Battles Big and Small

Rebecca, the boys and I had lunch Tuesday at Blue Coast Burrito. We were able to time it just right and Pax-Man slept in his carrier the whole time. It was one of the best lunches (out) we have had with the kids in recent months. Joshua and Andrew did not argue or melt down. They both ate really well. We had a lot of fun. And Grandma Shari polished off a plate of nachos, which were so good that I did not care about the calories (until the next morning when I got on the scale).

I sat with the boys while Rebecca went to the counter to order a take home burrito for Danny. The boys were trying to decide who I could be (in their world of Peter Pan and Super Heroes). And I told them, "Grandma Shari is not Wendy, or Wonder Woman, or Bat Girl...Grandma Shari is MISS PIGGY!" They cackled and said, "You're not Miss Piggy!" I nodded my head and pointed to my plate.

I have been eating lunch out quite a bit lately, and not healthy lunches. My birthday was Cinco de Mayo and I've been treated to several birthday lunches. John frequently laughs as he leaves for work and asks, "So what is on your social calendar today?" Yesterday I told him that I was going to Maggiano's with Bible study friends. I added, "Eating at Maggiano's is the last thing I should be doing right now. I need to lose a few pounds so badly. But I want to spend time with my friends." He teased, "No one is holding a gun to your head and making you eat." I replied, "No one has to." Sharing a good meal just seems to be one of the best ways to nurture the bonds of friendship! I know I'm not the only person who feels this way or I wouldn't have so many opportunites to eat with friends!

I read this quote in Sully Sullenberger's autobiography yesterday, written to him by a passenger on the plane Sully successfully landed in the Hudson. David Sontag said: "We leave a little bit of ourselves with everybody we come in contact with." I agree. It's so true! And one of the little bits of myself that I've left with many a friend is my absolute passion for good food. I hope I am able to leave something of more consequence than that, but I do know that I'm a lot of fun to eat with. : )

Connecting with people I love, nurturing the bonds of friendship and just 'being there' for others are high priorities for me. And there is really no way to maintain strong connections without investing time in our relationships. One of the main ways women do this is by going to lunch together. And I find myself making lunch dates a lot these days. No matter how much I go to lunch, though, there are still friends whom I have not hung out with in weeks or months that I am trying to make plans with. I realize what a tremendous blessing this is. I've heard it said that we only have time to invest in a few close friendships. I get that. I know there is a level of truth there. But I rebel against it.

What I do need to learn how to do is go to lunch AND use a little self-control. I have friends who are good examples in this area whom I should try harder to emulate! And this morning, after forcing myself to face the reality of the scale, I know that I have to get a grip. I love to eat. Exercise has saved me from weight gain up to this point. But since I've hit 50, I can tell that I cannot continue to eat the way I always have. Exercising is suddenly not enough. And I don't like the way I feel lately. Time to get serious and fight the battle.

Weight is the small battle in my life. The big battle is CLL.

Today we will get started on the next battle strategy. John will repeat a lot of testing today and tomorrow. He'll have CT scans. He'll have vials of blood drawn. We'll see Dr. Flinn. Tomorrow morning he will have to endure another bone marrow biopsy. And then we will begin treatment with CAL-101 some time next week.

John has an uncomfortable rash on his neck that he hasn't had before. And he has developed two painful cold sores on his lip this week. During the six months of chemotherapy, he took an antibiotic and an anti-viral continuously to protect him from infection. He has not been taking either of these since February. We are both wondering if his immune system is becoming more compromised. His bloodwork will provide some insight into that, I guess.

CAL-101 is working beautifully for other CLL patients. I have high expectations of this therapy. And I quickly get tears in my eyes when I allow myself to imagine John feeling good again and having his lymph nodes disappear.

May 31 will be the seventh anniversary of our first date. In spite of CLL, the last seven years have been the happiest and most rewarding of my life. I believe God is going to grant us many more. And I know He will give us the strength and the grace we need to fight this battle.

Comments

Stephanie said…
Shari,

I'm so glad John is set to start the CAL 101 trial. I too am extremely hopeful that this is going to be a break through. We have been riding the invisible roller coaster for 9 years. Because my husband doesn't look sick and has continued to work even through four separate treatments, some forget he has cancer. I do manage to float down the river of denial myself time to time, but unfortunately reality seems to find me. As nervous as I am about this , I am very hopeful.
Perhaps this is going to be what we've been waiting for, our goal likewise is to be as healthy as possible when management arrives. Tim is the picture of health, he just has cancer, he is healthier and stronger then most men his age. We hiked Mt LeConte the week after his third cycle of Fludara last November. He is definitely doing his part to stay healthy and dragging my lazy behind along. Dare I say, he is feeling so well and is so positive that we are planning to hike the Grand Canyon again this fall. Plan, that is something I haven't done in the past year.
The start day is a long day , no longer than Rituxan and not near as scary, don't be nervous. I hope all goes well and the benefits are amazing.
Shari said…
John had a very severe delayed reaction to his first infusion of Rituxan. His WBC dropped 40K in four hours. His body simply could not process all of those malignant lymphocytes being dumped in such a short time, resulting in tumor lysis syndrome. He seemed fine until we got in the elevator and then he passed out cold and hit the floor just as the elevator doors were opening. It was so scary. With help from bystanders, I got him back into the doctor's office, where he did a repeat performance (this time from a sitting position). His eyes rolled back and he made noises that sounded like he was struggling to breathe. For what seemed like several minutes (but was probably just seconds), I thought I was losing him. I will never forget that day. In fact, I remember it nearly every time we use that elevator to this day. His doctor and a nurse literally ran him down to the ER in a wheelchair. I could barely keep up with them. And he was fine. It was TLS and he recovered quickly. They had never seen such a delayed reaction. When patients react, it's usually during the infusion, not after. He never had that reaction again. But once was enough for me! It's a big joke now, of course; the day John took a dive and could have really hurt "business" with his performance in the waiting room that day.

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