Musings · Treatment

One Spoon at a Time (or why I sometimes look fine but feel awful)

I spoonam an impatient person.

Alright, those of you who know me in real life can stop laughing now. I know I’m stating the obvious, but the more this cancer thing lingers on, the more apparent it is to me that I am (1) incredibly stubborn and (2) incredibly impatient.

It’s been a little under 3 months since I went back to work, and I’m totally over this delicate flower routine. I’m tired of having to force myself to leave midway through the work day. I’m tired of having to use mediation to try and “center” myself so I don’t get myself worked up rather than my old tried and true method of throwing stuff (I have amazingly good aim for never playing any sports, and I now have an office where I can throw stuff out of frustration and not worry about hitting anyone). I am really, ESPECIALLY tired of using this freaking walker which just screams, “Hello! I’m disabled!”

I have to say, before I got sick, I had a totally incorrect image in my mind of what cancer patients look like, especially patients who are advanced in their disease. I like playing this super inappropriate game when I go to see Dr. V. It’s called “Guess the Cancer Patient.” Some people fit my mental image accurately – they look sickly and worn down, they don’t have hair, they can’t get around very well. Other people, well, I can’t tell who out of the two people sitting together are the cancer patient. I probably throw everyone for a loop, especially when I head over there directly from the office, still in work clothes.

But, here I am, and probably no one really knows what goes into me “looking normal.” It takes me a good hour to get ready in the mornings, at least, because I have knuckle-dragging fatigue. Dr. V described it as “walking through mud,” and that’s pretty accurate. When I’m finally able to push myself out of bed, I have to down my Cabo – since I can’t eat two hours before or one hour after taking it, it’s the best time logistically for me. I’ve never been a breakfast eater, but of course, the cruel twist of fate makes sure I’m starving, stomach growling and all, before my hour is up. I save the other litany of drugs for later in the day. I probably have to stop and sit for a few minutes at least 3 or 4 times before I finally am ready to leave, after drawing my eyebrows back on and putting approximately 3 layers of foundation on so I don’t look like Casper with no eyebrows to boot. Amazingly, I have pretty much stopped tweezing or waxing my brows because they are still there, but small and perfectly shaped – thank you, Cabo and cancer, for giving me the brows I used to have to pay for! But they too have changed color, so I look even more pale when I forget to use my brow pencil.

I can usually forget about how I feel by the time I get to work, which is good. Work is an amazing distraction for me. I can pretend to make all kinds of life or death decisions that are way more lighthearted and inconsequential than the actual life or death decisions I’ve been making since May. But, it still manages to creep its way in. I’ve been battling headaches off and on again over the past few weeks, not nearly as bad as the migraines I had pre-diagnosis, but they’re annoying nonetheless. Nausea has found its way back into my life too. I had developed this iron stomach after about a month or so of pain medications right before and after my surgery, and after weaning off the painkillers I thought I could just save my anti-nausea meds for a rainy day. Glad I did because it’s been raining a lot lately, and not just literally. It also pops up at the absolute worse times. The best example of this is when I was on my way to give a presentation to a new senior VP, and I had to run into the bathroom on the way to his office. Luckily I had allotted myself enough time to get sick, because I still managed to brush myself off, pop a Zofran, chew some gum, and make it into his office with a smile with a few minutes to spare.

You may be asking, “Why do you keep working when you have metastatic cancer?” That’s probably a reasonable question, but to me, unless I’m bedridden, I’m going to keep working. I sat at home for five and a half months, and while I enjoyed my time with the girls, I need to feel useful. I don’t feel useful at home. Plus, I actually do really enjoy my job and my career. I’ve worked really hard to get there. I’ve already sacrificed a lot to cancer. I can’t give myself up too.

You should probably also keep in mind I’m the one who was walking laps around ICU the day after my nephrectomy. The doctors and other cancer survivors told me before surgery that getting up and walking as quickly after surgery as you can is the best way to recover quickly. So when the ICU nurse came in the room the morning after and said, “OK, time to get up and walk!” I first thought, “You’ve got to be kidding me” (that’s the censored version of what I thought), and then begrudgingly realized she was right. So, I got up. With her on one side of me, my walker in front of me, and my husband pulling my menagerie of monitors and IV poles, I started walking. I was around the corner from my room when my liver surgeon rounded the corner, on his way to check on me. He was astonished and actually laughed because he was so amazed I was getting around already. When I get aggravated with myself now, I try and look back. I try to remind myself just how much pain and effort it took for me to just walk around the ICU ward at first. I try to remind myself that I’m still recovering and I’m going to get better, eventually.

Which is why I have to watch my spoons. There is this great story about people with chronic illnesses and how each person only has a certain allotment of spoons to get them through the day, and each activity or task takes away a spoon. I was going to link to the story here, but the author has it insanely copyrighted and the legal language on the website is enough to scare anyone away from copying or linking from the site. I can understand why she’s so protective, but I didn’t want to risk it, so if you’re interested in learning more, just Google it. Basically, I have to do a better job of balancing my life so I have enough spoons to get through the day. Unfortunately, I’ve always been terrible at work-life balance, or anything-life balance really, so I’m stubbornly learning the hard way. I essentially put a ton of energy into looking and acting normal during the day so by the time I get home, I look and feel like a zombie. I don’t even like taking my makeup off anymore because I look so washed out and up without it.

But I know I need to listen. My side effects have all been increasingly drastically, so I have been setting a timer and sticking to it so I leave work when my four hours are up. I am limiting my excursions out more than I used to. I am leaning more heavily on my amazing CNA that comes to help me out twice a week. And, I’m trying to go to sleep even when I don’t feel tired. Unfortunately, that is one of the hardest things for me to do as I’ve always been a night owl.

I have another follow-up with Dr. V tomorrow, and I have a feeling he’s going to tell me to stop being stubborn and take a week off the medication like he’s offered for me to do for a couple of months now. From what I can tell, most people either take a break or reduce their dosage so the toxicity can leave the bloodstream, thus lowering the side effects. I’m trying to be Super Patient over here. If I’m being honest though, I’m more scared than stubborn. I know Cabo has a 55-hour half life, which means it takes forever to leave your system, so I wouldn’t be going without the medication for long, but it just sounds terrifying to me. I already over-analyze every ache, pain, weird sensation that I get, because naturally, now everything in my mind is automatically another tumor and not a more likely and reasonable explanation. I thought getting the amazing results I did in December would quell my fears, but it seems like it hasn’t, like I won’t be satisfied until they say, “You’re NED (no evidence of disease)!” Even then, I imagine I’ll keep looking over my shoulder for the rest of my life, just waiting and worrying.

So, I guess I just have to accept it and let it be. Another thing I’m terrible at doing.

Cancer is definitively not for control freaks.

 

photo credit: e.c.johnson <a href=”http://www.flickr.com/photos/41916500@N07/32013596995″>67. Spoon</a> via <a href=”http://photopin.com”>photopin</a&gt; <a href=”https://creativecommons.org/licenses/by-nc/2.0/”>(license)</a&gt;

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6 thoughts on “One Spoon at a Time (or why I sometimes look fine but feel awful)

  1. I understand some of what you are going through. Everyone’s story is different. My daughter Emily is about to have her 7th brain surgery since last January. She explains her energy level in brain bucks. You only have so many to spend each day. being her mom, I feel like I am walking a tight rope. I am so happy when she has a good hour or a good minute. It is hard to know when to try to help and when to let her feel independent or in control. I think of you every day as we all press on, sweetly broken and waiting for healing.

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    1. I heard about your daughter, Mrs. Dixie. I can’t even imagine all that you both have gone through. I think what makes it hard for us as patients is we don’t always know when we want to be in control or when we want help. Being chronically ill just wears you down to mental exhaustion sometimes. I am continuing to pray for you and your sweet Emily.

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  2. Laura I understand how you are feeling and also about your fears. I am now 4 years from my last chemo. I have to have another ct in April and then back to see the Dr. I know I am going to totally beat this but whenever I feel bad or one of my lymph glands feels funny or hurts I always wonder is it back. But I do know one thing for sure…it will not take over my life. I have beat this and I will continue to fight it. I am so not ready to give up. Love you girl and keep up the good fight.

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    1. It is a delicate balance for sure. I read a quote from Stuart Scott from ESPN, and I’m paraphrasing here, but he said something about cancer robs you of the ability to look past today. It’s so true too. I hope your CT comes back with great results in April. Mine will be around then too, a little bit before in March. You’re an inspiration! Love you too!

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