Feeling Your Way Forward: Thoughts For New Initiates

Years ago, when I first found myself in Cancer-land (motto: just like Candyland but the complete opposite in every fucking way!), my friend S, whom I've known since high school, became one of the people I thought of as my angels on earth: one of that sacred sect because even though we hadn't been close for years, she slipped in and, without a second thought, helped me pick myself up and dust myself off, all the while through her actions unconsciously nudging me to recognize that cancer, for all of its horrors, indisputably offers a chance for you to see the world of miracles and wonder.  Swipe the glassy surface of your life with a tear-stained finger and you find beneath you brilliant networks of convergence, knitted by love and humanity and the whole damn Universe. The nineteenth century naturalist John Burroughs once wrote, "Leap and the net shall appear." This idea had rattled around my brain for many years before cancer came; I have no idea how or when it ushered itself in -  and yet there it was, front and center, the answer to a riddle I didn't even know that I was asking during the fateful early days of my diagnosis. It doesn't matter why you came to leap, Burroughs seemed to say, and you'll discover what has been there to support you all along. I took - I take - great solace in that revelation. Warm discoveries such as these have been my friend on many nights when the chill and the numbing pain of illness chopped at my heels and my heart.  

But I digress. S received a cancer diagnosis of her own for Christmas.  Once I'd shaken off all enough of the disbelief and anger zipping through my brain - and out the ends of my fingers, naturally - that I felt she wouldn't have to listen to me try to deal with her diagnosis*, I contacted her.  She was somewhat dazed, but in decent spirits, and as we chatted, I offered a little bit of advice, made a few suggestions. It probably went in one ear and out the other, as most things are wont to do when life is over-full and the world is tilting crazily before you, but I hope that I struck the right tone and that I'd given her some clear-eyed hope. It got me thinking that perhaps some of you are reading this blog as newly minted members of one of the world's cruddiest clubs, or that you're reading it in order to understand and support a friend or loved one who has recently learned she's been picked, Panem style, to participate in a fight for her life. So I thought I'd jot down a few important things I learned when I was new to cancer, in hopes that it helps you on your way. 

There's really two sets of things I want to talk about: first, the ideas and actions to consider, and then, the gear to get that might help you cope better with various side effects, conditions, hospital visits, and so on. I'll cover the material goods in next week's post. This one's all about the brain. 

And that's the first thing, really: you have begin immediately to train your brain. When suddenly forced to face the terrifying and very real possibility of your own imminent demise, it helps to have nerves of steel, the steady hand, stone cold courage, big cajones. I had none of these in the spring of 2013. Furthermore, some humans are happy-go-lucky optimists by nature, and if you are, kudos to you, but I've always been more in the middle.  I just never knew if I was going to careen into a spate of gallows humor possibly followed by a deep spiral into utter despair, or if I would somehow find a way to climb up onto a cloud-scented pony and canter around with hearts in my eyes. I'm shifty like that (this is why I'm clearly a cat on the inside rather than a dog - we have a lot of discussions about this around our house...do you?). So, I had to start retraining the way I thought, and had to do it right away.  I began to start my day with just a minute-long meditation on all that I was grateful for. We instituted a "what are you thankful for today?" round robin at the dinner table every night, and no one was allowed to say they couldn't think of something. And I kept at this, keeping my thoughts away from the many dangerous rocks and shoals by deliberately setting out to sea in a little gratitude raft. At chemo infusions, I brought along a list of help our family had received and wrote thank you notes, reminding myself through project and pen that I had so much support and love. At the end of every doctor's appointment, I asked what good news I could take away with me, and if the doctor had no sensible response, I fired him and found myself a new one. Slowly, gratitude and focusing on the best case scenario became central to my everyday identity. In my heart of hearts, of course, I'm squinting at these comments and shaking my head. This all sounds like so much flotsam; the dark and scary dangers that surround me are never far away.  But I keep practicing and training, and in the end,  I usually make it through the day. And when I don't? Well, there's always an episode of "Friends" to watch and my comfy bed to climb into, and then I try again tomorrow.  

Please note that I did not say "positive thinking is the path to a cure," or anything like that.  That kind of gung-ho mind fluff doesn't work for me, and there's a certain tyranny in believing that positive thinking will make or break you, because it puts the onus of solving the difficulties of your disease so squarely on your shoulders, see? That's so unfair. One thing I've learned is that I have little personal control over cancer. I have an aggressive and thoughtful medical team that is working for my long-term survival. I try to eat well and enjoy life and respond quickly to changes in the course of my disease. I take my medicines and supplements religiously, and I seek to find spiritual and intellectual fulfillment. I live in the moment as much as I can, and work to let go of thoughts about the future, for my own peace of mind. But cancer is an unpredictable, ever-changing set of very difficult scientific and medical puzzles to try and solve.  I can visualize my spirit falcon pecking away at my existing lesions and diving down deep to snatch cancer cells out of my bloodstream all I want but all things considered, that's probably not going to be how I achieve long-term stability or remission. There is only so much you can blame yourself for without going crazy, in my opinion. So, training your brain to reach for the positive and the empowering will not make your cancer go away. Will it help you live longer? I don't know. But I DO know that it can help you find a more productive framework for coping with a terrible set of circumstances; it will change the quality of your life, each day of which is precious.  I highly recommend it. 

Secondly, it's time to get in touch with your beginner's mind - and accept the parameters of your existing expertise. In other words, both become a student of yourself and your disease while holding steady to the knowledge that no one knows your body as well as you do. No one.  For many cancer patients, especially those with early-onset disease like mine, we become patients because we personally recognized something was wrong with our bodies and persisted in our attempts to find out more, even when the medical community wrote off our complaints to any variety of minor illnesses or conditions. Remember that. When the medical team tries to inform you of what they will do next, stop them. Insist on being a partner in your care, not a bystander patiently waiting around. There are almost always multiple possibilities for treatment, and you deserve to know what they are and why your oncologist recommends the course of treatment that she does. You're allowed to get second opinions and talk to multiple specialists. Your own concerns and questions should be respected and addressed. You have the right to ask them to explain things to you in a way that you can understand, and NOT to be condescended to.  After my very first surgery, scheduled on the fly six days after my diagnosis, I awoke in the recovery room with a multitude of questions: how did it go? What are you doing? What are you giving me in that syringe? The nurse had the audacity to tell me to just close my eyes and relax, that I wouldn't remember anything she told me anyway. Well, guess what? The very next day, I made a very specific complaint about that interaction and made sure the nurse was informed that I remembered all of it. 

That's what I said to that damn nurse.
(With apologies to The Bloggess, whom you can visit by clicking on the picture.)

I'm an academic, so assuming I have intellectual rights and lecturing people even when emerging from under heavy anesthesia is kind of my gig, but I realize that it's not the automatic response for many, even most. As a whirlwind of information, much of it devastating, descends upon you during the initial staging and intervention period of your personal cancer crisis, it may seem easier to let the experts handle everything. I understand this inclination, especially for those of us who see medical practitioners as sages and savants (many of them are), who learned somehow that doctors should be telling you what's the matter and how they will fix things while you politely listen. Resist this temptation. It may take a few weeks to work through the first flush of info, but be as deliberate and intentional as you can. Remember that this is all new to you, but that you can learn about your condition, and knowledge is empowering! It's your body - frankly, it's your LIFE - these people are working to save. So your opinion and your input matters a hell of a lot.  Any good oncologist - not someone with a Google degree, mind you - will be happy to help explain things and talk with you about your options. An extraordinary one will call you from a park in Canada because you had a burning question and he couldn't get cell service at his in-laws' place. I hope you find the extraordinary ones, but good ones are excellent, and bad ones should be fired.  In addition, there exists a whole world of both online and real-life support systems and patient advocacy groups to help you learn how to help yourself! Three of my favorites are Imerman Angels, which helps people navigate the reality of any new cancer diagnosis (I've been a mentor for several years to those looking for one-on-one support); Fight CRC, which is an education, research and advocacy group for those living with colorectal cancer diagnoses (I've been a member of their RATS team for several years and participate in their annual Call on Congress event); and ColonTown, a virtual community for CRC patients, caregivers, and loved ones. (The pioneers of ColonTown are in the midst of launching PalTown, which will serve a wide variety of patient communities online!) 

The final piece of advice I have is a qualified one: accept help...within YOUR determined parameters.  I think of this as creating a little nest for yourself and your family, where you all feel comfortable and safe and able to accept assistance.  I wrote about this in a guest blog post last year for the Colon Cancer Prevention Project, but I'm introducing it here, as well, because I think its an important part of the larger project of creating a "new normal" for yourself and your family that will allow you to take care of the business of getting better while also feeling secure in the knowledge that you and your loved ones are cared for.  When cancer arrives at your front door, high-stake decisions often must be made quickly. At the same time, for me anyway, I wanted to be close to my family and protect my children. So, my husband and I worked together with our closest family and friends to create a space that would help us maximize our time together but also give us what we needed in order to focus on our new reality. I think of this now as our nest building period.  Although there was no shortage of medical experts around to navigate me through the medical repercussions of my diagnosis, there wasn’t really anyone to tell me how to keep the rest of my life manageable. Which was really ironic, because it was at that point, more than ever, that we wanted and needed to continue predictable routines and lavish a whole lot of love on our children. They also had to get to school with homework finished, lunches packed, in clean(ish) clothes. The dog needed feeding and exercise. At the same time, I had to arrange for surgery and we had doctors' appointments to attend. Medical paperwork was piling up. And - oh yeah! - we both had full-time careers, which for me meant coordinate handing over large portions of (at that moment) unfinished work, because I was a faculty member at a large university and it was one week before finals when I discovered my diagnosis. Also, our families lived all over the country but wanted to know what was happening and many checked in more than once a day. Friends near and far called, dropped by, sent gifts, and asked after my health. Meanwhile, my brain wasn’t functioning all that well.

So I did what only weeks before would have been unthinkable for me:  I began, reluctantly but importantly, to ask for help.  Being me, I wanted help, but I wanted control over that help, too.  Those who knew me best accepted that with the ultimate grace and aplomb. So we triaged needs and wishes.  I appointed my best friend as my communications director and we started a private Facebook page where either one of us could post updates, which helped cut down on the need to explain the newest developments over and over again via text or phone. I made a blanket decision to stop accepting phone calls altogether. I couldn’t handle talking to people; the love and concern in their voices had me breaking into tears at a moment’s notice, and I just didn't have the attention span to carry on a long conversation. Besides, we were ducking in and out of appointments, the kids were often around, and I was both super wired and really fucking tired. Written communication was my best friend. In that spirit, I asked the principal and teachers at the kids’ school to send us daily email updates on how the kids were doing; it was important to me that we had a lot of adult eyes on our little ones, keeping their emotional needs in mind. 

Altogether, this single set of communication decisions made my life much easier. Information flowed to those who wanted or needed it, and I didn't have to worry about leaving someone out of the loop. I was able to start concentrating on my diagnosis and treatment options. There were other sets of decisions - how to channel offers of food, rides, play dates, dog care.  My closest friends stepped up to streamline these outpourings of support.  Slowly but surely, our new nest took shape: built on a sturdy foundation of love and support from reliable loved ones, feathered with creature comforts and assistance when we needed it.  I felt weak at first, asking for assistance. But now I know that accepting help on my own terms allowed me to begin becoming strong. It eased my anxieties.  This approach has served me well in the months and years since, when I've experienced periods of recuperation, incantation, exhaustion, and more. 

So, you can't control your diagnosis. But you can control your reaction to it. Start training your mind, recognizing your new role as both student and expert, and build yourself a little nest. Life is crazy, I know, but isn't it always? You're not at the end of your story. You're just starting a new chapter of it.

I hope that helps. Next week, I'll share some of my most important comfort items, beauty products, and little tips that make infusion centers, marathon doctor's appointments, and hospital stays more bearable. You're not alone.

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