Confessions of Weakness from a Bad to the Bone CLL Patient Advocate

Today was another Sarah Cannon day. Let's just say I have spent a fair amount of time there in the last three years.

John had his first abnormal blood test in April, and was officially diagnosed in June of 2007. He had eight rounds of Rituxan in 2008, then chemotherapy (FCR) in 2009, and is now in a clinical trial receiving CAL-101.

Marian, John's mom, was diagnosed in January of 2008. She has progressed steadily but very gradually and has only recently needed to begin treatment. She is enrolled in a clinical trial studying Rituxan in combination with CAL-101. Her trial is focused on older, previously untreated patients receiving the two drugs together. John's clinical trial is studying patients receiving CAL-101 as single agent after having failed or relapsed from other treatments. (They are both doing well so far.)

CLL is so different in every patient. John's CLL progresses in his lymph nodes, more like a lymphoma. Marian has had a few slightly enlarged nodes, but her progression has been primarily in the blood and bone marrow. Marian was diagnosed in her seventies and John in his fifties. It's very unusual for a parent to be diagnosed after their offspring.

There are prognostic markers in CLL which can predict what category of risk the patient is likely to fall into, although not with absolute certainty. John and Marian both have "mixed" prognostic markers. They each have one bad marker, but not the same bad marker. They have familial CLL, but their CLL is still very different. This is not a one size fits all disease. And responses to treatment also vary. There are many factors to consider in every decision one makes.

I realized early on -- through a tremendous amount of research -- that my involvement as a patient advocate and an educated caregiver could make a significant difference in John's care and in his future health. At a time when I felt about as helpless as I have ever felt, there was one productive thing I could do: read and learn everything possible about his disease. It made me feel like I was doing something  ... besides crying, which was not helpful.

In those early months, I had no idea that I would soon become a patient advocate/caregiver for John's mom as well as John. But that is exactly what happened. And now the joke is that I see Dr. Flinn -- and spend twice as much time in the treatment room -- as either one of them do. Neither of my patients have been to one appt. without me. And as long as God keeps me in good health, they never will.

As far as I'm concerned, whether it's nurturing my grand babies, my husband or my mother-in-law, caring for the people I love is the most important "job" I will ever have. And I want to do it well. I take pride in doing it well. And I hope that is an acceptable pride (spiritually). If it isn't, then I guess I need to start repenting.

*Here's the confession part:
Sometimes the emotional stress takes a toll on me and my edges get frayed (ever so temporarily). Although I can be a tower of strength in the intensity of a crisis, I can come unglued internally over something very small. I have never been more aware that every trait we possess has two sides. And the flip side to emotional sensitivity is ... emotional sensitivity. I feel everything deeply -- good and bad. Although this trait enhances my ability to respond compassionately to others, it can also just flat ... out ... wear ... me ... down.

Lately I have felt extra tired. And it's not because there are so many physical demands on me. It's the emotional stress I put on myself; wanting to be the perfect everything for all the people I love and knowing the reality of how inadequate and flawed I really am. I can look so amazing and strong and capable to the outside world, but I know how weak I can be. I feel my weakness even when I'm "being strong." (If you've been a caregiver to anyone fighting a serious illness, you know exactly what I'm saying.)

I am completely dependent on God's grace and mercy. Otherwise, I will be strong in short spurts, but I will never endure over the long haul. I'm just too prone to hit an emotional wall with a splatter right after I impress you with a successful high hurdle. LOL.

Words of love and affirmation are big motivators for me. I can be feeling so lousy, and yet all it takes is one significant person in my life saying, "I appreciate you" or "Thanks for taking such good care of me" and my batteries are instantly recharged. This past week, I have had not just one but numerous family members say or write very loving and affirming words to me.

None of them may ever know what a boost they have given me or how low my batteries were. Hopefully, if they read this blog post, they will.


As most of you know who have been reading my blog, another pressing concern has been John's sister (Lillian), who has been battling cancer of the head and neck for over a year. She really needs our prayers. After surgery, chemo and radiation last year, her cancer is back and it's aggressive. The tumor has grown at a fast pace and it is inoperable at this point. She is not strong enough physically to endure more harsh chemo. (She eats only through a feeding tube and is in constant pain.) She is going to begin a gentler treamtment (a monoclonal antibody) tomorrow. Although it will not cure the cancer, it will hopefully shrink the tumor, slow the progression of disease and relieve symptoms to give her better quality of life. Our entire family greatly appreciates your prayers.


Linda said…
Shari - you are in my prayers every day - may God strengthen and sustain you and your family! You were truly sent to John & his family "for such a time as this".

Your family is in my prayers, Shari

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