Home Sweet Home

We got home last night at around 7:30. We would have gotten home a little sooner, but we stopped in Huntsville to eat dinner. I had all my clothes put away and a load of laundry going before LOST started at 8:00. It was a little sad to leave the beach, but it's also good to be home.

I had a hard time getting out of bed this morning. And even now I am having a hard time getting myself going. I did face the scale. It wasn't as bad as I thought it might be. I should be able to get rid of a three pound weight gain pretty quickly if I put my mind to it. And right now I'm burned out on food.

In spite of my lethargy, it has been a pretty productive morning. I called and had a very nice conversation with Dr. Byrd's assistant in Columbus, Ohio. For those of you who have not had to learn a great deal about CLL, Dr. John Byrd is another highly regarded CLL specialist. John already has a very good CLL expert in Dr. Ian Flinn. We couldn't be happier with him as our doctor. Not only is he an excellent CLL hematologist, he is just a great guy. He's very caring, attentive, and has a good sense of humor. John and I both like him very much as a person in addition to the medical care he provides. But there are different clinical trials available through different doctors/locations and before we decide on the next treatment, I believe it would be in John's best interest to explore all the possibilities. Not to mention, if two highly regarded CLL experts give John the same advice about what to do next (especially if they both recommend transplant now rather than later), I will have more peace of mind proceeding with a high risk option. I need to know we have explored every possibility and gotten more than one opinion no matter how much I think of any one doctor.

We will see Dr. Flinn tomorrow. And I made an appointment for John to see Dr. Byrd later in May. Dr. Byrd has some new clinical trials opening with a couple of very promising new drugs. Dr. Flinn mentioned two of them to us as drugs he is very excited about at our last appointment. He is doing a clinical trial with one of these drugs presently in combination with other chemo drugs. And Dr. Byrd has a trial with the new drug alone (as well as some other options). It is not uncommon for CLL specialists to collaborate and consult with one another on difficult cases. And we would continue to see Dr. Flinn even if John enters a Columbus trial through Dr. Byrd. I'm praying that God will give us His divine direction in the decisions we will soon face. John's lymph nodes have failed to respond twice now. First to Rituxan alone in 2008 and now to FCR+Lumiliximab. His lymph nodes are the only reason he entered treatment. His blood has never been the problem. He does have a higher than average white count, but nothing alarmingly high for a CLL patient. If not for his lymph node involvement, he would still be comfortably in watch and wait.

So we will get Dr. Flinn's opinion on how to proceed, and then also ask him to give us a referral (for the insurance) to see Dr. Byrd next month. After two evaluations and expert opinions, we will have a better idea of what is next. John's only symptoms of progressing CLL are his growing lymph nodes and fatigue. All of his blood counts are stable (unless there has been a big change since February).

I feel a little better just having spoken to Dr. Byrd's assistant. I emailed her the Excel spreadsheet I have kept on John since diagnosis. I have recorded the data from every CBC since April of 2007, his treatment details, his follow-up visits, etc. I was advised early on (by other CLL patients I have met online) that it's sometimes very helpful to have all of this information at your fingertips. So I started spreadsheets at diagnosis for both John and then his mom.

I called the insurance company after I spoke with Dr. Byrd's office and verified that Dr. Byrd is in network. I'm waiting to find out about the hospital. This next treatment decision is critical. I feel a lot better just knowing that we will not make a decision hastily or without first doing all our homework and exploring all of our options. I will continue praying for God's direction. And I believe that He is already directing me in my research.

It definitely helps me emotionally to have an active role in John's care. I could never sit idly by as an observer. A caregiver feels helpless enough in these circumstances. There is a sense of satisfaction for me in knowing that I am doing everything within my power to watch out for my husband. I am careful not to be a mother hen (except when it comes to that one kidney and my determination to protect it from unnecessary damage). And when it comes to the final decision about anything, the decision will be John's. But I will make certain he knows all his options and the ups and downs of each.

Another thing that is on my mind is the spiritual aspect of this battle. While we were in Florida, I read a book George and Betty Jackson just published entitled "Healing Spirit, Soul, and Body." A lot of emotion was triggered as I read this little book. I confronted my fearfulness. And I thought deeply about obedience, forgiveness, trust and relinquishment as it pertains to healing. I want to be a channel for God's love and healing power in the lives of others; and especially in John's life at this critical time.

When I read the following words, I took them to heart.

"In our years of counseling, we have found unforgiveness to be one of the most common sources of frustration in one's spiritual life as well as the cause for an apparent failure to receive answers to prayer. Many times there is only one specific person whom we need to forgive."

As I read that last sentence, one specific person did pop instantly into my mind. I have thought that I had forgiven that person. I know I have tried. But I wondered if it could be possible that, in spite of a genuine desire to forgive, perhaps I have had a greater desire to hold onto the injury and the pain.

George and Betty elaborated on forgiveness:

~ Forgiveness is not forgetting. People who try to forget find that they cannot.
~ Forgetting may be a result of forgiveness, but it is never the means of forgiveness.
~ Forgiveness deals with your pain, not another's behavior.
~ Forgiveness does not mean that you agree with the person you are forgiving. Remember: Positive feelings will follow in time; freeing yourself from the past is the critical issue.


As I meditated on my reading, I thought about the paths to forgiveness I could take. I could write a letter conveying the pain that I have carried for so many years and then communicate the words "I forgive you." But then I quickly realized that writing such a letter would be done out of need; my need to be understood and to have my pain acknowledged. This person has not asked my forgiveness and has never acknowledged the pain that was inflicted. So saying "I forgive you" could just lead to a newly perceived offense. That's not a road I want to choose.

No, the forgiveness I am desiring is not about having a wrong acknowledged or repented for -- or even having a relationship. I want to release this person from owing me anything or from helping my pain to heal -- even through an apology or an acknowledgment of wrong. I want to forgive purely and simply because God has forgiven me. And because I want a pure heart, untouched by bitterness. And for that I have to turn to God, not to a person.

I don't know specifically what God's will is for our future. This CLL battle may get harder. On the other hand, God may have a surprise for us that will lead to overwhelming joy instead of sorrow. I know that nothing is impossible for Him. And I also know that I have the opportunity to glorify Him in any and all of my life's circumstances. One little quote I heard years ago that has always stuck with me is: "We are never more like Jesus than when we forgive."

I want to be obedient. I want to reach world class levels in forgiveness. I want to be a clear channel for God's love to flow through me to others; especially my husband. In my own strength, I can do nothing. But I know that I have unlimited potential in and through the power that is available in Jesus Christ.

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