It was just over two years ago that I wrote my very first blog, sharing how my cancer journey started. Strangely it feels both longer and shorter than two years. So much has happened during that time. I have been sick and healthy…and sick and healthy again. I have been in the hospital, for a total of nearly 50 days. I have lost – and finally regrown – my hair. And most importantly, I have achieved REMISSION. I am giving this battle everything I have, but it has not been without its share of bumps in the road and hard choices.
And one of the hardest of those choices was when, six months ago, I made the heart-wrenching decision to heed the advice of my medical team and take time off of work to focus on myself and my health. This was so incredibly difficult for me because my career has always been a big part of my identity. It was at the core of who I am, like many women. I had always described myself as a full-time working wife and mom. THAT is who I am…or was.
But here’s the thing…it wasn’t working. I wasn’t prioritizing my health and I was getting sick. A LOT. In the year I was back at work, I was in the hospital THREE times. I was working at a highly-demanding job that I loved but still required a lot of me. I was always eager to do more and, as a result, was often asked to take on more responsibility. As I’ve written about before, I am a chronic people pleaser so I had difficulty saying no, often finding myself working longer hours than I should, toiling away during my treatment appointments and generally not adjusting my approach to work despite my diagnosis. It was like I wanted to pretend I didn’t have cancer – and that I could still do it all.
For the average person, stress is bad. But for a myeloma patient like me it is really, REALLY bad. According to the International Myeloma Foundation, “Stress can be a very destructive force when it comes to myeloma. Stress really disrupts the immune system and myeloma is a cancer of the immune system.” Research shows that stress can absolutely have an impact on many areas of our health, including and especially that of cancer patients. Simply put, when I was working, my commitment to my health was not working.
And now this decision is permanent – I will not be going back to work. I have been avoiding writing about this for weeks now, mostly because I haven’t really known what I wanted to say. And I’m sure in large part because I am in denial but also because I have been trying to figure out who I am now if I’m not a full-time working wife and mom?
The irony of all of this is that I am the healthiest I’ve been since my diagnosis but I believe – and the doctors believe – it is exactly because I am NOT working that I am doing so well. I tried for a year to balance my career, my family and my health – but something had to give. These past few months of staying home have shown that I can achieve – and most importantly MAINTAIN – remission when I give it 100% of my effort.
What I have now realized is that I still have a job – it is to be and stay healthy. Recently I was asked by a friend what I do for “self-care”. I considered answering by saying “I shower…most days” but figured she probably meant more than just BATHING MYSELF. And it struck me that I hadn’t really been doing any self-care. Of course I am under the care of a doctor as I am still in active treatment for my Multiple Myeloma, taking pills at home and going for treatment two out of every six weeks. But what else had I been doing besides cracking open my Days of the Week pill case each night and going to these required appointments? I had to admit the answer was very little.
So I have started to do more for ME. I am taking yoga classes, getting acupressure once a week, eating healthier and moving more (my new goal: 12,000 steps each day!) This is what helps me but self-care means different things to each of us. It could be a walk in the park, a phone call to a friend you haven’t spoken to in ages or writing in a journal (and for some of us it might be avoiding political posts on Facebook for a while to keep our sanity). The idea is to take time for YOU, which many of us seldom do especially women, and in my experience, NEVER moms. We are always so focused on our work, our spouses, our children that we are usually at the bottom of our own To Do list. But I have realized that taking care of myself isn’t just a nice thing to do every once in a while- it is actually critical to my health.
When I first left work someone told me I was “lucky”. I’m not sure that I would describe being diagnosed at 42 years old with a cancer that currently has no cure as “lucky”. I can only assume this person meant that I was lucky to be able to spend more time with my family, which I agree is pretty amazing. But I didn’t win the lottery or take early retirement – this is happening because I have a medical condition serious enough to justify me leaving work before my 45th birthday.
And while I do feel lucky to be with my husband and kids more NOW, I am playing the long game here. I want to be around to celebrate my 30th wedding anniversary. To half-heartedly complain with other parents about my baby going to high school at my first – and last – high school orientation meeting. Call me greedy but I’d even like to meet my grandchildren someday.
None of this changes the fact that I still miss doing work I love and making a difference. That I still wish there were days I had to get dressed up for work (though I must admit yoga pants are quite comfy, even if not a legitimate fashion choice….). That I don’t long just a teeny bit for those days when I was worrying about balancing it all.
That said, I have seen others in situations like mine have regrets. Who, like me, received a cancer diagnosis but didn’t truly change their lives. Our friend who had pancreatic cancer worked the full nine months from her diagnosis until her death without stopping. She was brave and dedicated and I hope I fight with half the grace she showed. But I also learned from her that life is short so something had to change for me and our family.
Here’s the good news, in case anyone was worried. I am still a highly imperfect mom. Some days I kill it. For example, last week the weather was beautiful. The kids happily played outside for hours (no devices), I pre-cut veggies they noshed on for snack (no cheese doodles or Oreos) and bedtime was a breeze, filled with much snuggling and even a few books. And…I didn’t yell ONCE. All day. Yeah, that’s right. ALL. DAMN. DAY.
And then…there was the next day. My daughter got off the bus crying over some perceived kindergarten slight. The veggies were all gone so they broke into the snack drawer almost immediately (hey, Oreos can be quite soothing when someone didn’t share their crayons with you!) They reached for devices almost the minute homework was over (probably before if I’m being honest but even I have some rules!). And that yelling streak? Lasted just that one day. Oh, and my older daughter informed me that “Daddy is the nice one”. Yup, some days I kill it. Other times, the days try to kill me.
I miss my job, my friends at work, but more than anything I miss my life BEFORE I had cancer. One of the hardest parts of all of this has actually been admitting that I couldn’t – or perhaps shouldn’t – do it all. It’s the kind of admission a Type A, people-pleasing workaholic like me NEVER considered making.
Some days I still feel a little guilty about being home, thinking I’m being “selfish” by taking care of myself. However one important lesson I’ve learned, if only very recently, is to stop thinking of it as being “selfish”, because a commitment to myself and my health is the best bet I have for ensuring I am here for a long, long time.
When I look in the mirror and wonder “who am I now?” I can no longer proudly call myself a “full-time working wife and mom”, a badge of honor I wore for a long time. I cannot gush about working at a company I loved for 17 years. But then I remember that throughout our lives we all have many roles to play. I will always be a wife, a mom, a daughter and daughter-in-law, a sister and sister-in-law. And now I have other roles I never imagined. Without this diagnosis I would never have been able to say I am a published writer (and by someone other than myself!). I can now add the label of successful fundraiser and cancer advocate, as I continue working to raise money for and awareness of Multiple Myeloma. And I confident now that even though this door has sadly closed, other windows surely will open.
This isn’t the path I planned but I’m slowly learning that’s okay. So maybe I am just the littlest bit lucky after all….
Until next time, #gameon
PS Click here to get some great ideas for self-care.