The rest is still unwritten

My husband is possibly down to just two rounds of chemo left. At that point, he’s going to revisit with his oncologist—about whether or not he should continue at all.

This is ultimately good news. The reason his oncologist is even willing to consider it is because my husband has had such good results. All of his scans have shown no evidence of disease. His numbers on his blood tests (called CEA markers) have always been in the single digits, even when they first found his tumor. I’m in a couple of online cancer support groups and it’s not uncommon for people with the same stage of cancer to have CEA numbers in the hundreds or even thousands.

In the cases of people who don’t survive their cancer, the CEA numbers often remain high or spike back up, and many of these people don’t have a good response to chemo in the first place. It’s not as common to hear of people who respond well at first then stop doing so, though of course the nature of cancer is that it’s wily and it’s not uncommon for it to return eventually.

So this should all be a good thing, right? His first oncologist told him that he’d be on chemo for life. Even his new, much better oncologist said that he’d need to be on it for three years to make sure it didn’t come back. So why then am I now feeling so anxious about him potentially stopping chemo after only one year, when by all signs he’s doing well and it’s only the side effects of the chemo itself that are interfering with his quality of life?

I am generally a pretty hopeful person, especially in recent years now that I’m not surrounding myself with negative people. Deep down, I really do believe that whenever he stops chemo, the cancer’s not going to come back for a long time.

But—and this is a big but—the what-ifs sometimes make me so anxious that I feel like clawing off all my skin. We just lost Ruth Bader Ginsburg, who was a hero to me on the Supreme Court, because the cancers that she had fought for over 20 years finally won. For all that I’ve been reading stories of stage IV cancer survivors making it for 20 years or more past their diagnosis, there’s that little voice in the back of my head that steadily whispers like a drumbeat: 17 percent survival rate to five years. And we’re already more than a year into that 5-year period.

If the 5-year survival rate is a countdown rather than a statistical percentage, we only have a little over three years left.

In case you can’t tell, now is one of those times when the anxiety is winning, when it’s like a snake has wrapped itself around my throat and is cutting off my breath. I’m sure it’s the dual combination of Ginsburg’s death and the final countdown of these last two chemo treatments that are making me feel so anxious.

It feels like so much hangs in the balance and I can hardly stand the uncertainty. One thing that you may have noticed over the course of reading my posts here is that I don’t do well with uncertainty. I want my future to be predictable because I hate surprises. I want to control everything, especially the things that can’t be controlled.

At the same time, I have to remind myself that many of the most unpredictable surprises of my life have ended up bringing me the greatest joy in the end. Moving back here was the first and that was a hugely unpredictable and risky time. My husband’s new job was a surprise and felt very risky at first. And even the things that were crises of the unknown have still turned out okay.

My daughter was suicidally depressed from ages 16-18, starting shortly after we moved here. Rather than blaming myself for the move (though at the time, she certainly blamed me for the move) I mostly spent my nights in fear and fervent prayer that she would come out of it and be okay. And she was and she did. She came out as transgender a few years later and apologized for blaming me for the move, and now we’re fairly close. There just wasn’t a shortcut to get out of the rough patch any sooner.

This time, I no longer have the grounding of a belief system, at least not a religious one. I was never particularly good at playing the role of the devout, even at the peak of my efforts, but at least I had the crutch of praying to someone that I thought would answer my prayers. It’s hard to overstate the benefits of that kind of comfort.

At the same time, my faith in life itself and whatever I define as “God” (as unconventional as it may be) is stronger now. I have faith that this cancer isn’t going to be the end of my husband’s story, at least not yet. When the anxiety gets the best of me, it may momentarily feel like everything has to be resolved now. Like I have to pay off my debt now and move to the cool neighborhood my husband and I want to move to and reach my lofty goals of not only self-sufficiency but success right now because there might not be a chance later. Even though these are all goals that will take time to achieve and some of them can’t be rushed (such as moving, since that’s predicated on all the kids moving out first and they’re not ready yet), my anxiety makes me think I have to rush the process.

I have to get myself back into the mindset of believing that we have plenty of time and that we’re working toward those goals as best we can. When I look back over my adult life, especially the past six years since we moved back here, I see that everything I worried about eventually resolved itself given enough time.

My middle son, whom I’ve worried about since he graduated high school because he seemed kind of aimless, is now talking about going back to school in January if he can’t find a job first. Since he has limited work experience and we have the worst unemployment rate since the Great Depression, it seems likely that he’ll wind up enrolling in classes for computer programming, which was always his plan; he just talked about it as though it was at some time far off in the future. That’s just one example of something I’ve worried about that’s resolving itself in time. (That also gives you quite a bit of insight into my parenting philosophy, too: I don’t believe that you can really force your kids to do things on your timetable, at least not without negative repercussions.)

So now I have to adopt the same aggravated patience toward the rest of my life, including my husband’s health. Given enough time and patience, I really do trust that this will work itself out, too. He got the job he has now, which was a huge surprise, but a very good one for his career growth. My own career is similarly also really growing and thriving right now, too. At age 46, I have a lot of wisdom that only comes with age to remind myself that we’ve got this. As long as we stay focused, we’ve got time for one stage of life to move gradually into the next.

Everything really is always okay in the end, even at times when it’s terrifying and seems like you’re facing the worst-case scenarios. But with regard to my husband’s health, I trust his oncologist not to steer him wrong. I know they won’t just stop his chemo arbitrarily but it will be a well-considered decision. They would most likely schedule him for another surgery first so they could go in and make sure his lymph nodes are clear of cancer.

So yes, it’s scary to think of stopping the chemo. It’s scary to think about all the millions of what-ifs. But if there are a couple of things that I’ve learned, it’s that most of the scary what-ifs never come true. And even in the rare occasions when they do, I’m unbelievably strong and am more than enough to handle them. I am a strong badass fighter and so is my husband. We’re up to this next challenge.

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