September is national childhood cancer awareness month. It also happens to be the month my youngest daughter (third child) was diagnosed with cancer. She is my second cancer kid. Yeah that’s right, two of my kids (out of four) have been diagnosed with pediatric cancer.
I’m willing to bet every cancer mom knows the date she was told her child has cancer. I’m also willing to bet she felt like time stood still in that moment and she questioned what was happening. At least that is how it was for me. Cancer made my world stop. Not just stop, but halt and stop suddenly and hard. Pediatric cancer isn’t like adult cancer. There are no instructions to go to this test, go to that test, and we’ll get back to you with your results next week. Pediatric cancer is addressed with more urgency. Once a doctor thinks your kid has cancer or a tumor, you are sent immediately to meet oncology and your kid is admitted to the hospital that day. See, screeching halt.
Cancer, like many of my children’s diagnoses, stole things from my life with it’s arrival.
Ignorant Bliss
The first thing cancer stole was my ignorant bliss. It took that false sense of security that parents have thinking they are raising a healthy, appropriately developing child. Cancer just ripped the rug right out from under me to expose a cracked, unstable foundation. One day you think you’re doing OK, your child is a happy kid. Your kid appears to be healthy and then BAM—you learn cancer has been growing inside your child. And what happens after that cancer is exposed is even worse. You start to connect all the dots, all the cancer signs your child had that you brushed off as a symptom of something else. That fever a few months ago that you chalked up to a viral bug that must be going around. The changes in appetite that you thought was just a phase. Things you had brought up to your pediatrician, who also reassured you it was fairly common for a kid that age.
Don’t take that last part as a bash on pediatricians. Kids do funny things. Kids pick up germs everywhere. And most importantly the warning signs of pediatric cancer are all symptoms of other common childhood ailments. Your kid’s pediatrician is trained, and has the experience to tell him/her that whatever your warning signs, they were most likely related to something far more common than cancer. It’s the whole, if you hear hoof beats, think horses, not zebras.
Regardless, cancer stole the sense that all was right and normal in my world. After cancer, I was left with a motherhood filled with fears and doubts. Those fears and doubts, like grief, were strongest after diagnosis, but rear their ugly heads from time to time, and I’m never sure what or when those feelings will be triggered.
More Security
The first time it stole my ignorant bliss, but the second time it stole what little safety I thought I had regained. The second time one of my kids was sent to oncology wasn’t like the first. My world didn’t stop as suddenly as it did the first time. I had eight years between diagnoses and a few other pediatric medical issues on my plate. That second diagnosis came as less of a surprise. Not that I put together all the warning signs. I still had that 20/20 vision after having a confirmed diagnosis, but I was better at reading doctors’ reactions and had the luxury of time to do some research to figure out what could be happening to the youngest daughter. I won’t lie, when I found cancer as a potential cause, I immediately dismissed it because we’d already done that once. About a day later, after a lot of conversations with myself and my husband about why it couldn’t be cancer, I accepted that cancer was a good potential fit for the situation. I decided it was likely cancer just before the official referral to oncology was made.
But even without the sudden shock, cancer still took away a sense of security that I thought I had regained. I was at a point in my life where I felt like I finally knew what I was doing as a mom. I was at the point where I knew there wouldn’t be any more children, and it felt like everything was getting easier, simpler. And then cancer came back to remind me I can never forget it. I’m never safe. It always is lurking in the background, following my family to make sure I don’t forget about it. OK, it’s not really that personal or malicious, but it felt personal the second time.
The second time it took the safety and security that goes with surviving. As a family, we had been there. We were already part of that terrible club. We looked cancer in the eyes, declared not today, not my child. We came out victorious, our daughter was a survivor. I eventually had the sigh of relief that cancer was behind us. Cancer was a crazy footnote in an otherwise normal life. Or at least that is what it was until it wasn’t.
Give A Damn
I don’t remember how long ago it was, but there was a country song, “My Give A Damn’s Busted.” After cancer—after two cancers—I officially just don’t care about a lot of things. Things I once cared about, barely register. Things I should care about, I just don’t have the energy. I’m like a free-spirited hippie, floating through life, not caring about things.
Kids clothes don’t match, don’t care. Haven’t washed my hair in a week, don’t care. Left my house looking like I live in a tent, don’t care.
It’s not an all the time thing. And it’s not a depression thing. It’s more there are so many things that I now have to care about: fevers, signs of infection, medication schedules, water intake, food log, weight gain, that when I have an option not to care about something, I take it. As an added bonus, I’m comfortable with who I am, and I don’t really care what people think about me. Life is too short and too many things are too trivial for me to allot my attention its way. So if you see me at the grocery store with a stained shirt, a hole in my pants, and a messy bun that you aren’t sure isn’t one massive dreadlock, you can wonder how I let myself get here, or you can see me for what I am—a mom with a broken give a damn.
Patience with Others
Cancer took away a huge chunk of my patience for others. After the second cancer, my ability to take a step back from a situation and pause before responding took a BIG hit. You may have noticed from prior posts that this ability was one that has never been easy for me. But with practice, I was able to pause, and see a situation differently. Most notably, I would be able to justify others’ ill feelings toward things that never would have registered as a problem in my book. Like setting a broken arm with pins. I’m sure for some, that would be a big deal. For me, I don’t think I thought twice about it. I signed the consents, asked if my kid was required to stay overnight, or if I could just take her home afterward. Pinning a bone back in place seemed so routine, so low risk, that it never occurred to me to be upset about it. After I let a surgeon remove one of my kid’s organs, an essential organ at that, temporary metal spikes just seemed like a minor detail.
Now I don’t know if it’s entirely cancer’s fault that my patience has become extremely thin. I know COVID-19 plays into this too. Maybe it’s the combination of the two. But when it comes to people expressing their mourning of a life once lived, their own sense of normal—something I know in my mind is completely needed—I just can’t see it through my blind rage. I’m easily set off when it seems people can’t just hitch up their big girl pants, wade through the shit, and put their lives on hold until they are told otherwise. Because that is how I approached cancer (and all the other pediatric health issues thrown my way). I heard the news. I took a minute. I took a breath. I didn’t cry. I put on my big girl pants and asked what do we do now. I willingly, without hesitation, put my entire life on hold until the situation was over. I did it every time. I would, and likely will, do it again. I don’t know that it’s healthy, but that is what I do. I take everything head on, and figure out how to wade through the shit storm that is happening in my life, the one that came on without any warning.
So was it cancer that stole my patience? Or was it more like cancer (or maybe COVID) gave me rage? Maybe I was always this way, and cancer just amplified my normal traits. Whatever the reason, I’m not who I was before cancer and I don’t know if I’ll ever be that person again. Thanks, cancer.
Leslie,
You are way to hard on yourself. You have every right to have less patience and feel rage. I don’t know many families who could cope and deal with all the medical issues you all have had as well as “normal” life stressors. I know COVID has caused lots of stress on all families. You and Bryan are doing a great job! Virginia and Dex seemed to be well adjusted little people who love their little brother and sister. And, to add another stressor, you had to deal with the loss of your Dad. I wish I could do something to help you. Please reach out to me if there is anything I can do. I am pretty much at home. If I am available, I would be glad to help out.
Hang in there!
Love,
Carol
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