Leukemia Research Foundation News

CLL: A daughter’s perspective

This story was written by Lizzy, whose mother, Amy, is a Chronic Lymphocytic Leukemia (CLL) patient.

My cancer journey started earlier than everyone else’s in my family. I was the first person to know, as mom and I were in the car on the way to work when the doctor called and told mom she likely had Chronic Lymphocytic Leukemia, CLL. First, I had to not break down, hold it together, and just breathe (my mom’s favorite saying, and even tattooed on her left arm along with an arrow to keep moving forward). There was nothing else to do in that moment.

As soon as I got home, I did a web search (pro tip: don’t doom search, it’s not good…. web searching=scary); but don’t assume the research on the web or in search engines is the end all be all. The best advice I can give is to wait until you have answers from a doctor to learn what the plan of care will be. Secondly, find support for yourself. It was important to me to find someone to talk to about my mom’s cancer, my feelings and thoughts, someone I could lean on when needed.

Watch and wait

If you are new to this diagnosis, or have someone going through it, there is a lot of waiting. In fact, the first phase in treatment for my mom was to “watch and wait”; at first, we didn’t know if it would be watching for months or possibly years; we just didn’t know. That was hard!

Mom goes every three months to have her blood levels checked and also routinely gets liver/ kidney checks. Appointment days are the most stressful days for loved ones, and likely for my mom too. That is when we find out mom’s white blood count levels, and if her red blood cells look stable, as well as other lab tests results.

For me, it is important to find something other than the appointment to focus on. I try to go out that day and do something. I also schedule my own therapy session around that day, too. I do this because if it’s still a “watch and wait” situation, we can move on, but if something has changed, I want to be able to talk about it. I try to be supportive of whatever the outcome is and voice any of my concerns calmly to my mom. If we were to find out that my mom had to start treatment, I’d be informed and try not to panic. It’s a little scary, and treatment will be a change for her and for me…but when that time comes it’s the best thing for her at the time. Take time to process all the information by yourself, with a friend, or a counselor, and be prepared for a “new normal.”

We have been very fortunate that leukemia hasn’t affected our lives too much yet. Do I worry constantly? Yes! Do I question if something is leukemia related before anything else? Absolutely! In my mom’s case, we don’t know if some things are leukemia related or if she’s just getting a little older. Do I think I will see more of a change as we get out of the “watch and wait” phase? Yes, but for now, we are waiting. The numbers will change, and they will start treatment. Remember, it is the “watch and wait” phase, not the “wait, it’s going away” phase!

Getting comfortable with the uncomfortable

In my running group we say, “You must get comfortable with the uncomfortable,” meaning that even though you may want to stop because you are sore, tired, and uncomfortable, you keep going. For the cancer community, I think it means the whole process is unconformable, but it’s the “new normal”. My motto is, you can’t effectively take care of yourself or anyone else without taking care of yourself. So, one last time be a support to the person with cancer but make sure you are getting the support you need too!

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