July 7, there was a mistake when Shawn picked up my Lovenox. I wasn't feeling well, Shannon's family had just arrived, and mostly I was in shock to have suddenly arrived in the "donut hole" of part D, the drug part of Medicare's structure in my insurance. (My prescription went from $9 to hundreds of $$$.) Even thought I checked with the pharmacy and the insurance company, I didn't realize this problem. The last few days I realized that my thought that 10 injections cost $227 was incorrect. It was really for 30 with the graduation into the donut hole, however they only gave Shawn 10-1 box instead of 30-3 boxes. My call to the pharmacist got me nowhere. She said that they had no extras and was to get back with me about the cost and if they could help any more. Today Shannon called the store manager. They reviewed tapes, etc. and decided that there is no way that there could have been 3 boxes in the one sack that went out to Shawn at the window, so they gave her the 2 other boxes. Yeah!!!!!! $600 saved and not down the tube! I'm so grateful.
Tuesday, July 29, 2014
A Few Weeks with the Gourleys
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| Sure going to miss these 2 when they leave to go home tomorrow! |
They came to help me out. There have been lots of good things happening including Shawn's late night cookie baking. Yum Yum
Ditto-No treatment today
Unfortunately, my white blood count was lower today, so I couldn't have a treatment today. To help build it up, I have my first of seven daily shots. On Monday they will do a blood draw to see where it is. I hope I can continue with the last four chemo treatments so that I can move on.
This last week has been fine. I really haven't felt bad. I kind of don't want to get in the habit of not having the chemo and then have to go back to it. But what will be, will be.
Thanks for your love, prayers, and support in all ways.
This last week has been fine. I really haven't felt bad. I kind of don't want to get in the habit of not having the chemo and then have to go back to it. But what will be, will be.
Thanks for your love, prayers, and support in all ways.
Tuesday, July 22, 2014
Disappointment Today
Today when I went in for my treatment, I had a disappointment. My white blood count was too low for me to have it safely. I was so looking forward to only 3 treatments left. However, it is still 4. I have an antibiotic to take in case the toe is a part of the problem. I go back next Tuesday for Treatment 4.
Newest Development in Chemo's Attack on Fast Growing Cells
It is early Tuesday morning. I have had some trouble sleeping or I should say staying asleep. When I get to sleep, my sheets rub against or touch in some way the end of my "big toes" which causes a sharp sensation or pain that wakes me up. This is the first night time this has been a challenge. I have put some soft socks on and some more DoTerra oils. I hope that will help.
The extremities-toes and fingers began to be worse last Thursday. I noticed that my left "big toe" was quite swollen and tender. My toes have some sense of being numb, but they haven't been too bad. The nails on these toes have a different color and I believe they will probably come off eventually. Since then I have been soaking them daily in epsom salt water. I don't know if it is helping, but it does feel good.
A couple of weeks ago I noticed that my finger nails began to be discolored. It looked like they have bruises under them. One of the nurses looked at them when I told her about them and said they will likely turn black and fall off. How exciting! Then some of the nails had places of white and I noticed that the nails were pulling away from the skin. I have been keeping them trimmed back so that I won't catch them. My nails are shorter than they have ever been. They are sensitive and I notice that I am careful how I do things with my fingers. The last days they have bothered me more with discomfort, as do my toes. Last Tuesday my doctor looked at them and confirmed that it was the chemo. He said it wasn't very common with Taxol, but that it was with one of its sister drugs. So much for the norm! He said that I will probably loose them, but he assured me that like the hair they will grow back. I have to admit that it bothers me to see them get progressively worse. But this too shall pass and be only a memory. I could have so much worse side effects. I am grateful that I don't.
On the plus side, another side effect is reddish spots on my fore arms and the skin exposed to sun all of these years. My doctor assured me that too is the chemo. It is healing sun damaged skin and the skin will be healthier than it was before I began the chemo. A bonus or freebie!
The extremities-toes and fingers began to be worse last Thursday. I noticed that my left "big toe" was quite swollen and tender. My toes have some sense of being numb, but they haven't been too bad. The nails on these toes have a different color and I believe they will probably come off eventually. Since then I have been soaking them daily in epsom salt water. I don't know if it is helping, but it does feel good.
A couple of weeks ago I noticed that my finger nails began to be discolored. It looked like they have bruises under them. One of the nurses looked at them when I told her about them and said they will likely turn black and fall off. How exciting! Then some of the nails had places of white and I noticed that the nails were pulling away from the skin. I have been keeping them trimmed back so that I won't catch them. My nails are shorter than they have ever been. They are sensitive and I notice that I am careful how I do things with my fingers. The last days they have bothered me more with discomfort, as do my toes. Last Tuesday my doctor looked at them and confirmed that it was the chemo. He said it wasn't very common with Taxol, but that it was with one of its sister drugs. So much for the norm! He said that I will probably loose them, but he assured me that like the hair they will grow back. I have to admit that it bothers me to see them get progressively worse. But this too shall pass and be only a memory. I could have so much worse side effects. I am grateful that I don't.
On the plus side, another side effect is reddish spots on my fore arms and the skin exposed to sun all of these years. My doctor assured me that too is the chemo. It is healing sun damaged skin and the skin will be healthier than it was before I began the chemo. A bonus or freebie!
Wednesday, July 16, 2014
75% Weeks of Chemo Treatments Complete
Today was my 8th treatment of part 2's 12 weeks of treatments. I began treatments on April 1st, so 15 of the 20 weeks of chemo have been received. They have seemed like they will go on forever, so that it feels a little strange to begin to think and talk of them being over and to be thinking about what comes next. I met with my oncologist today. We had a good meeting. I won't meet with him again until the end of August as long as all goes well. At that time we will set up the radiation treatments and discuss the medication that blocks the estrogen which feeds the type of cancer I had. He said that those treatments will begin mid September.
For those of you familiar with Medicare or Medicare related insurance, you may be familiar with the "doughnut hole". It is when the drug part of the insurance stops paying larger amounts and you pay 79% of generic drugs or get a discount on brand names. You stay in that stage until you have paid $4400 "out of pocket". This is separate from the hospital and doctors "out of pocket". I unexpectedly entered the "doughnut hole" the first of this month. In fact it was a shock. I was about $2000 from it the last of May. The reason for the dramatic change is the shots I have daily because of the blood clots they found when I was in the hospital mid-May. I am scheduled to receive them for 6 months-4 more. Life is full of surprises, isn't it? Beware of the "Doughnut Hole"!!!!!!
Flowers and pictures of flowers remind me of the many beautiful things in this world and in my life. One of which is you-your love, friendship, and prayers.
Pictures from flowers in my back yard
by John Gourley. Thanks, John.
For those of you familiar with Medicare or Medicare related insurance, you may be familiar with the "doughnut hole". It is when the drug part of the insurance stops paying larger amounts and you pay 79% of generic drugs or get a discount on brand names. You stay in that stage until you have paid $4400 "out of pocket". This is separate from the hospital and doctors "out of pocket". I unexpectedly entered the "doughnut hole" the first of this month. In fact it was a shock. I was about $2000 from it the last of May. The reason for the dramatic change is the shots I have daily because of the blood clots they found when I was in the hospital mid-May. I am scheduled to receive them for 6 months-4 more. Life is full of surprises, isn't it? Beware of the "Doughnut Hole"!!!!!!
Flowers and pictures of flowers remind me of the many beautiful things in this world and in my life. One of which is you-your love, friendship, and prayers.
by John Gourley. Thanks, John.
Wednesday, July 9, 2014
Good Day to Feel So Good
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| The Graffs-Benjamin, Nathan, SE, Leigha, Suzanna,and Jake Gourley |
Now there are only 5! Special Blessing During Treatment 6!
Today was my 6th Chemo treatment of part 2. The total number of weeks in all is 20 weeks, since I now have only 5 left, I will then be 3/4th of the way through these treatments. My treatment went well. I was really out of it during the last hour or so, as I get soooo tired when I get the Benadryll. I came home, ate a bite and then went to sleep. So glad that Shannon was able to be with me. After about 2+ hours, I woke up and have felt pretty good. I am grateful.
Today I had a special and uplifting experience. I noticed yesterday that my "spirits" were sagging a little bit. Today as I sat in the waiting room I began to cry. I haven't felt like that very often. I know that I haven't as a result of the many sincere prayers from my family and friends and as I have turned to the Lord. It so happened that I didn't have someone with me during the first part of the treatment. Usually that doesn't bother me. I thought of calling Shawn because I knew he was home and that he would come immediately. When the nurse called me in, she took one look at me and asked how I was. Of course the tears came again. As she took my blood she talked with me and was very supportive. We share the same religious back ground, so that gave some common ground.
When she finished and went to work with another patient, a sweet lady walked by. We had exchanged words before and talked a little today. She told me she was thinking that she was going to quit her treatments because of her circumstances. I felt very sad for the sorrow and depressed feelings I could feel she was having. As she left, I looked over and saw a lady sitting near the patient chair beside me. I had seen her other weeks, smiled, and said hi, but I've never talked with her. She was there with her husband for his treatments. She asked if we had worked together at some time and that began a conversation. We talked about many things including family, treatments, a common friend we both know, etc. I realized that she was one of my special blessing today. Later another lady came in that we began talking to. She has a picture and beautiful poem that she is going to bring in and leave at the desk for me, if I am not there when she is. I realized during that time that Heavenly Father knew of my needs and blessed me with each of these special courageous women. Later when the nurse was starting the chemo treatment to my line, I commented on the happenings and we both agreed that they were blessings of the Lord. As I was leaving, I saw another lady I had met 3 weeks ago and had the opportunity to say "hi" and thank her for the week we had visited.
Shannon was with me for some of these experiences and the time when I was really tired and "out of it". I was so glad that she was. When I got home, she fixed me a bite to eat and I went to bed. I slept for 2+ hours. When I woke up, I felt pretty good and have felt pretty good all evening. I am hoping to be able to sleep. Tomorrow I am going to see Suzanna and family and to see and hold those precious babies-Leigha and Nathan for the first time in person!!!!
Today I had a special and uplifting experience. I noticed yesterday that my "spirits" were sagging a little bit. Today as I sat in the waiting room I began to cry. I haven't felt like that very often. I know that I haven't as a result of the many sincere prayers from my family and friends and as I have turned to the Lord. It so happened that I didn't have someone with me during the first part of the treatment. Usually that doesn't bother me. I thought of calling Shawn because I knew he was home and that he would come immediately. When the nurse called me in, she took one look at me and asked how I was. Of course the tears came again. As she took my blood she talked with me and was very supportive. We share the same religious back ground, so that gave some common ground.
When she finished and went to work with another patient, a sweet lady walked by. We had exchanged words before and talked a little today. She told me she was thinking that she was going to quit her treatments because of her circumstances. I felt very sad for the sorrow and depressed feelings I could feel she was having. As she left, I looked over and saw a lady sitting near the patient chair beside me. I had seen her other weeks, smiled, and said hi, but I've never talked with her. She was there with her husband for his treatments. She asked if we had worked together at some time and that began a conversation. We talked about many things including family, treatments, a common friend we both know, etc. I realized that she was one of my special blessing today. Later another lady came in that we began talking to. She has a picture and beautiful poem that she is going to bring in and leave at the desk for me, if I am not there when she is. I realized during that time that Heavenly Father knew of my needs and blessed me with each of these special courageous women. Later when the nurse was starting the chemo treatment to my line, I commented on the happenings and we both agreed that they were blessings of the Lord. As I was leaving, I saw another lady I had met 3 weeks ago and had the opportunity to say "hi" and thank her for the week we had visited.
Shannon was with me for some of these experiences and the time when I was really tired and "out of it". I was so glad that she was. When I got home, she fixed me a bite to eat and I went to bed. I slept for 2+ hours. When I woke up, I felt pretty good and have felt pretty good all evening. I am hoping to be able to sleep. Tomorrow I am going to see Suzanna and family and to see and hold those precious babies-Leigha and Nathan for the first time in person!!!!
Saturday, July 5, 2014
Update: Only 6 More Chemo Treatments
I am excited as the number of weeks and treatments of chemo gets smaller. This part of the chemo is not as difficult as the first part.
I was telling Shawn today that I seem to have different lives within my one life. There are the days like the last few where I don't feel well at all. While I don't feel as bad as I have previously, I seem to work on getting through them in pretty good fashion and don't think very much about other things. Then there are days when I feel pretty good. On those days, I think of so many things that I want and think I feel like doing. I do many of them and love it. I find it easy to consider doing many things, but I have to remember that my energy is limited. I find these days exciting and full of energy. It seems to me they are getting better as I can see the number of treatments to go getting smaller. However, Shawn's perception is that he can see that I am weaker which is what the doctors have told me would be the case. He said he can see it on the days I am not feeling well. I do look forward to the month or so when I have no treatments before the radiation begins. Right now I am not thinking about that. It will happen as it happens. BUT I am looking forward and thinking that by Christmas, I will have at least some hair again!!!!!!!
I was telling Shawn today that I seem to have different lives within my one life. There are the days like the last few where I don't feel well at all. While I don't feel as bad as I have previously, I seem to work on getting through them in pretty good fashion and don't think very much about other things. Then there are days when I feel pretty good. On those days, I think of so many things that I want and think I feel like doing. I do many of them and love it. I find it easy to consider doing many things, but I have to remember that my energy is limited. I find these days exciting and full of energy. It seems to me they are getting better as I can see the number of treatments to go getting smaller. However, Shawn's perception is that he can see that I am weaker which is what the doctors have told me would be the case. He said he can see it on the days I am not feeling well. I do look forward to the month or so when I have no treatments before the radiation begins. Right now I am not thinking about that. It will happen as it happens. BUT I am looking forward and thinking that by Christmas, I will have at least some hair again!!!!!!!
Treatment Day
I have been doing some observing and pondering about "treatment day" for several weeks. I have known for some time that when things are "hard" I don't usually think too much about them being hard. For some reason that doesn't empower me. Later I can be very aware and acknowledge it.
In the week of my last treatment of part 1 of the chemo (mid-May), I realized and thought to myself that these treatments were getting the best of me, in fact the thought was "these treatments are kicking my butt". I don't remember even thinking that before about things.
Although it is reasonable, I still didn't realize that it was harder to go for them. A few days after the last treatment, my sodium level dropped and I ended up in ICU very sick. That was a very difficult time.
Because it is what needed to happen, a week after being released from the hospital, I was back for the first treatment of part 2. I was more than a bit skeptic that it would be better than I had experienced with part 1. I didn't realize how heavy 12 weekly treatments was to me. So it came as a surprise to me that I was uplifted more than I had anticipated after that first treatment to find that I had only 11 treatments left. That number 12 was looking and sounding insurmountable to me, since then each week I have found more hope as the number gets smaller.
I noticed something else those first few weeks of part 2. I noticed that I didn't feel well on Monday or treatment day itself. When I saw Dr. Bott the first week of the new treatment, I remember telling him that I just didn't feel well. I had no specific pains or areas of discomfort. My blood work and exam indicated that I was fine to proceed, but I felt lousy. I had pondered that Monday whether I would be able to have the treatment and had mixed emotions about what I hoped would happen. I didn't want to have it, thinking it would be great to feel better with another week without treatment. On the other hand it would only push the treatments out longer. The next week, first of June, I felt bad on Monday and went in for some fluid, thinking I was dehydrated. Somewhere in that week and the ones that followed I began to realize that it was hard psychologically to go for the treatments even thought I wasn't consciously thinking or talking about it. On the way to one of my treatments, I did talk to my friend about it. She posed the idea that my body knew it was going to get poison and wasn't happy about it. I know that may sound a bit weird, but I feel there is truth in it.
Since that time, I have begun to acknowledge that I find it hard to go. I don't dwell on it. I just acknowledge that is how I feel. A few weeks ago was harder than the others had been, so I prayed for the courage I needed to go. Since I have been acknowledging it, I have felt better on those days. I don't feel great, but I do feel better than I did on previous treatment days.
In the week of my last treatment of part 1 of the chemo (mid-May), I realized and thought to myself that these treatments were getting the best of me, in fact the thought was "these treatments are kicking my butt". I don't remember even thinking that before about things.
Although it is reasonable, I still didn't realize that it was harder to go for them. A few days after the last treatment, my sodium level dropped and I ended up in ICU very sick. That was a very difficult time.
Because it is what needed to happen, a week after being released from the hospital, I was back for the first treatment of part 2. I was more than a bit skeptic that it would be better than I had experienced with part 1. I didn't realize how heavy 12 weekly treatments was to me. So it came as a surprise to me that I was uplifted more than I had anticipated after that first treatment to find that I had only 11 treatments left. That number 12 was looking and sounding insurmountable to me, since then each week I have found more hope as the number gets smaller.
I noticed something else those first few weeks of part 2. I noticed that I didn't feel well on Monday or treatment day itself. When I saw Dr. Bott the first week of the new treatment, I remember telling him that I just didn't feel well. I had no specific pains or areas of discomfort. My blood work and exam indicated that I was fine to proceed, but I felt lousy. I had pondered that Monday whether I would be able to have the treatment and had mixed emotions about what I hoped would happen. I didn't want to have it, thinking it would be great to feel better with another week without treatment. On the other hand it would only push the treatments out longer. The next week, first of June, I felt bad on Monday and went in for some fluid, thinking I was dehydrated. Somewhere in that week and the ones that followed I began to realize that it was hard psychologically to go for the treatments even thought I wasn't consciously thinking or talking about it. On the way to one of my treatments, I did talk to my friend about it. She posed the idea that my body knew it was going to get poison and wasn't happy about it. I know that may sound a bit weird, but I feel there is truth in it.
Since that time, I have begun to acknowledge that I find it hard to go. I don't dwell on it. I just acknowledge that is how I feel. A few weeks ago was harder than the others had been, so I prayed for the courage I needed to go. Since I have been acknowledging it, I have felt better on those days. I don't feel great, but I do feel better than I did on previous treatment days.
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| This isn't one of mine, but one I received. I'll try to get a pic of one from my small rose garden. |
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