Cancer Help Program 30th Anniversary Stories
In 2015 Alumni started submitting stories and poems about their experiences on Commonweal retreats and reflections about the program. You can find them at www.chpalumstories.wordpress.com/
Sitting with Uncertainty
Below is a excerpt the from an online discussion among past Commonweal Cancer Help Program participants from Jan 2011 in response to the questions: What helps you when you are waiting for test results? When you receive unfavorable medical news how do you respond? What helps?
We are sharing our thoughts about our varied experience in hopes that others may find our words engaging and supportive.
Dear Wise Ones,
I’m asking for your advice and stories because I know you have experience with this. At the end of December I had an MRI that shows ‘significant results” The medical consensus is that whatever it is that showed up on the scan has a high probability of being benign but ‘we just don’t know’ So in the next few weeks I will have more tests , more waiting for results. I was pretty shaken up for the first few days and many new symptoms suddenly appeared but after the first night of broken sleep and worry and blurting out my worst fears to a trusted friend, I have been eating and sleeping pretty well. I also feel lucky to have a few close people who really get it that I can confide in.
I’ve asked my intuition what it feels and the response is ” whatever the results, you will be fine.” Thanks a lot intuition, you’re supposed to say ‘benign”. Trying to wrap my head around the notion that even if my worst fears are confirmed I will be ‘fine’ in a broader sense of things is a new notion and still scares me. I have always been of the ‘rage, rage against the dying of the light school of thought’ I’ve paid lip service to acceptance but never practiced it. My superstition has always been that if I accept my mortality it means I’m ready to die and I will die soon. I hope with this scare that will change and I will finally be able to write a will and an advanced directive. Yes, I know I should have done this long ago. I’m like a doctor who smokes.
Here are my specific questions for you. What helps you when you are waiting for test results? When you receive unfavorable medical news how do you respond? What helps?
– Terri Mason
I think the waiting is the hardest part of having cancer. One of them anyway. Once you know what you are working with, it’s easier–you are in the new reality and your whole being adjusts. When I think back to having cancer the first time, there were some terrible, horrible days and moments, but generally, I was just in that reality–a person with active cancer. It had it’s wonderful moments, too, its gifts of clarify and changed focus and compassion and awareness of the community around me. Waiting was the hardest. Not knowing is the hardest. When I have waited for test results, I’ve reminded myself that “thinking my cancer has come back” or “wondering if it has” is far worse in many ways that simply living day to day with a diagnosis. It was the FEAR OF that was the worst, not the actual experience. If my cancer comes back, if it metastasizes, if in fact I will live an abbreviated life because of cancer, that will be my new reality and I will shift into it accordingly. Waiting sucks. That’s the reality. Not knowing sucks.
– Laura Davis
P.S. I just came across this quote, quite apt for our morning discussion: “Nothing can happen to you that is worse than living in fear that something could happen to you.” from “There’s Nothing Wrong with You” by Cheri Huber.
All of us with cancer live with the reality that it may recur. And, it may kill us. Something will. Life is terminal. Yet, we need to cope with insecurities and the possible progression of our cancer every day which remains for us. Worry does not serve us. However, worry may be useful if it catalyzes us into exploring how to manage our fears, our terror. Each person can search for ways to comfort and replenish the self, to feel less overwhelmed and to devise our own means cope more effectively. For me some of the most effective ways have been meditation, intense private discussions with others who love me and those who know more about cancer than I do, avoiding folks who project negativity, enjoying nourishing food and, for me the most useful, exercising several times every day. May you discover your own comforts….
– Karen Jacobs
I don’t know the answer. Waiting is hard. I try to stay grounded and loving in the present, and stay hopeful. Easier said than done. Your question made me think of Bernie Siegel’s book, How to Live between Office Visits. Perhaps it could offer some grounding, ideas, comfort? Stay in “love”. Ah, but the trick is to do that while still acknowledging other emotions. Maybe there is enough love to encompass all of the feelings? More questions than answers, but definitely something worth exploring.
Your email raises one of the toughest issues for me in my cancer journey; how to face uncertainty with grace?
Before I tackle that one, no easy answers there, let me observe that your intuition is offering very wise counsel. May you listen and hear its wisdom. And if has led you to face the issues involved in making an advanced directive, then that is all for the good. We each do each step of our journey as we are ready. About your ‘superstition’ or magical thinking, about equating accepting mortality with hastening it, in my life, it is certainly just the opposite. Facing my mortality revealed several important wisdoms. First, that a very big part of me wanted to live and was willing to do what could be done to make that happen. Second, that it was possible to prepare for life by preparing for death and that we can all do that each day. Hard to keep reminded of these truths in my life, so thank you for inviting us to remember.
As for facing uncertainty with grace, the best advice that even works sometimes for me is to do whatever I can do, and then to place my faith and hope in the benevolent powers of the universe, and remember to ‘turn it over’ as my AA friends say.
I also work very hard to narrow the areas and length of time of uncertainty (by among other things, getting ‘wet reads’ right away of scans each time), but uncertainty keeps popping up. Uncertainty about outcomes is always with us. Uncertainty about the nature of exactly what is happening, as in waiting for scan results, is the among the hardest of times for me.
May we all learn to live with uncertainty with grace in the big and small elements of our lives.
– Rob Feraru
Thank you for convening our circle with your question and thanks to all for this conversation. I am feeling right now that my own capacity to sit with uncertainty descended upon me like a kind of grace from the moment I heard that I had cancer. Maybe because I was so young then and had always been so sure I would live to be 100, when I heard the news I felt that I had finally lost my innocence and started imagining my death. I have had nearly 20 years now to practice this, not in any formal way consistently, though I fully recognize the value of doing that, but every day, nonetheless. In my more enjoyable moments, I am simply curious, and in the painful ones, simply frightened. And everything in between, of course. On a practical level, I have trained myself to detach from test results until I get them, knowing that wishing for an outcome is a waste, as it already is what it is. I do what fully engages my mind and heart—connect with the people I trust the most and with whom I trust myself the most.
I am also a profound believer in distraction and a little bit of denial. I read, I watch movies and favorite TV series . . . like that. I calm my body with hot baths and watching the sky change (mostly from the ease and warmth of my living room couch) and somewhere inside I know I am waiting. It’s like the space between the exhale and the next inhale: nothing else has to done until the next breath breathes itself.
– Merijane Block, alumna of December 1999 and June 2009 Cancer Help Program.
My challenge in all of this is to remember I’m the same person I was before the CAT scan. This result doesn’t change my actual life; it just changes what I think about my life. I had an old Indian teacher who used to say, “Your mind is a bad neighborhood. Don’t go there. You’ll get mugged.”
This is the reality of this disease. It is chronic. It will most likely come, and hopefully go, for the rest of my life, regardless of how long that ends up being. I can’t help but want to be special, be a miracle, be an overachiever, be an outlier, and I don’t want to feel like a failure or that I am to blame if things don’t go as I prefer.
This is as close as I get to positive thinking. I acknowledge my desire to live a long life and to have a chance to re-invent my life if I ever go back to doing something other than caring for myself full-time. I want to have more adventures. I want to be with my loved ones and be a part of their lives unfolding. I want to be of service to people again someday. The intensity of these desires and my longing for life feels like my life force expressing itself. How do I maintain this passion for life and yet let go of what I can’t control?
I don’t believe in positive thinking because I don’t believe that thinking is the way to guide our lives. Positive or negative thinking is still thinking, and thinking is not the most powerful force in us. The harm that’s done is obvious when people get caught in repetitive negative thinking, but positive thinking can also make a person blind to that which they really need to be responding. There’s a fine line between positive thinking and denial. And regardless of what we think, our unconscious still exerts more influence than our conscious thoughts. I believe that people who say one thing and unconsciously harbor the opposite are ultimately at much more risk of serious consequences, because they are in internal conflict and discord and not in touch with the necessity of the moment.
So I let myself feel the disappointment, the sadness, the grief, but I don’t dwell on it. It’s like bad weather; it will pass. I try not to let fearful scenarios take up space in my thinking because they are clearly only one possible future. I also try not to dwell on my desire to have my life be mended, because my desires are not reliable either. If I get too attached it makes it harder to cope with not getting what I want when that eventually happens. Inhale. . . exhale. . . It’s good to be alive and breathing as I sit here typing on this Saturday morning knowing that you all will be reading this and joining me in being alive together right now.
First off, I want to say when I ask my intuition for answers, I get the same “you will be fine” answer. I feel like saying “Intuition, what is up with that? Around here, fine means anything from just losing a job, house and spouse to just getting a job, house and spouse and everything in between!” So my response is the same as Terri’s “Thanks a lot intuition …”.
I used to live in a reality where I just knew I was going to outlive my 401K as the women in my family are long lived. My foundation was shaken when I was diagnosed with breast cancer at the age of 51. Couple that with the sum total of my patience fitting on to a pin head and my inclination now when faced with uncertainty or waiting for news (test results, company merger/layoff notices, etc.) is to dive right into the well of despair and hang out there for long periods of time. But there is a part of me that is totally aware that wallowing in worry and negativity is not good for my mind, body or spirit. When my daughter was living with me, we had a deal. When she got really upset or mad or depressed about something and chatted with me about it, I would listen to and acknowledge her feelings and then make a deal with her. I would set the timer for say, 30 minutes, and she could use that time to totally dive into whatever “negative” feelings she was having, but after the timer went off, she was to do her best to leave it behind and focus on something else. A couple of years ago she thanked me for that (I hate to use this word) “strategy” for getting through “negative” feelings. I still use this tactic, but as I write this, I am thinking I should use it more.
Dahlia, my then eleven month old puppy, was very near to death just over a year ago. Thanks to amazing skill from veterinary surgeons and a mom (me) who was willing to pay for her surgery, Dahlia is alive and well and bringing joy to my life. But that day, Dahlia and I were sitting in the waiting room waiting for our turn to see the vet. She was in amazingly tremendous pain. But a cute Boxer walked by, and amazingly Dahlia, who I had just carried in to the waiting room, stood up and looked her cutest and wagged her tail at him. Distraction … 🙂 !! Personally, I like to go the distraction route. Thanks to Netflix, I can watch sitcoms episode after episode (i.e. The Office), or stare at a full moon, or mow the lawn, or go see Academy Award nominated movies with my friend, or watch Dahlia run around the field with other dogs with wreckless abandon. At those moments, “negative” brain chatter is all but gone.
As for me sharing bad news or uncertainty with others – family, friends, strangers – I have found that there is a short list of people in my life that I share bad news or uncertainty with. In my experience, I have found that most people have a somewhat low tolerance for hearing such news for differing reasons, some unidentifiable to me … and the cancer topic is definitely often in the “bad news” column. Which is why I am so grateful for Commonweal (the place, the people, the spirit). Commonweal is a place where I can be my authentic self … a place to speak the words much of the rest of the world does not want to hear.
My very favorite book addressing this topic from a Budddhist perspective is “Comfortable With Uncertainty” by Pema Chodron. I read it often.
– Liane Makiva
I recently had a scan and then, a wait and see period. These tests and uncertainties, whether they barge or creep in, arrive like an uninvited stranger at my door, commanding attention and becoming my sole distraction.
I found yoga meditation a great balm years ago, but I traded that in for doing a lot of art work. Vast silences and contemplative spaces (in my images) helped. And in the last bout of waiting, I talked to friends, I asked for help (always a difficult thing for me), and was blessed along the way to meet some wonderful people. Now, I am reminded of this Circle, a place to turn to where I can be surrounded by the open hearts who have traveled this path and can offer their guiding words.
p.s. This book, The Open-Focus Brain, by Les Fehmi and Jim Robbins. was suggested to me by my doctor when I was very anxious, too anxious to delve into the book! It has received rave reviews. It also comes with a CD, so you can practice. It’s on my bedside table…waiting.
As to the matter at hand
Uncertainty chases certainty like a dog chases its tail.
You do not need sleep to dream
Wake up. Your hound is barking.
What a beautiful monster so near.
This weekend I’m flying to LA to visit my parents. I haven’t told them anything yet, I didn’t want to worry them unnecessarily, but as the days of non-disclosure stretched into weeks I became aware of the distance I was creating between us. I’m not sure I would do things differently, but I am more acutely aware of the cost of protecting them and protecting myself from their fear. It will make me question more closely what I do in the name of ‘protection’. Here’s another question for discussion. How do you handle sharing unfavorable news with those closest to you? I often try to stay upbeat even humorous, try to demonstrate that I will be fine no matter what. Its much harder to share my fears and vulnerabilities. In close relationships its easier for me play the role of caretaker. I’m curious to know how others handle these issues.
– Terri Mason
I’m going to attempt to answer your question about sharing bad news with those close to you, as well as those not so close. This has always been a huge issue for me. I’m definitely the person who is uncomfortable when others are anxious about me; I don’t like too much sympathy; I’m very uncomfortable with with both pity and admiration of the “you’re so brave” variety, so sharing my worries and concerns and realities is hard for me. I learned through painful experience that not telling my husband is very hurtful for him. So now, as soon as I notice that I’m concealing some bad sign I’ve noticed, I force myself to speak up and put it into the space between us. This helps, and gives me someone with whom to share my fears, but it’s still counter-intuitive for me. I always imagined that by postponing sharing with him, I was taking care of him; I see now that it’s just partly a way of taking care of me by not speaking my fears out loud.
Then come my children, two grown men. They understand how ill I am and that my prognosis is not good. Still, they would like me to live as long as possible. We try to give them news that is concrete – test results, etc., instead of just sharing worries with them. We also try, as much as possible to give them the same information at the same time. And over time, I’ve found that they now ask questions where in the past it felt very unidirectional. In any discussion, I give lots and lots of time for questions, even if there are long awkward silences.
My sister is actually the most difficult challenge for me. I find her worry about me hard to tolerate. She also asks me questions that for some reason I find irritating. It makes no sense, but I can barely deal with her desire to take care of me. I’m the big sister after all, and I can take care of myself. So I just steel myself before I talk to her. I think I get a little harsh. After that, there’s the whole wide world. Ever since I had cancer I have come to understand so much more about the gay person who decides to come out. To whom does it matter that I have cancer? Why should they know or care? How inauthentic do I feel if I haven’t told my co-worker; the person I’ve just run into in the grocery and haven’t seen in 3 years; my Pilates teacher; My sister has told all our mutual acquaintances, as well as friends of hers I don’t know at all. This has made it easier for me – the information is transmitted but I didn’t have to do it myself. But I still don’t like the idea of being talked about in that way when I’m not even around. It seems like I’ll never find a point to be truly comfortable with all this information sharing . . .
A few thoughts about “uncertainty.” We feel most uncertain in the absence of certainty. Being human we crave to know who we are, where we are or what will happen next. To come to terms with uncertainty and to hold it with less anxiety we accept that we can never know with certainty what will happen the next moment, the next year or next lifetime. There is little that is certain. A month ago none of us knew the Middle East would be sizzling as it is now. Before we were diagnosed how many of us knew we would be dealing with our specific ailments and diseases? The future leans toward uncertainty. That’s how it appears to work.
We hope to find comfort in certainty. Do we? We are certain of our own death but do we find comfort there? Probably little. With that certainty arises a tide of nattering uncertainties, when, where, how, will I be ready, will I be in pain, will I be sane, will I go to heaven, will I fulfill my life’s purpose, will they survive without me, should I move to the city or die by the sea? What about self-deliverance? Don’t even go there. There is plenty to go on about but what can you know for sure?
One of my uncertainties continues to be my perky PSA numbers. The number is currently 10.1 and I have not done the prostate biopsy. I’ve been talking about this for several years. As you can imagine I’ve had conversations with some of the brightest and best but there is no consensus. Opinions swing from, “run, do it,” to “great numbers,” to “don’t think its really necessary now.” I’m the only one who can make the decision. Why do I delay? No easy answer. Lot’s of rattle. Heavy in the mix is the familiar struggle of the unknown vs the known and the suspicion that the biopsy result, whether positive or negative, will spawn more uncertainty. Of course there is fear as well as a captivating inner voice chanting don’t do it, don’t it, no, no, not yet. This voice has been sounding off for a lifetime and has been right so many more times than wrong. But…. This is where I am. Don’t be surprised if in some future email you find the results of my biopsy. Ouch! Some of you may think I’m crazy. Well, I resemble that comment.
The known and the unknown are not opposites with begin and end points. It seems they flow, move, and stretch into each other. One takes the lead and in time, the other. In heartbeats of awareness they are a moment in time. To still the quivers of uncertainty recall a teaching from the Lankavatara Sutra – Things are not as they seem nor are they otherwise. Simple wisdom or just more words. Ease comes when we hold thoughts and perceptions gently. Hold them loosely with room to play and space to breathe.
– Waz Thomas