
When I saw the doctor on Tuesday they pulled the memory from the pacemaker and found that there was a function in the pacemaker that had not been turned back on after one of the tests in the hospital. Every time I had gone into AFIB my heart would begin racing at 120-130 beats per minute because the bottom chambers of the heart would try to keep up with the upper chambers. This had been occurring for over half a day many of the days I was at the beach. It was like I was running a race almost every day and then I was exhausted in-between the “races.” The nurse looked at me and said, “You must have been feeling absolutely horrific.” That was a good description. I sat there thankful that my heart muscle was strong so I did not have a heart attack during those episodes. They checked the pacemaker carefully and reset it. The doctor asked if I wanted to continue to try the new medication because there was no way of knowing if it was working properly since the pacemaker was not working properly. The other options were to switch to a medication that is very toxic to the body or have a surgical procedure to cut a nerve from the atrium to the ventricle which would solve the problem but make me pacemaker dependent. I decided to give the current medication more time to work.
I left the office thinking about the previous week and the effect on our time at the beach created by the mistake with the pacemaker. For a moment I felt angry. Then I decided that I did not want to lose anymore time or energy over what was already done. Mistakes happen. No one is perfect. Instead of spending my time being angry I would be grateful that the solution to what had been happening was so simple and I would enjoy the day before me. Anger saps too much of our time and energy in life. In Ephesians Paul writes, “In your anger do not sin. Do not let the sun go down while you are still angry, and do not give the devil a foothold” (4:26-27). God knows that keeping anger inside of us is not good for us. We need to deal with it quickly. Otherwise, the devil does gain a foothold on us. We become a prisoner to the anger. It takes our mental and emotional energy and we aren’t able to think about and do those things that are good and productive. The funny thing is that the person we are angry with usually doesn’t even know it and has gone on with their life. We are the one trapped in our anger. We need to forgive and move on. I know I make many mistakes and just pray that others will forgive me. Since I want forgiveness I must be willing to give it. It is ultimately the best thing for me.
The heart continued to struggle and have episodes of AFIB for the next two weeks. I think it had been through so much, and with all my chemo medications, it was just slow in recovering. This week I have finally begun to have more energy. The episodes of AFIB have been less so I am hoping the medication will now be able to work. I do not want to have to go to either of the options the cardiologist proposed.
I will be leaving Monday (7/6) for Little Rock and a few days of testing and evaluation. I have not sent any labwork since earlier in May but trust we will find cancer levels reduced or at least stable. The protocol that I have been on since the first of November has been somewhat difficult on the body. The original plan of the doctor’s was to leave me on it four months. When I was in Little Rock the first of March, they asked if I thought I could continue to handle the side effects since the disease was stable. I said yes. This last month the side effects have increased and become more difficult to deal with (but I am still able to enjoy life). That may be related to the poor heart function and the inability of the body to get the medications through the system and out of the body as quickly as had been happening before. I am not sure what the doctors will decide to do this time. I will undergo testing beginning at 5:30 am on Tuesday and then see the doctor on Thursday. I hope to return with good news and a protocol that will enable me to continue to be in Gainesville and active with family, friends, and church. Thank you for your prayers as we make this trip. We really appreciate and count on them.
I’m going to post this and go have hamburgers, corn on the cob, watermelon, cherry pie, homemade ice cream, and who knows what else. I hope you have a Happy Fourth!
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