Sunday, July 28, 2019

Cancer and Lymphedema: Two Year Update

In the span of one year, from August 2016 to July 2017, I was told I had three tumours in my left breast which led to three surgeries, which provoked lymphedema, and my dad died, and both my adult kids moved back home in the winter, one at the end of a five-year relationship, the other because of a profound mental breakdown that kept him in his room for months afterwards, possibly exacerbated by a family trip I insisted he attend and will forever regret. Both of them were far too forlorn to be able to help with snow shovelling or kitty litter or dishes. They were there for comforting, not to comfort.

I soldiered on through it all, tending to the housework and taking minimal time off work. After the first surgery, I was berated by an administrator, in front of my class, for the inadequate midterm report comments left by the LTO who replaced me, so I was back in the classroom after two days following the next surgery. Getting told was just one too many things to tolerate on top of everything else. Being considered incompetent after leaving copious notes and coming back early felt like an undeserved cruelty I couldn't adequately handle at the time.

That final surgery was to check if cancer had spread by removing all the lymph nodes in one armpit, which, if cells were present, would necessitate chemo and radiation. The results were negative, which was good news, but it meant a lifelong dance with lymphedema. It was a moment of "Hooray!! ... Oh SHIT!!" Once the tumours were out and the risk of spreading cut off, then cancer didn't have a marked effect me. But lymphedema continues to be annoying. Annoying is fine, though. Annoying is survivable.

My surgeon told me just to live my regular life without even thinking of arm swelling, to just deal with it as it happens. But that's nuts! The lymphedema specialist, having seen the worst cases, went in the opposite direction and warned against anything that could result in even a paper cut or ingrown hair. I told her, at a recent check up, that my GP said 'the further from the surgery without an incident of significant swelling, the better chances of never having one.' The specialist laughed: "Ha! I've seen a women come in thirty years after surgery with an arm doubled in girth from a tiny cat scratch. You can never let down your guard!!" Hilarious.

As always, somewhere in the middle of it all is the right path, or the livable path.

I started out wearing gloves for biking and cutting vegetables, but they were in the way during meal preps. I still wear gloves more now than I ever did, particularly when gardening, doing dishes, and working with wood, but I've discovered that I can still heal from a cut or blister. If I took every precaution to avoid swelling, then that would be the end of hiking, cycling, and construction, and my cats would be shipped off to less fragile caretakers. At first, I panicked a little at any sound of a mosquito and learned how to build a campfire with my left hand tucked up in my sleeve (a better solution than wearing mosquito netting around an open flame). Now, I carefully tend to every scratch or bite in the compromised quadrant: immediately washing and covering it with numbing Polysporin and a bandaid to prevent scratching it absentmindedly. It doesn't stop me from spending time tromping through the woods or snoozing with a cat that might knead my chest or back while I sleep. The bandaged bug bites on my infected arm disappear long before the neglected bites elsewhere. Who knew!! I've gained a reverence for the remarkable job our skin does to protect us, and I started taking better care of it all over.

I still take time every day to do my manual lymph massage. I'm also exercising more regularly than at any other time in my life, always with that ugly sleeve, and I sleep with my arm cushioned on a wall of pillows. Sometimes my arm aches, and an ice-pack in the armpit can help. I managed to drop and keep off the 15 pounds the doctors were concerned with, which is somewhat evident in fewer rolls on my lower back, despite some doubts in my ability to manage that. (I'm still rocking the scoliosis.)

At the end of that year of challenges, during a go-around of best experience in the last circle-up of a Wild Women expedition, one comment about my strength and courage to do the trip opened the floodgates, and then I wept and blubbered unfettered in the background of everyone else's final words and continued to grieve openly for about half the ride home just for good measure. I had steeled myself for the first surgery and added to my armour with every new battle that crossed my path. A moment of kindness was all that was necessary to melt the fortification down to a puddle.

There are so many videos and books out there about depression and trauma and abuse and all sorts of things that can happen to us and how we should be coping with it all. There's lots of good advice, I guess. But here's what I've seen, and my perception is way old school: Shit happens. You drag yourself to the other side of each day as best you can, ignore people standing in your way as much as possible to try to pay attention to bits of pleasure (or some relief from pain), and then, once the air clears a little and a tiny crack of light reaches in, you can let yourself feel how much it all really really sucks. Pity yourself for the pain endured, grieve the paths no longer open to you and your loved ones, laugh at the plans you might have made and expectations you had that are shot to hell, and then, like a good stoic, revel in gratitude for what you still have.

This is an unpopular position, but I'm not sure healing is something you can entirely choose to do or even work on despite all the 'how to' advice in the ether. Life decides when you're going to hit a wall, and life also decides when you'll get that little opening to pull yourself back through, up and out of the thick fog that settles over us when we need time to deal with it all. I believe that more time off work, waiting for it to happen, wouldn't have sped the process along. It happens when it happens.

During that time, I continued to go to parties, but I couldn't bring myself to enjoy them. I worried that I might have actually outgrown drinking and singing and dancing! And I wonder to what extent that fog muted pleasures but also dulled the pains enough to make it all tolerable. But when it lifted, then I was back at it. I could be delighted with life again. It hit me recently that that was depression. But, I don't think that matters, really. The label doesn't change anything. It didn't get me better care because of it, and the thought of it didn't help me manage any better than merely thinking I'm trudging through a craptastic time and have to keep on trudging until this part of the story eventually takes an upward swing. It's just another thing along the way for us to experience. And it's difficult to say the meds and therapy work, as much as I've seen that happen in others, when, without them, maybe it was just time that had an effect. This too shall pass. BUT I think it can be made worse by ignoring those cracks of light, those moments of openness that are rare opportunities to see beyond it all.

Why me?? Why not me!

But that's just me.


Owen Gray said...

Marie, you'll find advice everywhere. But you've obviously found your own path. And that's what makes you strong.

Marie Snyder said...

Thanks, Owen!