Cancer treatment is a really crazy process. It’s not the same for everyone, because cancer types vary widely. There are lots of different breast cancers, and it seems that no two get the same treatment. Hormone positive cancers, HER 2 responsive cancers, ductal, globular. Then a cancer type also has a certain personality, defined by oncotype scores and ki-67 scores, and other scores I rely on my oncologist to pay attention to. Depending on type and personality and extent, treatments are recommended. When I learned I had cancer, and got an appointment with the (first) care team, I thought I'd show up at the appointment and the doctors would tell me what I had, and exactly how to treat it, and I'd walk out of that appointment with a clear plan and a list of next steps. I was disappointed to learn that’s not the case. The diagnosis and treatment is more like wading through a choose-your-own-adventure book, where each individual chapter/moment is met with one set of choices at the end of that chapter, and I’d have to pick one to move on to the next chapter. And each chapter takes more time than I’d ever expect— I bet no less than a month, and sometimes longer, before I'd arrive at the next choice point. Breast cancer treatment is simultaneously very standard, and also very individual.

So here I am, one year out from diagnosis, and 10 months out from when I started treatment, and it feels like I’ve arrived at THE HARD PART. 

Say again?

Yes, the hard part. In the beginning, I assumed chemotherapy and radiation would be the hard part. Isn’t that what we read about? See it in the movies? Where did we get that idea?

Nope. 

For me, NOW is the hard part. The hormone blocking therapies, applied before my body has fully healed from chemo and radiation, is the hard part. The ongoing chemistry experiment of finding the right combination of pharmaceuticals to dull the physical and emotional pain so that I can endure this part of the process, is the hard part. The chaos of the physical changes. The sheer volume of changes. The unpredictable, temporary, but potentially long term duration of these changes. This is the hard part. The clinical evidence suggests I need to be on the hormone blocking meds for 5 to 10 years (with a bunch of qualifying statements). “Oh…” I say and think, trying to comprehend that amount of time. That amount of pharmaceutical. What about all these drugs I’m taking to dull the MORASS of side effects that have their own side effects? How long do I have to be on those?

It depends, they say.

It depends on how long it takes for my body to adjust to the new reality, and when I can feel like I don’t need help with the side effects. This is where science cannot predict, but they will replace prediction with reporting the statistics, telling me the typical range of how long it has taken other patients like me, who have reported back so that there is something to measure. Care providers share other patients stories and observations of what they have seen. All this always qualified with “we don’t know for sure, but this is what we’ve seen or what we’ve clinically measured.”

As I write this, I am (very slowly) coming to terms with the reality that it will take me far longer to recover from all these treatments than I was prepared for. The doctors and nurses and informational pamphlets and guidebooks warned me. But I did not comprehend what their warnings meant. I did not fully understand. When the informational video showed former cancer patients reporting that it took months or in some cases two years to recover their energy levels, I was both aghast, and defiant. I was certain that those videos were for other patients, other kinds of people, not me.

I was wrong. 

Cancer treatment is totally doable, but it’s also kind of long and can be hard. It’s both predictable and highly variable. I’m one year out, and I’m still so very tired. I’m more tired now than during chemo. I fought that reality until this week. I was told this is normal, typical. Now I am coming to terms with it.

Now that I can sleep (it’s been a few months trying to find the right combination of drugs. supplements, routines, incantations, sacrifices to gods to get me to sleep), I find that I need lots of it. I get up, drink coffee, do one thing, and then I need a mid-morning nap. I get up from my nap, eat a snack, do something, and need a mid-afternoon snooze. I get up from my snooze, make dinner, and prepare for bed. I don’t know how long I’ll be on this rhythm— but admittedly, I haven’t allowed myself the rhythm. We’ve stayed busy with big life events. Family reunion, taking our oldest kid to college, parents’ milestone birthday celebrations and more extended family gatherings. I got sick during these events, and didn’t get the rest I needed to heal from treatment, let alone heal from being sick. I’m still not healed from either, and am just now trying to make the space to sleep when I need it. Which seems to be a lot.

It’s hard to be cancer-free, on the other side of treatments (we can see and measure), thinking I’m ready to move on and live more life, and finding that my body is not ready. It looks ready! It appears ready! It is not ready. That’s the rub. I look healthy, fit, fine. There are ways I feel healthy and fit. But I am not fine. And so, I learn what those former patients mean when they say “it took years for my energy to return.” Ah. I understand. I hope it doesn’t take years. It’s not a process I can rush. It’s one I’m learning needs to be addressed at a slower pace than I’m used to, a slower pace than I am (we are?) conditioned to. I feel culturally conditioned for immediacy, what with the internet returning answers to things in a split second, and text messages to connect on demand. With life on demand, turns out cancer recovery is not. It’s on a slower, analog pace. Snail mail from the 1700s pace. Sail across a sea in a wooden boat before we know what’s on the other side pace. 

Here’s some good news about the hard part. Now feels hard. And I want to live my life. I want to live all the things around me. The family and the friends and the garden and the creativity and the milestones. I want to visit with neighbors and go out to dinner and cheer the Seahawks. I want to tackle my backlog of crafts and find a way to volunteer in my community. I want to make Laugh Line a growing concern and write that book people keep suggesting I write. I am alive and rearin’ to live into it. This also means I do have energy and willingness to take on The Hard Part. I am now learning that it doesn’t need me to roll up my sleeves, but the gloves on, and hit the ring and fight. It needs me to curl up on the couch with one of the many books stacked around the house, and watch the day go by. Sleep. Rest. Reset.