My blog has recently been added to Cancer Blogs, which is part of one of the largest networks of blog directories on the Web. Please visit my blog's personal page to vote for my blog and comment to other blog users.
I copied and pasted the above text from the Blog Nation site in order to claim this as my blog (it was submitted by a reader) and link to their site. I wanted to add a few of my own words to this post, though.
My blog did not start out as a cancer blog. I began writing as a personal / public journal of my thoughts and struggles before my husband's diagnosis with chronic lymphocytic leukemia. And after he was diagnosed, I did not have his consent to blog about his CLL journey. Initially, he was very private about his CLL and did not want to discuss it with anyone. He was reluctant to talk about it even to his own family. He is the kind of person who is not only very private, but he does not like to bring attention to himself and he does not like to burden others. His main argument against telling his mother about his CLL was that it would only worry her. I countered his argument by pointing out how upset I would be if my son did not share such important information with me. I would be hurt. And more importantly, I would be deprived of the opportunity to pray for my own son. We can't control whether or not someone worries about us. And mothers do not simply worry about a cancer diagnosis. Mothers sometimes just worry. It's a part of our human condition.
Well, I convinced him to tell his family and to let me confide in members of my own. And over time he became more comfortable sharing with a select group of friends. But his main reason for not wanting to go "public" was his profession. He deals with the public. He's a car dealer. He's been in business for himself for many years and knows a lot of people in the community. He didn't want people to feel they had to address the "news" of his health issues. He did not want to have this conversation every day: "I'm so sorry to hear..."
John took this diagnosis in stride and wanted to continue to live his day to day life no differently than he had prior to the diagnosis. And he did not want to be treated any differently. CLL is a chronic blood cancer. It is not an immediate life and death struggle for most. CLL patients can live a very long time with indolent forms of the disease. And research in CLL is resulting in some very exciting new treatments, which offer even greater hope for longevity in patient survival. John's attitude toward his CLL has always been very positive. "It is what it is." His diagnosis did shake me up emotionally at the beginning. But it never seemed to rattle him. In fact, I'll never forget one particular day when I was struggling emotionally. All I could think of in the first few months, every time I looked at him, was, "I can't lose him." And that thought would make me cry. On this particular day, I hugged him and that thought was so present that my whole body ached. I let go and he looked at me; saw the tears spilling out of my eyes. (He is kind of used to that because I often tear up just telling him how much I love him. But he knew I was crying on this occasion because I was afraid.) His lips formed a frown, he stomped a foot, and indignantly declared: "I'm not dead yet." And we laughed...hard. One of my best pieces of advice to any patient or caregiver reading is: Don't ever stop laughing. Laughter is so good for the soul. It's good for your relationship. It's healing. And it really is the best medicine for stress. You absolutely cannot lose your sense of humor in this battle. But I believe a sense of humor (especially about yourself) will get you through life, whether you are living with a diagnosis or not.
But I digress. Back to the whole privacy issue. It turned out to be a good thing that I talked John into sharing his diagnosis with his mom for reasons I never even anticipated. She, also, was diagnosed with CLL just months after John's diagnosis. Because she knew all the research I had already done on CLL (information I shared with his family in detail), she was actually kind of prepared to receive this news. She didn't experience the shock or fear part the way she might have. And since we had already established a relationship with Dr. Ian Flinn at Sarah Cannon (a highly regarded specialist in CLL), I urged her to choose him as her CLL physician as well. And today she and John are both in clinical trial with CAL-101, enjoying good health and excellent results from this new study drug.
I am a person who shares openly for a variety of reasons. For one thing, it's my nature and comes naturally. But in addition to that, I just think it helps so much to know we are never alone in anything life hands us. In any given situation, many others have walked the same path or are walking the path simultaneously with us. And still others have much greater challenges. Feeling isolated in our struggles is one of the hardest things about anything we go through, and certainly any kind of illness. And this is true whether you are the patient or the caregiver. It always helps to know we are not alone. I am reassured by knowing there are others who feel and understand what I am feeling or facing. And if I can provide information and emotional support for others, I find it extremely rewarding to do so. I found it difficult to hold my emotions in and not write about our journey for the period of time I did not have John's consent to share.
In May of 2009, John gave me permission to write about his CLL on my blog. He was hospitalized for removal of a kidney stone and I asked, "Do you really care anymore who knows about your CLL? Could I please write about it on my blog?" And he said that was fine. So that was when I first addressed CLL on my blog (http://sharihowerton.blogspot.com/2009/05/reflections-from-hospital-room.html) and I have been writing about it ever since.
I'm so happy to report that we are successfully managing John's CLL and his mom's CLL with CAL-101. There hasn't been nearly as much to write about recently because they are both doing so well. But I do post an update every eight weeks following their regular checkups (tomorrow is their next appt.). And I have journaled about both their CLL journeys since 2009. I have had Marian's blessing since diagnosis. She likes being able to refer a friend to my blog for details on how she's doing. Blogs are wonderful tools and such convenient ways to share information, inspiration, joys and struggles.
In addition to CLL and other health challenges I've faced recently (frozen shoulder and foot surgery), I write when I feel inspired to share my thoughts (on many different topics), when I'm trying to process emotions, when I'm struggling, when I'm thankful, when I want to share an event or pictures of special people and occasions in our lives. My blog can be so random. I don't think of it necessarily as a cancer blog. I'm just a person who is living life to the fullest in spite of cancer being one facet of that life. At this moment, I am the caregiver/spouse/daughter-in-law rather than the patient. But that doesn't mean I will always be solely in that role. My dad also has CLL. His has been the very indolent form of CLL. In 15 years, his CLL has never been symptomatic. Although he does have other health issues that are a much bigger challenge (like Parkinson's). But I'm well aware that CLL can be familial (John and his mom) and I know it's possible I could develop it at some point in the future...or I could be diagnosed with some other form of cancer (my mom died of colon cancer at a young age). I am enjoying extremely good health today, but I know I am also mortal and will eventually succomb to something, as all of us will. What is it they say? Life causes death?
I'm thankful for medical research and technology and excellent physicians like Dr. Flinn. I'm thankful my husband and mother-in-law are enjoying good health. I initially struggled with self-imposed loss and grief in anticipation of losing John and the fear of not having a long life with him. I allowed myself to read about median lengths of survival with CLL and projected myself into all kinds of worst case scenarios that I didn't think I could face. I put myself through a lot of emotional turmoil unnecessarily. And one day when I was praying (for good markers), I knew God spoke to my heart. Though not audibly, I know it was His voice and not my own because of how low I was that day. I had read about the markers; which were good and which were bad as far as prognosis goes. And I will never forget God telling me not to put my faith or trust in John's markers, but to put my faith and trust in Him and in His promise that He is working all things for our good (Romans 8:28), even this. He also gently and lovingly impressed on me that although there might come a day of grieving one day, this was not that day. He said, I haven't taken John. You have him. And he's healthy. Don't go in your mind to a place I haven't even taken you. Don't give up the time you have anticipating a future that has not arrived.
I won't tell you I've never felt emotional or fearful since that day. My blog tells a different story. But that day was a turning point for me. I'm trusting God for our future. And I do believe He is working all things for our good, no matter what circumstances may look like on any given day. He knew at diagnosis that CAL-101 was in John's future just when we needed it. I didn't know that. I had to trust Him for the unknown. When John failed chemo, God knew that would qualify John for the first CAL-101 clinical study. God knew CAL-101 would do for John what chemo couldn't. It was always under control from God's perspective. Just not from mine. And I have a whole life of experiences where God has taught me that lesson again and again. Not just with CLL. So I am learning how to better trust Him -- really trust Him -- all the time. And, of course, it's always easier to trust when you are happy with what God is doing in your life. But no matter what the future holds, I believe with all my heart that God loves us, God is for us, God is working all things for our good. I just realize that the ultimate fulfillment of that promise is eternal life, not necessarily the length of years we spend in this life.
If I ever have to lose John, it will be excruciatingly painful for me. It won't matter how old we are. Words cannot express how much I love, value and appreciate him. He has been a Godsend to me in more ways than I could ever describe to you. But I know someday that one of us will lose the other and have to continue living. When that time comes for one of us, it will be hard. But I'm living in today and not in my imaginary projected future. Today I am fully enjoying the life and the marriage God has blessed me with. And I'm not giving up one day of that joy. I know God will take care of us. And this life is not the end.
In sharing my life, my random thoughts and emotions, and our cancer battles on this blog, that is the hope I most want to strengthen and inspire in others. No matter what circumstances you find yourself in, God is there. He loves you. He has you. You are safe and secure. And this life, as we know it, is just a part of our journey. The destination is one we can only reach by passing from this life. And I try to remind myself often that the goal is to get to that destination and see Jesus. The goal is not to stay here forever.
If you are visiting my blog for the first time through this new connection, I hope you'll find this to be a good resource for information and encouragement. We're in this together.