In August 2016, I celebrated seven years of being cancer-free.
Seven years is a lifetime. And it was just yesterday.
I was only thirty years old at the time, juggling life as working mom of a toddler and infant. And, oh yeah, training for the Boston Marathon during the in-between.
I had exactly two options at the time. I could crawl into a corner and die. Or I could continue moving forward with life. I chose the later.
During that time, I chronicled my Cancer Marathon through a series of Facebook posts. I will be re-sharing a few of these posts this month. I hope they encourage you, no matter the difficulty of the life race you are currently running. You never know what you are capable of until you try.
. . .
Last mile I spoke of the moments of brilliance that occur during a race. Those moments are truly amazing. However, anyone who calls themselves a runner knows quite well they are often accompanied by periods of darkness.
Dark moments can happen anytime during a race and creep up without warning. One moment you are merrily running along and then – BAM! Your legs become unresponsive, your feet seem to be made of concrete, you shoulders ache, your arms tighten up and what once was easy is now hard.
Self-doubt creeps in. I’m thirsty. I’m tired. I didn’t train enough. I over trained. The weather sucks. The guy next to me breathes too loud. I feel a blister coming on. My shorts are chafing. I’ll never be able to keep this pace. I’ll just slow down a bit right now and make up for it in a mile or two. They mismeasured the course because that last mile was way too long. I hate this course. I hate running. I can’t do it.
And as predicted, a period of darkness crept up on me as I was still basking in the glow of mile 5 of my Cancer Marathon.
I was tired of constantly catching every little virus that showed it face within a 10-mile radius of me. I was tired of the endless coughing and the raw throat it produced. I was tired of not being able to feel my fingertips.
I was especially tired of hopping around on crutches. When I was a kid, I always thought being on crutches would be super cool. I remember in school when kids would sprain their ankle and require crutches they got all kinds of special treatment. Things like being allowed to be late for class and having a specially designated person to carry their lunch tray.
Being immobile as an adolescent may be fun, but let me tell you being on crutches as an adult is pretty much the opposite of super cool.
It’s frustrating not even to be able to carry your cereal bowl to the sink. After becoming agitated about my inability to complete the simplest of tasks, one day I developed a little system to move my empty bowl to its rightful place without assistance.
First I transfer the bowl from the kitchen table to the island, which is within arm’s reach, about 3 feet away. I then take two hops one my one good leg to position myself between the island and the sink. This is a little farther stretch, so I have to hoist myself halfway up the counter to extend my reach. Once the bowl is in hand, I lower myself to the floor, pivot and place the bowl in the sink. Then it’s a double hop back to the table. Pretty involved procedure for a task that used to take mere seconds to complete.
Forget grocery shopping. Trying to navigate a super center on crutches is just asking for calloused armpits. And even if you did it, where would you place your items? You can’t carry anything with you when both your hands are occupied with the process of propelling your body.
So, for the most part, I avoid shopping altogether. There have been a few times when necessity has forced me to cross the supercenter threshold. My only option was those electric scooters the store provides. Like crutches, electric scooters look a lot cooler than they really are.
First, the stores never have the battery charged enough, so the thing chugs along at a snail’s pace. A quick in and out shopping trip for milk and bread turns into a two-week long expedition.
Second, they do not corner very well. If you want to make a turn, you have to start negotiating the bend a good 100 meters ahead of time. It took several head-on collisions with shelving units to learn this lesson.
Third, people give you dirty looks when you ride on them. Despite having my crutches with me, people would look at me suspiciously since I am young and thin. Like I don’t have better things to do then joyride around the store on an electric scooter.
(Sidenote: Have you noticed that electric scooters seem to be almost exclusively by the elderly and the obese? I understand the elderly, but wouldn’t it make sense for the overweight people actually to walk around the store to get some exercise? OK, not the most politically correct comment but I’m fed up with the all the 500-pound people stealing my scooters at Wal-mart).
The worst part about being on crutches is not able to care for Dominic and Porter. It’s just not feasible to parent a toddler and a baby while virtually immobile.
Since Porter is still a baby, he can’t get anywhere on his own. He needs to be carried to the changing table when his diaper is dirty. He needs to be carried to his highchair when he his hungry. He needs to be carried to his crib when he is tired. I can’t do any of that.
In typical toddler fashion, Dominic took total advantage of my vulnerability. One day he got in trouble for something (hitting his brother, sneaking chocolates from my secret stash, coloring on the wall with permanent marker – I forget what exactly, but it was along those lines.) So I raised my voice (ok, yelled) and told him to go to the time out corner.
Vince and I have studiously watched “SuperNanny” and consider ourselves seasoned pros at giving timeouts. Before the crutches, when we called for a time out Dominic would march over to the corner and sit down without too much fuss.
But he knew the rules of the game had changed since Mommy was immobile. He looked up at me, smirked, and said defiantly “No. I’m not going, and you can’t make me”.
Normally, I would follow SuperNanny’s rules: pick him up, carry him over to the time out corner and place him on the floor. But I couldn’t do that, and he knew it.
We stood there, facing off against each other for a good 30 seconds. He refused to budge, and I couldn’t force him. So I did what every resourceful mother would do (notice I didn’t say “good” mother), I started poking him with the end of my crutch. Like a rancher herding cattle, I prodded him across the living room and into the time out corner. He didn’t like it, but it worked.
Mommy 1. Dominic 0.
. . .
So between the continual sickness, the relentless coughing, neuropathy, and the inability to be a normal person and mother due to crutches, I was sick and tired of everything.
I went into my last chemo treatment pretty agitated about this whole stupid cancer thing. Per usual I met with my oncologist before the treatment. Since it was my last chemo treatment, we started discussing next steps i.e. radiation and post-treatment testing.
The radiation protocol was what I expected, and I’ll get into that next mile. The testing discussion, however, catapulted me into the darkness.
My doctor explained that bone lymphomas, like mine, are particularly tricky regarding testing because the bone regrowth will show up as activity on the PET scan. This activity can be difficult to distinguish from cancer activity. So long story short, I won’t get my final PET scan to determine if the cancer is gone for at least 4-6 weeks AFTER radiation is complete.
I’m a checklist kind of girl. I keep a detailed to-do list for both work and home and get deep satisfaction on checking things off of it daily. Because of this mentality, I’ve been dreaming of the day when I can check “Beat Cancer” off my list. So it bummed me out that it might not be for some time that I get a definitive answer on whether the cancer is gone or not.
That got me thinking, which is always a bad thing. You’re technically not cured of cancer until you’ve had five years of clean scans. My baby Porter will be in kindergarten before I can truly claim I am through with this whole cancer nonsense. That just seemed insurmountable.
So for a week or two, I was in that dark place. Unhappy. Discouraged. Angry. Wanting to quit the race and go home and eat ice cream on the couch.
But as often happen in a race, something happens to break you free of the chains of darkness. When it does, it’s like your whole body and mind opens up and screams “Running demons – You may have had me down, but I’m not out, there’s a race to run, and I’m going to do it.”
In my case, that something was getting off crutches. I may or may not have got off crutches a little early than prescribed by my orthopedist but we’ll keep that between us. Let’s just say, for reasons mentioned above; it’s not realistic to have a mommy of a toddler and infant on crutches for 12 weeks.
I had a little pain at first, but it quickly subsided. I think it was the muscles readjusting to bearing weight again. I had no problem doing a good bit of walking a few days after being freed from the walking sticks.
I feel like a new woman without those crutches. I can now go wherever I want whenever I want. I can carry my baby and care for my kids without assistance. I’ve visited my basement which I hadn’t done in two months. I don’t have to worry about landmines on the floor, also known as Hot Wheels cars and Little People. Stairs are my friend once again.
And most of all, it’s one less reminder that I have cancer. I’m closer to my old self now, and I like that.
In addition to being a total pain in the ass, the crutches were kind of signal to others that something was wrong with me. While I lost the hair on my head, I never lost my eyebrows or eyelashes. I also did not lose any weight (seriously, couldn’t I have gotten at least one positive benefit from cancer?!). So with a baseball cap on, I didn’t have the “cancer look”. I looked totally normal except the crutches.
I have had so many people notice my crutches and the scar on my knee and then stop to share with me how they too tore their ACL back in high school basketball, blah, blah, blah. Other times, people will stop me to ask how I sprained my ankle. They say it with a glimmer in their eye, and you can tell they are hoping for a funny story of how I did something silly to hurt it.
Sometimes I just let them drone on about their injuries or just respond that I have a “bone issue.” Other times, if the person is especially annoying or if I am in a bad mood, I tell them the truth. There’s nothing like saying “Actually, I didn’t trip over the cat or anything like that. I have bone cancer.” It kills the conversation immediately and makes the nosy stranger feel like a total ass.
Perhaps I have an evil streak, but sometimes I enjoy springing the truth on unwitting bystanders. But it still bothered me that I stood out in the first place, that I wasn’t normal.
Now that the crutches are gone, I’m one step closer to being back to being a regular person in my own eyes and the eyes of others.
On a related note, when I was at my last chemo treatment they had a therapy dog visit the patients receiving treatment. I’m not a dog person, but the dog was cute and well-behaved, so I relented and let it come into my room. I even petted it. When the dog and its handler left, I thought to myself, “Well, isn’t it nice they do that for all those sick people.”
It was probably 15 minutes later that I realized that the cute dog was there for me – I was one of those sick people. That’s how it’s been for me – a mental struggle between understanding I am sick and also wanting to get on with my life and be normal.
I’ll continue to grapple with that but for now, I’m glad I’m out of the darkness and back into the light.