CAL-101 Day 57

Yesterday was the last day of the second cycle of John's current treatment with CAL-101. So he had more CT Scans this morning, then two blood draws (before and 90 minutes following the morning dose), then an appt. with Dr. Flinn for an exam and review of his scan results at 3:30. It was a long day. The second blood draw was at 1:30 and then we had two hours to kill in Nashville before our visit with the doctor. This worked out well for me because I got to spend the whole day with John and he took me to
J. Alexander's for lunch. There is no better way to kill time (in my book) than with good company and good food (in that order).

I'm excited about John's response to CAL-101 thus far. He is doing great. His lymph nodes continue to shrink. He had a drastic reduction by the end of the first cycle and the improvement is more gradual now. But after just two cycles, John has had an approximate 50% reduction in the size of his nodes throughout his body. The largest one in his neck is now just 1 cm. He has a few in the abdomen and pelvic area that are still larger than that. But that much improvement in less than 60 days is a wonderful response. This drug is working better than anything he has tried previously. We hope these results last for a very long time. We don't know with any certainty how long the drug will work, since there's no longterm data yet and it is still experimental. But, nevertheless, I feel encouraged, optimistic, hopeful and not really trepidatious at all. I expect the good results to continue. And I am not projecting myself into any other scenario (which is no small victory for me).

In addition to the good response in his lymph nodes, his blood counts were all within normal ranges today. His white count actually went down (from 10.2 to 9.5). His platelets went up to 220 (from 154 two weeks ago). And his neutrophils were up to 4.4 (from 1.8). That's the highest his neuts have been since early October.

We have developed a relationship with our lab tech (I'm not sure that's her official title but she is the person who most often draws John's blood). She is a sweetheart with a great sense of humor and John is a fun patient. We joke around a lot. So when Mandi calls him back now, she no longer says "John Howerton." She says: "Bueller!" (As in Ferris.)

After she draws his blood, she puts a small sample into a machine, which spits out results in a couple of minutes. And she usually hands the sheet of paper to me (I keep a spreadsheet on all of John's bloodwork and treatment). But every now and then John grabs it and looks at it first. He did that today and when he looked at it, his eyes got big and he made some comment that indicated a change. For a second or two, I thought he was reacting to an increase in his white count (because that happens to some patients with this drug). I said, "What?" And he said, "Every single count is within the normal brackets."

I went into this anticipating positive change in John's nodes and an increase in his white count (at least for a while). For his blood to be responding so well this early on in treatment -- in addition to his nodes -- is icing on the cake. And just this week he told me he feels a slight increase in his energy level. He's still tired and says it's not the normal tired a healthy person feels; it's a feeling he can't quite describe to me. (I guess that's why they call it fatigue.) I know he is always going to have good days and bad, but for me it is exciting and encouraging to hear him say for the first time, "I think I'm starting to feel a little bit better."

Even as expressive a person as I am, it's not possible for me to convey in words how thankful I am that he is responding so well to this drug -- and at the lowest dose. I have a CLL friend who has called his partial remission following chemo an "intermission." It's such a good description. With an incurable disease, you always know there are going to be bumps in the road ahead. Currently there is no cure. So a lot of patients I've talked to have told me they feel as if they are always waiting for the other shoe to drop, even when things are going along well. I'm not feeling that right now, though. I feel like I'm in a resting period from worry.

I am having lunch with a friend tomorrow and I told John today that I'm really looking forward to it; partly because I will be fun to be with tomorrow. And the last time we got together, I was really struggling emotionally. I cried off and on through lunch and afterward I felt like I had been such a bummer to be with. Fortunately, I don't have to be "up" for any of my friends. They wouldn't want me to feel like I couldn't share my struggle. In spite of that, I sometimes feel weary of my own melancholy during those rough days and wish I could always rise above it.

One of my favorite authors is Jerry Bridges. And I recently bought another one of his books: Trusting God Even When Life Hurts. In one of the reviews, I read that Bridges began by saying you shouldn't read the book WHILE you are going through hard times. (This particular reader did anyway. And he was angry at parts of it. But then he said the book changed his life.) I'm thinking that maybe I should read it soon, while I am enjoying this restful intermission.

Time is getting away from me and I need to go work out.

By the way, I am not doing so well with my goal of giving up caffeine this week. I made it through two days. On day three of my headache, I had iced tea. Yesterday I limited myself to one caffeinated latte. Today I had a cup of coffee and an iced tea. Tomorrow I am going to limit myself to one caffeinated drink and keep trying to get it out of my system. Just maybe not cold turkey. And not this week.

We made a quick and unexpected trip to Evansville yesterday to attend the visitation for a friend's wife who lost her own cancer battle this week. John and Steve (her husband) go way back. Although they don't see each other a lot these days, they were very close personally and also as professional musicians in the seventies. They were in a successful band together and they were a duo for a while. Their bond is lifelong. It really doesn't matter how much time passes between visits. And I already knew that about John's friendship with Steve. But I really felt it when John called to tell me that he wanted to go and then yesterday when I saw Steve's face as John walked into the room. I was so glad we were able to be there with him.

Life is short no matter how long a life we have. But Ruth was only 41. She and I shared the same birthday, ten years apart. I didn't know that until this week.

I feel very grateful tonight for the last ten years God has given me. The last seven have been the happiest of my entire life. I could tell that Ruth and Steve had that kind of happiness too. And while I wish Steve could have had her for a lot longer, I know he must feel so thankful she was a part of his life, no matter how long. I will always be thankful for every day I have with John. I'm so thankful I have been privileged to experience the joy and satisfaction that a happy and fulfilling marriage brings. John is such a tremendous blessing and a miracle in my life. So I know that God still performs miracles.

I pray our "intermission" continues for a very long time. Thank you to all of you who are praying for that along with me. I always feel your prayers.


Betty Kirschner said…
I am so happy John continues to do well, I will continue to keep you both in my thoughts and prayers.

Yes, life is short and we need to appreciate everyday and the blessings we have. I know this is not always easy but I try to have a positive attitude at all times.
Robin Hanloh said…
Shari, I came to your blog specifically to check up on John and I am pleased to know this new treatment is working better for him. I am also happy to know you are feeling encouraged by his progress. I love you my friend,
Lynda said…
Shari, I know your heart is slowing down today. What wonderful thing that has happen to your John. I'm thankful for what the Lord is doing for John. Our pray and love are with you.

lynda said…
Shari, Iam so thankful for John's body Making process. Thankful for the Lord watching over John. Our prays and our Love

Jan Faulkner said…
Shari, I am so glad John is responding to the treatment so well. Praise God for working a mircle in John's life. I will continue to keep you and John in my prayers.

P.S. I received your book today!
Shari said…
Thanks, my friends! I appreciate your support and prayers!

Jan, I look forward to hearing your thoughts on the book!
Brian Koffman said…
Very happy for you. CAL 101 is a great drug for nodes and is the kind of drugs we need for CLL.