The New Normal/A Decade of Scans

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Hello 2020! I have not written an update in quite some time, so I decided to force myself to write while I have a little time to myself.

Going into this new year and new decade should feel exciting, but part of me feels some grief for the end of the last decade and the start of this one. This will be a decade of scans every 6 months, of wondering if my cancer is going to come back – and if it’s going to come back worse. Sarcoma likes to go to the lungs, so I’ll have MRIs on my leg and CT scans on my lungs for all of the 20s. If it doesn’t come back, then in the 30s I’ll be home free, but if it does…

It’s not something I like to think about but that creeps up on me when I least expect it. It comes to me in the silence of the night and when I’m alone, in the quiet few moments I have in the morning before the rush of mothering takes over. The grief for the normalcy I have lost, for the pain that I’ve been through, for the fact that more than anything I have faced the stark reality of my mortality. Not a day has gone by that I haven’t thought about my cancer; it doesn’t help that nearly four months out of my surgeries I am still not “back to normal.”

My leg muscles basically atrophied from lack of use for months and the process of getting them strong again is not going to be a quick one. I’ve been going to PT for three weeks now and I have noticed the improvement in my gait and my strength since starting but man, I have a LONG way to go. I still can’t run or jump properly and still struggle with going down the stairs. My walking has improved immensely and I’m trying to walk as much as possible to get that strength back, but I get tired quicker than I’d like. I have youth and determination on my side, but I have bone damage and a missing muscle working against me.

Less than two weeks ago I met with my plastic surgeon and my surgical oncologist to look at my healing and check up on me. I am officially discharged from plastic surgery! My plastic surgeon is a genius and one of my favorite people that I’ve had to work with during the past six months but I’m happy to never see him again. If for some reason the calf muscle that was rotated to my shin doesn’t relax in the next year, we may talk about a second surgery to cut out the nerves. It just feels really wrong – for lack of better verbiage – whenever I move that muscle. My cat scan and MRI are scheduled for February 24th – which means I’ll get to spend my birthday (the 25th) anxious for my results.

I’m what they consider NED – no evidence of disease. I’ll be cancer free if I make it through the next decade without sarcoma making another appearance…which it very well may, considering that it was high grade. So what does that mean for me? Do I stop living my life because my cancer might come back? No. Do I live in constant anxiety that it might? Also no. But it does mean allowing myself to crack my defenses a little bit every so often. It does mean that some days I feel that grief in my throat and that pit in my stomach. It means that some moments I do feel like it’s just a matter of time before this damn thing comes back with a vengeance. But I think that’s just…part of my life now. It is part of what this is. My new normal.

And part of that new normal is also figuring out what is healthy for me. I’ve been slowly but surely realizing that social media has drained me more than I expected and more than I’d care to admit. When I was stuck in bed or in my wheelchair it was a good way for me to occupy my time, but now, as it’s been some time without family staying in my house to help me, it’s becoming an extra thing on my to-do list. Social media is important to me for a lot of reasons – it’s a way for me to connect with others, it’s a way to update those around me and it’s a source of income. But social media is vicious and a lot of times I get caught up in “succeeding” – what my insights are, how often I post, feeling the need to post every day, etc. But I don’t want social media to be another thing controlling my life. I have a lot of collaborations and partnerships this month to get through but then we’ll see if it’s time for a well-earned break. All of my experience with cancer has made me recognize how fleeting time is, how quickly days and weeks and months go buy. I feel robbed of months of my children’s lives this year because of this situation – and I don’t want social media to do that too.

I don’t know what the new normal is going to look like for me, yet. I’m hoping that in the next few weeks I get some clarity about what’s best for my overall health.

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