I went to get my Pet scan on Thursday. I had to be there a little after 7:00 am. When I was one of the working people that was nothing. I went to work at 7:00 many mornings over 26 years with the Department. But now I am retired and getting up at 5:30 am to be on the road a little after 6 to make the 45 minute drive. I have found over these past few years to be early to doctor appointments. The wait time somehow is a little shorter because they will move me up with someone else is running late.
Pet Scans aren't so bad. I mean all they do is inject you with radioactive material. They advise you to stay away from pregnant woman and small children for 20 hours, and to flush the toilet twice for 24 hours so as not to expose Bug to the radioactivity as my body flushes it out. But it doesn't make me feel bad, and think about how much money some woman spend trying to get the glowing complexion I have. OK, the steroids also help with the rosy glow on my face. Hey, if you are going to have stage 4 lung cancer you have to find your happy place where you can.
The scan went without a hitch. It is nice that I have been going here so long that they staff knows me and knowing I am not going to be difficult, they really take excellent care of me, and refer to me as a favorite patient. They help me up and down off the machines because with the chemo I have a lot of numbness in my feet and legs and even in my hands and arms at time. But after laying in the tube for 25 minutes with my arms braced over my head, when I go to get up I am extremely wobbly. But they laugh with me and gently guide me out to where I can go find my car. We send best wishes to each other hoping not to see each other for a while.
I left the hospital and went to get some food to eat. It was that weird time when the transition from breakfast to lunch. I picked up some fast food, not being very hungry and headed over to the Oncology Center. They got me into my labs quickly and I had plenty of time to get some food down before I had my appointment with Bobbie and then Dr. May.
It is always wonderful to get to visit with Bobbie. I still miss Ashley but as long as I have Bobbie and Betty Ann, I can do this. Dr. May came into see me. She did not have the results back from the PetScan yet, which actually worked in my favor because I got to play "What if" with her. What if the chemo did better then we had hoped for? What would be next?
I don't know why I had not expected this, but the answer was, "Keep taking the chemo infusion along with the Tarceva every 3 weeks for the rest of my life." WHAT?????
Wait a minute, that makes sense, but I have been sick or at the least had the sit downs and lay downs the entire time. I had like 3 -4 good days for every 3 weeks. But, I did get the stomach bug, the flu, more of the flu and then a cold, so if I could minimize my exposure to the illnesses out there, maybe I can do this. hmmmmm. maybe
After all, this has been a really bad flu season, and I have not been careful of where and when I have been going out around people. But I think the biggest problem with this treatment was somehow I had it in my mind if I could just survive these 4 treatments then I could go on with my life as it had been. And I need survive, barely. So what if I change my attitude? After all, I am not going to live without it. Bottom line folks. I stop the chemo, either the infusion or the tarcevia then the cancer continues to take over and well, die. Not right away.
How do I know that? Well, I asked Dr. May during this "What if" session, what if the infusion chemo did not affect the cancer at all? What are my options. There are two options, stop treatments, or try adding in another med into the infusion treatment. But this is the easiest chemo for me to handle. Anything we would add in would only make it harder on me, even if it might work better then the Altima on its own.
Based on the lab results while we were waiting on the PET Scan results suggested that the infusion treatment was working. But the bottom line, do I want to spend the rest of my life, of maybe a year or two more, sick? no. no, I do not want to do that.
So Dr.May through out a compromise. I take 2 more treatments to really knock the cancer down as far as we can, and then I can have a 3 month break to travel and get out and live my life, and then I am to come back and we will run 3 treatments and check to see if the cancer responds again to the treatment. This is not adding quantity to my life, but if I can tolerate the infusion better then I have, it could increase the quality of my life for the time I have left.
Okay, I agreed to the two treatments and that after my 3 months, I would come back to talk with her and make my final decision then whether to continue treatments. So when would we schedule the next treatment, number 5? Oh, well, she had already scheduled it and they were waiting for me. WHAT? I had to laugh. We do have control over our lives, to a point, and if we are smart we will listen to those we ask their advice. So I found myself in an infusion chair, surrounded by sweet competent staff, who know me and laugh and take care of me. I sit in my comfy chair covered with a warm blanket. Would I like a bottle of water, with a glass of ice? How about some cookies, or crackers, maybe a sandwich?
I accept the bottle of water, with the glass of ice, no on any food. I turn on the food network and sit there with a knitting board running the yarn up and down the board yarn weaving off of my fingers onto the pegs, the scarf growing with each pass. The tube stuck in my port in my chest dripping first nausea medicine, then steroids, then the WMD. I watched the rain sheeting down onto the gardens. I was warm and dry inside in my little chair with my warmed blanket. With Bug in Virginia I had not set up a fall back plan for getting home. After all, I was just going to do labs and seeing the doctor. I was not prepared for a treatment. And as the steroids hit my system after the bendryl my head was spinning. Oops. But sitting there drinking water, breathing in and out, well I felt better. I knew I would be able to drive home. And I did.
I have to admit that when I found out my options today it was a harder hit then I had expected. I don't know what I had expected. But as hard as it is to deal with, I have to admit that is it kind of cool to realize that it is my choice. It up to me where my fate lies. Maybe a little overwhelming, but in a much cooler way then I had thought it would feel. It is up to me to decide. It is my life, all the way to the end. Hmmmm and beyond. It is my responsibility to take care of my children, my property. I need to get back to getting my estate ready. Yes, I still have a year or more, but I need to do this while my mind is still clear and in tack.
I started doing this when I first found out about the cancer. I had a will made, but in the 2 1/2+ years now life is different. I know I have only known Bug for a year or so, but he has brought so much to my life and home. He has done more work on this place then anyone other then me. He is my partner, my best friend, my pal, my love. I can't help but consider about him as I think about everything. He has given me so much love and life and adventure at a time when I needed it the most. And he is still her. He handles my insanity, my sit downs and lay downs. He watches me stay in the same clothes for one too may days, or not take a shower every day. He supports me emotionally and manages to get me to eat more then I would without him. In fact these few days he has been gone, I have struggled again with remembering to eat, but when I think of him, I want to do what I can to stay as healthy as possible. Which is kind of funny. I was talking to Susan today and we laughed about how healthy I have lived for most of my life, and look where it is gotten me. Now I have to take things in my own hands.
This week while Bug has been up visiting his son I have tackled the guest room, our bedroom and got the carpet cleaned. I have played a little in the yard and thrown the ball for Bob more times then he should be running. I have had to give me a pain pill for the last couple of days. Today I am paying more attention to how often I throw the ball to him. I am trying to get the house and yard ready for the garden club tomorrow here. Oh well, my friends love me for me. They are not expecting me to perform miracles, they know I have the little c. And Bug's parents are heading our direction tomorrow from CA. It should take them 4 -5 days to get her, so that gives me a few more days to finish dusting and cleaning the house, and Bug will be home o Monday and can help me. And again, his parents love me for me and aren't expecting me to be super house keeper. Which I am not, but I want them to be proud of me and of Bug's choice. So I want to do what I can to get the house to look like it did before I got sick.
It has been cold here. Okay, it is not blizzard Nemo, but 30s, 40s and 50s is too cold for me. I live in Florida after all. And it has been a very mild winter, but that doesn't mean that 27 degrees makes me happy. Last weekend we went to the Singleman Concert. A concert of local bands held out at Willow Pond. We were going to camp there, but a tent and 27 degrees, no. It was a lovely sunny days and sitting in our thrift store chairs enjoying the different bands. We got there in time to catch the end of Caleb's set. We stayed until dark and as the temps started dropping, and both of us just getting over the flu and each of us struggling with a cold, and well the last band we heard just wasn't worth sitting in the cold.
Monday is a OH Stage Company Board Meeting and I am resigning. I also sent in an email resigning from the Board of the OH itself. I love the Opera House. I love my community. I love the people here. But I am not particularly productive or effective anymore so it is time to step aside for someone else who has the ability to make a difference. OK, and I am trying to down size the stress in my life. And not doing what I think I should be doing in these positions creates a lot of stress in my life.
It has taken me some time to write this, but that is because I needed to talk to a few precious loved ones before they read it here. I love you all, but it is time to accept that I have little c and the clock is ticking. For the past 3 months I have felt like I am sitting on the side of the bed holding a shoe. A shoe waiting to drop. So I am still sitting there holding that last shoe. It is my shoe and I am holding it. How lucky is that? The rest of my life is in my hands. Are lives are always in our own hands, but to think about that in a normal day to day is not as clear as it is for me now. Making a decision to stop the chemo could mean that I might not be able to go back, so I have to be sure. And even though it is my life, I have a partner to consider. He has changed my life in so many ways. So many wonderful and amazing ways. To fall in love with your best friend, how perfect is that.
So what are we going to do in this 3 months? Travel. March is Daytona Bike week with our dear friends Bill and Felecia. Then the next week is the Spring Music Festival at the Suwanee Music Park. We already have camping reservations and our tickets. Then in April we are going to a bike rally at Angel City. From there we are taking the 5th wheel with the golf cart, our bicycles and a Harley in the toy hauler portion and travelling for the rest of April and all of May. Then it will be time to come home and decide about the chemo. Of course, I am already working on a decision by having a better attitude towards the chemo. It seems to be working. I am having the side effects, but I am handling them better. Maybe.
Well, I guess that is really all I have today. Life and death decisions. Deep thinking with a shoe in my hand, love in my heart. My computer got hacked and it sent out a creepy email to everyone in my contact list. The nice part is that I got so many emails from friends asking how I am doing. I have been laying very low for the last 3 months. I have been insane and sick and tired and exhausted and dealing with people, even my most beloveds as just been more then I could handle. Especially with this cough and my weak voice, red running eyes, thin face and wobbly stand. But I am stronger, and I have a little more energy to share with others. But don't expect me to come out roaring. I am still going to have ups and downs, don't we all.
Yes, I am looking down the road and I can see that I will not make it to 60. I will be lucky to make it to 59. I have beaten all the other odds, but it is time to deal in reality and focus on day to day life. I know I have enough money to make these last couple of years. Five years? I don't know, that would be really stretching things, and the market could not take any big hits. But two years, I can do this. And I can make it two years to remember.
Bug. He is the reason I am even considering taking more chemo to have even one more day in his strong arms. To look into that face I love so much to hear his little happy song he hums, his chuckles and laughs. To sit in his lap and feel him wrap around me and then to have Bob and Edna jump in, Stella climbs on the back of the chair and Luna and Henry come around to see if there is some attention to them. Marina even lives with us again. My life has so much love and joy and happiness in it. The end isn't scary, is it a part of my story. I have some choices here in how the rest of my life will go, and then the end. I have the opportunity to decide how a life's work will be shared and with whom. It will include the people who have actively been part of my life these last few years. It will include those who love me and don't want anything but me.
So more soon. I hope you have avoided the flu. I hope you are safe and warm, especially if you are in Nemo. Down here the weather is nice, so come visit. But call to make reservations to make sure we will be here. This is the year. Who knows how I will be in another 12 months. You want to see me while I am still happy and smiling. Shoot. I will be smiling and laughing all the way out. Why not? What do I have to be unhappy about. I have had an amazing life and I know that it is time to step up and live, really live. Whether that is travelling or sitting in my garden, sitting in the sunshine, my hands deep in the rich composted soil. I don't care if I am pulling weeds or planting, life doesn't get any better then that. Life is lived in the small and large moments. Don't miss the small ones. Like sitting on my new screened in porch writing this post.
Here are some photos of the porch and my winter yard:
Come visit our new porch and sit with us for a while!
Pet Scans aren't so bad. I mean all they do is inject you with radioactive material. They advise you to stay away from pregnant woman and small children for 20 hours, and to flush the toilet twice for 24 hours so as not to expose Bug to the radioactivity as my body flushes it out. But it doesn't make me feel bad, and think about how much money some woman spend trying to get the glowing complexion I have. OK, the steroids also help with the rosy glow on my face. Hey, if you are going to have stage 4 lung cancer you have to find your happy place where you can.
The scan went without a hitch. It is nice that I have been going here so long that they staff knows me and knowing I am not going to be difficult, they really take excellent care of me, and refer to me as a favorite patient. They help me up and down off the machines because with the chemo I have a lot of numbness in my feet and legs and even in my hands and arms at time. But after laying in the tube for 25 minutes with my arms braced over my head, when I go to get up I am extremely wobbly. But they laugh with me and gently guide me out to where I can go find my car. We send best wishes to each other hoping not to see each other for a while.
I left the hospital and went to get some food to eat. It was that weird time when the transition from breakfast to lunch. I picked up some fast food, not being very hungry and headed over to the Oncology Center. They got me into my labs quickly and I had plenty of time to get some food down before I had my appointment with Bobbie and then Dr. May.
It is always wonderful to get to visit with Bobbie. I still miss Ashley but as long as I have Bobbie and Betty Ann, I can do this. Dr. May came into see me. She did not have the results back from the PetScan yet, which actually worked in my favor because I got to play "What if" with her. What if the chemo did better then we had hoped for? What would be next?
I don't know why I had not expected this, but the answer was, "Keep taking the chemo infusion along with the Tarceva every 3 weeks for the rest of my life." WHAT?????
Wait a minute, that makes sense, but I have been sick or at the least had the sit downs and lay downs the entire time. I had like 3 -4 good days for every 3 weeks. But, I did get the stomach bug, the flu, more of the flu and then a cold, so if I could minimize my exposure to the illnesses out there, maybe I can do this. hmmmmm. maybe
After all, this has been a really bad flu season, and I have not been careful of where and when I have been going out around people. But I think the biggest problem with this treatment was somehow I had it in my mind if I could just survive these 4 treatments then I could go on with my life as it had been. And I need survive, barely. So what if I change my attitude? After all, I am not going to live without it. Bottom line folks. I stop the chemo, either the infusion or the tarcevia then the cancer continues to take over and well, die. Not right away.
How do I know that? Well, I asked Dr. May during this "What if" session, what if the infusion chemo did not affect the cancer at all? What are my options. There are two options, stop treatments, or try adding in another med into the infusion treatment. But this is the easiest chemo for me to handle. Anything we would add in would only make it harder on me, even if it might work better then the Altima on its own.
Based on the lab results while we were waiting on the PET Scan results suggested that the infusion treatment was working. But the bottom line, do I want to spend the rest of my life, of maybe a year or two more, sick? no. no, I do not want to do that.
So Dr.May through out a compromise. I take 2 more treatments to really knock the cancer down as far as we can, and then I can have a 3 month break to travel and get out and live my life, and then I am to come back and we will run 3 treatments and check to see if the cancer responds again to the treatment. This is not adding quantity to my life, but if I can tolerate the infusion better then I have, it could increase the quality of my life for the time I have left.
Okay, I agreed to the two treatments and that after my 3 months, I would come back to talk with her and make my final decision then whether to continue treatments. So when would we schedule the next treatment, number 5? Oh, well, she had already scheduled it and they were waiting for me. WHAT? I had to laugh. We do have control over our lives, to a point, and if we are smart we will listen to those we ask their advice. So I found myself in an infusion chair, surrounded by sweet competent staff, who know me and laugh and take care of me. I sit in my comfy chair covered with a warm blanket. Would I like a bottle of water, with a glass of ice? How about some cookies, or crackers, maybe a sandwich?
I accept the bottle of water, with the glass of ice, no on any food. I turn on the food network and sit there with a knitting board running the yarn up and down the board yarn weaving off of my fingers onto the pegs, the scarf growing with each pass. The tube stuck in my port in my chest dripping first nausea medicine, then steroids, then the WMD. I watched the rain sheeting down onto the gardens. I was warm and dry inside in my little chair with my warmed blanket. With Bug in Virginia I had not set up a fall back plan for getting home. After all, I was just going to do labs and seeing the doctor. I was not prepared for a treatment. And as the steroids hit my system after the bendryl my head was spinning. Oops. But sitting there drinking water, breathing in and out, well I felt better. I knew I would be able to drive home. And I did.
I have to admit that when I found out my options today it was a harder hit then I had expected. I don't know what I had expected. But as hard as it is to deal with, I have to admit that is it kind of cool to realize that it is my choice. It up to me where my fate lies. Maybe a little overwhelming, but in a much cooler way then I had thought it would feel. It is up to me to decide. It is my life, all the way to the end. Hmmmm and beyond. It is my responsibility to take care of my children, my property. I need to get back to getting my estate ready. Yes, I still have a year or more, but I need to do this while my mind is still clear and in tack.
I started doing this when I first found out about the cancer. I had a will made, but in the 2 1/2+ years now life is different. I know I have only known Bug for a year or so, but he has brought so much to my life and home. He has done more work on this place then anyone other then me. He is my partner, my best friend, my pal, my love. I can't help but consider about him as I think about everything. He has given me so much love and life and adventure at a time when I needed it the most. And he is still her. He handles my insanity, my sit downs and lay downs. He watches me stay in the same clothes for one too may days, or not take a shower every day. He supports me emotionally and manages to get me to eat more then I would without him. In fact these few days he has been gone, I have struggled again with remembering to eat, but when I think of him, I want to do what I can to stay as healthy as possible. Which is kind of funny. I was talking to Susan today and we laughed about how healthy I have lived for most of my life, and look where it is gotten me. Now I have to take things in my own hands.
This week while Bug has been up visiting his son I have tackled the guest room, our bedroom and got the carpet cleaned. I have played a little in the yard and thrown the ball for Bob more times then he should be running. I have had to give me a pain pill for the last couple of days. Today I am paying more attention to how often I throw the ball to him. I am trying to get the house and yard ready for the garden club tomorrow here. Oh well, my friends love me for me. They are not expecting me to perform miracles, they know I have the little c. And Bug's parents are heading our direction tomorrow from CA. It should take them 4 -5 days to get her, so that gives me a few more days to finish dusting and cleaning the house, and Bug will be home o Monday and can help me. And again, his parents love me for me and aren't expecting me to be super house keeper. Which I am not, but I want them to be proud of me and of Bug's choice. So I want to do what I can to get the house to look like it did before I got sick.
It has been cold here. Okay, it is not blizzard Nemo, but 30s, 40s and 50s is too cold for me. I live in Florida after all. And it has been a very mild winter, but that doesn't mean that 27 degrees makes me happy. Last weekend we went to the Singleman Concert. A concert of local bands held out at Willow Pond. We were going to camp there, but a tent and 27 degrees, no. It was a lovely sunny days and sitting in our thrift store chairs enjoying the different bands. We got there in time to catch the end of Caleb's set. We stayed until dark and as the temps started dropping, and both of us just getting over the flu and each of us struggling with a cold, and well the last band we heard just wasn't worth sitting in the cold.
Monday is a OH Stage Company Board Meeting and I am resigning. I also sent in an email resigning from the Board of the OH itself. I love the Opera House. I love my community. I love the people here. But I am not particularly productive or effective anymore so it is time to step aside for someone else who has the ability to make a difference. OK, and I am trying to down size the stress in my life. And not doing what I think I should be doing in these positions creates a lot of stress in my life.
It has taken me some time to write this, but that is because I needed to talk to a few precious loved ones before they read it here. I love you all, but it is time to accept that I have little c and the clock is ticking. For the past 3 months I have felt like I am sitting on the side of the bed holding a shoe. A shoe waiting to drop. So I am still sitting there holding that last shoe. It is my shoe and I am holding it. How lucky is that? The rest of my life is in my hands. Are lives are always in our own hands, but to think about that in a normal day to day is not as clear as it is for me now. Making a decision to stop the chemo could mean that I might not be able to go back, so I have to be sure. And even though it is my life, I have a partner to consider. He has changed my life in so many ways. So many wonderful and amazing ways. To fall in love with your best friend, how perfect is that.
So what are we going to do in this 3 months? Travel. March is Daytona Bike week with our dear friends Bill and Felecia. Then the next week is the Spring Music Festival at the Suwanee Music Park. We already have camping reservations and our tickets. Then in April we are going to a bike rally at Angel City. From there we are taking the 5th wheel with the golf cart, our bicycles and a Harley in the toy hauler portion and travelling for the rest of April and all of May. Then it will be time to come home and decide about the chemo. Of course, I am already working on a decision by having a better attitude towards the chemo. It seems to be working. I am having the side effects, but I am handling them better. Maybe.
Well, I guess that is really all I have today. Life and death decisions. Deep thinking with a shoe in my hand, love in my heart. My computer got hacked and it sent out a creepy email to everyone in my contact list. The nice part is that I got so many emails from friends asking how I am doing. I have been laying very low for the last 3 months. I have been insane and sick and tired and exhausted and dealing with people, even my most beloveds as just been more then I could handle. Especially with this cough and my weak voice, red running eyes, thin face and wobbly stand. But I am stronger, and I have a little more energy to share with others. But don't expect me to come out roaring. I am still going to have ups and downs, don't we all.
Yes, I am looking down the road and I can see that I will not make it to 60. I will be lucky to make it to 59. I have beaten all the other odds, but it is time to deal in reality and focus on day to day life. I know I have enough money to make these last couple of years. Five years? I don't know, that would be really stretching things, and the market could not take any big hits. But two years, I can do this. And I can make it two years to remember.
Bug. He is the reason I am even considering taking more chemo to have even one more day in his strong arms. To look into that face I love so much to hear his little happy song he hums, his chuckles and laughs. To sit in his lap and feel him wrap around me and then to have Bob and Edna jump in, Stella climbs on the back of the chair and Luna and Henry come around to see if there is some attention to them. Marina even lives with us again. My life has so much love and joy and happiness in it. The end isn't scary, is it a part of my story. I have some choices here in how the rest of my life will go, and then the end. I have the opportunity to decide how a life's work will be shared and with whom. It will include the people who have actively been part of my life these last few years. It will include those who love me and don't want anything but me.
So more soon. I hope you have avoided the flu. I hope you are safe and warm, especially if you are in Nemo. Down here the weather is nice, so come visit. But call to make reservations to make sure we will be here. This is the year. Who knows how I will be in another 12 months. You want to see me while I am still happy and smiling. Shoot. I will be smiling and laughing all the way out. Why not? What do I have to be unhappy about. I have had an amazing life and I know that it is time to step up and live, really live. Whether that is travelling or sitting in my garden, sitting in the sunshine, my hands deep in the rich composted soil. I don't care if I am pulling weeds or planting, life doesn't get any better then that. Life is lived in the small and large moments. Don't miss the small ones. Like sitting on my new screened in porch writing this post.
Here are some photos of the porch and my winter yard:
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| Our new bar, the Turtle Shell Pub |
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| Brazilizan Flame Vine |
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| Turtle Shell |
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| Our sitting area with a TV, a little heater that looks like a wood burning stove, with two back up heaters |
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| The door leading up to my screened in back porch. The pumpkin in the photo is my pumpkin from Halloween 2 years ago. It still looks great! |
We had a wonderful time today at the Garden Club meeting. You did an amazing job with guiding us through our project, and your house was so warm and welcoming! I love your new porch and to see the photos here reminds me of the fun we had sitting on it. Thank you for sharing your feelings in this post and in person today. We are all here for you, and are sure that you will be fine in all your travels and plans. We love you!
ReplyDeleteGeorgie
I hope that you have a lot of life left. You are courageous.
ReplyDelete