Thankful for CLL Christian Friends

February 2007
Just prior to diagnosis
July 3, 2007: I introduced myself to the online support community of CLL Christian Friends.

John had gotten his first abnormal CBC results in a routine check up with his doctor in April. He had gone for the check because he was feeling tired a lot and had noticed one enlarged lymph node in his neck (that he never pointed out to me and I hadn't noticed). His white count was around 30K. He was given antibiotics and the CBC was repeated six weeks later -- in June. Same results.

Our PCP had tried several times unsuccessfully to reach John and had not gotten a returned call. Our PCP is also a good friend. John's mind was on business, not his results. Finally, Mike called me. He told me he suspected CLL and John needed to see an oncologist for a confirmed diagnosis but he couldn't get John to call him back. I had been clueless up to that point.


My initial reaction was calm. My dad had been diagnosed years earlier with CLL. And he'd never had any symptoms other than a high white count. He had never needed any treatment whatsoever. He had other health conditions -- like Parkinson's -- and whatever fatigue he did have, he tended to attribute to that. (He lived 18 years beyond his CLL diagnosis and died in 2014 from Parkinson's, not CLL. To my knowledge, he never had a CLL related event or infection.) In 2007, he was still doing pretty well and living an independent life. So I thought, Okay. If John has to have something, I'd choose this. It's chronic and treatable if it progresses. It's not a death sentence. I remembered my dad's physician calling it "the good cancer" and saying that if you had to have cancer, this is the one you'd want to have. Most patients die with it, not from it. All of those words came back to me and made me feel hopeful.

However, I wanted to learn more. I wanted to know what treatment options had developed since my dad's diagnosis. I knew John would be passive. So I began to research and immerse myself in CLL reading. I felt so helpless. This would be the only thing I could do to help my husband (other than emotional support). I would invest myself in being his well-informed health advocate as well as his caregiver.

I discovered that CLL is not a good cancer at all. It can be indolent, as it was in my dad's case. But it can also be aggressive. I read about different prognosis "buckets" and "markers." I also read that the median survival from diagnosis (in 2007) was eight years. John was in his early fifties and we had only been married three years. I couldn't imagine my life without him and the fear of losing him so prematurely was almost more than I could bear. I went through each day on the verge of tears; unable to distract myself or stop my mind from projecting into our uncertain future.

Despite my research initially increasing my anxiety, I have never once regretted learning. I'm not a denial person. Reality doesn't retreat because you don't face it. And I quickly learned how vital it was to make informed treatment decisions early on. The last thing you want to do is suffer unnecessary toxicity from harsh treatment like chemo prematurely. In most cases, CLL progresses slowly and there's no urgency to rush into treatment. When the time came to treat, there were milder therapies one could try first. I learned all about complications and side effects so I could help John understand all his options and all the potential repercussions.

I was having chronic anxiety -- worsened by the fact that John didn't want to tell anyone about his diagnosis. He isn't secretive, but he's private. He was a visible person in the community, being a co-owner of a car dealership. He knew lots of people. He didn't want to have "I'm sorry to hear about your leukemia" conversations. He just wanted to continue living his life the way he always had. That is his coping style. Set the diagnosis aside and just live normally. I had to convince him to tell his mother and his brothers!

I wanted to respect his wishes. And I did. But that is not my coping style and the stress of not being able to share with close friends what I was going through only increased my anxiety. I felt isolated and alone and emotionally fragile. I was scared. I cried a lot.

I tried so hard to be strong. But by fall I had developed reflux and a mild case of shingles from the internalized stress.

I'm not an actress. I have no poker face. So I stayed home most days and sometimes didn't even answer the phone because I knew I couldn't disguise the stress in my voice from friends who knew me well. All I did for weeks and weeks was read. And one of the sites I read was CLL Christian Friends.

CLL Christian Friends is a forum where patients and caregivers and even a few CLL specialists contribute. It's a place where one can learn from others about the medical side of this journey, but also where I received so much emotional support and many assurances of prayer. It was also where I learned we had a highly regarded CLL specialist in Nashville and how important it was to be in his care as opposed to a general oncologist. I immediately made an appointment for John to be evaluated by him. (We had already made an appt. to go to Mayo for a thorough evaluation, which we kept. But we could have saved ourselves the trip once I found out about Dr. Flinn.)

I needed a place where I could acknowledge the harsh reality I was navigating and how it felt to ride this emotional rollercoaster. I needed a place where I could say I was scared. I needed to feel less alone in my "new normal." I needed community and friendship and empathy and encouragement. I needed prayer.

My initial "introduction" post was over 2,000 words. I might still hold the record for longest introduction. And the warm, comforting friendship I received there carried me through some really dark and scary days.

I also gleaned valuable information and advice about treatment. One very special friend I met there would later urge me to get John enrolled in a phase one trial for a new experimental drug, CAL-101, rather than considering (last resort) stem cell transplant after John failed chemo in 2009. Because I convinced John that we should try the clinical trial first and we asked for a spot, John was enrolled in that trial in May 2010 and he had a positive response almost immediately. Within days, the lymph nodes that had not been reduced by harsh chemotherapy began to shrink and disappear. Instead of the grueling SCT, with plenty of risk, his CLL has been managed by a pill in the morning and a pill at night. Had I not found CLL Christian Friends and my friend Randy, I wouldn't have even known we could ask for a spot in that trial.

In time, John relaxed a bit about sharing his diagnosis -- first with very close friends and family. I had to endure more than one caution about reading too much on the Internet from concerned friends. I knew I was intelligent enough to read only reputable sites and I disregarded those comments. I'm so thankful I did. I survived my emotions. But my husband might not have survived stem cell transplant. At that time, 40% of CLL transplant patients didn't survive the transplant. John was 55 years old. Of those who had successful outcomes, many did not have quality of life. Randy wrote to me extensively about the patients he had met who were considered "successes," telling me their condition was alarming to him.

I never would have known Randy if I had followed the advice of well-meaning friends and avoided the Internet. Had I not learned from others to avoid a rush to harsh treatment following diagnosis, John might have been treated unsuccessfully by the first oncologist we consulted. He wanted to do exactly what I had been warned against. And if John had received the chemo in 2007 that he failed in 2009, we would not have had the option of CAL-101. It's possible that John wouldn't be alive today. Thankfully, Dr. Flinn did not rush John into harsh treatment.

Chemo is lucrative, folks. There are lots of caring physicians who would not subject a patient to premature treatment for their own financial benefit. But I'm convinced there are doctors who do. The first oncologist we saw flippantly compared chemo to aspirin. I suppressed what I wanted to say in that moment and told John once we left the office, "You are not going to that doctor and we will fight about it if you even try to use the convenience argument." I knew John would be thinking primarily about how much time he would have to be away from work. But I was determined that he would have the best care. And I knew he wouldn't get it from a flippant, arrogant doctor. But I wouldn't have known what questions to ask and what answers to view as red flags without the education I received from CLL friends. Because of them, I didn't go into any appointment ignorant and passive. I honestly cannot relate to passivity when it comes to anything as serious as cancer.

We are now eight years and counting since John's CLL diagnosis. Had John not gotten into a solid remission in 2010 with CAL-101, so much of our life would be different. His CLL was progressing. We certainly wouldn't have pursued a business venture in West Virginia. We never would have met all our friends here. And we would have missed out on so many wonderful experiences we've been blessed to have.

I am so thankful John is here and healthy. I'm thankful for all the recent advancements in CLL treatment. There are several non-chemo drugs now that treat CLL orally. They work through different pathways, but similarly to the drug John has taken since 2010. If CAL-101 stops working, we have options.

I don't read about CLL daily anymore. I am not posting regularly on CLL Christian Friends. I'm living my life with CLL in the background most days. And that's another thing I so appreciate about my CLLC Friends. They are also understanding and supportive of my absence when I'm not checking in regularly. But the community is always there. And I will be forever grateful for them.

Thank you, my online CLL Christian Friends. I love you. I'm grateful for you.

Comments

Deb Light said…
Thanks you so much Shari. If our site has helped just one person!it is worth the time and money.But trust me we are all a family.If anyone is having a rough time with infections or complications from chemo and such we feel for them and pray for them and check up on them.We really care.I consider you and John as part of my extended family.I appreciate you taking the time to write this.I am so glad Randy talked you and John out of the transplant.I remember when they wanted me to do the stem cell transplant,there was only 30% success rate!Not enough for me either.I miss Randy and hate he lost his fight.I am sure he added extra years to his life by reading and being knowledgeable about his options.Love you and John and all our CLL friends!!

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