When the thumb of fear lifts, we are so alive. -- Mary Oliver

Handling Fear

Once, long ago, I had the TV on while I was cleaning my house, and a documentary came on about the Bataan Death March in WWII. I didn’t know anything about it, but I left it on because I was too busy to bother switching the channel.  As the name of the event implies, many died. The documentary featured interviews with survivors of the march.  This was back in the 1980s when these veterans were only in late middle age and able to remember and articulate their experiences fully.  One of them said that when he was newly captured and the march was beginning, he thought to himself, “Someone is going to live through this.  It might as well be me.”   It is popular these days to say that everything from a piece of chocolate to some trivial hack will “change your life.”  But hearing this did.  What he said burned itself into my brain.  I have used it in a couple of situations since then, and I used it when I got my diagnosis.  I throw it out here now in case it helps you, too.

I have a post card framed on my office wall that reads “Critical Thinking Equals Survival”. It has a picture of a pert, well-groomed woman staggering along with a blindfold on. It resonates with me because after a slow start in life as a goody two-shoes playing by all the rules, with every decade I’ve learned to question more and more things that I never thought to question before. Now, I flex that muscle every day. With cancer, this led to the gumption that surely helped me.

You have to use critical thinking when facing the whole medical industrial complex, and its subset, the cancer industrial complex. I’m glad those complexes were in place when I arrived at their doors with cancer, the same way I’m glad there were public schools in place in which I learned to read. I couldn’t build either from scratch when I needed them. But just as with school, you have to use those institutions as jumping off points and realize when and how you can take it from here.

I'll give one example. When I went in for my first chemotherapy treatment, my doctor and his physician’s assistant (P.A.) met with me for an hour before we started. I’d chosen Tuesdays for the duration of my regimen because, although they both rotated among several clinics, on Tuesdays they’d be at the clinic where I’d be having treatments. I felt very dependent on them for getting through this dreaded experience, whose reputation has preceded it, and how. I was scared shitless. But I felt safe with them there, watching me closely, getting to know me as I headed into the six rounds, three weeks apart.

So imagine my shock when I returned for my second treatment and found that my doctor was on vacation. OK. He has two kids and it was spring vacation for the schools and he’s entitled to a life. At least the P.A. would be there and she’d be my consistency. Only I was ushered in to meet some new P.A. that I’d never laid eyes on before. I asked where “my” P.A. was and was told she was in her office across the hall. Go get her, I said. I was incensed. Just what I hate about modern medicine, that it is so fragmented and no one seems to be following you as a patient and getting to really know you, was happening when I most needed it not to. I felt very insecure and, if possible, even more afraid than before.

But it turned out to be a healing crisis. I made an adjustment in my thinking and decided that my psychological survival, if not my physical survival, depended on not seeing my doctor or any of his proxies as Mommy. I could not afford to be threatened by their absence just because I wanted them there in every situation. I was part of the workforce in this effort. I and the right others could carry on and do just fine where we had to. And with that, as the cliché goes, I took back my own power. I knew in my bones, once I did it, that no one else held in his or her hand the key to whether or not I lived or died.

That realization was followed by the one that if I still thought I needed people who just plain got to see a whole lot of me, I’d have to find better candidates. I zeroed in on a nurse who worked for my doctor and made it a point to visit her each time I was in the house. She was full of experience and advice, was endlessly patient and generous with her time, and happens to be an angel who walks among us. I also got to know the chemo nurses who actually administer the treatment and they got to know me. This makes up for all the physician's assistants coming and going on my case.

Came the third treatment cycle and I arrived to find that they’d rescheduled my treatment for the following day and forgotten to call me. By now, I was getting used to these folks not being perfect. (None of us is, turns out.) I could forgive it. But I was also not about to wheel around and go home when I’d hauled my laptop, my comforter, my packed lunch, and my husband all the way there. I’d hydrated with extra water the day before, I’d done my affirmations that morning and I was wearing my Lucky Socks. Get me a chair, I demanded, and they did. (It helps that they pull your meds the day before a treatment, so they had them checked and waiting.) My doctor, by the way, was taking another vacation week. So, he missed two of my six treatments. But it didn’t unnerve me like before because I knew that I didn’t need to be tied to his apron strings in order for this to work. He was there for my last three rounds and got himself caught up. Very, very grateful as I am for what my doctor has done for me, the fear that I couldn’t live without him was just one of the fears that I needed to jettison.

One of the most helpful pieces of advice I was given was to turn your fear into curiosity. Another was to respect the thing but not to fear it. I will add to these that you can simply take a day (or a weekend) off. Lack of stress is good for you. If you can get all the way to peace, that’s best yet.

Fear can be overwhelming when you have cancer. But it doesn’t help you. At the school where I tutor kids in reading, when there is a big and difficult word, we tell the kids to chunk it out. Take the first part and use your phonics, take the next parts, sound them out, too. Then string all the parts back together.  Use not only phonics but whatever you know to get at the word.  Have we covered Latin connectives and do you see one here?  Is there an illustration on the page?  Has the content up to now given you any clues?   There’s no magic bullet and there are no guarantees, especially with a language like English. But the kids can use everything they’ve got and we’ll call that fair. Because when they're out there somewhere on their own, we hope that one of their strategies might work.  

If you have cancer, you chunk it out and get through this day and then this week and then this month.  You don’t have to do the whole big fear before you all at once. You can string the months together into a year.  You can string the years together into a decade.  And so on.  It’s actually a better way to live than the one I was taught that went go to the right school, marry the right person, buy a house, have kids, save for retirement.   I’ve done some of these things, but it wasn’t anything as simple as the instructions made it sound.  And none of them were the guarantees promised. The boxes on this list that I wasn't able to check were because I tried and "failed," and there didn't seem to be a lot of big fat simplistic advice for that scenario. In either case, these useless guidelines were just too big and vague to be taken on unchunked.

So if you have chemo tomorrow, drink your water today and get a good sleep. That's all you have to do.  If you are pulling out of your nadir, build back your white cells and stick to your knitting with that.  If your next round is coming up, you get through that by taking care of yourself and finding some peace and joy while you’re at it.  Don’t borrow fear about six months from now.  Don’t borrow fear about how many years you have.  Don’t borrow fear of what the aftermath of chemo will be even if you do live through this.  Do today.  And if the hard part of today is over, you are free to go and put down the fear.

Hot tip for alleviating fear:
Three acupuncture points in the ear called "shen men".
Find a practitioner and get them needled.
Works better than anything in a bottle.

Further reading:

Operating with Fear
Jeff Reiman, May 12, 2015

Photo credit my own.