Hope, Advanced Cancer Style

I'm sitting in my study, alone (and awake) in the house for the first time since the end of May. The real "junebugs" are children, clamoring for crafts, experiments, trips to the pool, dessert. Don't get me wrong -  I love the way their hair smells after a day spent in the sun, and I love riding bikes around our neighborhood and taking walks to the coffeeshop. I love hanging out watching "Friends" with my daughter, and reading books at night with my son. 

But it doesn't make for much alone time. And the solitude I have goes by so quickly that I haven't really gotten much done. After binging on apocalyptic sounding media reports for days and weeks on end, I finally convinced myself to set them aside for the weekend. To let my soul fill up with sun, and hope, and possibility. And it was a wonderful respite. I read a book about bees and another  book about a hermit, and I watched the entire first season of A Handmaid's Tale! All restful things. All thoughtful endeavors. But I haven't done much writing. I don't know why. Maybe there's just not a lot to tell you right now.

And that's good! Life is...unremarkable. I've gotten used to the ups and downs of this treatment regimen - after infusions, I fall asleep and basically stay that way for 2 days, with super low oxygen levels (80% this time around without O2). Even when I feel lonely and wander down to the main floor of our house to be with my family, I still can't stay awake. It's like Sleeping Beauty syndrome. And then all of a sudden, I wake up on the third day after treatment and I can breathe again and I take a shower and as the day passes, I feel more energetic rather than less so. And I start wearing my smartwatch again and counting my steps and my exercise and all of that good stuff. And I force my kids to learn things in the mornings (I always liked playing school, even as a little kid) and we have fun in the afternoons. The weather here has been, mostly, hot and sunny. I've managed to keep the little gardenia tree I bought at the grocery store alive. I repotted my favorite succulents, which had outgrown their homes. I admired the dirtiness of my hands afterwards, because I am not a back to the land kind of girl. I'm a "let's sit on the patio and look at the flowers someone else grew while we drink wine" kind of girl. But it's good. Unremarkable is good. 

It's strange, though. I was talking to a fellow Stage IV colon cancer patient yesterday. We've never met in real life, but we have enough in common and we make each other laugh enough that I think it's okay to say we're friends. Anyway. We were talking about hope. Hope can be so unexpected, and, at this stage, sort of difficult to figure out how to reckon with. My last scans showed no growth. That's great! That's hopeful. This medicine may work for a long, long time...but then again, maybe it won't. So I live my life in 8 week increments, wondering how much I should hold on to hope. I've never been convinced I was about to die (although I probably should have been, in retrospect, several times!). But hope...the longer I live with this disease, the more slippery it gets. My medical team has outwitted the disease so far. But will that track record continue? Is even mentioning it somehow jinxing myself (say what you will about superstition - I've been living within superstitious parameters since I was a very young kid; it was the only way to keep my anxiety from taking over my life)? Should I make plans for Christmas? For next year? For three years from now? I just don't know. Trying to figure that out everyday wears you out. It's all so precarious and subject to change at any moment. Things are unremarkable...except I had this weird pain in my side yesterday (new lesion?). Things seem fine...but my heart was racing the other day and I don't know why (allergic reaction?). I'm overjoyed that my daughter is starting middle school and my son, third grade (but should I count on being here for his 5th grade 'continuation'? For her 8th grade graduation?). So. Hope. Advanced stage cancer patient hope. It's a curious thing, and not always the thing with feathers. 

Even when things are unremarkable, they're still complicated. I remember the first sort of mental break I had after my April 2013 diagnosis. It was January of 2014. I was declared NED on Dec 27. Life could begin again (it didn't last, though - NED was over Feb 7th)! But I fell into a deep depression and state of anxiety. It was the first time I'd had the chance to stop and consider all that I had been through over the past 9 months. It was the first time I'd been able to take a deep breath and look around, and I found myself feeling pretty sick and more than a little broken. All of a sudden, I had great news - and no idea how to process that news. I was afraid. Afraid to hope. And (always, of course) afraid not to hope, too. 

These last few weeks have felt a little like that. I'm not NED, and I don't think that's likely anytime soon. I'm still "currently incurable." But I've had a significant break from chemo. My hair is finally back - not long yet, but no longer short and alien to my own view of myself. I can walk around in the sun (not allowed on my last chemo regimen) and I have been working hard to gain back strength, flexibility, and aerobic fitness. I've counted my blessings, and continue to do so, many many times. I can't tell you how wonderful it feels, this respite from chemo. Even if I have to go back to chemo eventually, I really needed a break, and the scary part is that I didn't even know that, until it was (mostly) out of my system. Over the past few years, I've operated at a pretty low level, intellectually and emotionally and spiritually and physically, from where I'd been before cancer came. And I didn't even know that until now.  So I'm a little shocked at myself, and where I am - and where I was. And shocked at the world!  I've been so sick, I've been so tired, I've lost my job (and hence, my career), I've had major health problems associated with treatments...and the world has continued on its merry way without me! That's a humbling realization. (But, in some ways, a very hopeful one, too. Complicated, right?)