Our Two Blood Cancer Family

Last updated: October 2022

In the early spring of 2014, I gradually began feeling inordinately bone-tired; the slightest exertion suddenly required a major effort. Just making dinner for two took every ounce of self-discipline, and I couldn't wait to get in bed and be oblivious by 9:30 every night. The day after Mother's Day, I went to my primary care doctor's office for a routine cardio test required by our insurance company – no big deal – and my sweet husband went with me and sat patiently in the waiting room so we could go to lunch afterward on a sort of little weekday date.

There to greet me at the door as I was finished on the treadmill and on my way out to meet Bill was my favorite nurse Elizabeth, and she told me that the doctor wanted to meet with both of us in a small examination room she was pointing to. There had been no appointment set for that, so we were a little surprised. The doctor came in with a sheaf of papers and sat down with a somber look on his face. After a minute he looked me squarely in the face and said, “In all my years of practice, I've never had to give this news to a patient.” He can be a bit of a joker sometimes, but there was no twinkle in his eyes this time, so I began to feel a little uneasy. “The lab called me early yesterday morning to tell me that your blood counts are off the charts, and it's almost certain that you have some kind of leukemia.”

Chronic myeloid leukemia

I alternately stared at him and Bill, who was sitting quietly nearby with a very worried look on his face, both of us wondering how in the world to respond. Unable to decide, I simply waited for the doctor to go on. “Look at these figures,” he said. “I've never seen anything like these,” and he explained a few of them to us. He also mentioned that he'd never had even a particularly diligent lab technician call him at his home and wake him up at 6:30 on a Sunday morning, either – and it was Mother's Day, to boot. The doc kept telling us how sorry he was and that he would pray for us, which would have been very comforting if we'd been able to make sense of it.

He told us one of his good friends was a top-notch oncologist, and he got up and called his office right then and told them he was going to send us over immediately. Driving over there, we were still in a fuzzy la-la-land, and you could have heard a pin drop in the car. A nurse took seven vials of blood and handed them off to someone in their in-house lab for testing. The oncologist came back in a very short time and said there was no doubt I had leukemia, and that it was a very rare kind called chronic myeloid leukemia. He tried to soften the blow by adding that statistics show that I'd be more likely to die with it than from it. We visited for a short time and made my next appointment with him for a few days. Despite the fact that it was now mid-afternoon, neither of us felt the least bit hungry, so we went straight home, trying to process our bizarre morning.

Telling my children

I had no idea how I was going to break this news to my seven adult children, but of course, it had to be done. I worked hard to find information online to print out to give them at a family meeting, held in a lovely public park not far away. They knew something was up, of course, so I asked them to sit around me as I stood behind a picnic table and related our experience that Monday. They knew I hadn't been feeling well, of course, but they were even more shocked than Bill and I had been. A couple of them gasped, and several of the girls began to cry softly. Immediately their brother put his sunglasses back on, not wanting us to see his own tears.

I had organized all the printouts and put them in cheerful-looking folders, but that didn't console them a bit. But they now possessed all the information I could find on CML, so they could read it as often as they wanted and know what to expect and what I'd be experiencing – and they could call me 24/7 for answers to any other questions they might have. I assured them that I would be fighting this devious demon with all my power, and by the time we all parted company, they had calmed down and hugged me and Bill and each other with all their hearts. They've all thanked me individually for having handled it that way. They were happy I didn't do it by email; they needed to be with me and each other to get that kind of news, and it was all more than worth all the time it took to prepare for it.

What are the odds?

I was very surprised to be given a second-line TKI right off the bat, but it worked fast and well and whipped my numbers into shape pretty fast. However, it sent me to the hospital on three different occasions with pleural effusions, and after the third one, the doctor switched me to another second-line TKI. That one also worked very well, but it also sent me to the hospital three more times, this time with acute pancreatitis. By then my numbers were really good, and instead of giving me a third medication, the doctor said let's watch and wait and see what happens. Lo, and behold, it didn't take long until we realized I had actually achieved full remission!

The freedom was glorious for the 3.5 years it lasted (which is longer than is typical, I've been told), and in that interim, my sweet husband Bill was astonishingly diagnosed with chronic lymphocytic leukemia; what are the odds? Of course, dread of the inevitable was ever lurking in the nether regions of our minds, and sure enough, my CML has recently relapsed, and I'll soon be back on treatment – this time on the first-line drug instead.

A two leukemia family

How my leukemia reacts to this one remains to be seen, obviously, and although I know it's not going to be fun, I no longer fear getting back into treatment, and honestly, I don't fear death, either, if that's how it all will end. Bill has plenty of his own ups and downs, too, and we meant that in-sickness-and-in-health thing, so we take care of each other. Sometimes we laugh about being a two-leukemia family, or being a couple of sick old sissies, or taking the easy way out and ordering pizza instead of making a meal. And sometimes we have a serious conversation about all the what-ifs, and we hug each other a lot. Our wills are ready, and in many ways, we feel ready ourselves. But for now, we are just so grateful to all the people who devoted themselves to developing these wonderful/awful medicines so that we can enjoy the privilege of hanging around to love life, and each other, a little bit longer.

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