Writing

I am starting to feel the itch to begin writing another book. Actually, I have a couple of book ideas in my head. I want to write about battling a chronic, incurable illness from the caregiver's perspective. And just as my first book was, it would be the story of a personal journey. I'm also thinking about writing a book sharing the healing and growth that has come as a result of my first book.

I have saved all of the personal messages I have received from readers. I would never include personal information that would identify a reader who preferred to remain anonymous. (So don't be concerned about that if you've written to me!) But several friends have told me they think it would be fascinating to read the responses of readers and the impact the book has had on others as well as how that feedback has contributed to my own additional growth and healing. And it would not be difficult to share feedback without including any personally identifying comments. I don't know if I will actually write that book. At this particular moment, my thoughts are much more focused on our battle with Chronic Lymmphocytic Leukemia and the emotional rollercoaster ride of that journey. But I do think a sequel to my first book is a possibility.

When I think about writing another book, I don't think in terms of how many people will buy it. I think of it as an opportunity to leave something of my life and heart after I'm gone. It's very satisfying to have had the opportunity to share details of my personal journey on the pages of a book and know that it's in print now for anyone who has an interest in reading it. A future reader might even be a great grandchild, great niece or nephew, who never met me but wants to know more about his or her family. Many people these days search for the smallest scraps of information about their family histories. I would love to know more about my ancestors and I would devour a book if one existed.

Breaking the Chains
was an outpouring of my heart and soul on so many levels. My greatest desire in writing it was to help other people. It was at times a struggle to write because I had to dig up so much emotion and relive many painful experiences. As I have shared before, I felt stress and anxiety over people's possible reactions and I anticipated harsh criticism for my honesty. But the actual writing part of it came so naturally. It was a conversation with the reader from beginning to end. And it has enabled me to have a conversation with so many people I would never have had the opportunity to share with any other way. I am still receiving emails and messages on Facebook from all over the country, thanking me for my courage in writing the book and telling me that the book has helped them and others they know. It sounds like my book is being passed along to additional readers continuously. I cannot begin to express how touching and rewarding all of that feedback has been. I deeply appreciate everyone who has taken the time to write to me.

I always believed the book had the potential to help other people and be a tool in their own healing. But I did not anticipate what the book would do for me personally. As a result of writing it and hearing from so many readers, I have experienced a level of healing and closure I never thought possible in this lifetime.

Just this morning I received a message from someone I do not know, in another part of the country, who recently finished the book and wanted to thank me for having the courage to write it. She wanted me to know that others, whose lives have been affected by the movement I grew up in, are continuing to pass along my book. I just appreciate knowing that my story is being read. It doesn't matter to me if ten people read each copy. It's not about book sales. I tell my husband regularly that the feedback I've been blessed to receive from so many readers means more to me than a million dollars. I don't think he can quite understand that. But I know some of you can.

Few authors make a living writing books. If you are a writer, you write because you have a passion for writing and communicating. I not only have a passion for writing, but I have a burning passion to share with and relate to others. I feel so blessed to have had the opportunity and the encouragement I needed to get over the hurdle of self-publishing my first book. Now that I have, I realize that it's not as difficult as it might seem. I can do it again.

When John was first diagnosed with CLL, I read several books that were recommended to me. If you've been reading my blog for years, you might remember when I was reading (and blogging about) "Prayer: Does it make any difference?" by Phillip Yancey. I wasn't sharing on my blog about John's diagnosis at that time (out of respect for his desire for privacy), but I was severely wrestling with prayer as it related to physical healing because of the diagnosis and my past experiences with praying for healing that did not come. It was an agonizing time for me and reading books about other people's experiences helped me to feel less alone in my own struggle. I would love to help someone else feel less alone in the future.

On the subject of John's CLL, we are still waiting for a call telling us that John has a spot in the CAL-101 clinical trial. When we do, he will repeat a lot of testing (including another bone marrow biopsy) before he begins. His lymph nodes continue to go up and down. They looked a little better for several days and now they seem to be enlarging again. But tomorrow they could look better.

John doesn't feel good most of the time. But he looks deceptively great. Everyone we run into is surprised when I tell them that he isn't feeling well because he looks so good and the natural assumption is that he must be doing much better. He lives with a lot of fatigue and tiredness. But it is more than that. He described the pain in his body to me recently as being similar to when you have a kink in your neck that makes movement painful. But, in his case, that pain is all through his body. It's not so bad in the morning, but it increases throughout the day and many times he is in a lot of pain by the end of the day. He's also been having shoulder problems (in both shoulders) since his chemotherapy ended that remind me of when I had tendonitis of the rotator cuff and frozen shoulder years ago. We don't know if all the pain is related to CLL, to chemo or totally unrelated to both. I don't think anyone, including the doctor, can say with absolute certainty.

One of the challenges of dealing with an incurable chronic illness is knowing how much or how little to say when asked "How is John?" It is so helpful to have this blog and be able to share honestly by writing rather than only through verbal conversation. It's not that I never want to talk about it. I do. But sometimes I feel so weary of repeating the same details. (Sometimes I even feel redundant here!) It's a difficult conversation for both parties; because what can anyone say? If someone tries to encourage me or alleviate my concerns by pointing out nothing but positives, I sometimes feel that they are denying or diminishing the gravity of the situation. But if someone responds with their own fear and imaginations of how awful and scary this must be for me, I feel like I need to reassure them that it's okay. The sky isn't falling (yet). There is hope.

It is so complex. Not everyone has the gift of words or knowing exactly how to offer support, even when they want to. I know that. I hate for any of my friends to feel the pressure of responding to me just right. And often I cannot talk about our circumstances without tears. I occasionally feel like the person asking wants to hear a positive response to the point that they hear precisely what they want to hear. And it's never because they are uncaring. It's just that we vary in our own coping styles. When I am asked in a setting where I don't want to be a downer or have my emotions triggered, it's often just easier to say, "Fine." But it's not entirely true.

However, all things considered, we are fine. So it's not entirely false, either.

In spite of the heaviness I often feel, life is good. I'm blessed and I'm thankful. Please pray that we will be able to get started on CAL-101 soon and that it will work for John like it has been working for a lot of other patients with lymph node issues. I just want John to feel good again and be able to enjoy quality of life. The hardest part about being in the caregiver role is the helplessness you feel to make things better. John is not a complainer. He has shown such strength and stability through all of this. But occasionally he will wonder out loud if he will ever feel good again. And I so want to be able to say "Yes, you will!"

Comments

What an encouraging post! God bless you and your family as you make your way through these trials. You are an inspiration.
Stephanie said…
Shari,
I stumbled upon your blog from another CLL blog. You are ME, today you sound just like me. My husband of 30 yrs has CLL. He is 53, I will soon be 50, other than he has CLL, life is perfect. He is fine is my standard answer, so not true, but the same as you, I don't want to have anyone feel the way we do. 'WE" started the CAL 101 trial 3 wks ago, and it has done what the last year of chemo failed to do. His nodes have shrunk to almost nothing, fatigue all ready lifting, muscle pain gone, not one complaint. I'm almost afraid to tell anyone how well he's doing with this. Scan's are next week. I hope your husband gets to start this trial soon. Your grandchildren are so sweet. We are expecting our second in August. Good luck to you all.
Shari said…
Hillary, thank you for leaving this comment. When I write about our battle with CLL, I often wonder later if the raw emotion in my posts is ever a downer for readers. Your words were reassuring to me this afternoon.

Stephanie, I'm glad you found my blog accidentally. In the first two years following my husband's diagnosis, I could not write openly about what we were going through, and having to hold in so much emotion was very challenging for me. It really does help me to know that someone who is reading is relating to our experiences. Your comment gave me a lot of comfort and encouragement.

I just turned 51 and my husband is 56. We have been married six and a half years now. We both had a rough road before finding each other, but our marriage has been a fairytale.

John was diagnosed three years ago. He failed to get a good response to Rituxan as single agent and then failed FCR + Lumiliximab more recently. We are both just chomping at the bit to start CAL-101 and hoping John will get the kind of results you describe. I'm thrilled for your husband's great response and I can imagine how you are feeling right now. I often allow myself to anticipate the same kind of results for my husband and the joy/relief I will experience just knowing he feels good again. I was telling friends over lunch today how hard it is to see the person you love have to go through this battle. I can never talk about that without crying. And I hate to make other people sad. Sounds like you know exactly how I feel. Thank you for taking the time to communicate that to me! And thanks for the sweet words about my grandsons. I adore them and I'm pretty sure you can relate to me as a grandma, too!

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