This time last year, we had a cancer scare in our family. My mom had some routine testing, which revealed some unusual cells. Further testing revealed that she had uterine cancer.
I can remember the day I went to her house after work, to pick up my toddler – and she did the whole “Do you have a minute to talk?… Now, don’t get upset, But….” intro. That’s always a great lead-in for bad news. By that point, she had already scheduled a complete hysterectomy and seen the surgeon. She just hadn’t wanted to tell me because she didn’t want me to worry. I found this INCREDIBLY ironic coming from my mom, who has mastered the fine art of worrying. Her worry could turn coal into diamonds! But since she lost her own mom to cancer when she was only 23, I can imagine what painful memories and wistful worries this diagnosis stirred up. And being that she is the best mom in the whole entire universe, of course she didn’t want ME to worry.
Later that day, I was telling a close friend about the diagnosis and the plan. There would be surgery the following week – with complete removal of uterus and ovaries. There was cause for great hope, the diagnosis being so early, that surgery would eradicate the cancer. “But what if it doesn’t?” he asked. “What is the next step?”
“I haven’t thought that far ahead.. I’m just focusing on the surgery”, I replied. “That’s right. With Caitlin’s disease, you’ve probably become used to not pondering the deeper implications…”. What’s that? He went on to explain that I hadn’t started thinking about potential chemo and radiation for my mom yet, because I’ve become so accustomed to dealing with one day at a time. It’s a survival mechanism – an adaptation that has evolved over 11 years of having a child with a chronic illness. So true.
I used to call these the “What ifs”, but my friend Laura, another JA mom, more appropriately labeled them Fear Fantasies. You know what these are. You’re laying in bed, trying to sleep… and the bear starts to wake from his hibernation. Fear. And you wave big chunks of dinner under his nose, until he’s awake, and eating, and getting stronger… and you can almost never get him back to sleep. You start thinking…
What if my child never gets better? What if this medicine really does cause lymphoma? What if that red patch of skin on her arms is the start of melanoma… because TNF blockers can increase the chances of skin cancers? Why can’t I get her to gain weight? Will she ever be back on the normal growth chart again? Will she ever be able to play a sport or cheer or (insert desire here) ? What if the insurance doesn’t approve that new medication? What if my other children get JA? What if her eyes become involved? What if I have to home school her because she can’t make it to school anymore? How can I help her deal with anxiety… what if she becomes suicidal? What if something happens to me… who will take care of them? What if she needs hip replacement? What if the hip replacement fails? What if she has problems getting a job because of JA? Will she be able to have kids of her own, or is this medicine hurting her fertility? Will her future spouse be loving and supportive… what if he’s not? Will her own kids have an auto-immune disease?
What if she never gets better? What if, what if, what if?
You could pretty much spend all night planning out the future in negative potential scenarios. It’s endless. And not productive. It only serves to rob you of your peace of mind, your sleep, and your rational ability to make educated, difficult decisions – which you are required to do all of the time, especially if your child is chronically ill.
Fear. I’ve become very adept at putting that bear right back to sleep when he starts to stir.
That’s not to say that I don’t spend time becoming educated about possibilities. Before we start a new medication – I spend a great deal of time researching potential side effects. I’m very familiar with what the long-term implications of this disease are. Every decision gets appropriate, lengthy consideration. And I certainly am one for preparing for a worst case scenario… And of course, naturally, I have done my share of worrying. But it never made a medication work. It never made the test results better. And it didn’t stop her from needing surgery.
It’s hard to describe the redirection that takes place in my head when I start to feed the Fear. It’s like I just slap my brain from one side to the other, give myself a little “not gonna go there” and move on in another direction. Just keep focusing on the goal and moving towards it. I can’t feed the Fear. I can’t spend a lot of time second guessing and playing the What If game. If I did, I would either be paralyzed in place, or moving backwards. If the worrying could prevent the bad things from happening… then we’d all be golden! But it can’t. I love this quote from Michael J Fox on the topic..
“Don’t spend a lot of time imagining worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice.”
As it turns out, last year, it was OK that I had not pondered the deeper implications. After the surgery, the doctor came out and showed up pictures of my mom’s uterus and ovaries on his I-phone. (I’m not kidding.) And there were no visible signs of tumors or cancerous growth. The pathology results would later confirm what he told us that day… he got all of the cancer out. There was no need for additional treatment. My mom was OK. She left the hospital that night (again… not kidding) and she was back on her feet a couple of days later. We didn’t even give that stupid bear a single sunflower seed!
How do you avoid feeding the fears?