Ms Moon and Ms Judy were at my house at 9:00 am yesterday morning. This is after not getting home until after 10 last night from rehearsal. Ms Moon has been taking care of Owen and we all understand how exhausting that is to chase around a 16 month old. Ms Judy had been building the set all day. And yet, at 9:00 am yesterday, there they were, exhausted, smiling and giving their support and love to me. To be willing to sit in the Oncology office for who knows how long just to spend about 15 minutes with Bobbie, Dr. M's nurse. And then spend about the same length of time with the doctor. That is true friends. That is kind and loving people. We are all exhausted. But we drive up to Thomasville and make our tea and sit and yarn and talk.
Then Betty Ann came over and explained that there has been a scheduling error. Actually they had scheduled chemo for Tuesday and the doctor/nurse visit for Wednesday. That is backwards. I had not noticed. I spend so much time focused on the dates, I didn't notice what I was supposed to do with the appointment. I let the doctors/nurses etc take care of that, and I show up and do what I need. Betty Ann said that the doctor was upset, but she had fixed it and he wanted to see us. We would just have to wait a little longer. That is a lot to ask of these dear friends, but they did not think twice. They just waited with me.
Finally our little beeper thing went off. This is new the beeper thing, like they give you at busy restaurants, only when the beeper goes off, you don't get food. But we paraded back to the office and Ms Bobbie asked me the questions and then we waited for the doctor.
He came in and smiled his beautiful smile and said that he had good news. He had finally gotten the genome testing on the lymph node. It was positive for the mutation. This is the mutation of lung cancer that responds to Tarceva. The mutation occurs in woman over 50 who do not have a history of smoking. And Tarceva is a pill you take once a day instead of having to do IV Chemo for a whole day once a month or so. This is very good news.
Good news!
We all hugged and maybe a few tears even spilled, good news. Then Dr. M got down to business. The first 2 months you are on Tarceva are pretty rough. He didn't go into a lot of details but he did go over a few things to watch for. First is the rash. This is an acne looking rash that spreads across the face starting across the nose. They have a cream for it. OK, rash. Not something I am looking forward to, but rash is better then loosing your hair. I think. He said that the people who respond the best to the drug get the rash quicker. All I can say is bring on the rash!
Then he reminded us that this is not a curable cancer. That this is not a permanent thing. We will stay on the pill for as long as it is effective. That could be a couple of years, if we are lucky. Then we will go back to the chemo. And when that chemo doesn't work any longer, or if my body can't take the chemo, then we will do another chemo, for as long as possible. A long term plan. A doctor who is like the sweet Antonio Banderas version of House. He does not give up until he has done everything he can to give me as long and healthy a life as possible.
Now there is an important part that I have not brought up yet. I was not going to have chemo yesterday regardless of the genetic testing. My platelets were at 69K they need to be over 96K to do the IV chemo. My body is not handling the chemo. I am not saying it is not working. It is, but it is taking a hard toll on me. The pill, once my body adjusts to it, should not be that hard on my body as the chemo is.
I guess that is the way cancer is, good news and bad news all mixed up together. A step towards a normal life, with side affects.
So, should I still retire now? Yes, I think I should. They are getting ready to take away the few perks state employees got for putting in years of hard work, at low salaries, few raises. But we were told when we started that if we were good employees, and work hard, do the extra, put in the hours, serve the citizens of Florida, that we would get a regular pay check, albeit less then could be obtained in the private sector. And then when we retired we would get retirement benefits. But now they are threatening those benefits. I can't afford after 30+ years of working hard for the state to loose my retirement benefits, or have them cut. So I am going to retire. I am going to stick with my plan to retire the end of May, beginning of June.
After our good news, and we had all hugged, then Dr. M came over and gave me a big hug. he asked for one. I wanted to give him a hug to say, thanks, but he asked first, and I was careful not to mess up his perfect hair. And then the three of us went to George and Louie's for Greek food. But it turns out that they only have a couple of Greek specialities on their regular menu. Once in a while they will add a few other Greek dishes, but not today. So we each had Greek salads, one with shrimp, one with salmon and one with fried oysters. And it was wonderful. George came over and talked. He is the owner and brings food out to people and talks to his customers and seems like a nice man. He explained that Louie was his father, his first name was George, but his middle name is Louie and his friends call him Louie, and he asked us to do so.
Then it was the long drive to Tallahassee and Ms Judy drove me and the Malibu back to my house. We were both exhausted, as was Ms Moon, but we headed home, hopefully for naps all around. And I did. As soon as I got home I laid down for a 2 1/2 hour nap. I woke up feeling so much better. Not great, but a hundred times better then I had felt. One little nap is not going to fix the exhaustion we all feel right now. But it did help.
I got up, and drove to the Opera House and for our last rehearsal before our show on Thursday night for Altrusia. There will be an audience. Friday night is opening night, but Thursday is like our big dress rehearsal. Rehearsal went much better, and we have the confidence to do the show now. And it will be a fine show. We have sold so many tickets that they added a Saturday matinee on the last day of the show. Two shows for the last one. Wow! That is a long day. It is a long show, like 2 1/2 hours. But the ladies are doing wonderful, and the show is going to be filled with laughter through tears. I am doing the lighting and backup dresser.
After rehearsal, Pat called us into the back dressing room and read an email from Catherine. Colin had always said that he had never been in love. But those of us who knew and loved him, disagree. He loved his first wife, you could tell by how he talked about her. And he loved Catherine. You could tell how he looked at her, how happy he was when she coming for a visit. And how lucky he was to have loved two such special women. And we all loved Catherine, not having had the chance to have met his first wife.
Pat and Ron had emailed Catherine and Pat read the response. It was so beautiful, so Catherine, so Colin. And somehow it gave me a little bit of closure. Catherine was in the room with us, suffering like us, actually more. After all she was as close to Colin as anyone could be. And having her with us, even if just in an email, seemed to make things better. She is a special person, and that was so special of Pat to share that with us. It did make a difference for me.
So I have had good news. I qualify for the pill. It might give me a little more time. It should give me after the first two months, a more normal life. it might give my body time to get strong enough so when I have to go back on the IV chemo, my body will be strong enough. All good stuff.
But the hard part for me, is that whenever we get good news, so many people start in with the you will out live all of us. Well, probably not. And to pretend that I do not have cancer, or that I will live forever, does not help me. Why can't we just be happy with the good news for what it is. Why do I have to be stressed out with fairy tales and happily ever afters. I want what Colin had. I want to accept this disease, learn from it, even suffer with it. Because it makes me appreciate my life so much more. Knowing the reality of what I have to face is so much easier to deal with by accepting it. I don't mind knowing that I have less then 10 years to live. Yes, yes, the Pollyanna's say, they could find a cure between now and then. That is true, but not likely. Dr. M is using the latest proven technologies and chemicals. We are not doing experiential drugs or practices, but proven ones with statistics behind them. Accept it. Let me accept it. Let me live each day actively balancing life and death. I don't want the princess version where I miss things because I am so busy pretending everything will be fine and I will live forever.
I am happy to have the life I have right now. And right now I am exhausted, trying to recover from the stomach bug. Trying to do the best job I can at work, and be the best lighting person for the Directors and the Stage Manager so that the actors can look their best, and our audience will have a wonderful theatrical experience. So they will want to come back and participate in the Spring Murder Mystery, that Ms Judy and I will co-direct. It will be a challenge.
But maybe that is what I am looking for. A challenge. I am ready to retire after 30+ years. I have a few things I want to do, but mostly I want to dig in the dirt and grow veggies and flowers, and throw the ball for Bob, and hug on Maggie and Harry. To scratch Henry behind the ears, hold Stella, run my hands down Luna's back and try to give Marina love whenever she is willing to accept it. I want to watch and feel and see the changes that my body is going through. I want to support my friends as long as I am here, because they have given me so much. I want to slow my life down, and allow the cancer to slowly do its thing. To experience a full death after a life that was so wonderful and amazing.
Please do not deny me that by refusing to accept what I have. Don't push me into the grave, but let it come as it will. Love me knowing that I am only here for a while longer. Help me to live each day as fully as I can at that moment. Whether that is resting or directing a play. Whether gardening or working part time for a catering company. I think in America we want so much, and sometimes we can loose the greatest gifts we have been given by wanting things to be different.
Colin knew what was happening to him. He faced it his way. Let me face my disease my way, and when the time comes, celebrate with me for all the opportunities I have been given, including this cancer.
We were talking last night about how much we hated cancer. And I do hate the cancer that has taken my friends from me. But I do not hate my cancer. That would be to hate part of myself. These are my cells that have gone insane and have spread. I don't mind the doctors doing what they can to slow this disease and make a change in my prognosis, but maybe because Dr. M has been honest, all along. This is incurable. And I appreciate knowing that. Because the greatest gift given to me is to have these next how many years to live a new way. A way with cancer. But I know that somehow in the next how many years I will lay down because of this disease and will have the chance to be the best person I could ever be, and to die a death, with no regrets, no fairy tales, facing head on my life, my death.
But for now, the pill. I am ready. Hopefully we start this new adventure within the next couple of weeks. And it is another opportunity for me to try and be the best I can be. To try and make this work, to hopefully gain a few years of a more normal life. A life with a pill a day, instead of days missing as I sit in the infusion room. The sun is shining, I have so much to do, but I am going to go lay down and rest. And depending on how I feel, I might even go to work for a couple of hours tomorrow, and then come home and rest and get ready for the show. Dress all in black, I will sit at the light board and follow the directions on my script. And I will help the ladies change, and we will perform. The actors will take their bows. I will stand back stage and cheer them on. That is my favorite part of plays and life in general, cheering them on. Please cheer me on, with realistic hopes, not fairy tales.
Then Betty Ann came over and explained that there has been a scheduling error. Actually they had scheduled chemo for Tuesday and the doctor/nurse visit for Wednesday. That is backwards. I had not noticed. I spend so much time focused on the dates, I didn't notice what I was supposed to do with the appointment. I let the doctors/nurses etc take care of that, and I show up and do what I need. Betty Ann said that the doctor was upset, but she had fixed it and he wanted to see us. We would just have to wait a little longer. That is a lot to ask of these dear friends, but they did not think twice. They just waited with me.
Finally our little beeper thing went off. This is new the beeper thing, like they give you at busy restaurants, only when the beeper goes off, you don't get food. But we paraded back to the office and Ms Bobbie asked me the questions and then we waited for the doctor.
He came in and smiled his beautiful smile and said that he had good news. He had finally gotten the genome testing on the lymph node. It was positive for the mutation. This is the mutation of lung cancer that responds to Tarceva. The mutation occurs in woman over 50 who do not have a history of smoking. And Tarceva is a pill you take once a day instead of having to do IV Chemo for a whole day once a month or so. This is very good news.
Good news!
We all hugged and maybe a few tears even spilled, good news. Then Dr. M got down to business. The first 2 months you are on Tarceva are pretty rough. He didn't go into a lot of details but he did go over a few things to watch for. First is the rash. This is an acne looking rash that spreads across the face starting across the nose. They have a cream for it. OK, rash. Not something I am looking forward to, but rash is better then loosing your hair. I think. He said that the people who respond the best to the drug get the rash quicker. All I can say is bring on the rash!
Then he reminded us that this is not a curable cancer. That this is not a permanent thing. We will stay on the pill for as long as it is effective. That could be a couple of years, if we are lucky. Then we will go back to the chemo. And when that chemo doesn't work any longer, or if my body can't take the chemo, then we will do another chemo, for as long as possible. A long term plan. A doctor who is like the sweet Antonio Banderas version of House. He does not give up until he has done everything he can to give me as long and healthy a life as possible.
Now there is an important part that I have not brought up yet. I was not going to have chemo yesterday regardless of the genetic testing. My platelets were at 69K they need to be over 96K to do the IV chemo. My body is not handling the chemo. I am not saying it is not working. It is, but it is taking a hard toll on me. The pill, once my body adjusts to it, should not be that hard on my body as the chemo is.
I guess that is the way cancer is, good news and bad news all mixed up together. A step towards a normal life, with side affects.
So, should I still retire now? Yes, I think I should. They are getting ready to take away the few perks state employees got for putting in years of hard work, at low salaries, few raises. But we were told when we started that if we were good employees, and work hard, do the extra, put in the hours, serve the citizens of Florida, that we would get a regular pay check, albeit less then could be obtained in the private sector. And then when we retired we would get retirement benefits. But now they are threatening those benefits. I can't afford after 30+ years of working hard for the state to loose my retirement benefits, or have them cut. So I am going to retire. I am going to stick with my plan to retire the end of May, beginning of June.
After our good news, and we had all hugged, then Dr. M came over and gave me a big hug. he asked for one. I wanted to give him a hug to say, thanks, but he asked first, and I was careful not to mess up his perfect hair. And then the three of us went to George and Louie's for Greek food. But it turns out that they only have a couple of Greek specialities on their regular menu. Once in a while they will add a few other Greek dishes, but not today. So we each had Greek salads, one with shrimp, one with salmon and one with fried oysters. And it was wonderful. George came over and talked. He is the owner and brings food out to people and talks to his customers and seems like a nice man. He explained that Louie was his father, his first name was George, but his middle name is Louie and his friends call him Louie, and he asked us to do so.
Then it was the long drive to Tallahassee and Ms Judy drove me and the Malibu back to my house. We were both exhausted, as was Ms Moon, but we headed home, hopefully for naps all around. And I did. As soon as I got home I laid down for a 2 1/2 hour nap. I woke up feeling so much better. Not great, but a hundred times better then I had felt. One little nap is not going to fix the exhaustion we all feel right now. But it did help.
I got up, and drove to the Opera House and for our last rehearsal before our show on Thursday night for Altrusia. There will be an audience. Friday night is opening night, but Thursday is like our big dress rehearsal. Rehearsal went much better, and we have the confidence to do the show now. And it will be a fine show. We have sold so many tickets that they added a Saturday matinee on the last day of the show. Two shows for the last one. Wow! That is a long day. It is a long show, like 2 1/2 hours. But the ladies are doing wonderful, and the show is going to be filled with laughter through tears. I am doing the lighting and backup dresser.
After rehearsal, Pat called us into the back dressing room and read an email from Catherine. Colin had always said that he had never been in love. But those of us who knew and loved him, disagree. He loved his first wife, you could tell by how he talked about her. And he loved Catherine. You could tell how he looked at her, how happy he was when she coming for a visit. And how lucky he was to have loved two such special women. And we all loved Catherine, not having had the chance to have met his first wife.
Pat and Ron had emailed Catherine and Pat read the response. It was so beautiful, so Catherine, so Colin. And somehow it gave me a little bit of closure. Catherine was in the room with us, suffering like us, actually more. After all she was as close to Colin as anyone could be. And having her with us, even if just in an email, seemed to make things better. She is a special person, and that was so special of Pat to share that with us. It did make a difference for me.
So I have had good news. I qualify for the pill. It might give me a little more time. It should give me after the first two months, a more normal life. it might give my body time to get strong enough so when I have to go back on the IV chemo, my body will be strong enough. All good stuff.
But the hard part for me, is that whenever we get good news, so many people start in with the you will out live all of us. Well, probably not. And to pretend that I do not have cancer, or that I will live forever, does not help me. Why can't we just be happy with the good news for what it is. Why do I have to be stressed out with fairy tales and happily ever afters. I want what Colin had. I want to accept this disease, learn from it, even suffer with it. Because it makes me appreciate my life so much more. Knowing the reality of what I have to face is so much easier to deal with by accepting it. I don't mind knowing that I have less then 10 years to live. Yes, yes, the Pollyanna's say, they could find a cure between now and then. That is true, but not likely. Dr. M is using the latest proven technologies and chemicals. We are not doing experiential drugs or practices, but proven ones with statistics behind them. Accept it. Let me accept it. Let me live each day actively balancing life and death. I don't want the princess version where I miss things because I am so busy pretending everything will be fine and I will live forever.
I am happy to have the life I have right now. And right now I am exhausted, trying to recover from the stomach bug. Trying to do the best job I can at work, and be the best lighting person for the Directors and the Stage Manager so that the actors can look their best, and our audience will have a wonderful theatrical experience. So they will want to come back and participate in the Spring Murder Mystery, that Ms Judy and I will co-direct. It will be a challenge.
But maybe that is what I am looking for. A challenge. I am ready to retire after 30+ years. I have a few things I want to do, but mostly I want to dig in the dirt and grow veggies and flowers, and throw the ball for Bob, and hug on Maggie and Harry. To scratch Henry behind the ears, hold Stella, run my hands down Luna's back and try to give Marina love whenever she is willing to accept it. I want to watch and feel and see the changes that my body is going through. I want to support my friends as long as I am here, because they have given me so much. I want to slow my life down, and allow the cancer to slowly do its thing. To experience a full death after a life that was so wonderful and amazing.
Please do not deny me that by refusing to accept what I have. Don't push me into the grave, but let it come as it will. Love me knowing that I am only here for a while longer. Help me to live each day as fully as I can at that moment. Whether that is resting or directing a play. Whether gardening or working part time for a catering company. I think in America we want so much, and sometimes we can loose the greatest gifts we have been given by wanting things to be different.
Colin knew what was happening to him. He faced it his way. Let me face my disease my way, and when the time comes, celebrate with me for all the opportunities I have been given, including this cancer.
We were talking last night about how much we hated cancer. And I do hate the cancer that has taken my friends from me. But I do not hate my cancer. That would be to hate part of myself. These are my cells that have gone insane and have spread. I don't mind the doctors doing what they can to slow this disease and make a change in my prognosis, but maybe because Dr. M has been honest, all along. This is incurable. And I appreciate knowing that. Because the greatest gift given to me is to have these next how many years to live a new way. A way with cancer. But I know that somehow in the next how many years I will lay down because of this disease and will have the chance to be the best person I could ever be, and to die a death, with no regrets, no fairy tales, facing head on my life, my death.
But for now, the pill. I am ready. Hopefully we start this new adventure within the next couple of weeks. And it is another opportunity for me to try and be the best I can be. To try and make this work, to hopefully gain a few years of a more normal life. A life with a pill a day, instead of days missing as I sit in the infusion room. The sun is shining, I have so much to do, but I am going to go lay down and rest. And depending on how I feel, I might even go to work for a couple of hours tomorrow, and then come home and rest and get ready for the show. Dress all in black, I will sit at the light board and follow the directions on my script. And I will help the ladies change, and we will perform. The actors will take their bows. I will stand back stage and cheer them on. That is my favorite part of plays and life in general, cheering them on. Please cheer me on, with realistic hopes, not fairy tales.
Here I am, cheering you on as I always have, always will. Okay, sometimes I try to make you sit down and rest but I am still cheering.
ReplyDeleteDo you know how much I love you and learn from you every day?
I doubt it.
Yay genetic mutation that gets you off chemo!
ReplyDeleteYay retirement!
I can tell you that retirement has been wonderful. I am so happy to have made it to this point. It is worth it. I don't like that state employees get the shaft. Not fair.
ReplyDelete