It’s been about a month since I wrote my first post about living with CML, “You’ll Be Alright”. It’s hard for me to write consistently due to a phenomenon known as “chemo brain”. In this last month a lot has changed and at the same time a lot hasn’t changed. Something that hasn’t changed is how good writing and sharing my story makes me feel, so here we go.
Some of the most memorable days of your life can happen without you even realizing it. Life can and will change without your permission. That’s just how it goes.
On February 14th of this year I went to my normal weekly hot yoga class. Towards the end of the flow I tried a move I’d never done before, double pigeon pose. I felt a pop in my knee and a jolt down my right leg. It stiffened up over night and I couldn’t put much pressure on it. I knew I had to get it checked out. I was bummed out to the max because I was supposed to go snowboarding up in Vermont the next week with my best friends. I was devastated and became angry for several days. “I shouldn’t have tried that pose, what was I thinking?!”. I got my knee checked out by an orthopedic who told me that snowboarding was definitely out. He sent me for an MRI around February 20th, I would get the results in about two weeks. I ignored the doctor’s advice and the pain in my knee and went boarding in Vermont. I just had to. I had been looking forward to that trip for so long, if I didn’t go out boarding with the guys, my life would suck. So I thought.
The next week on March 6th I went to get my MRI results. When I got the results my heart leapt because the doctor told me there was no structural damage, just a strained MCL. He continued on, telling me that the bone marrow in my knee looked abnormal. He wanted me to go see another specialist. I didn’t really think much of it until I got out into my car and googled the doctors he was referring me to. He wanted me to see an oncologist. “What’s that?” I thought. So I googled again. Cancer, he wanted me to see a cancer doctor. “Wait….. what? I don’t have cancer, I feel fine”. I called my mom immediately and told her what was going on. That was the first of many tearful conversations we would have over the next few days. From there I went to my primary doctor who sent me for blood work.
On March 7th I got the blood work done. That was one of the strangest days of my life. I went to work and did my normal thing but I kind of felt like I was watching myself go through the motions that day. My mind was not in my body, as one of the scariest words, cancer, was in my every thought. I honestly thought there was no chance I had cancer. “I think I would be able to tell if I had cancer” was one of my recurring thoughts that day.
So the next day, March 8th, I went into work, trying to keep things as normal as possible. I got a call from my primary doctor at about 10:15 am. The blood work revealed that my white blood cell count was 240,000, the normal range is 3,000-10,000, just a bit high. The next thing I knew I was being admitted to the hospital. I was told to “bring my slippers”, meaning I’d be there a while. A CT scan revealed my spleen was about the size of a football, normally about the size of a fist. I took my first round of chemo pills that night around 8 pm. The next morning brought the bone marrow biopsy. For those that don’t know, a bone marrow biopsy is when a huge needle is injected into your pelvic bone. A needle, into your bone. I was given heavy pain killers but I’m not sure I needed them, I was already numb. The biopsy confirmed that CML was the diagnosis.
Oh how quickly things change. In a three week span I went from thinking my life sucked because my knee hurt to thanking God that I hurt my knee. If I didn’t try double pigeon pose who knows how long my leukemia would have remained undetected. Time can change your perspective on just about anything. I would also like to add that I ripped powder in Vermont with a strained MCL and cancer, pretty bad-ass in my opinion.
Before I was diagnosed with leukemia it was pedal to the medal all the time. I worked 40 hours a week, studied CFP material 10 hours a week, worked out like a beast everyday and went out with friends multiple nights a week. I wanted to do it all. I really tried to get as much as I could out of each day. It felt good to be able to do all that. It was extremely satisfying, even though I didn’t realize it at the time.
Looking back on it I had been feeling bouts of extreme fatigue dating back to around July 2017 (diagnosed March 2018). I was getting more than enough sleep (6-10 hours a night) but no matter what I was just so incredibly tired all the time. I attributed it to my body getting used to waking up at 6 a.m to study CFP material before work. I rationalized away what my body was signaling to me. I thought “I can’t be tired, I got 8 hours of sleep last night, I just need to push through it” so that’s what I did for 9 months. And it would have been longer if I didn’t hurt my knee. I waited until after I was diagnosed with cancer to finally admit that I was fatigued all the time (forehead slap). I literally said to my doctor “now that you mention it, I have been really tired lately” while sitting in my hospital bed that first night. Yeah, ya think?! I think it’s mostly because I didn’t want to seem weak. I told myself that I was fine because I thought I had to be. I thought “You’re not tired. Just push past this. Be strong”.
We wear our tiredness as a badge in our society. If you’re not tired, then you must not be working hard enough. Sleep when you’re dead. The grind never stops. We’re all told to power through, regardless of how we feel. After all, our ego’s are at stake, as well as our sense of pride. It’s easy to trick ourselves into thinking we’re well rested. We’d rather drown ourselves in caffeine than admit that we’re tired. I did it for almost a year and maybe longer. This is the downside of mental toughness. I’m not saying that we shouldn’t all work as hard as we can and that if you’re tired all the time you have a malignant disease. No, I realize that my situation is more of the exception to the rule. But, it’s so easy to get caught up in this “grind” mentality. Where we’re in this constant state of “doing” and where “doing nothing” is unacceptable. Again, there’s nothing wrong with wanting to do as much as possible. But, please make sure you’re getting rest. It’s perfectly normal and healthy to rest and do nothing once in a while. And to take personal days to recuperate. I mean, we literally have to do nothing for about a quarter of each day, it’s called sleep. Doing nothing can also be a form of improvement. I didn’t want to listen to my body because I was scared of what it was saying. I know now that when your body speaks to you, LISTEN. If you feel “off” or not right for extended periods of time, don’t wait to check it out or tell someone. You’re not being weak, you’re doing the right thing.
I’ve realized that time management is actually energy management in disguise. We usually just align our energy levels with times during the day (sleep at night, be full of energy in the morning). One way we measure our energy is in time. Time is constant, you have 24 hours each day. Energy levels are variable. Time management requires a watch. Energy management requires the mental ability to accurately assess your energy level and then deploy what energy you have efficiently.
How do you make sure you’ll have enough energy for tomorrow? You get a good night’s sleep. Not so easy for us with cancer. The thing about cancer related fatigue is, a good night’s sleep doesn’t necessarily equal more energy in the morning. So I’ve had to adjust from time management to energy management.
We all wake up with a plan of how our days going to go. We subconsciously act under the assumption that we’ll have the physical capability to do what we plan. Well, cancer doesn’t care about your plans. Each morning, usually while fighting back the nausea from taking my pill, I assess how much energy I have for the day. That’s one thing I definitely took for granted. Not having to think “do I have enough energy to do this?” simply just, waking up and doing. Some days I can hit all the areas in my plan and some days I forfeit all together. I have to do what’s best for me, which means being able to determine what that actually means. Not as simple as it sounds. That’s just how it is. It’s little nuanced things like this that don’t get much attention but make the battle against cancer that much harder. Much of it happens under the surface, hidden in plain view.
There’s a preciseness to living with CML that is irritating at times. I have to take my pill at the exact same time every day. You get to choose initially what time you take it, but for the best outcome you have to take it at the exact same time each day. No wiggle room. My pill messes with my stomach most days, especially when I don’t eat before taking it. So each morning I have to wake up, eat and take my pill. It doesn’t seem like a big deal but there’s a good chance that I’ll be doing this routine for the rest of my days. The monotony is necessary and a small price to pay but it just irks me sometimes.
Picture bowling except the lane is only an inch bigger than the ball. That’s what living with CML feels like. There is very little room for error. And if an error does occur it could be the big one. So I’ve had to develop my own system of bumpers so to speak. On one side is resilience and on the other side is restraint. When the ball seems like it’s going into the gutter on the left (bad days) I need resilience to bump me back on track. And when the ball is swinging back to the right (good days) I need to practice restraint so I don’t over indulge. This is true for everyone, but is magnified in those that live with cancer. When your system is as fragile as mine one tiny mistake in either direction will cost you. So now before committing to do things I really have to ask “is this worth it?” or “what are the consequences” or “how will this most likely make me feel afterward?”
Every decision has consequences. Every decision needs to be made with my best interest in mind. Which is actually a lot harder than it seems. One of the harder parts of living with CML is restraining myself when I feel good. When I feel good I want to do it all. I want to workout, play 18 holes then go out and have a couple drinks with the guys at night. Or I want the satisfaction of working a full day at the office. I’ve gone all out before and paid the consequences. About a month ago my friends from college got married. Most of my best friends from college were there, what an awesome day it was. I let loose and had a few drinks and stayed up until the early morning. Man, it felt good to let loose and not care about the consequences. But I paid for it greatly. I was out of commission for the next 10 days. When I go through these bad stretches, it’s really bad. I’m talking like it takes all my strength to do basic daily tasks (bathe, eat, get out of bed, go for a walk, engage in conversation, mentally lock in). One night of not caring about the consequences led to days of massive pain.
I’ve had to curb the right tail of my life’s distribution curve. I try to limit the highs because that usually equates to limiting the lows. Which means I’m going to miss out on some stuff (shoulder shrug). At least I still get to be here, some aren’t so lucky. The experiences happen quickly but the lessons take a while to develop. It’s hard to comprehend what’s actually happening sometimes. The most valuable days, in terms of learning lessons, are the days when I feel worst. Unfortunately, writing on those days usually isn’t an option. I think we can all learn a lot about “how to live” by reflecting on our worst days. It’s uncomfortable, painful and depressing to look back and relive our toughest moments but that’s where opportunity is. I’ve done my share of frowning and being upset these last few months, with my Mom, Dad and brothers catching the brunt of it. By leaning on them and relying on unrelenting hope I’ve made it this far. And don’t plan on going anywhere anytime soon.
You know it’s funny, some people have told me how inspiring I’ve been these last few months. At first I thought “what’s so inspiring about laying on a couch or only working a handful of hours a week? How is napping 3 times a day inspiring to people?” I soon came to a realization. Inspiration lies in the crevasses of life. Inspiration is born from attitude, perspective and resilience. Inspiration is suffering with a smile.I go for my 6 month check-up in a couple weeks, fingers crossed for remission. If not, well, I’ll do my best to smile on.