What comes next?

I haven’t written in a while, mainly because I haven’t had much to say! I’ve had no real news or updates from a medical perspective and I’ve been spending the majority of my time resting and watching Netflix, so other than reviews on shows I haven’t had a whole lot to share!

Update on Appointment

We met with my oncologist and surgeon yesterday. From the physical exam things seem good, they could no longer feel the tumor, obviously exactly what we were hoping to hear. No definitive answers on a surgery date, sometime in February. Some discussion around what comes next left me with some unease. We didn’t get into specific next steps, as we’ll have to wait for the pathology report after surgery and the scan that follows before we start sketching out a path. Even then, my oncologist said there is no standard practice with this cancer, as it’s so rare, so we’ll be making it up a bit as we go. Both doctors talked a lot about moving into this next phase- and how difficult it can be mentally- especially with the type of cancer. Either treatment didn’t clear everything (and I quote) “we’re euchred”, or living with the unknown and figuring out how to pick up the pieces and start living my life again because, as my doctor said, no one can really tell me I’m in the clear. No one can tell me how I’m really doing today until five years from now if I’m still alive.

Update on how I’m feeling

For the last few months I’ve been struggling to get through an hour, a day, and a view of the future was blurred by the reality of the moment. Getting myself from my bed to the car to make it to London felt like an extraordinary feat. But now I’ve finally pulled myself out of the haze of treatment. Side effects from radiation and chemo are subsiding– I’m in no longer feeling any real pain (which I am SO grateful for) and nausea is intermittent and not constantly hanging over me. As of yesterday, my bloodwork was decent, white blood cells still low, but everything else OK. I’m up and out of bed after close to 2 months of basically being confined to my bedroom. I’m trying to get back to normal, attempting to take on simple tasks, but even stirring dinner literally exhausts my arm muscles. The stairs leave my body burning as if I just ran a marathon. My body has taken a beating. But the kids are no longer puzzled as to why Mommy is downstairs, so that’s a win. I’ve left the house a couple times in the last week and although tiring was great. I haven’t attempted driving yet, perhaps this week.

Every day I have a few Facebook memories pop up. For me, they’re a representation of the stages of my entire adult life. I see posts from a young single girl with my first real job, a bride-to-be stressing about invites, an excited and nervous mom to be, then a zombie, the ups and downs of baby and toddler, sometimes glossy shots from the highlight reel of a life I know I wasn’t really living. Layers of who I’ve been. Stages that were shaping, forming, railroading me. I wonder how this stage will change who I am in the long term (god willing) It’s hard to picture anything being normal again. It’s hard to imagine having a 3, 6, 9 month scans and so on constantly weighing on me (also known as “scnanxiety”) knowing how easily it will implode whatever normalcy we’ve built. The emotional turmoil it will send us all into. 

I left the appointment today happy that the tumor was not detected during the exam, but at the same time feeling a little bit sad and sorry for myself about the weight of the unknown. But a couple hours later I heard some tragic news about a family I grew up with. 25 years ago they lost 2 of their 3 sons in a freak accident. One of them was a very good friend. This week they lost their remaining son. I got home and hugged my kids and just feel so grateful that I have three healthy, amazing children and know that, (as much I HATE this hashtag) I am truly blessed. I know many people have shared that my story has helped them put things into perspective in their own lives, and that news definitely did the same for me.

2 Comments Add yours

  1. Brenda Read says:

    You are Truly Blessed and you will continue to heal….your testimonial will be an inspiration to the next mama who has this ugly, horrible diagnosis…I feel in my heart there will be a healing for you, and life will go on…not an easy road you have ahead but you have what it takes to continue on,,,Love you Jolene and see you soon!! ❤️❤️❤️

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  2. Chris Leys says:

    It is great to hear that things are improving and you are returning to some state of normalcy. It is also great to see your thoughts on moving forward. Your situation has brought clarity to you and all of us following your journey that no one is guaranteed tomorrow, we must cherish every moment and opportunity we are given! Continuing pushing forward and I truly hope each day is better than the day before it. Carpe Diem!! All my best to you and your family.

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