Cancer, God and Friends
I posted yesterday that Lillian started chemo yesterday, but she didn't. She had a "simulation" day to run through everything that would be happening when she actually does begin her treatments. I talked to Marian this morning and she said radiation will begin Friday and chemo on Monday. (I think I'm getting it straight.) Marian said the oncologist told Lillian that she's going to be pretty sick. He's going to treat her with strong stuff because he wants to kill any cancer that may be remaining. That's what she wants, too. I'm so glad Marian is there with her.
I was just watching the last few minutes of Oprah. The show was about receiving and living with a dreaded diagnosis. Cancer, HIV, multiple sclerosis. I think it was Fran Drescher who said that sometimes the best things come in the ugliest packages. Although she did not want to have cancer, good has come from it for her. Magic Johnson expressed similar feelings about living with HIV and Montel Williams spoke about his MS. Oprah said that every few minutes (I think it was possibly every two minutes, but I can't remember for sure) someone gets a cancer diagnosis. I personally know of quite a few and have made many friends who are battling cancer as a result of John's diagnosis and my online quest for knowledge and support.
No matter what it is, there is something very special about knowing someone else relates to what you're experiencing. For instance, nobody knows what it's like to lose a mother -- until you lose yours. When someone shares an unwanted diagnosis, you know they understand what it's like not only to receive the unwanted diagnosis, but they know what it's like to learn how to live with it and be thankful for every day. If anything, you become even more thankful for every day because you no longer take a day of life for granted (whether it's your own diagnosis or your loved one's).
I lost my paternal grandmother to cancer when I was ten years old (and she was forty-nine). I really would have liked to have known her as I grew up. My dad used to tell me that I had a lot of her traits. And I know I inherited her love of writing. I remember her smile and her laughter. I really believe I would have been close to her.
I lost my mom to colon cancer when I was twenty-eight (and she was forty-nine). We weren't really close before her diagnosis, but we became much closer while she was terminally ill. That made her loss more painful, but was also a great comfort for me in the years to come.
When John was diagnosed with CLL two years ago, I didn't think I could bear it. Ever since we met, I felt like I'd won the lottery. I never dreamed I would be so happily married. And then three and a half years into our fairytale marriage, he was diagnosed with an incurable cancer. I couldn't hardly believe it. Every day since the beginning of our relationship, I have thought "I can't believe how much I love you" every time I looked at him. After his diagnosis, every time I looked at him tears welled up in my eyes and I thought, "I cannot bear to lose you." It was so hard. And making it even harder was John not wanting to share this diagnosis with hardly anyone. He is so private. (I am so NOT private.) I became a recluse all summer. Sometimes I couldn't answer the phone because I knew the person calling would hear something wrong in my voice and I couldn't talk about it. So I couldn't talk. But I COULD talk to my online CLL friends; especially my CLL Christian Friends.
One day, while still in this emotionally devastated state, I was washing down my back porch and watering my flowers. I had learned so much about CLL and all the different prognostic markers. I spent just about every waking moment reading all I could about CLL so I could take care of John and help him make the best treatment decisions for his long term survival and best quality of life. This particular day, I was begging God to let him have all the good markers (which would mean a very benign CLL and perhaps twenty years treatment free). While I was crying and praying, I had one of those moments when I absolutely knew God spoke to my heart. He told me not to put my hope and my faith in a certain outcome, but to put my hope and faith in Him and in the promise that He was working all things for our good, "even this." I accepted that and took it to heart. He also impressed upon me that it was premature for me to grieve losing my husband. My husband had not only not been taken from me, he was still a very healthy man. He might outlive me. So how silly was it for me to waste our present by projecting myself into a future I did not think I could bear to face? God wasn't asking me to face that yet. He began to impress on my heart that there might be a day when I would grieve, but not now.
Not long after that, we went to the Mayo Clinic for a very thorough evaluation by an expert. We found out that John had three out of four good markers, but the one bad one he did have was the one that most predicts a shorter time to treatment and not the best prognosis (though with the other good markers, his prognosis is still expected to be good). When we got that last marker and it was not the one I had hoped for, I remembered what I had felt like God was saying to me the day on the patio.
Over the last couple of years, I have read about patients with all good markers who have not done nearly as well as expected. I have also read about patients with all the bad markers who have done much better than expected. And I realize that only God knows the answers to our futures. Not just those of us who are living with a diagnosis, but every single one of us. As much as I don't want John to have leukemia, I see that God is teaching us how to trust Him even more as we walk this new path together. I have learned to put CLL in my peripheral vision now and just live in today. I don't let myself project very often. And I don't think about CLL all the time. John was somehow able to do this right away. He took it in stride from Day One and just continued on with his life without missing a step.
Others living with a chronic illness call this the "new normal." In the first few weeks and months after diagnosis, I was on an emotional roller coaster and couldn't imagine life ever being normal again. But it is; only better. I remember telling a friend about the diagnosis and -- because she loves me so much -- she said, "It's not fair. This shouldn't be happening to you guys. After everything you've been through, you finally found each other. And it's just not fair that this has to happen to you." I told her that was not my struggle. I wasn't entitled to the wonderful marriage and wonderful husband I had. God didn't have to give me John in the first place. But He did and I am SO thankful for every day He gives us together. I'm also very thankful that I am by John's side to look out for him and be his very assertive patient advocate. (He is a passive patient and he needs a wife like me to help him in this CLL battle!)
When I began this post, I didn't know I was going to write all this. It just flows out of me when I start writing. What I did intend to say is how much I appreciate my friends and how much I appreciate that I am "allowed" to talk openly about his CLL now. In the beginning, John didn't want to talk about it to anyone. I had to convince him to tell his own family. He doesn't like people to worry about him. He doesn't like attention drawn to himself. He didn't want people to feel that they had to acknowledge it (I'm sorry to hear...). He didn't want anyone to view him any differently, or with sympathy. He just wanted his privacy. And I just needed to be able to admit that it wasn't any other day and I wasn't okay. But out of respect for him and his wishes, I shared with very few. Thankfully, he has let down his guard over the last couple of years and begun to share his CLL with more of his friends. And recently he told me he didn't care anymore who knew about it. He even said I could write about it on my blog.
I went to a pool party today with some of my girlfriends and I was sharing about his health issues with one of them. It felt so good to be able to talk about it. I can never hear too many times, "You all will be in my prayers." We are doing fine and I'm not in pieces like I first was. But it's so reassuring to know that our friends are there for us, praying for us.
I know that what Lillian has been through and what she is still going through is harder than anything John has gone through up to this point. I know how much it has to mean to her to know that she is loved and people care enough to pray for her recovery and her strength to endure this process. I just want all of you who read my blog to know that I do not take your concern, your love or your prayers for granted. I appreciate my friends so much.
It took me a little while to feel like I fit in with all these new friends in Murfreesboro. Everyone here seemed to go way back and it felt like everyone knew each other (except me) at first. But at some point I stopped feeling that way and began to feel like I was becoming a part of my new friends' lives. It absolutely amazes me how many wonderful friendships God has added to my life since I've been with John. And He continues to add new friends all the time. I have so much to be thankful for. God, you know that I am SO thankful for all you have done for me!
This is a picture of my very good friend, Anita, and me at the party today.
I was just watching the last few minutes of Oprah. The show was about receiving and living with a dreaded diagnosis. Cancer, HIV, multiple sclerosis. I think it was Fran Drescher who said that sometimes the best things come in the ugliest packages. Although she did not want to have cancer, good has come from it for her. Magic Johnson expressed similar feelings about living with HIV and Montel Williams spoke about his MS. Oprah said that every few minutes (I think it was possibly every two minutes, but I can't remember for sure) someone gets a cancer diagnosis. I personally know of quite a few and have made many friends who are battling cancer as a result of John's diagnosis and my online quest for knowledge and support.
No matter what it is, there is something very special about knowing someone else relates to what you're experiencing. For instance, nobody knows what it's like to lose a mother -- until you lose yours. When someone shares an unwanted diagnosis, you know they understand what it's like not only to receive the unwanted diagnosis, but they know what it's like to learn how to live with it and be thankful for every day. If anything, you become even more thankful for every day because you no longer take a day of life for granted (whether it's your own diagnosis or your loved one's).
I lost my paternal grandmother to cancer when I was ten years old (and she was forty-nine). I really would have liked to have known her as I grew up. My dad used to tell me that I had a lot of her traits. And I know I inherited her love of writing. I remember her smile and her laughter. I really believe I would have been close to her.
I lost my mom to colon cancer when I was twenty-eight (and she was forty-nine). We weren't really close before her diagnosis, but we became much closer while she was terminally ill. That made her loss more painful, but was also a great comfort for me in the years to come.
When John was diagnosed with CLL two years ago, I didn't think I could bear it. Ever since we met, I felt like I'd won the lottery. I never dreamed I would be so happily married. And then three and a half years into our fairytale marriage, he was diagnosed with an incurable cancer. I couldn't hardly believe it. Every day since the beginning of our relationship, I have thought "I can't believe how much I love you" every time I looked at him. After his diagnosis, every time I looked at him tears welled up in my eyes and I thought, "I cannot bear to lose you." It was so hard. And making it even harder was John not wanting to share this diagnosis with hardly anyone. He is so private. (I am so NOT private.) I became a recluse all summer. Sometimes I couldn't answer the phone because I knew the person calling would hear something wrong in my voice and I couldn't talk about it. So I couldn't talk. But I COULD talk to my online CLL friends; especially my CLL Christian Friends.
One day, while still in this emotionally devastated state, I was washing down my back porch and watering my flowers. I had learned so much about CLL and all the different prognostic markers. I spent just about every waking moment reading all I could about CLL so I could take care of John and help him make the best treatment decisions for his long term survival and best quality of life. This particular day, I was begging God to let him have all the good markers (which would mean a very benign CLL and perhaps twenty years treatment free). While I was crying and praying, I had one of those moments when I absolutely knew God spoke to my heart. He told me not to put my hope and my faith in a certain outcome, but to put my hope and faith in Him and in the promise that He was working all things for our good, "even this." I accepted that and took it to heart. He also impressed upon me that it was premature for me to grieve losing my husband. My husband had not only not been taken from me, he was still a very healthy man. He might outlive me. So how silly was it for me to waste our present by projecting myself into a future I did not think I could bear to face? God wasn't asking me to face that yet. He began to impress on my heart that there might be a day when I would grieve, but not now.
Not long after that, we went to the Mayo Clinic for a very thorough evaluation by an expert. We found out that John had three out of four good markers, but the one bad one he did have was the one that most predicts a shorter time to treatment and not the best prognosis (though with the other good markers, his prognosis is still expected to be good). When we got that last marker and it was not the one I had hoped for, I remembered what I had felt like God was saying to me the day on the patio.
Over the last couple of years, I have read about patients with all good markers who have not done nearly as well as expected. I have also read about patients with all the bad markers who have done much better than expected. And I realize that only God knows the answers to our futures. Not just those of us who are living with a diagnosis, but every single one of us. As much as I don't want John to have leukemia, I see that God is teaching us how to trust Him even more as we walk this new path together. I have learned to put CLL in my peripheral vision now and just live in today. I don't let myself project very often. And I don't think about CLL all the time. John was somehow able to do this right away. He took it in stride from Day One and just continued on with his life without missing a step.
Others living with a chronic illness call this the "new normal." In the first few weeks and months after diagnosis, I was on an emotional roller coaster and couldn't imagine life ever being normal again. But it is; only better. I remember telling a friend about the diagnosis and -- because she loves me so much -- she said, "It's not fair. This shouldn't be happening to you guys. After everything you've been through, you finally found each other. And it's just not fair that this has to happen to you." I told her that was not my struggle. I wasn't entitled to the wonderful marriage and wonderful husband I had. God didn't have to give me John in the first place. But He did and I am SO thankful for every day He gives us together. I'm also very thankful that I am by John's side to look out for him and be his very assertive patient advocate. (He is a passive patient and he needs a wife like me to help him in this CLL battle!)
When I began this post, I didn't know I was going to write all this. It just flows out of me when I start writing. What I did intend to say is how much I appreciate my friends and how much I appreciate that I am "allowed" to talk openly about his CLL now. In the beginning, John didn't want to talk about it to anyone. I had to convince him to tell his own family. He doesn't like people to worry about him. He doesn't like attention drawn to himself. He didn't want people to feel that they had to acknowledge it (I'm sorry to hear...). He didn't want anyone to view him any differently, or with sympathy. He just wanted his privacy. And I just needed to be able to admit that it wasn't any other day and I wasn't okay. But out of respect for him and his wishes, I shared with very few. Thankfully, he has let down his guard over the last couple of years and begun to share his CLL with more of his friends. And recently he told me he didn't care anymore who knew about it. He even said I could write about it on my blog.
I went to a pool party today with some of my girlfriends and I was sharing about his health issues with one of them. It felt so good to be able to talk about it. I can never hear too many times, "You all will be in my prayers." We are doing fine and I'm not in pieces like I first was. But it's so reassuring to know that our friends are there for us, praying for us.
I know that what Lillian has been through and what she is still going through is harder than anything John has gone through up to this point. I know how much it has to mean to her to know that she is loved and people care enough to pray for her recovery and her strength to endure this process. I just want all of you who read my blog to know that I do not take your concern, your love or your prayers for granted. I appreciate my friends so much.
It took me a little while to feel like I fit in with all these new friends in Murfreesboro. Everyone here seemed to go way back and it felt like everyone knew each other (except me) at first. But at some point I stopped feeling that way and began to feel like I was becoming a part of my new friends' lives. It absolutely amazes me how many wonderful friendships God has added to my life since I've been with John. And He continues to add new friends all the time. I have so much to be thankful for. God, you know that I am SO thankful for all you have done for me!
This is a picture of my very good friend, Anita, and me at the party today.
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