First Day of Treatment for Marian!
This is my beautiful mother-in-law during her first day of treatment with Rituxan and CAL-101. You would never know she is 78. She doesn't even color her hair. She has only a few gray strands here and there. A patient ten years younger thought Marian was younger than she was. She was shocked when I told her Marian's age.
Today went so smoothly. The first couple of hours Marian snoozed as a result of the Benadryl and Tylenol given to help prevent possible reactions. And some of you may remember John's reaction immediiately following his first Rituxan infusion. He sailed through the entire day and then lost consciousness in the elevator as we were leaving (fell and hit his head on the metal threshold just as the doors opened). Strangers helped me get him from the elevator back into the office and he passed out a second time while sitting in a chair. A nurse thought he was having a seizure and I thought I was losing him. (He made breathing noises that sounded like he was struggling for air.) It was very scary.
Dr. Flinn and a nurse got him into a wheelchair and we literally sprinted down the hospital corridors to the Emergency Room. It turned out that he had experienced Tumor Lysis Syndrome, which can be very serious. But he was fine. And he was released after all the tests confirmed he had just had a very sudden drop in blood pressure as a result of all the malignant lymphocytes being "dumped" from his blood - through his one kidney - and processed out of the body after being "killed" by the Rituxan. His white count had dropped 40K in four hours. The body was not designed to "flush out" forty thousand lymphocytes in a few hours.
This is not a common reaction. Most reactions are more benign, like fever and chills or just feeling weird, lightheaded, etc. John's reaction was unusual and had never happened before to any patient of Dr. Flinn's. So I wasn't expecting this to happen to Marian, but she and John are so much alike in so many ways. They both have a low-normal blood pressure. And they both have only one kidney. So I couldn't help thinking about it going into this first day.
However, the day was as uneventful as it could possibly have been. She got the whole infusion without even a mild reaction. If she had reacted, they would have had to stop the infusion to treat the reaction, then slow down the rate of infusion. That's why we could have been there for up to ten hours. But since that never happened, we were done by 3:30.
We got the results of last week's testing this morning before treatment began. Marian does have enlarged lymph nodes in the abdomen, pelvic and cervical areas. None are as large as John's were, but there are several of significant size. And we found out the results of her bone marrow biopsy show 90% CLL involvement in the marrow. That's not good news and explains why her counts have been so consistently moving in the wrong direction. But it is confirmation that we made the right decision to go ahead with treatment now rather than try to wait longer. I'm not sure what all of the ramifications are of the bone marrow infiltration. I plan to read up on that tonight. John had 30% bone marrow infiltration prior to FCR and 20% after. If Marian's blood and lymph nodes return to normal after treatment, she will have another bone marrow biopsy to determine if she has achieved a complete remission.
As all CLL patients know, deciding when to proceed to treatment is a hard decision. You really don't know with absolute certainty that you couldn't possibly wait a little longer or vice versa. It's also possible to wait too long and let the disease get out of control. And every patient is different. We knew Marian was slightly anemic and her platelets have been declining gradually ever since diagnosis. She had reached the threshold for treatment. Dr. Flinn said there wasn't anything to be gained from waiting and she did need treatment, but it wasn't so urgent a situation that she couldn't put it off another month or so if she absolutely needed to. She decided that she wanted to get it over with and I agreed that was the right decision. But I still had the nagging question in the back of my mind ... Could she have waited a little longer?
When I got my copies of the bone marrow biopsy and saw 90% marrow involvement, I knew we had not rushed into treatment prematurely. It was definitely the right decision. That gives me peace of mind.
Based on today, I expect Marian to sail through all of this in classic Marian Howerton Kibler style. She is an amazingly resilient lady. She is positive and she is gracious ... in every way.
On the way home, Marian put her hand on my arm and said, "Thank you so much for everything you do for me. I don't feel like I thank you enough." I told her, "Yes, you do. You thank me all the time. I feel very appreciated - not only by you, but by the whole family." And I do. It is truly a joy and a privilege to be in a caregiving role where there is so much love and appreciation.
One day I will probably wind up needing a caregiver myself (if I live long enough). I hope when that time comes that I will be as thankful, gracious and low-maintenance as my lovely mother-in-law, Marian, is.