Cancer for the New Initiate

Two of my very best friends, who have been there for me and my family throughout my cancer experience, no questions asked, discovered recently that their loved ones (one mom and one mom-in-law) have been diagnosed with breast cancer. Another very close personal friend - she knitted me Wonder Woman wristguards while I had half my liver removed, for Goodness sake - just learned that her father has a terminal cancer diagnosis. This, of course, is shitty news for all involved. 

It's gotten me thinking, though, about my own first crazy, overwhelming weeks after learning of my own cancer diagnosis and what was helpful to me and my family as we sought to come to terms with our new situation. So in the hopes of helping my dear friends - or anyone, really, finding themselves or their loved ones reeling from the devastating reality of cancer, I offer the following suggestions and resources. I hope they are of use to you, and if anyone out there in the virtual world ever wants more suggestions, please contact me!

First of all, everyone involved in the crisis - patient, partner, friends and colleagues, should check out this powerful image and article and follow it religiously:

The Ring Theory

Now that we have that settled, let's get on with it. 

If you're the patient:

1. There's a reason why you're called the patient. You're forced to work on honing that particular virtue, patience, that few of us have mastered. I know I haven't. And yet, you have no choice. At the beginning, there are tests and more tests; then along comes treatment and waiting to see how it works, or patiently waiting for surgery and then wading your way patiently through recovery. Plus waiting to see if there's recurrence - the most painstaking and awful kind of waiting involved. 

And then! Then you also have to learn patience with your own self - which you've likely been pretty demanding of, body and soul, for all of your live long days - but now, you need to learn to forgive and be humble and take it slowly because treatments and lack of appetite and the various side effects that go along with everything else make what you once took for granted (whether that was loping up the stairs to grab a jacket or running five times a week or effortless yoga poses or being able to make it through the grocery store without collapsing) suddenly, perhaps, far out of reach. So start practicing your patience now. Meditate, maybe, just ten minutes a day (or twice a day for five minutes each). This will help you. I swear. 

Also, find other things that will help you pass the time without having to engage your brain. It's very hard to read critical theory, for instance, when you're really wondering if your bloodwork will come back and say you have no platelets and so can't get chemo. So maybe it's sudoku. Or a favorite tv show. Or coloring, or praying, or crossword puzzles. Knitting. Drawing still-lifes. Making model airplanes. Decorating a tiny dollhouse. Whatever floats your boat. Something is out there to help you! You'll know it when you see it. Have no fear, and have no shame - you gotta do what you gotta do, even if that means you decorate plungers to pass the time (true story: a good friend sent me a beautifully decorated plunger after I was diagnosed, and explained that she made a bunch of them because she found the process soothing. I found the end result hilarious, so everybody won on that!).

One thing to remember: the patience thing? As agonizing as it is, you know what? It means you're still alive. So, silver lining. Not every cancer patient gets to practice patience.

2. Now, do not confuse practicing patience with being doctored and pushed around. You have to be your own advocate. These are life and death decisions that you're making. So tell the doctor to talk to you like a person and a peer; bring along a support person or two and a recording device of some kind so you can review what you heard and learned. Do not be afraid to stop your doctor and ask questions. Do not be afraid to change doctors if they find your approach too invasive. Any good medical team should want you to be involved in your care! This is your body. You know it better than anyone else in the world. (And if you don't feel that's true, now's your big chance to get to know yourself. Helloooo, Self!) 

Remembering that you're the REAL expert in the room when it comes to you will make such a difference in your confidence and your care, and frankly, your likelihood of living a meaningful survival. I don't mean to say that you know more about cancer than your doctor, because you probably don't (even if you DID read The Emperor of All Maladies from cover to cover), or that you're going to live longer than you otherwise might once you reorient your thinking and feel like the captain of your own cancer ship (catchy visual, eh?). The reality is that cancer is a "dirty bastard" as my Aunt Nance would say, unpredictable and devastating, and the cold, hard reality is that you may not have all the time left on this planet that you deserve. But what I am saying is that seeing yourself as a cancer survivor and the expert on you from the day of diagnosis will help make all of your days more meaningful and fulfilling than they otherwise might be. 

I don't say any of this glibly - it's horrifying to acknowledge the very real possibility of one's imminent demise. I'm happily married with a successful career, lots of friends and family, and most of all, two young children who need a mama. I get it. I viscerally and completely get it. But acknowledging that I might have fewer days to make a lasting impact on my children or on the world I love, that I might have only a fraction of the time I wish to show my loved ones how much I love them - it's made me live in the moment much more than I ever did before cancer came along. 

3. Which reminds me: don't look at the statistics. First of all, none of us know how long we have. Cancer or not, an airplane toilet could fall out of the sky and squash you flat this very day. We're all going to die eventually, right? But I digress. 

The very first thing I did after receiving my diagnosis was look at stats. Terrible, terrible, awful idea. Hours before my diagnosis, I was working full time, the president of the PTA at my daughter's school, planning for my son to start kindergarten, and trying to find time to carve out for my husband and myself to be alone together. And by late afternoon, I learned that I was a stage IV colon cancer patient and had a 6% chance of being alive in five years. After I hyperventilated, you know what I did? I said, fuck that! Because we all know there are "lies, damn lies...and statistics."  Things are changing for the better in the world of oncology, and quickly, too, I told myself (and by I, I mean my husband, who is the ultimate cheerleader), and so those stats are probably already out of date. Besides, none of those statistics were ME. I was - and am - alive and kicking! As my oncologist said when I asked him about stats: 'Your stats are either 100% or 0, right? So let's just concentrate on that, okay?' Okay! 

Your stats are the same as mine. It's all or nothing for each of us. So make plans for if things go "pear-shaped" as one of my favorite literary characters says, but bank on 100%. Full speed ahead and nothing held back. Throw yourself into your treatment, into your health, into your family, into whatever it is that matters to you - with abandon. This is it, baby. 

Next, the caregivers (aka, the inner circle):

1. Oh, the caregivers. One thing I learned early on was that I had had angels all around me all along, and I hadn't even known it. People I knew I could count on showed up in FORCE, people I didn't know if they were in or out proved that they were IN, and people I didn't even know were thinking of me began to arrive, seemingly out of nowhere to help. I could close my eyes any time day or night and literally feel a hum of humanity, a reverberation of prayers, a current of real electricity between myself and the world at large. It was extraordinary, and very, very real. I feel it still, whenever I take the time to sit with myself and consider my good fortune. So many hands reach out to help...but none are as capable, swift and unyielding as that of the primary caregiver(s). Maybe this is one person in your life; maybe it's several. I had a little phalanx early on that surrounded me and my husband and my children, and lifted us up and kept us together (and do so still), even as my husband surely and without hesitation moved into the role of primary caregiver, not just to me but to our whole beautiful little family. He's done it so much, so often, and for so long - all without complaint, mind you - that it's easy to overlook. But he needs love and pampering too. 

The caregivers - the ones in the trenches, with you every single day, watching you suffer through needles and surgery and chemo and pain - they're taking on an impossibly difficult role, keeping their wits about them while also providing TLC to someone they honestly and truly love; offering encouragement even as they acknowledge and live with the devastating reality of a sudden cancer diagnosis and its possible repercussions in their own lives. So, patients, thank your caregivers, even when you're feeling particularly ill or down or needy; and friends and helpers who are in an outer circle (see above), assist those primary providers if you can. An afternoon out, a beer after work, a trip to the grocery, a clean house. A card in the mail. A funny gift.  Offers to take children off one's hands for an afternoon, or an evening, or an hour. These are the little things that make consistent, life-giving assistance possible for the caregivers. 

2. Caregivers, take care of yourselves! It's hard to reach out, so difficult to say that you're wilting under a burden you've shouldered gladly because of your love and affection for the person who is suffering. But it's okay to get away. To take a nap. To call your friends in another state or another country or from a life long ago and say, I need you. Because without you, it all falls to pieces. Nothing functions without the competent caregiver. Sleep. Eat. Take in a stupid movie. Lay in the grass at the park, or flee to the ocean for three days, if time and finances permit. You need it. You deserve it. And keep doing it, for as long as you're the caregiver. Because the burden doesn't just disappear, does it? 

3. Never feel ashamed or guilty about stepping back as a caregiver; do, however, let your loved one, the patient, lovingly know what's going on and why. The inner circle both chooses itself and is chosen by the patient, and it's an intimate and difficult designation. You don't have to accept it, and you don't have to remain in that position once you have accepted it. Maybe the initial hoopla has died down and you're not sure whether you're needed anymore;  maybe you're overwhelmed emotionally or spiritually. Maybe you have your own lives to attend to (it happens!). Maybe you're not comfortable or don't feel well equipped to be the receptacle for the patient's many concerns and anxieties, which usually are revealed only to a very, very few.  And that's okay. But do make it clear that you're not disappearing. Don't leave the patient to figure it out on her own. She's usually drug-addled, exhausted, ill. There's not a lot of time and space for subtlety, is what I'm saying. Tell the patient - in a non-judgemental way - whether and how you feel best equipped to help, and then follow those guidelines. Your loved one will respect you for it, and be assured by your love and affirmation of an ongoing connection. We patients need the people we love more than ever. 

Finally, everyone else:

1. First and foremost, please repeat to yourself on a daily basis the following: this is not about you.  Let that reality be your guide. Believe me, we patients wish it weren't about us. But our cancer diagnosis definitely is not about you. The above image and article rings true: send comfort in, and dump your own feelings out. Don't assume that you're the caregiver, or that you're the patient's closest confidante; if you are, believe you me, you will know. 

Don't go around telling everyone you know the latest news you've gleaned through a mutual friend, or a social media site, or an off-hand comment from the patient or the caregiver. The last thing those of us in crisis need are people gossiping about our condition. We're self-conscious enough, between the weight gain/loss, the thinning hair, the puffy cheeks, the limping, the surgical scars, the painfully sore and brutally bruised arms resulting from daily injections...the lists go on and on and on. On a similar note, don't go digging for information. I'll tell you what I want you to know. There are many, many, many complications and pitfalls, small and large, along the route through Cancerland. Sometimes patients or caregivers will share them, and sometimes they won't. Be respectful. If you ask your patient how she is and she says, pretty good, then take her at her word. Don't tell her she looks tired at school pick-up; of course she is tired, and as a matter of fact, just getting to school at all was a Herculean task that day, and fuck you very much for pointing that out.  Meanwhile, do offer specific avenues of assistance - a gift card to the grocery store, a meal at the local pizza place, prayers. Jokes or little gifts that take you about 5 minutes to toss in the mail and make about 5000% difference to the person who is ill (for instance, I received a huge envelope full of hand sanitizer during chemo from my best friend from middle school - perfect! I laughed, and cried a little, and then I used that sanitizer and thought about my friend each and every time I did.). A text message here and there. It doesn't take much. 

And please, don't be too disappointed in us when we can't make it to dinner/a movie/a girls' night. Don't judge us if we can't actually stand at the door chatting when you bring by groceries. It's not that we don't want to do these things. It's just that we're out of spoons. That's right: spoons. These little guys:

 

Don't know wtf I'm talking about? There's an explanation, 

and it's here: The Spoon Theory.

2.  Don't disappear. Honestly, there were a handful of people - friends AND relatives - whose behavior left me pretty bewildered during the early stages of my diagnosis. People I'd shared long, leisurely friendships with or meaningful discussions, people I thought of as family - they just pretty much disappeared.  Luckily, there's not much time to dwell on the individuals who duck out on you, because you're too busy managing your everyday life. But we know you've sort of ditched us. After a while, I realized that, in many cases, the ditching was a result of not knowing what to do or say, or discomfort with the idea that maybe I was dying. As a patient, I'm here to tell you that the whole thing is damn uncomfortable, and we don't know what to say or do any more than you do. So maybe just admit it: "I hate that you're sick and I don't know what to do about it. I care for you." Patients will likely be glad to just hear from you at all. 

3. And if you do ditch your friend and then decide to show up later (although sooner is better), don't ignore the elephant in the room. Your disappearance created damage, as any sudden friend disappearance would. I had one former friend - someone I considered a close friend - email me after many, many months, explaining she'd been too busy to be in touch because of x,y, and z, and wanting to know if I was ready to go out for a drink. Uh, no, thanks. She offered not a word to acknowledge (although she certainly knew) what our family had been going through. Just complete radio silence. It stung. It still stings. No, cancer is not my whole life, but it's a damn important part of it, and to pretend it hasn't wreaked havoc on me and the lives of the people I love the most, to not even have the decency to mention it - well, I was just floored. 

Everyone has reasons for not being able to engage with cancer patients. It's understandable, and it's allowed. Cancer is scary as hell, and it's long been seen as nothing but a death sentence. (Although I'm here to tell you it's not!) Before I was diagnosed with cancer, I never clicked on articles about cancer, and I kept my distance from acquaintances who had been diagnosed. I just couldn't deal with all the anxiety and concerns it brought up for me, as neurotic as I was. So, I understand that deer in the headlights/I gotta get the hell out of here feeling. But just say you're sorry you weren't able to be there when I needed you at first, but you're here now and missing me. Something like that makes a world of difference.  

If all of these recommendations for "everyone else" make you bristle or rub you the wrong way when you think about your friend or colleague or family member with cancer, well, maybe you should think about that. Either you're not as close to them as you thought/pretended you were - and in that case, please go about your business after wishing them well, and try not to be a rubbernecker. Otherwise, you might feel guilty about your own behavior. Or maybe you think I'm being self-righteous? Perhaps. Ah, well. None of us are perfect. I'm not condemning you, I'm just speaking my truth.

So, that's my beginner's guide to life with cancer. Next up, I'll post some of my favorite things that help me cope! Stay tuned, and keep that chin up. We're getting through this, day by beautiful/awful day. 

Yours Truly,

Dr. J