Friday, December 30, 2011

Imperfectly Lovable

"To the people who love you, you are beautiful already. This is not because they’re blind to your shortcomings but because they so clearly see your soul. Your shortcomings then dim by comparison. The people who care about you are willing to let you be imperfect and beautiful!"

- Kelly Turcotte Lloyd


I read this quote on my cousin's Facebook page this morning and loved it. I immediately reposted it and knew I would share it on my blog, along with the thoughts it provoked.

If you read my blog even occasionally, then you already know I have much to be thankful for. That does not mean I am without challenges or problems. And I will be the first to tell you how flawed and imperfect I am. I have always been an open book. When I see something in myself, my natural inclination is to confess.

I take self-disclosure to a new level. I'm more guilty of giving too much information than concealing or withholding. And I'll be the first to admit that's not always a good thing. But it's the personality God gave me. Sometimes I say or write something and cringe later, wondering why I couldn't just keep my feelings/thoughts to myself; asking myself if I will ever master this part of my personality. When I say this is the personality God gave me, I don't say it as a cop out for a lack of self-control. I just mean it's what I have been given to work with. And I think I have come a long way from where I started. But I still have plenty to work on. Even when I don't speak, one only has to look at my facial expression to have a clue as to what I'm thinking or feeling. No poker face here.

The flip side of that is that I am not capable of being fake. What you get is the real me. Always. Always. Always. For what that's worth. And when I see that I've been wrong (which is sometimes instantly and sometimes after much reflection), I don't wrestle with the words "I was wrong" or "I'm very sorry." And even when I don't think I did anything wrong, I always wrestle with knowing I have hurt someone or caused pain unintentionally.

For most of my life I have wanted desperately to be loved and accepted. I guess we all want that to some degree. But I wanted it in a needy, co-dependent kind of way. I look back on many years of my life and see glaringly how hard I tried to earn value in other people's lives. And that led to a sense of worthlessness and disposableness when I didn't get the loving, caring response I was hoping for. In some cases, I have been used and exploited by people because I was so determined to win them over and make them like me. And in other cases, I was simply dismissed. Both responses left me feeling, as I've shared many times, like someone who was difficult to love. Of course it was my perception, not necessarily reality. (But there is a saying about that.... Perception IS reality.)

This quote means all the more to me at this stage of my life, I think, because I've shed some of that co-dependence in recent years. I still want to be loved by everyone. But I don't NEED to be loved by everyone. And I accept in my heart, as well as in my mind, that I cannot be loved or liked by everyone. Nobody is. And my distinct flaws and imperfections will be obstacles in some relationships. I will be discarded by people for my flaws. But that no longer makes me feel worthless or disposable or unlovable. And it doesn't rock my world the way it did a few short years ago. My focus today is on those people who really do value, appreciate, and love me just the way I am. When I read the above quote, I felt a deep gratitude for those people instead of thinking about the ones who don't fall into that category.

I would change two words of the quote to apply it specifically to myself. I would swap the word beautiful for lovable. And I would choose heart in place of soul.

"To the people who love you, you are [LOVABLE] already. This is not because they’re blind to your shortcomings but because they so clearly see your [HEART]. Your shortcomings then dim by comparison. The people who care about you are willing to let you be imperfect and beautiful!"

I spent so much of my life trying to get people to see and understand my heart, to really know who I was on the inside. I thought I couldn't survive being misunderstood (especially in certain relationships). But I did survive it. Not only have I survived, I have thrived. I haven't gained the understanding of everyone whose understanding I longed for. But God has blessed me exponentially with other people whose love and understanding I have not had to work for. And through those relationships, He has shown me that the problem hasn't always been me. (Not saying the problem has never been me.)

As another year ends and a new one begins, I am thinking about how blessed and thankful I am.

I'm not thinking about my losses. I'm thinking about how much I've gained through my losses.

I'm thinking about how wonderful it feels to know my true friends do see and know my heart. I know they also see my imperfection, my flaws, my shortcomings. But the people who genuinely care about me make me feel so imperfectly lovable just as I am.

I know I have shared this before, but someone may be reading for the first time and it goes along with the theme of this post. I saw a Christian counselor regularly for four consecutive years. One of the struggles he identified in me right away was my false belief that if I could learn to choose my words perfectly, someone else would not misunderstand, would not be able to twist or misinterpret them, and ultimately that I would not experience rejection. I was very focused on saying things in just the right words (and often my inability to accomplish that). In every conflict, I would determine (in my own mind) that my choice of words must have been where things went wrong. And I would lay the "blame" on my own shoulders. In one specific session, he confronted me very bluntly:

"Shari, why do you believe that you have to say anything perfectly to be worthy of love and understanding? Rarely do human beings say anything in the perfect words. It's an unattainable goal. We are human. We are flawed. Human relationships are messy. But where there is love and mutual respect, it's not that you never make a mess; rather, you just clean up the mess and go on. In healthy relationships where you have value for being rather than doing, you're allowed to mess up."

I have reflected on and repeated those words many times.
That day they were a concept. But today they are my reality.

Tuesday, December 27, 2011

When couples get married ...

I've written exhaustively about how thankful I am for John. I've documented on my blog what an amazing person and husband he is and how much I adore him many times. I probably make some readers roll their eyes -- or gag. But I am so blessed and so thankful and so happy ... and so expressive ... that I can't help myself.

We just celebrated our ninth Christmas together. And on January 4 we will celebrate our eighth wedding anniversary. I knew I was marrying a very special man the day of our wedding. What I couldn't know in advance was what a great stepdad and Poppy John he would be.

When two people join their lives together, other people's lives are affected. There are often personality clashes and baggage. Not all step and in-law relationships are beautiful and wonderful. So, when they are, it's a blessing to be valued, cherished and thankful for.

I remember how much I wanted John and Danny to have a close relationship when we were first married. I remember wanting it to happen really fast. And I also remember John telling me that a stepdad/stepson (fatherly) relationship had to grow naturally over time to be genuine. It could not be forced. He would not push any specific kind of relationship on Danny. He would just be a friend and have no expectations. After all, he would always say, "Danny has a dad."

John is not the type of person to ever impose himself on anyone. He is very respectful. He chose to stay "in his place" and I'm guessing that he may have also been guarding his own heart just a bit. But I remember him telling me that if Danny ever wanted more of a father/son kind of relationship with him, Danny would have to be the one to indicate that. He would never presume upon Danny in that way.

John and I have been together now for almost nine years, and married for eight. And in hindsight (especially through the lens of this past year), I see how wise John was in the way he approached his relationship with my son. They have always gotten along well. They have never had cross words or "issues." I know that Danny has always appreciated the way John loves and respects me. But a deeper relationship between the two of them has grown in the last few years. And it's the relationship I hoped for from the beginning. But John was right. You can't have it instantly. Their relationship is what it has become in large part because John did not try to make it happen.

I'm a very thankful wife and mom. The genuine love and respect between my husband and my son makes my life better, easier and happier. Neither of them causes stress for me in the other relationship. Neither of them competes with the other. There are no loyalty issues. There is just love. And I know how fortunate I am.

I'm very thankful that God blessed me with a man who would also be a blessing to my son, my daughter-in-law and my grandchildren. I waited a long time for the life I enjoy today. But when God chose to bless my life in this way, He blessed me far beyond my wildest dreams. There were blessings prior to 2003. I see God's hand in my life in many different ways since childhood. But I have truly known love and fulfillment and the joy of living in the last nine years. I don't take a single day for granted.

I love these guys and I'm so grateful they genuinely love each other.



I'm also extremely blessed and thankful to have
the most wonderful daughter-in-law in the whole world.


These are some of my favorite pictures from this Christmas.

These are my perpetual "Christmas Gifts."

Friday, December 23, 2011

Do Kinase Inhibitors like CAL-101 work well on large lymph nodes?

I'm posting pictures again (before and after CAL-101) because this question was asked today in a CLL email list that I read.

My husband hated having his picture taken when his lymph nodes were very large from CLL. I remember telling him that his lymph nodes didn't look as bad as he thought they did and that he was just as handsome as ever (in my opinion). He would always give me a "yeah, right" look. But I was very sincere in saying that to him. Because his nodes increased gradually, I got used to his neck being larger and I did not think it detracted from his gorgeous face. John has the most beautiful blue eyes (which you seldom see in pictures because the flash turns them red, and when you take the red eye out, they turn black). And he has such a warm smile. (And I adore him.) So his swollen neck did not diminish my attraction to him in the least. But he hated his neck. And not only was the swelling visually unattractive in HIS opinion, the nodes were very uncomfortable and even painful at times. The nodes you see in these pictures (in his neck) were swollen just as large in other areas of his body; under his arms, in his abdomen, and in the groin area. We used to go for walks in our neighborhood, but we had to stop because he said the groin nodes hurt too much to enjoy it. That was right before he started chemo in 2009.


This picture was taken in 2008.


This picture was taken in 2009.



Here's what John's neck looks like now (pictures taken last night).




John has been taking 50 mg. CAL-101 twice a day since May 2010.

When I look back now at the "before" pictures, I understand why John gave me the "yeah, right" look when I told him how good he looked. But the truth is (and feel free to gag), he is the most handsome man in the whole world to me - with or without enlarged lymph nodes - not only because I think he's good looking, but because the person inside is good to the bone. He's made me feel like Cinderella from the first week we met. And when I look at him, I see Prince Charming. Still. But now that his neck is normal again, it's pretty obvious, even to me, just how huge his neck actually was.


Bone Marrow Effectiveness:
Another question often asked is how effective Kinase Inhibitors are on the bone marrow. John has not had to have another BMB. His marrow was 30% infiltrated before FCR and 20% infiltrated post FCR. But his mom, who is also on CAL-101, had a Bone Marrow Biopsy after six cycles. Her marrow was 80-90% infiltrated/impacted with CLL cells before treatment. Six cycles later, it showed 30% CLL. I would venture to say that John's has improved as well. But I'm glad he has not been required to have another biopsy.

Just to remind those who have not been following John's progress, FCR did very little for him. The nodes improved about 50% while going through treatment. But within a couple of months of the last infusion, they were growing again. Had there been no CAL-101, our only hope was stem cell transplant. Obviously, taking a pill morning and night is a whole lot more appealing than transplant. And both John and his mom have good quality of life. Marian says she feels great. She just gets tired more than she used to. But she is 79 and still goes dancing. John still has fatigue, but not debilitating fatigue. He does everything he is used to doing, including running on the treadmill three nights a week. But he falls asleep watching TV a lot more than he used to.

We have so much to be thankful for.



Thursday, December 22, 2011

The "W" in Christmas

I didn't write this, but I wanted to share it...

Each December, I vowed to make Christmas a calm and peaceful experience.

I had cut back on nonessential obligations - extensive card writing,
endless baking, decorating, and even overspending.

Yet still, I found myself exhausted, unable to appreciate the
precious family moments, and of course, the true meaning of
Christmas.

My son, Nicholas, was in kindergarten that year. It was an exciting
season for a six year old.

For weeks, he'd been memorizing songs for his school's "Winter Pageant."

I didn't have the heart to tell him I'd be working the night of the production. Unwilling to miss his shining moment, I spoke with his
teacher. She assured me there'd be a dress rehearsal the morning of the presentation.

All parents unable to attend that evening were welcome to come then.

Fortunately, Nicholas seemed happy with the compromise.

So, the morning of the dress rehearsal, I filed in ten minutes
early, found a spot on the cafeteria floor and sat down. Around the room, I saw several other parents quietly scampering to their seats.

As I waited, the students were led into the room. Each class, accompanied by their teacher, sat cross-legged on the floor. Then, each group, one by one, rose to perform their song.

Because the public school system had long stopped referring to the
holiday as "Christmas," I didn't expect anything other than fun, commercial entertainment songs of reindeer, Santa Claus, snowflakes and good cheer.

So, when my son's class rose to sing, "Christmas Love," I was slightly taken aback by its bold title.

Nicholas was aglow, as were all of his classmates, adorned in fuzzy mittens, red sweaters, and bright snowcaps upon their heads.

Those in the front row- center stage - held up large letters, one by one, to spell out the title of the song.

As the class would sing "C is for Christmas," a child would hold up the
letter C. Then, "H is for Happy," and on and on, until each child holding up his portion had presented the complete message, "Christmas Love."

The performance was going smoothly, until suddenly, we noticed her; a
small, quiet, girl in the front row holding the letter "M" upside down - totally unaware her letter "M" appeared as a "W".

The audience of 1st through 6th graders snickered at this little one's mistake. But she had no idea they were laughing at her, so she stood tall, proudly holding her "W".

Although many teachers tried to shush the children, the laughter continued until the last letter was raised, and we all saw it together.

A hush came over the audience and eyes began to widen.

In that instant, we understood the reason we were there, why we celebrated the holiday in the first place, why even in the chaos, there was a purpose for our festivities.

For when the last letter was held high, the message read loud and clear:


"C H R I S T W A S L O V E"


And I believe He still is.

Wednesday, December 21, 2011

Communication

I just got home from physical therapy and I learned something today. I can't just wince and cry and apologize for being a wimp. I have to communicate and be my own advocate.

When it comes to being someone else's advocate, I'm one of the best. But I don't think I am quite as assertive when it comes to myself.

I went into therapy today very fearful of being hurt. When John greeted me and asked how I was doing, I told him how bad I'd been hurting. I showed him where the pain was and he said that pain was from my neck. He asked about my movement and I told him I hadn't lost any movement, I was just in constant pain and I assumed it was inflammation. I told him - in tears - that I didn't care if he thought I was a wimp or not, I could not take a lot of pain today and asked if he would go a little easier on me. He asked if I thought he had overworked me on Monday and I said yes. He said he was sorry. I told him it was so grueling, I left thinking that he was of the old school mindset that he had to hurt me to get me better. He said, "No. I want to push you. But I do not want to hurt you." And I could tell he meant it.

Today's session was a completely different experience from Monday. He frequently asked me, "Are you doing okay?" And he was very compassionate and gentle. I left feeling better than when I arrived. I do have a pain pill in me (I always take one before therapy), but yesterday I had pain even with pain medicine. And right now I am not in pain. I'm just a little sore. Which is nothing.

Because of my therapist's dry sense of humor and not knowing how to take him, I was inhibited and did not communicate effectively Monday. A lot of that stems from my fear of being thought of as a baby. I don't know why I care so much if anybody thinks I'm a wimp. So what if I am? And I went in today not caring what he thought of my toughness so much as making him understand what I could and could not take. But once I did that, I realized I could have done that Monday. It is my responsibility as the patient to communicate what I cannot tolerate.

It also dawned on me that Daniel (my first therapist) had the benefit of working with me exclusively since I began therapy in early November. We got to know each other. He didn't have my complete trust the first day and probably not on the second day either. But over time I became comfortable and relaxed in his care. And today I felt a lot more comfortable with John.

My friend Kathy (who is an experienced RN, a loyal friend, and a very compassionate person) was ready to string him up Monday night because of what I wrote about my sensitivity to the jokes. But I really didn't believe he meant any harm, and today I'm sure of that.

We all have different personalities, different communication styles, different senses of humor. We are all imperfect people. None of us can meet the needs of every single person we encounter. We have to cut each other slack as human beings. And, most importantly, we have to communicate effectively and not assume something is obvious. I thought my tears were communicating how much pain I was in. But why would they? I cry easily. So far, I've never been able to impress anybody with stoicism. And I've had a few tears in my eyes even on the days I felt like I was enduring the pain well.

I think I made some progress today in caring less how I am perceived. This stupid inner struggle I have with the fear of being called a baby is just that; stupid. Who cares? If I'm a baby when it comes to pain, then I'm a baby. Doesn't make me a bad person. Just makes me a baby.

Tuesday, December 20, 2011

CLL, Kinase Inhibitors, and Patient Advocacy

This is an excellent video from the recent ASH conference.

http://www.patientpower.info/video/update-on-kinase-inhibitors-for-cll-where-are-we-now


I am so thankful both my husband and my mother-in-law have been able to participate in clinical trials for CAL-101. When John failed chemo, it certainly did not seem like a blessing. But that was how he qualified for the clinical trial with CAL-101, single agent therapy. His mom qualified by being over 65 and untreated. Both needed this treatment at precisely the time each trial was off and running.

These drugs may make it possible for CLL patients to live out their normal lifespans.

http://www.patientpower.info/video/reflections-and-major-developments-in-cll-from-ash-2011/

When John failed FCR, the subject of stem cell transplant was on the table. I had been reading about CAL-101 trials and corresponding with an online CLL friend who was in a trial with Dr. Byrd at OSU. I was convinced John needed to try CAL-101 rather than transplant and I pushed for that. Between appointments with Dr. Flinn, I called Dr. Byrd's office to see if I could take John there -- just in case Dr. Flinn was not participating in the same trial. And I told Dr. Flinn how much I wanted John in that trial, even if we had to travel. Fortunately, Dr. Flinn was participating in the same trial and he said he would try to get John enrolled in it. Which he did within the following three weeks. Right after John started treatment, that trial closed to new CLL patients.

CAL-101 started shrinking John's lymph nodes within days of his first dose. And John never had a big spike in his white count, as many patients do in the initial weeks of CAL-101 therapy. Perhaps that is because he had recently received FCR. Or maybe he was just an ideal candidate for CAL-101. All I know is, it has worked beautifully. And nineteen months after starting CAL-101 at the lowest dose, his blood counts and lymph nodes are normal.

Apparently, it has been reported that only one CLL patient has responded well to the lowest dose of 50 mg. So we know John is that patient. His mom has done well on 100 mg. And many CLL patients are doing well on doses of 150 mg. and higher. It's exciting to know that John will have the option of increasing his dose in the future if needed. But for now, I'm glad he is taking no more than he needs to keep his CLL under control.

This is a very exciting time in CLL research. These new drugs may eliminate the need for chemotherapy for many patients, improving quality of life as well as lengthening survival rates. I'm thrilled that my husband and mother-in-law are participants in this cutting edge research.

When John was diagnosed in 2007, we had no idea what was ahead. But God did. He was never surprised. And He has guided our path. I told John the other night that I feel like God put me in his life for this battle - because God knew I would not be passive. John would have been.

For those of you reading who do not know our story, John received his initial diagnosis from a local hematologist. About three weeks had passed between his high white count showing up in routine blood work and our appointment with the hematologist. During that time, I did almost nothing but read about CLL online and join support groups. I was a sponge. I soaked up information and I cried, worried and projected. I was sharing with John what I had learned about the importance of seeing a specialist. And we'd made an appt. for a thorough evaluation at Mayo. I knew we needed to find out all of John's prognostic markers. I gave John a mini crash course in what I'd been learning about treatment options and how important treatment decisions were. I told him that not just any doctor would do and I didn't want to make that decision based solely on convenience. John would have. It would have meant less time away from work. I didn't care about that and I was vocal about it.

I'm reiterating all of this to set the stage for that first appointment. On our ride to the doctor's office, I told John that I was going to ask certain questions and the way the doctor responded would let me know his level of expertise in CLL. John said, "Okay. But do me a favor. If he says the wrong things, let's not challenge him. Let's just smile and nod and then you can tell me he's not the guy after we leave." I agreed.

In this initial examination, the hematologist in question told John that his lymph nodes could be swollen as a result of infection. So he gave him a Zpack and said if they went away after taking the antibiotic, good. If they didn't, they were swollen from the CLL and John would need to immediately start treatment. At this point, we didn't even know all of John's markers. And I knew that there were milder options we could at least consider before going straight to chemotherapy. So, I asked what kind of treatment he would use. He answered, "FCR." I said, "That's chemo. You would immediately proceed to chemo?" And in a very dismissive, flippant (in my opinion) tone, he said, "Well, yes..." but in his thinking, aspirin was chemo. And then he laughed.

I didn't find that amusing at all. I wanted to say, "Oh yeah? I guess you've never had to take it because I doubt that a chemo patient would agree with your assessment." But I kept my promise and kept my mouth shut. However, I knew in that moment that I would never entrust my husband to that doctor. And when we left, I told John that if I'd learned anything, I had learned that he did not need immediate treatment and we had time to consider options other than going straight to chemo. And I explained to John why this was not a treatment we should rush into. One of the points I made to John that day was that there were going to be new, cutting edge therapies in development and I wanted him to take his time in making critical treatment decisions because, once made, side effects and complications could not be reversed. I never tried to make John's decisions for him. But I took seriously my role of making sure he did not make uninformed decisions.

We never went back to that doctor. On the way out the door of the building, I said, "I don't like that guy and he is not the right doctor for you. I will find someone who is." I was actually pretty ticked off about the aspirin is chemo remark. And for a long time I considered writing him a letter. But I never did. Shortly thereafter, an online CLL friend (from the CLL Christian Friends forum) told me there was a CLL specialist in Nashville by the name of Dr. Ian Flinn, and he had recently come here from Johns Hopkins. I called immediately and made an August appointment. In the meantime, we went ahead and kept our July appointment at the Mayo Clinic in Rochester for a complete evaluation with Dr. Clive Zent. And during our consultation with him, John mentioned Dr. Flinn and asked Dr. Zent's opinion of him (which was glowing, by the way). Dr. Zent told John that if he had a specialist like Dr. Flinn within an hour's drive, he should not consider going to anyone else. I loved it that a Mayo doctor was reinforcing all the same things to John that I had been saying to him.

As a result of all the research I had done those first few weeks, I understood everything Dr. Zent had to say to us in that consultation. Nothing went over my head. And because there had been a few well-meaning friends who had cautioned that I might be reading too much on the Internet, I felt a great deal of satisfaction when Dr. Zent emphasized a lot of the same points I had been emphasizing. I didn't have one single detail wrong as a result of my online research. I was a highly educated CLL advocate right out of the gate. And it felt good to have that substantiated by our visit with Dr. Zent. I never said it, but I was thinking, "Well, I guess you see now that I do know what I'm talking about." : )

I'm revisiting these details for a very specific reason. If John had put himself in the care of that first doctor and gone along with his recommendation, he would have received FCR in 2007. As it turned out, FCR did not even work for John. CAL-101 wasn't available then. And who knows what our options would have been realistically. John might have had no good option other than transplant. And 40% of CLL patients who have transplants don't survive the transplant. (That was the percentage the last time I researched it.)

When we consulted Dr. Flinn, he did not urge John to immediately start chemo. He said John could try to tolerate the lymph node swelling for a while and try some milder treatments before electing to undergo chemo. In the summer of 2008, John received Rituxan (a monoclonal antibody) infusions for eight weeks. It did not give him a remission, but it reduced the nodes enough to buy him some time. And in September of 2009, Dr. Flinn suggested that John might want to go ahead and have FCR. He hadn't urged us to rush into it, but he didn't want to see John put it off too long, either. FCR gives most patients a decent remission, and some a long and deep remission. Dr. Flinn was hopeful that John would respond well. But he didn't. His last infusion was the last week of January, 2010. The lymph nodes only shrank by about 50% and within weeks the lymph nodes were growing back.

I pressed for CAL-101 before considering transplant and Dr. Flinn did not object. He got John a spot in the trial. And now John is a star patient on the lowest dose.

There was no way to know for sure that CAL-101 would work for John. But I'm sure thankful we had the opportunity to find out. And if John had failed chemo in 2007, his whole situation would have been irreversibly altered. I am so glad I learned the importance of consulting a CLL specialist before proceeding with any course of treatment. And I'm thankful I had other CLL patients to turn to online, who helped to educate and inform me that treatment decisions for CLL, which is chronic, are not urgent decisions that one has to make overnight. You have time to gather information, get more than one opinion, consult a specialist, research your options. Because I knew those things early on, I was able to look out for my passive husband, who would have more than likely not researched or challenged whatever that first doctor told him to do. That is his nature. And he might not be here to be in this clinical trial as a result.

I'm not saying any of this to toot my own horn. John has been a blessing to me more than I could ever be to him. But I know I have played an important role in his health care and I sure feel good about that. I sometimes think this was one of the main reasons God sent me to John. It wasn't his time and I got to be God's instrument. In most ways, John takes care of me. But in this way, I feel tremendous satisfaction in having taken such good care of him.

Any time God puts someone in my path who has just received a diagnosis, I risk being perceived as overbearing in stressing the importance of consulting with a specialist in their particular disease. I do that because I know how important it can be. I do it because I genuinely care.

Our current situation could have been so different and our choices were more critical than we even comprehended. I was not about to entrust the care of my precious husband to an arrogant doctor with a casual attitude toward chemotherapy. And I have never regretted being vocal about that.

Monday, December 19, 2011

Why does the truth hurt?

I am still plugging away at physical therapy. But I did not leave feeling like Rocky today. I left feeling like my old wimpy self.

Today was really hard. I had a different therapist. He is a really nice guy and he was "overseeing" my therapy up to this point. So I've gotten to know and like him. But last Friday was the last day for my previous therapist (the one who was working with me the most). So, today the "overseer" became the main therapist. And his style is a little different.

I had gotten to where I wasn't in quite as much intense pain during therapy. I was consistently making progress. And Daniel (the therapist who left) was able to push me a little further every single appointment. So I know he wasn't letting me slide or going easy on me because the therapy was always challenging. But I thought I had toughened up and was enduring the pain better than in the beginning. And that was encouraging to me. Daniel seemed to agree that I had gotten a little tougher. (I realize he might not have really thought I was, but he was convincing and it made me feel good nevertheless.)

Many times over the last few weeks, I have thought about how fortunate I was to be assigned to him. The first day I went in there, I was scared to death of both of them because of my previous bad experience with shoulder therapy (all pain/no gain). But in no time at all, I was working well with Daniel and he seemed to know when to back off. So I became more trusting and more relaxed in spite of knowing pain and discomfort were coming. I stopped dreading physical therapy.

Today was really difficult for me. I said that already, didn't I?

Don't misunderstand. Both therapists are great. I know they have to hurt me to help me. But I could tell I wasn't "trusting" John today the way I had grown to "trust" Daniel. I was trying, but I was apprehensive.

John has a dry sense of humor. And when he teases me, I am never quite sure he is teasing. For instance, feeling very self-conscious about my tears and lack of toughness, I said, "I thought I had toughened up, but maybe I haven't." And without missing a beat, John said, "That isn't your strongsuit. But if it hurts, it hurts." And then a little later I said, "I'm sorry I'm such a wimp." And John said, "I'm sorry, too." And he doesn't laugh when he says it. My inner affirmation seeker wants him to say, "You're not a wimp."

I was trying to explain this to John (my husband) tonight. I told him that part of me absolutely knows John (my therapist) is just kidding. But I left therapy this afternoon feeling down. John (my husband) laughed and said, "You can't personalize stuff like that." I agree. It's stupid. But I can't help it.

You feel so vulnerable and helpless when someone is twisting and pulling your arm in ways it does not want to go. You feel especially vulnerable when you're lying there crying like a baby, taking deep breaths (or forgetting to breathe entirely) because of the pain. How I wish I could show no emotion, make no sounds, produce no tears, etc. But I can't. So, taking all of that "truth" into consideration, why does the truth hurt my feelings? Truth is...

I am NOT physically tough. It is NOT my strongsuit.

So, if I can say it about myself, it shouldn't bother me for anyone else to say it. Right?
But it kind of does anyway.

I met someone the other day who is also going through physical therapy for frozen shoulder. She said, "I can take pain, but the pain of frozen shoulder is nauseating, it is so bad." It made me feel better to hear someone say that who does consider herself tough. Because only someone who has experienced this knows how painful it truly is. I know there are worse things, but that doesn't make it easier.

I told John this afternoon that I thought I had overcome my fear and dread of physical therapy. But I now think it's back. I'm sure he's right that I'll overcome it again.

But maybe not this week.

Oh man, I'm going to feel stupid for posting this later (when I'm feeling better).
But it's the truth of how I feel right now.

Wednesday, December 7, 2011

8 Week Update: John & Marian

John and Marian started out in different Phase One CAL-101 clinical trials. John's trial was CAL-101 as single agent, for patients previously treated and either relapsed or refractory to treatment. Marian's trial was CAL-101 in combination with Rituxan, for older, untreated patients. Each of those trials consisted of twelve 28-day cycles of treatment. John's; oral CAL-101 alone. Marian's; oral CAL-101 plus weekly Rituxan infusions for the first eight weeks. John completed his first twelve cycles in April of 2011. Marian completed her first twelve cycles in August of 2011. And now they are in the same extended phase study of CAL-101, which they will remain in as long as the drug continues to work for them (or until the drug becomes FDA approved for CLL). They each take a capsule morning and night. John takes 50 mg. Marian takes100 mg.

Their appointments were not in sync previously. But we now have them going on the same day every eight weeks (which is really great for me since I go with both of them). And yesterday was the day.

Fortunately, there is nothing to report other than how well they both are doing!
And here are their numbers:

John:
WBC      7.39
ALC       1.51
NEUT     4.08
RBC       4.67
HGB       16.1
HCT        47.3
PLT         244

Marian:
WBC       11.0
ALC        4.56
NEUT     5.28
RBC        5.19
HGB       13.8
HCT        44.2
PLT         183

Both John and Marian had a slight increase in their white count. But the increase is in their neutrophils, not their lymphocytes, which is a positive. Everything looks strong and stable. Even Marian's red counts are very good this time (they have been slightly low at times).

I've been blogging about their status for quite some time. So anyone who is interested in previous information or what their status was prior to CAL-101: all you have to do is use the search bar or look in my archived posts.

Thursday, December 1, 2011

Surprises in Life

My son was ordained as a Deacon in the Anglican church last night. We attended the ordination and, throughout the service, I kept thinking about the surprising twists and turns of life. I whispered to John, "Danny becoming a pastor is no surprise to me as a mom, but this type of ordination was not something I could have ever imagined." I didn't mean it in a bad way. It's just that I grew up about as opposite of this formal, liturgical style of worship as you can possibly get. And so did Danny.

I am not Anglican. But I enjoy visiting Danny's church (Church of the Redeemer in Nashville). And the people at Redeemer are lovely, as were the people in the church where Danny was ordained.

I've grown in my faith a great deal over the last nine years. I've learned to appreciate different styles of worship. And I trust God more than ever. I have seen God's hand in Danny being where he is. I know God has always had a plan for his life. And last night was a part of it.

I'm proud of you, Danny! And I love you very much!