Give Me Some Consistency, Please!

Do you know that feeling when someone tells you they are going to do something, but they don’t do it? Or what about feeling very excited to do something, and someone who has committed to doing it with you shows up and is just not excited like you are? The disappointment is real! And while living with hairy cell leukemia, I have often had these feelings toward myself.

Cannot remember life before blood cancer

It’s been such a long time since I received my first blood cancer diagnosis that it’s difficult to remember exactly what life was like before it. But as far as my health was concerned, every day was pretty much the same. I might catch a cold or experience a bout of the flu, but I could count on getting past those things pretty quickly without much worry, and they usually didn’t hold me back from any obligations. Life flowed at a pace I was always able to keep up with.

We all know where this story is going, and many know the feeling of getting a cancer diagnosis. Life changes in an instant. For me, even though the symptoms I was having should have been a forewarning, life flashed before my eyes and seemed to come to a halt, and I mentally hovered in what seemed to be an alternate universe.

I lived in that space for days, weeks, and even months as I came to grips with the changes that were inevitably happening around me and before me. Every day was different moving forward. And it felt like no two days were the same.

Letting people down as I adjusted to the diagnosis

I had teenagers at the time. I was hospitalized while awaiting diagnosis, and I had to miss a dinner for my son’s swim team. I had volunteered to make lasagna for the team, so I instead had someone go buy store bought lasagna, and a couple of the kids made negative comments toward my son not knowing what he and I were going through.

I had always been the mom who volunteered for everything, field trips, class parties, you name it, and I had always been dependable in those roles. The leukemia diagnosis seemed to strip away the expectation that people could count on me, and I lost trust in the dependable part of myself.

Not knowing what tomorrow would be bringing, I was hesitant to volunteer for events like this, because I didn’t want to let anyone down again, especially my kids.

Looking for patterns in my fatigue

When I went back to my physical therapy job after treatment, the fatigue was often debilitating. Thankfully my employer at the time let me ease into my return by scheduling me for shorter days initially. Working with people who often were in pain had sometimes previously caused some tired feelings, but after cancer treatment, the fatigue intensified dramatically.

While as a single mom I was grateful to have a job, I would come home on a Friday evening , immediately go to bed, and often sleep until the next morning needing an entire weekend of rest to catch up before the next work week started. But there were also days during the week when I felt a bit more energetic. I just couldn’t seem to find a pattern that I could count on.

Looking for confidence in myself

I realized that the biggest thing I missed about life from before receiving a blood cancer diagnosis was a feeling of consistency. I lost trust in scheduling anything in advance not knowing if my energy levels would comply with the activity. I lost confidence in the ability of my brain to be able to focus enough to maintain a conversation, especially in a group setting.

The lack of consistency in how I felt caused me to lose confidence in general. Some days felt like they flowed easily, and other days felt like I had to push myself both mentally and physically to make it through.

The good news in this story is that even though I have experienced treatment for 3 bouts with hairy cell leukemia, I have learned (and am still learning) to give myself grace with work and other commitments.

There are affirmations I repeat to myself mentally as my own personal pep talk when I catch my mind wanting to beat me down. When I am easy on myself, there’s less pressure to do things in a certain time or to be a certain way as I do them. 

I have learned to celebrate every small accomplishment instead of putting myself down when I don’t have energy for some of the big tasks  It makes the ups and downs of life with a blood cancer diagnosis feel more manageable. I can now rely on myself in new ways and respect what my body needs. And when I respect myself, it seems that others do too.