Monday, November 29, 2010

"Badge of Recognition"

My blog is apparently being featured as a leukemia resource at the above website.

On the CLL front:
Things are going smoothly at the moment. Marian finished her eight weeks of Rituxan therapy last week. She has had no side effects or problems and is feeling good. She will have more ct scans in the morning and an appointment with Dr. Flinn Thursday. This weekend she will be a free bird -- able to go home for a couple of weeks before her next appointment. From this point on she will just be taking CAL-101 in pill form, morning and night. Her platelets have improved greatly over the last eight weeks. Her WBC is stable and should start to show more improvement in the next few weeks. CAL-101 clears the nodes first and takes a little longer to attack the malignant lymphocytes in the blood and marrow. I'm eager to see what her WBC is Thursday.

John's blood has been normal for months and his lymph nodes continue to shrink on CAL-101 as single agent. They have been visually undetectable for quite a while. He doesn't have to see Dr. Flinn again until mid-January.

I've had my fragile moments as a caregiver in recent months. But I'm feeling upbeat and hopeful that BOTH of my CLL patients are headed for some uneventful months (and hopefully years) with the help of this new treatment. I will keep you posted on their status!

Friday, November 26, 2010

Thanksgiving 2010

I have not had much time for my blog this week. I did all of my Thanksgiving shopping Monday, went to treatment and lunch with Marian Tuesday, then spent all of Wednesday and most of Thursday in the kitchen.

Thanksgiving is a lot of work, but it is always worth it. This year was extra special for me. If you read my blog with any regularity, you know how tough last year was. John was undergoing chemo and it was strongly recommended that he not be around kids (little germ carriers). It was a lonely time for me. John didn't feel social because he was so sick. But I felt isolated. When you are going through something so difficult at a time when most everyone around you is feeling festive, there is a sense of isolation that is very hard to describe. You have to experience it yourself to fully grasp it. And I would never wish that for anyone. I got through last year by thinking about and looking forward to this year. And it's hard to believe that this year is here already. This time last year is still so vivid in my memory, as if it only happened two or three months ago. I'm really thankful that John is stable and we are able to enjoy the holidays.

I'm not one to take for granted the simple pleasures in life anyway, but I am even less likely to since John's diagnosis.

Another reason this year was extra special for me has to do with my nieces and nephews. For the last week or two the older ones have been letting me know (mostly on Facebook) how much they were looking forward to coming to our house for Thanksgiving. Knowing they were excited about spending the day together meant a lot to me. I adore my nieces and nephews.

I am so glad Rebecca reminded us that we needed to take a group picture. Sometimes trying to get a picture of an entire group (including uncooperative kids and/or a crying baby) seems like too much effort. But it's an effort you never regret. This was such a happy Thanksgiving. I'm glad we preserved the memory.

The guy sitting next to Chris is John's brother, Rob. Rob blinked in this shot, but it is the only one where Jackson is looking at the camera. Back Row left to right: Shari, John, Lexi, Matt, Karlie, Cheryl, Joshua, Rebecca holding Pax. Seated: Danny holding Andrew, Jackson, Chris holding Nicole, Rob and Marian.
Karlie, Matt and Lexi with Aunt Shari...
The young cousins (Nicole, Jackson, Andrew and Joshua) watching Toy Story 3 in my bed...

Rob, Marian and I are off to see a movie on this Black Friday. I have never had the energy for Black Friday shopping. I am all about Black Friday RELAXING.

Friday, November 19, 2010

April Slayden McKinney appears on the TODAY show Monday!

If you look under "blogs I read" you will see one entitled "Passionately Cooking Newlywed" written by April Slayden McKinney. She is the daughter of a good friend of mine. I met April for the first time last year when she asked if she could interview me on camera for an assignment, and I agreed.

I knew the day I met her that April was special. She is bubbly, talented and driven. She also has a passion for food and cooking. This year she was a finalist in a Paula Dean recipe contest and was selected to appear on Paula's show. More recently she entered a TODAY show Thanksgiving recipe contest and was selected to appear on the TODAY show Monday, November 22, 2010. So if you tune in on Monday and see April, I just wanted you to know that she's a friend of mine ... because I am so proud of her!!!

In addition to her appearance on TODAY Monday morning, News Channel Four will air a segment they taped with April on the ten o'clock news tonight.

Way to go, April! I am so excited for you!

Wednesday, November 17, 2010

Humor + Communication = Appreciation

Just below this post, I shared a link to a list of "Lessons" for newly diagnosed cancer patients. It's a very serious list of helpful tips. I only read through it once and I don't think having a sense of humor was on the list (for obvious reasons; it's not that kind of list). However, the value of maintaining a sense of humor along with open, honest communication has been on my mind a lot lately. More specifically, the ability to laugh AT MYSELF has been one of the most helpful survival tools in my life regardless of my circumstances. I have found that laughter is one of the best ways to break stress and tension. But the key, in my estimation, is being able to laugh at myself.

John and I have always communicated well and we both try not to take ourselves too seriously. I remember early on in our relationship how much he appreciated my ability to laugh at myself when he teased me. I will never forget the first time he gently poked fun at me and I cracked up. He looked at me with astonished eyes and said, "I just can't believe that I can say things like that to you and you LAUGH!" What he probably didn't realize was that his teasing was the most loving that I had ever experienced. He never belittles me or puts me down with a joke. I amuse him and I don't mind. He sometimes calls me his little cartoon character (because I'm so animated). But I think a little cartoon character (who doesn't mind being one) was exactly what John needed in a wife. And I'm happy I can be that. I don't need to be taken seriously all the time. I would much rather laugh.

I am incredibly blessed with good, healthy relationships. That doesn't mean there are never bumps in the road. My son and I are very close. But we've had to work through issues just like any parent and adult child. I think we've done it well and with a sense of humor about ourselves. And we listen to each other. Whether I agree or disagree with his point of view, I try to make sure he knows that I'm really hearing him and I'm not invalidating him or his feelings. But I realize that I haven't always done it perfectly because not so long ago he shared something with me and instead of trying to present alternative ways to look at the situation, I just said, "I understand how you feel." He told me later that it was the first time I had responded that way to that particular frustration -- and how much he had appreciated it. It made such an impression on me. I don't think he meant that he didn't ever want me to offer feedback or advice. Just not every time. There is something so helpful in simply offering empathy and understanding.

I can't mention every relationship I'm thankful for in one blog post, but two other significant relationships I am thankful for are with my daughter-in-law and my mother-in-law. I am well aware of how many mothers-in-law and daughters-in-law struggle to get along and fail to appreciate each other. I've known extremely difficult (controlling and manipulative) mothers-in-law who made a healthy relationship impossible for their sons' wives and I've observed equally difficult daughters-in-law who resent even the most well-meaning mothers-in-law.

I did not have an easy relationship with my first mother-in-law. As a very young wife, I naively believed I could win her over and make her love me. But it seemed as if the harder I tried to please her, the more critical of me she was. (One of the life lessons I think I have finally learned is that you cannot make anyone love or understand you.) Before she died, the relationship had improved somewhat.  But the potential was not there for the kind of healthy relationship I enjoy today with Marian.

I learned a lot from my first experience as a daughter-in-law. As a result of the pain and frustration I experienced, I determined in my heart -- long before Danny ever met his future bride -- that I would not cause stress in his marriage by being a difficult or intrusive mother-in-law. I would love his wife unconditionally (even if she was difficult) and I would make no demands. I would not try to control or give unsolicited advice, and I would not impose myself on her. I would let her decide how close we would be and let the relationship grow naturally over time. With a great deal of satisfaction, I believe I can say that I have been successful in those goals. But I also must say that I have one heck of a special, amazing woman for a daughter-in-law. And she is very easy to love. Our relationship is not challenging or stressful. Rebecca and I are true friends. And I am very grateful for her (and my son's good taste)!

I am blessed to enjoy such a wonderful, uncomplicated relationship with both my daughter-in-law and my mother-in-law. But we are all human beings with personalities and our own unique traits. It's not that there is never the potential for conflict or misunderstanding. I think the real key is that I can communicate openly and honestly with both of them. I know they care about my feelings as much as I care about theirs. And all three of us have the ability to laugh at ourselves. When you can laugh at yourself, you give others permission to laugh with you. It is SUCH a gift!

Marian and I recently had a moment of minor tension, which quickly became a joke between us and ultimately resulted in many laughs. Sometimes Marian will let me know what she would do or prefer with a suggestion or a question. Whether it's "Aren't you going to set the table?" (which I never do) or "Don't you want to take the tablecloth off to show the pretty wood?" (which I never do) or "What you need on your dining room table is a low floral..." (which I don't really care about); she gently lets me know her preferences. Don't misunderstand. She is not controlling and does not have a manipulative bone in her body. But she is a mother and, as a daughter-in-law, sometimes those motherly suggestions sound like, "You're not doing things right." And I am very resistant to those kind of "motherly" suggestions.

A few nights ago I was putting a Thanksgiving runner on my dining room table and Marian wanted to help me (euphemism for supervise). First she didn't think I had it straight. (I hadn't asked for help. This is a task one person can easily manage. LOL.) And then she started talking about my centerpiece again. I was already well aware she doesn't like my centerpiece. There have been previous comments. (It's a crystal vase with marbles and a large candle in it. I put it together myself and I like it. Although I realize it probably isn't the "proper" centerpiece for my particular dining room, I just don't care.) But on this occasion, Marian had enjoyed an extra glass of wine with dinner and it made her just a little bit bolder than she would be normally. So she told me more assertively, "I don't like that centerpiece. You need to get..." I tried to ignore the comment. But then she pointed out that it didn't go with the Thanksgiving runner. I then pointed to the blue in the runner. However, when I didn't comply, she tried to pick it up and remove it (I guess she thought I would just let her). All of this is hysterically funny to both of us now. We've laughed about it several times. But in that moment, I will admit that I was a little irritated. I politely but firmly informed her that I liked my centerpiece even if she didn't and it was staying on the table with the Thanksgiving runner. At that point, she said, "Well, it's your house and your dining room. So if you like it..." And there was a little awkward chuckle.

I was never mad at her. If you've met Marian, you know that it would be nearly impossible to get mad at someone so sweet. But nevertheless it WAS a "mother-in-law moment." Some daughters-in-law might have harbored resentment over a moment like that. And some mothers-in-law might have resented their daughter-in-law for rejecting their well-intentioned decorating advice. But neither of us did that. Instead, the next day, we laughed at ourselves and each other ... TOGETHER! That is one of the things I really appreciate about our relationship.

Some of the teasing that has come out of our brief moment of tension include:
Shari: "We finally had a mother-in-law moment! You tried to remove my centerpiece against my will!"
Marian: "I'll never try to tell YOU what to do again."
Shari: "So you really hate my centerpiece that much, huh?"

Honestly, for a couple of days, I would walk by my dining room, look at my table and think, "Is it really that bad? I think it's pretty." This is why I think that unsolicited advice from mothers and mothers-in-law offered to grown daughters and daughters-in-law (many times over things that just don't really matter) lead to a breakdown in relationships. Mothers often don't realize the power they have to make a grown woman feel inadequate and inferior. (I can't fathom how a mother could enjoy making a daughter or daughter-in-law feel this way or do it intentionally.) None of us wants to feel that we aren't "doing things right" (especially in the eyes of someone whose approval we desire).

Everyone will have these moments no matter how beautifully they get along. But nearly every situation has the potential either to escalate and be blown out of proportion over time OR the potential to turn into a funny story that can be enjoyed for the rest of our lives. Our flaws and quirks can be the best comedy if we'll allow it. And these moments can also create a unique bond. Since we are ALL flawed in some way, our flaws can bring us together as well as separate us. It's our choice.

Not only did our "moment" result in many laughs, but it opened up some very meaningful conversation about emotional triggers. I shared with Marian the reasons why I believe I am so resistant to motherly "helpful suggestions" that imply disapproval. My mother had strong preferences for how things should be done and how people should handle their problems. She was very private and I'm not. I knew my tendency to openly cry or spill my guts (about my own failures) embarrassed her. I knew I didn't handle money the way she thought I should. I knew she was embarrassed when I gained weight. I knew she thought I was not ladylike. I knew these things because of her constant suggestions.

"Why can't you be a good little actress like so and so?"
"If you gain any more weight, I won't be able to sew for you."
"I wouldn't fix my house up until after I had it paid for."
"I wish you would say dollars instead of bucks. Bucks sounds unladylike."

I felt that I could never measure up or be the daughter my mother wanted me to be. Many friends have told me that my mom was very proud of me and often boasted to them about my accomplishments and achievements. But she didn't say those things to me. I felt like a loser as a daughter. Marian, on the other hand, has always made me feel like a prize daughter-in-law. So I don't consciously ever feel that she disapproves of me in any way. But those little suggestions still trigger something inside me. And I believe it's connected to the past.

I'm not sharing this to disparage my mother. She was a good mom. She did love me. We were just different and we were both flawed. She probably didn't even think of me as a disappointment the way I thought she did. But we could not communicate and we never could laugh about our differences. And she never did stop trying to give me advice until she got sick. But when she got sick, I think she finally saw the real me (the deeper me underneath the surface traits she had never been able to fully accept). I know that my mom knew how much I loved her at the end of her life. And I will be forever grateful for that silver lining in the premature loss of my mother.

When my mom got sick, we just began to love and appreciate each other. She stopped giving me advice and I stopped needing to resist being controlled. I don't know if that would have happened any other way. I have no idea what our relationship would look like now if she were still here. I have a hard time imagining her approving of all my choices. I am inclined to think our relationship would still be complicated. But I am so thankful for the memories I have of our relationship blossoming in those last seven months. It was healing. It brought closure. And I don't have the slightest residue of resentment connected to my mom or her memory. Although it was not a perfect relationship, I had a great mother in many, many ways. And I learned some powerful life lessons from watching the way she responded to life. With my dad, it's some of the things he said to me over and over that have become tools in my life. But with my mom, it really wasn't what she said as much as what she did. I admire many of her traits. And I think I was blessed to inherit a few of them, even though our temperaments and coping styles were so different.

In the days following our minor moment of tension, Marian and I have not only had many laughs, I've noticed that I have an even greater appreciation for her as a mother-in-law. Nobody can take the place of your mom. But sometimes God does bless us with an unexpected surrogate. And mine is the best.

Helpful Tips for the Newly Diagnosed

Been There - Done That
By Bruce Hopkins

I discovered this link on a CLL List Serve I subscribe to. I'm going to add it to MY LINKS so it is accessible even after this post drops into my archives. It is well worth reading whether you have just received a cancer diagnosis, or someone close to you has been diagnosed.

Thursday, November 11, 2010

Good News on CAL-101: Could this be a breakthrough treatment for CLL?

Today was another Sarah Cannon day. Marian received her sixth weekly infusion of Rituxan (only two more to go). And John had his monthly check-up. They are each in separate clinical trials studying CAL-101.

John just completed his sixth cycle of CAL-101 as single agent after failing Rituxan and then the "gold standard" FCR (chemo). Marian is receiving treatment for the first time at age 78. She is receiving Rituxan in combination with CAL-101. She will complete her eighth week of infusions and her second 28-day-cycle of CAL-101 the week of Thanksgiving. At that point she will be finished with Rituxan, but she will continue taking CAL-101 (orally) for as long as it keeps her CLL under control.

For the benefit of anyone who has not previously read my blog, I will try to briefly bring you up to date.

My husband, John, was diagnosed in June of 2007 after two CBCs - six weeks apart - showed a significantly elevated white count. At that point, he wasn't symptomatic other than being tired and feeling some slight swelling in his neck. All three (white count, tiredness and lymph node swelling) could have been caused by an infection or virus and that was why his primary physician waited six weeks to check again. We saw a local oncologist for the official diagnosis. But I had already started doing exhaustive research and talking to other CLL patients/caregivers online and I knew the value of getting second opinions and being evaluated by a genuine CLL specialist.

I did not feel at ease with the first oncologist because he was much too eager to use chemo right out of the gate (before we even knew all of John's prognostic markers). I had already learned enough to know that there were milder treatments that we could at least try first (with less toxicity). I knew the risks of chemo (including the possibility of transformation). And I knew that since CLL is a chronic illness, there was no urgency for a quick treatment decision. We told him we wanted to go to Mayo for a thorough evaluation by Dr. Clive Zent. (I had already learned the names of many CLL specialists and where they practiced.)

We made a July appt. at Mayo and, while we were waiting for that date to arrive, I learned (through a new CLL friend on a Christian CLL website) that there was a highly respected CLL specialist right here in Nashville at Sarah Cannon Cancer Center (of Centennial Hospital) by the name of Ian Flinn. He had come to Nashville recently from Johns Hopkins. So I made an appt. to see him in August. But we went ahead with our trip to Mayo and John had all of his prognostics done by their lab. I remember being so proud of my CLL knowledge during our visit with Dr. Zent. Absolutely everything he told John about CLL, I already knew from my own quest for information. And he confirmed what I had already been emphasizing to John; that if we had access to a specialist like Dr. Flinn, we should not even consider going to anyone else. He told John that we were very fortunate to have Dr. Flinn right here in Nashville. (And I beamed as he said these things because I had already found Dr. Flinn and made an appt.)

We knew prior to Mayo that John had the 13q14 deletion and was CD38 negative (both good markers). We didn't know his mutation status or his Zap 70 status. I won't try going into too much detail about the markers, but suffice it to say that they are important indicators of the kind of CLL a patient has and whether one can expect a very slow progressing CLL or an aggressive CLL. Knowing one's markers is also an important factor in making the right treatment choices. We found out from Mayo that John was Zap 70 negative (the third good marker of four) and after determining that, Dr. Zent said it was highly unlikely that John's mutation status would come back unmutated. The least desirable marker is the unmutated status. Unmutated patients usually progress faster and don't respond as well to treatments as the mutated patients do. But it's rare for a patient to have the three good markers John has and be unmutated.

I came home from Mayo just certain that John would be mutated and have the most benign form of CLL. But when the test results came, we found out that he was indeed unmutated. It was probably a bigger disappointment for me because I was the one with all the CLL knowledge. I have dealt with his CLL by learning all I can. John deals with it by not thinking about it and just living his life.

Dr. Flinn agreed that there was no urgency to treat John at diagnosis. We could wait. John successfully avoided any kind of treatment for the first year. But his lymph nodes were swelling and he had fatigue. In the summer of 2008 we decided to try Rituxan. It is a monoclonal antibody and is not as toxic as chemotherapy. Dr. Flinn never tried to push us into any particular treatment decisions. And he was supportive of our desire to avoid chemo for as long as possible. But, unfortunately, Rituxan didn't do much for John's lymph nodes. We waited another year before finally deciding to proceed with FCR (Fludarabine, Cytoxan, Rituxan) plus an experimental drug called Lumiliximab. 

FCR is considered the "gold standard" treatment for CLL at this point in time. But it comes with risks and side effects. (Those are all available online and I won't list them in this post.) While it's true that many patients get long remissions from FCR (I read last night about a patient who is still in remission after receiving FCR in 2001), there are also patients who relapse quickly or even fail it completely. And I know of at least one CLL patient who said the decision to use Fludarabine is one she regrets; she says it left her with the immune system of an AIDs patient and gave her only a partial remission. My biggest fear was that John would suffer negative consequences of FCR without getting the positive results. But I tried to be upbeat and positive and expect the long remission. Unfortunately, John failed FCR within a few months of treatment ending (the last week of January 2010).

The more you learn, the more you feel the weight of your treatment decisions. As caregiver, I felt the weight of trying to help my husband make informed decisions. And sometimes that feels harder than if I was making them for myself. He is the patient, it's his body and ultimately the decisions are his (not mine). But I feel such a responsibility to make sure that he does not make uninformed decisions. And it is sometimes hard to know how much information I should share. I don't want to be overly negative (doom and gloom) as much as I don't want him to go into any option uninformed of the potential consequences (which cannot be undone).

Shortly after John's diagnosis, his mom was diagnosed with CLL also. So now I carry the weight of Marian's "informed choices" on my shoulders as well. I take my role as patient advocate very seriously. Marian stayed in "watch and wait" status for a little over two years. But her numbers have gradually moved in the wrong direction ever since diagnosis. And in September she decided to enter a clinical trial with CAL-101 and Rituxan that was being offered to older patients who were previously untreated for their CLL. (John's clinical trial was specifically for patients who had relapsed or failed traditional therapies.) She wanted to avoid the toxicity and immuno-suppression of Fludarabine and by the time she was in the position to make her own treatment decision, John had already completed four cycles of CAL-101 with impressive results. That made her decision a little easier.

CAL-101 has been like a miracle drug for John. He is on the lowest prescribed dose (50 mg.) and his entire therapy consists of taking one pill in the morning and one pill at night. Within two days of taking CAL-101, there was a visible reduction in his lymph nodes. He just had another set of CT scans this week and the nodes are continuing to shrink. They have not been visible or palpable for quite a while. But the scans give exact measurements to undetectable nodes. Many CLL patients experience an initial increase in their white count during the first few months of CAL-101. But John's white count did not increase. All of his counts are normal. His immune system seems to be in good shape (normal neutrophils) and he has not suffered any infections or even a virus during or following chemotherapy. I am so thankful for that.

At John's last office visit, Dr. Flinn revisited the subject of stem cell transplant. I knew he was just trying to establish a "Plan B" if CAL-101 did not prove to be successful longterm. It's early in the clinical trial process. But it still caused me anxiety. That particular day, John's sister was having a consultation at Vanderbilt for her very aggressive throat cancer and John's mom was just starting treatment for her CLL. I was having an "I can't cope with all of this happening at once" moment of fragility. Of course, I will cope with whatever I have to because there really isn't a choice. But it's kind of like hitting transition in labor. Even though I knew I had no choice, I remember thinking, "I can't do this! I can't do this!" And then I gave birth.

Last night, John, Marian and I were talking about CAL-101. Marian was saying she hoped it worked and wondered what she would have to do next if it didn't. John said, "Well, obviously Dr. Flinn doesn't expect CAL-101 to keep working or he wouldn't have brought up transplant again." I told him I did not agree. Doctors have to be thinking about Plan B because experimental drugs are unproven drugs. I knew there was no way for Dr. Flinn to know CAL-101 wasn't going to be a breakthrough treatment any more than he could know with certainty that it would be the breakthrough we're all hoping for. But just the conversation brought that anxiety back up in me and I went to bed thinking, "How will I possibly take care of both of them if John has to undergo a transplant and Marian has to have chemo?" (I had temporarily forgotten the "one day at a time" mindset and allowed myself to project into the fear of the unknown.)

But I am happy to report that at today's visit, Dr. Flinn was eager to share with us that he'd just returned from a CLL symposium in New York (yesterday) and he was very excited about the results of the CAL-101 trials. He said the response rate is about 80% with a median treatment time of 11 months. Patients are not experiencing toxicity issues with the liver at current dosages. And many of these patients (getting such great responses) have been through many different therapies and relapsed (or failed treatment). He also confirmed that he was only mentioning transplant as a Plan B. And he thought CAL-101 was showing great promise. He is very happy with John's response and is hopeful it will continue.

He also explained that one of the major obstacles with CAL-101 is the fact that it tends to increase white counts (sometimes quite substantially) before it starts to clear the blood. Part of the reason for this is that CAL-101 works first on clearing the lymph nodes and some of those malignant lymphocytes are dumped into the blood. This did not happen for John. I asked if it could be because John is on the lowest dose. He said he didin't think so. He thought it was just the nature of this drug. But to the FDA, an increase in white count over the first few months looks like disease progression. The researchers know that it is not disease progression. It's a characteristic of this drug and it's temporary. But one of the obstacles in getting FDA approval is substantiating that for the FDA. So they are trying to find ways to structure clinical trials that will make their case.

Marian is experiencing the increase in her white count. She is in her second cycle of CAL-101 and she has completed six of her eight weekly Rituxan infusions. I asked Dr. Flinn if there is any reason to be concerned that her white count is not coming down. And he said "No. Absolutely not. It can take months."

This post is really lengthy and I realize that only close friends, family and CLL patients are probably still reading. (And maybe only CLL patients!) But I wanted to be thorough for the benefit of those who land on my blog while searching the Internet for information on CLL and CAL-101.

We met a patient today who is considering the same clinical trial that Marian is enrolled in. She was apprehensive about potential side effects. (You should see the thick stack of paperwork a patient has to read and sign off on prior to entering a clinical trial. Just as with any drug a person takes these days, there are endless "possible" side effects you must be informed of before consenting to treatment.) We shared John's experience with her to help ease her mind and I told her that his mom also has not suffered any side effects and is feeling fine. I was so glad that we could encourage her and help her feel less anxiety about entering treatment. And I hope that by sharing all of this publicly on my blog, maybe someone else will receive the same encouragement.

A lot of people don't understand just how important clinical trials are and how fortunate a patient is to have the opportunity to participate in them. CAL-101 is a cutting edge therapy and might possibly be a real breakthrough in the treatment of CLL. The goal is to develop a treatment that can control/manage CLL over a normal lifespan the way insulin controls and manages diabetes.

Jill Clayburgh (a well known actress) died last week of CLL. She never spoke publicly about her disease, so nobody (outside her family) knew she had it until she passed away. She survived for twenty-one years following her diagnosis. That sounds fantastic until you learn that she was diagnosed at the age of forty-five. Twenty-one years is a long survival. But dying at the age of sixty-six is still too young. There has been a lot of discussion in the CLL online community about whether or not she should have remained silent. She could have helped bring attention to CLL and possibly contributed to funding more research with her celebrity standing. But she also had the same right to privacy that any other citizen has. It was her choice to make. And we have to respect that.

A lot of patients are afforded the luxury of privacy with CLL because they do not look sick. John didn't want to tell people initially. He didn't want to be treated differently. He didn't want to put himself through the "I'm so sorry to hear..." conversations. He didn't want anyone to worry about him. He didn't want to bring attention to himself. He just wanted to live his life as normally as he did prior to his diagnosis. I understood all of his reasons and I respected his need for privacy (even though it increased my emotional struggle to internalize and hide what I was going through; I wound up with shingles and reflux six months following his diagnosis). Over time, John relaxed about people knowing. For one thing, his lymph nodes became so swollen that he really couldn't hide the fact that something was wrong. And his privacy just became less important to him over time. I'm thankful for that because I think there is freedom in not having to keep secrets.

Do I wish Jill Clayburgh had gone public? Yeah. It could have helped a lot of others. But I can't judge her either. All I know is, I'm thankful I have the freedom to be open about our CLL journey. Maybe only a handful of patients will ever stumble onto my blog to find information and emotional support. But it is rewarding to me to know I've helped someone - even one person. I value that more than protecting my privacy. (And I'm not great at silence even if privacy WAS important to me.)

Monday, November 8, 2010

My Howerton Family

This picture of John and Lillian (taken in the 70s) was given to us yesterday. I had to share it on my blog. Are they not beautiful???

When I look at pictures like this, I so wish that I could have known John and his family earlier in my life. Of course, you cannot argue with God's timing. And we both realize that we appreciate each other more because of what we've been through. But as I was telling John on the way home from Evansville, I feel like I'm a real part of his family. I found a family in which I truly fit.

Although I love my immediate family, I never felt like I belonged. I was different from my parents and brothers. I was emotional. I was expressive. I was loud. I needed to communicate more than anyone else in the family. And my perception was that I was a bother. I know it's a cliche' but I felt like a square peg trying to fit into a round hole. In years past, I never felt that I was the daughter or the sister that they would have chosen. (Today, I believe that I AM the sister and aunt my youngest brother would choose. But we are eleven years apart in age and our relationship has blossomed the most in the last ten years.)

From the first day I met John's family, I was no longer a square peg. I had found this crazy, warm, funny, loud, welcoming family where I fit right in. His mom has told me that until she met me, she was very concerned about how quickly John was getting serious about his new girlfriend. She tried to get him to take it slow. But she says that the day she met me, she stopped worrying. Lillian said the same kinds of things to me. They told me that I was the best thing that had ever happened to John (there is no greater compliment you can receive from your husband's family). And then the brothers said over and over (in my presence), "Johnny finally got it right." I felt kind of like Sally Field ("You like me! You really like me!") It was great. It still is.

None of us will ever forget the first day I met the whole family. It was July and we were all sitting outside on Marian's back patio. John and I got up to walk in the house. We were arm in arm and I failed to see a little drop off between the sidewalk and the driveway. I lost my balance and took John down to the ground with me. It was not just a stumble. It was a tumble. And it even hurt a little bit. But we couldn't stop laughing. And John told me over and over that what he loved most about that moment was that I could laugh at myself and the day wasn't ruined because I had embarrassed myself. I had no idea then, but it really was the perfect way to make my official entry into his family.

This weekend was really special in spite of the sad circumstances. Yes, there were tears. But there was so much love and laughter and camaraderie. On the way home I told John how much his family means to me. I am not just an in-law. I'm one of them. I truly belong in this family even though I don't share their gene pool.

I'm proud to be a Howerton. Not because they are a perfect family without any problems. In that sense, they are no different from any other family. But I love and treasure the camaraderie, the acceptance, and the family bond that now includes me.

Yesterday, Marian found a newspaper clipping from an interview Lillian gave in 2002. We are going to have it copied and laminated for the rest of the family. The article began with her being asked for "Three words that best describe you...." Lillian responded, "Friendly, funny, loud." There were a lot of words she could have chosen. And it struck me that by including loud as one of three, she was making a statement. She was okay with it. Unlike me, she didn't consider being subdued in any way superior to being loud.

Many of us took turns sharing our memories of Lillian as a part of her service Saturday. I confessed that I am also one of those loud, passionate, extroverted kind of persons. (I always wished I could laugh a little softer.) But when I met Lillian, I met someone who laughed louder than I did and was bolder than I had ever been. I remember telling John the first time I met Lillian, "Your sister and I are going to be buddies."

And we were. As I said at her service, we loved each other unconditionally. That is not to say we never got on each other's nerves. We were always so brutally honest with each other that I'm certain I may have said things that didn't always set well with her. And I didn't always agree with her opinions or choices. But we never had even the slightest falling out over anything. There was just this wonderful "I love you just the way you are" feeling between us. It's a gift she gave me that I will always have ... and will always cherish.

Wednesday, November 3, 2010

Pictures in Recent Years...

Shari, John and Lillian.

01.04.04 (The day I officially became a Howerton.)

Lillian with her youngest daughter Olivia.

Lillian with Rebecca Bryant 
and niece Taylor Howerton.

Newly engaged.
Lillian and Bennie, August 2005.

John, Stacy (cousin), Rob, Harris, Lillian and Marian
August, 2005.
Showing off her engagement ring to brother Rob.

Thanksgiving 2005.
Bennie, Lillian and Kim.

Lillian goofing around with John, Me and Bailey.

Lillian with daughter Olivia and grandson Sonny...
...Christmas 2005.

The five siblings with Marian (Rob, Jeff, John, Harris, Lillian and Marian).

The last Christmas picture I have of everyone together was taken in 2006.
Jeff is not taller than his brothers. This was one of their usual goofing around shots.
They all get on their tip toes or jump to try to look like the tallest.
But "little brother" is really the "biggest brother."

We love you, Lillian. And it will never be the same without you.

Tuesday, November 2, 2010

My Sister-In-Law's Battle is Over

I did not want to put this on my blog until I was sure all of the family had been notified.

I have sad news to share with you, but also Good News.

Lillian (John's sister) passed away some time during the night last night. Her husband checked on her this morning and she appeared to be sleeping. So he went out for several hours to do his normal errands. When he returned, she had not moved and he checked more closely. At that point, he realized she was gone and called Emergency Medical Services. They said she had been gone for eight to ten hours. For Lillian I'm sure it was better to pass away peacefully in her sleep. But I could tell that my brother-in-law wished he had been able to say something to her before she went.

Getting this news so soon is a shock. None of us expected her to go this quickly. I thought she might only have a few months or maybe even a year if the treatment she just started helped. But from reading on the Internet, I also knew there was a possibility she wouldn't respond to the milder treatment. I just never imagined she wouldn't live to receive more than that first infusion. The last email I got from her was five days ago, the night before her first treatment. And the last sentence she wrote to me was this:

Well my back is killing me and I will lay down and pray some more. I love you, you cute little perfect face!!! Love Lillian

I responded, but never did get another email from her after that. I called Bennie to check on her and he said she was sleeping almost around the clock. I knew that wasn't good, but I still believed we would be able to go to Evansville again and see her. I told Bennie just a few days ago that we were planning to come up within the next couple of weeks. I think I'm still a little bit in shock that we won't have that opportunity.

Although this is a very sad night for the family, there is one great comfort. Prior to her cancer diagnosis, Lillian was not a believer. But through this experience, that changed and she embraced Jesus as Her Savior. This night would be so much sadder if that hadn't happened. I don't think she would mind my sharing a little bit of our ongoing spiritual dialogue with you now, since she gave me her blessing to write anything I felt inclined to write on my blog.

I used to worry about Lillian and pray for her spiritually. She knew I was a dedicated Christian with very strong beliefs. I prayed that God would give me the courage to be bold and that I would be willing to risk her getting upset at me if that's what it took for her to be saved. Occasionally we would talk and I would try to witness to her. I told John so many times that I knew I had to be careful, I didn't want to be offensive or tick her off. But I also could not put her having good feelings toward me ahead of her soul. I believed it was possible that God put me in her life because I was someone who WOULD risk offending her to get through to her about Jesus. What if I was the only one who would feel this so deeply?

I felt a great responsibility to her as her sister-in-law. So I didn't pound on her, but I looked for opportunities to share my faith with her. I told John that I could never forgive myself if Lillian died suddenly as an unbeliever because I'd been too timid to talk to her about the Lord.

In July of 2008, I wrote this blog post:

Lillian happened to read this one and she emailed me about it. I still have the email. This is what she wrote:

I have spent the last two hours reading your blog. I love you and cherish you and respect you and honor you...but I'm "skeered" of you! Dang. You have a gift and I am certain that it's within you and bolsterd by G-d's love for you (Jews don't ever write the name out for an ancient respect for HIM). I think it's important that I tell you that I have been entrenched in the Jewish Faith for a few decades. I hope this doesn't cause you any concern (I'm fairly sure it doesn't).

The Torah teaches much of what the Christian Bible does. The Old Testament is very enlightening and brings forth what faith I have in the manner in which I believe. I believe in G-d. I believe HIS Grace and Love has brought me to a place where I should be. I like the fact that I don't have to worry about a lifelong "slate" being tallied up. Every Yom Kippur, I find a Temple and attend for the four hour service. My slate is wiped clean for the year (If I am sincere about it being so).

Last year I went to the Synagogue in Newburgh and felt catharsis. The Rabbi said, "We have two pockets in our pants. One pocket we put things in that we don't want others to see. Secrets, credit card purchases we should not have made, someone's phone number other than our loved ones... the other pocket is for our right hand to slip into. Nothing there but an empty space to realize that we need to empty both pockets and redeem ourselves as good, honest people."

I find solace in knowing that I can't keep track of a lifetime of improprieites. To be sincere to attend the highest holy day in the Jewish calendar and repent is all I want to do.

I was intrigued by your story about the Muslim man converting to Christianity (the dogs trained to come and rip him to shreds...). The fact that the dogs did not consume him alive I don't believe is because he had vowed to be a Christian. I think it is because he was devout to G-d in the first place.

I admire your tenacity and deep faith in your religion. I will regard and respect your faith and I hope you do mine.
Love you

We had many more conversations about Jesus. But that email should give you a glimpse into my concerns. She told me apart from the email that she had chosen Judaism because she liked the idea of only thinking about her sins once a year. Lillian was a colorful person. She was very intelligent and talented, too. She used to sing professionally and John says that in addition to a Liza Minnelli kind of voice, she took command of a stage. She had so much stage presence, she would draw a crowd whenever she performed. And she was every bit as opinionated as I am, maybe more so. She wasn't someone who just sat and listened to other people talk. And she didn't hesitate to let me know she didn't agree with me. But still...

I prayed for her. I didn't pray this every day. But any time I thought of her, I prayed for her salvation. I prayed that God would reveal His Son to her and draw her to Him. I never dreamed He would do it this way.

Bennie shared with Marian and I on this last visit that, prior to her cancer diagnosis, Lillian bristled at the name of Jesus. She was completely closed to His being our Savior. When I sent her a copy of my book last November, I didn't know where she stood as far as her faith. But I prayed that she would hear and understand the gospel through reading it. The message of my book is Jesus and the truth of salvation through Him.

In February of this year, I got the first glimpse of her transformation when she wrote:

I am sort of lost when it comes to "Knowing God through Jesus". I guess I need a "Christianity for Dummies" book.... I am still fond of some of the tenets of Judaism but you don't ice a white cake with ketsup. Some things just don't mix. So I am in a bit of confusion but I feel Jesus listening to me. I feel his guidance when I ask for it. It's so awesome.

Reading these emails tonight is emotional for me. I'm sharing this on my blog because I want to encourage you never to give up on sharing Jesus with your loved ones. Even if they shut you down. Keep trying. Keep tackling the subject (in love of course). Though we disagreed, my sister-in-law always knew I loved and respected her. But I never backed away from an opportunity to tell her the truth. Two reasons. I love Jesus and I loved her.
I responded this way:

I said "through" Jesus because the reason Jesus came to earth (as God incarnate) was to provide a way for us to be in relationship with God. Our sin separates us from God because He is Holy - holier than we can really even imagine. He cannot tolerate sin and we cannot perfectly obey the Law. The entire Old Testament establishes that fact. Nobody but Jesus has ever kept the Law perfectly. And He is our sacrificial Lamb. He atoned for our sins. So it is through His life and His sacrifice that we are ABLE to have a relationship with God the Father. Does that make it easier to understand? That is why we pray "in Jesus' Name." Without Him, our sin separates us from God. We do not have to atone over and over with repetitive sacrifices now, as the Jews did in the OT, because Jesus died once for all. All who believe. All sins. I could recommend some great books if you would like to read about the cross.

And Lillian responded:

I love you Shari.  I am so blessed and I am happy to learn about Jesus.  You explained it pretty well.  Thanks.

Through her illness, God answered my prayer and revealed His Son to her. With each successive email, her faith grew. By the end, the name of Jesus was mentioned in almost every email she sent me. She told me in the last few weeks that she was trying to read and understand the book of Romans. She talked constantly about praying.  

In September, while waiting to find out where she was going for consultation regarding her returned cancer, she wrote these words:
Shari, I am so bummed out. But I have strength and I have courage and some moxie left over....I have some fight left, oh yes I do. And most (forgive the lousy grammar and structure) importantly: I have Jesus in my heart. I have this really awesome "calm" about me when I think of Jesus and how I have been praying to HIM, talking to HIM all these days. That means something. I know it does.

I wish I could express how much it meant to me to read these words Lillian wrote earlier this fall. But they mean even more to me tonight.