CAL-101 Day 29 (and thoughts on pride)

We have just completed the first 28-day cycle of CAL-101. John had CT scans yesterday and we spent seven hours at the clinic today so they could draw blood periodically throughout the day. He also had two EKGs. We had to do this on the first and last days of Cycle One. I think this is the last time we have to do one of these long days for this 12 month phase of treatment.

The clinical study coordinator came in with a big smile on her face and said that the scans showed a great response in all the lymph nodes throughout John's body. She hadn't done the math, but she said at a glance it appeared that he has had about a 35% reduction from the first month of treatment alone. And that is at the 100 mg. per day dosage.

John hasn't had any unpleasant side effects, other than his reflux has been a little worse lately and he has had some skin irritation; breakouts on his neck and one or two red bumps on his cheek (like acne) since this treatment began. We don't know if it's even connected to CAL-101. We'll see Dr. Flinn next Thursday and ask him about both.

John's blood is stable. His WBC actually went down a bit from last week. His numbers are:

WBC    7.9
HBG    13.5
HCT    40.6
PLT     168
AL       5.6
Neuts  2.1

I'm feeling pretty upbeat about all of this . . . and very thankful.

I'm also thankful for the wonderful staff at the Sarah Cannon Blood and Marrow Transplant Unit. Dr. Flinn is obviously a wonderful CLL specialist and I know how fortunate we are to be in his professional care. But I cannot say enough about the entire staff. We have received excellent care at every turn. The very best, as far as I'm concerned. And in addition to the high quality of medical attention, everyone is so warm, personable and fun to be around. You wouldn't think so, but we laugh a lot when we're there.

From the first days following his diagnosis, I have appointed myself the position of John's patient advocate. I was making his appointments for the month of July today and reminded the front office person to make sure the orders for his next CT scans specify no contrast. (This always throws the imaging center off because it is routine to take either IV or oral contrast. But in my research, I learned early on that contrast is hard on kidneys. And out of my desire to protect John's one kidney, I asked Dr. Flinn if John could have the scans without contrast. I had read that the nodes are visible without it and to avoid it if you have any kidney issues. Dr. Flinn was very accommodating. He said he could see what he needed to see without it. And John hasn't had to drink it ever since. But I have to remind people because it's not usual procedure.) I sometimes feel like a broken record, but if it's on the orders, it isn't an issue John has to deal with prior to each scan.

One of the front office girls has apparently heard me explain this when making appointments in the past (it's not always the same person doing the scheduling) and she commented, "You are always on top of this. You are an excellent patient advocate for your husband." She made my day. Because nothing is more important to me than looking out for John to the very best of my ability.

I take my role in John's care very seriously . . . maybe even too seriously. Time for another one of my confessions. (They say it's good for the soul.)

I recently interrupted John mid-sentence because I thought he had forgotten that I found Dr. Flinn through one of my online resources (CLL Christian Friends). What he was about to say was that the specialist at the Mayo Clinic knew of him and highly recommended him. But I thought he was giving credit to Dr. Zent for telling us about Dr. Flinn (instead of crediting me and my thorough research). Turned out that he wasn't going to say that at all and if I'd given him a chance to finish, I would have realized that. Later on, I was apologizing for interrupting him and hammering myself for my big mouth. And he so sweetly said, "You just didn't let me finish. I was GOING TO praise you for finding Dr. Flinn."

Oh my gosh. There is that little dose of reality he gives me from time to time in such a gentle way. I felt so embarrassed. I realized how I must have sounded like I was demanding my props! I explained to him that I am not looking for praise or glory. I just take my role in all of this SO seriously and it is the most important job I have in life to learn all I can and be attentive to his care. I guess I do take pride in being the best patient advocate a husband could possibly have.

I really don't do it for praise. I do it because JOHN is so important to me. But in that conversation, I realized that words of affirmation are still a driving force within me and I would not need to receive credit for finding Dr. Flinn if I wasn't trying to prove that I'm taking great care of my husband.

I told John today that our conversation was a wake up call for me. It put me in tune with my pride and reminded me that I don't need applause for taking care of someone I love. It shouldn't even matter to me if John remembers I made an appt. with Dr. Flinn before we went to Mayo. All that really matters is that we found Dr. Flinn and John has the very best care.

I have prayed many times in recent years that God would not allow me to live in denial of my flaws and my pride; that he would always expose what HE sees in my heart (those things that are so easy for me to be unaware of). I don't think of myself as a prideful person. I have never been willing to let pride rule in my life. And I have certainly never chosen pride over a relationship. But that doesn't mean I'm free of pride.

I have this compulsion to prove myself to people. I think sometimes I may even think I'm proving to John and others how much he means to me because I am such a dedicated care giver. But then I am reminded that my value does not come from my performance. My value is found in Christ and the price He was willing to pay for me on the cross.

Thank You, God, for Your gentle reminders. And Thank You for such a sweet and gentle husband who loves me just the way I am.

Comments

Randy Shannon said…
Shari,

Glad to hear John's response to CAL101 is a sizable reduction...hope it continues.

Being a "one" kidney guy as well, I also do not have the IV contrast, I do drink the milkshake. Maybe I need to discuss this with Dr. Byrd next month.

God Bless
Shari said…
Randy, Dr. Flinn is able to get measurements on the nodes with no contrast (not even the liquid). I'm sure if he was looking for something other than swollen nodes, the contrast might enable him to see something in its infancy and would be necessary. But John's scans are solely to measure the lymph nodes throughout his body. I'm sure the contrast enhances them visually, but if it isn't necessary for the measurements, I didn't see why John should be drinking it regularly.

The radiologist asked John about getting to skip the contrast this week and said, "Lucky you!" John explained that his wife had done research and discovered that contrast is hard on the kidneys and he only has one, so his doctor doesn't require it. The radiologist said, "That's absolutely right. It sure is." I know the IV contrast is the worst, but I'm so thankful John doesn't take any. And I also love it that he doesn't have to drink that stuff! : ) We are in and out pretty quickly.

You should ask. Sometimes that's all it takes. If I hadn't brought up the subject and made the request, John would be drinking the liquid too - because it's standard procedure.

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