Don’t buy that Wig! Lessons in Mindfulness I Learned from Having Cancer

In this very personal guest post, Dr. Patricia Rockman describes her inspirational story of cancer and what it’s taught her about using Mindfulness to help “deal with life events skillfully and with a little more ease”.

She and her colleagues are offering an 8-week course in Mindfulness Based Cognitive Therapy for cancer starting in September 2016 which will be held at our Yonge and St. Clair clinic. For more information on this course please click here.

The Unwanted

The Familiar

There is yellow crusting on my left nipple. I don’t know how long it’s been there but it is showing no signs of going away in the near future.

I have the thought that this crusting isn’t benign. I think Paget’s. I’ve never seen Paget’s, the skin’s expression of breast cancer.  At first I don’t take the thought very seriously because I am not someone who has breast cancer.

My life is not about breast cancer. But we often don’t get to choose what our lives are about much to our surprise, no matter how much we stomp our feet in opposition to what actually is.

Our lives are lived through our own continually constructed plot line. It is the novel of me from birth to death, except the sickness, ageing and death part doesn’t usually take up much of the story, until it does.

We create routines, traditions, comforts, relationships, work and play that perpetuate notions of our permanence. And they are necessary. We couldn’t function within the complex culture in which we find ourselves without them. But too much attachment to them becomes problematic, particularly when life doesn’t behave according to our best-laid plans, which, of course, is inevitable.

In fact, the more we resist the natural unfolding of what life brings, the more we suffer. This suffering is created by our refusal to face what is, by clinging to a desire for things to be other than they are. Raging about our wrinkles doesn’t make them go away and actually makes us feel worse than looking in the mirror with a kindly acceptance. This doesn’t mean taking a resigned stance to life challenges, it just means dropping the figurative temper tantrum.

William Bridges, who wrote Transitions, developed a model of change and transition. Life is really about both. And all change, whether wanted or unwanted, brings some kind of loss, the new baby, marriage, the new job, divorce, or loss of a spouse or child. He defined change as that which occurs in an instant, an external event, while transition is the slow adaptive internal process, clear in retrospect, containing a defined beginning and end. Healthy grief might be seen from this angle. The death of a loved one happens immediately, here one moment and gone the next, but our ability to cope and adjust to this loss takes time and occurs in stages. So it is with any significant life event. Bridges talks about this process and some of the elements that can assist us in coming through life difficulties without getting stuck in them, unable to move on, even though the events have long traveled into the past. I have found this approach valuable. It speaks to the impersonal nature of experience, its universality and temporal nature.

Bridges’ approach begins with a first stage, the old familiar, referring to our created lives meandering in ways we recognize, changes occurring incrementally, perhaps even out of awareness. And then something ends. Such as when you notice yellow crusting on your left nipple, or you find a lump in your breast.

Ending

All change involves loss, even with those that are wanted. You meet the love of your life and lose your freedom.  You get breast cancer and you lose a breast, or worse.

Although we all will experience pain and this is beyond our control, we can choose how we meet such difficult events. And how we might do so with less suffering. We can cultivate attitudes, awareness and actions that can bring ease and be of assistance to ourselves and others. This is how mindfulness may be of service to our path, wherever it leads.

So back to the crusting that appeared, as an unexpected visitor. Paget’s isn’t common, so with mild concern but enough to take me to a surgeon, I booked an appointment. A mammogram and core biopsy revealed the diagnosis a week later. It was stunning.

I cried. My husband cried and the life we had been living ended. Just like that.

We don’t get to stop at GO and collect $200.00 when such change comes. We are simply pitched, head first into a different life. It can feel like you are beside yourself. And in a way you are. It is as if you have entered a parallel world. In this case, it is the world of the sick. And it is a very different world indeed. It can be so difficult to turn toward catastrophic illness or any major loss when they show up.

There are many different definitions and kinds of suffering. One, of course, is the variation on Buddhist’s psychology’s craving, of wanting things to be other than they are. This means wanting more of what you have or wanting what you don’t have or not wanting what you are getting. This is resistance to what is. Like not wanting the cancer that you just found out has taken up residence in your body. I’m not suggesting that we all play the “glad game,” of “trying to find something to be happy about in every situation,” the continual effort of Pollyanna, the character in the 1913 novel by Eleanor H. Porter. Nor am I suggesting that you take the view, “that everything happens for a reason,” in an attempt to provide a justification and gain solace from the idea that the world is ordered, kind and rational. It may be ordered but it is neither kind nor rational. Why do you get cancer? Some complicated combination of genetic and environmental factors. There is no deeper meaning, in my view, and this is frightening because we don’t have the control for which we so desperately strive. Another definition of suffering is that of Shinzen Young, Buddhist priest, academic and teacher. He has an equation:

Suffering = Pain x Resistance

What does this mean? Pain can be viewed as all of life’s events in which we either are, or feel hurt; sickness, physical pain, emotional pain, car accident, mental illness etc. Healthcare deals relatively well with the pain of medical and mental illness and the medical treatment of pain, but it does not deal so well with our resistance that so often comes along with loss and change. We, particularly in the western world, spend much of our lives denying these realities of loss, or refusing to have them and thus let go, allowing things to be as they are. This can work well until it doesn’t. Mindfulness helps us work with our refusal and to help us reduce our suffering. How it does this and what it actually is I will discuss in detail. Suffice it to say, at this point, that while there are many definitions, it is in part a practice in which we learn to manage our attention, thinking, emotions and behaviour by learning to focus and redirect them to the body and other senses when difficult states arise. We do this so we don’t get stuck in repetitive endless loops of thinking; rumination and worry about whatever is happening that we don’t like, common ineffective problem solving strategies. But in the case of navigating our way through tough life events, first we need to recognize and accept that something has changed and ended.

Bridges not only writes about our tendency to resist but speaks about it as a clinging to the past, the desire to return to what was, an unwillingness to let go. In this case, I wanted a healthy breast and to keep living as I had been.

Neutral Zone

Following an ending is what Bridges calls the Neutral Zone. You can’t go forward and you can’t go back. It may also feel chaotic, when previous coping strategies were useful and all of a sudden they aren’t.  It’s a point during the transition process where we can get stuck, unable to navigate the change that has already occurred.  It is during this period Bridges talks about the need for people to re-establish control (or agency), gain understanding, seek support internally or from outside sources and develop a plan kind of like creating a map to navigate the change that has arrived, welcome or not.

Often we are unwilling to have what is present. This willingness to engage in the process of psychological transition, to skillfully manage what is coming can assist us in moving forward. Willingness is an essential part of mindfulness. It helps us to face and constructively deal with whatever difficulties are coming our way.

The treatment of cancer doesn’t wait for us to adapt. It moves fast and can have the emotional weight of being hit by an avalanche.

Don’t Just Do Something

Experiential Avoidance

I don’t know how to wait. I don’t yet know that I need to learn.

A serious diagnosis or any other loss is painful. An epidemiologist once said that we die in three ways: catastrophically through injury, or illness, or we rot in bits. Whatever happens to us, turning away and denying loss can amplify its psychological effects, versus their intended elimination. This is avoidance.

One of the reasons we turn away from that which is either actually unpleasant or perceived as such is because we get anxious. We are afraid. We don’t deal well with uncertainty. Many of us don’t cope well with not knowing how the story is going to turn out, or not being able to control the ending. Anxiety, a natural and necessary response for survival has become exaggerated for many of us. Urban living does not provide many opportunities to run from lions, tigers and bears but human beings are hardwired to survive, so any perceived threat can arouse the sympathetic nervous system driving us to avoid or flee, fight or play dead (freeze).

Denial, avoidance and action are the great defenses against such fear. Avoidance is powerful in the short term, as Stephen Hayes points out, because it works. But what is operative here is “short.” Avoidance has a short half-life, before it needs to be used again. It also limits your life. For example, if you have social phobia (aka social anxiety) and get invited to a party and don’t go, you may feel temporarily better but if you use this strategy over and over, it won’t be long before you are locked in your house living your life through technology to communicate with others, to order groceries and to pay your bills. TV characters become your best friends.

Rumination, worry, and blaming our selves or others for our pain can also serve as ineffective problem solving strategies that help us attempt to avoid feeling the soft underbelly of anxiety and vulnerability. They also prevent us from building distress tolerance and self-efficacy.  This is the resistance part of the equation above. But first often comes experiential avoidance. We don’t want, and are unwilling to have what is here. This is resistance. We don’t want to feel what is here, particularly when it is painful or unpleasant. But these methods are not curative. Once in play, illness and loss are always there as soon as you glance in their direction, particularly if the loss is close or the illness has taken up residence in your body.

Avoidance through attempts at control can be an expensive proposition. In the treatment of cancer there is an urgency to act that can seep into all aspects of the cancer care experience. Part of becoming a cancer patient involves the adoption of that identity.

Shortly after receiving a diagnosis one is often reeling with the acquisition of this new patient sick role and the associated related work.  By work, I mean the new routines, actions and logistics of your new life. Like going to the hospital for what feel like endless appointments for MRIs, CAT scans, blood work, X-rays, IVs, needles, prescriptions, to see an array of doctors: the oncologist, radiation oncologist, general surgeon, plastic surgeon, not to mention those you might see for a second opinion.

It is actually important to take on this new identity, not so much that it is all you are, but enough that you do what you need to do during this period. Remember, you are not only a sick person; you are not only a patient. This can be hard to keep in mind when you are bald, wearing an oversized blue gown and walking around pushing an IV pole full of the therapy aimed at obliterating the unwanted resident that is inhabiting your body.

The process of becoming a cancer patient takes place at sonic speed. Everything seems urgent. Like it has to be taken care of NOW. This urgency actually is only a reality with respect to the medical treatment, whether one is beginning with surgery or chemotherapy. Everything else can wait. Anxiety and the desire to have the most optimal outcome, controlling what we can, may drive us to make decisions and take actions that in retrospect may not have been necessary.

We can ask ourselves, “does this really need to be addressed now and taken up, or can we wait to see some of the unfolding of experience to get some perspective, from this sense of urgency and the tendency to act?” Asking such a question may allow for some perspective taking, for gaining a little distance from the total immersion in the experience, fully gripped by the distress that so often comes with the unknown. Discerning when to wait has many advantages. It took me so long to learn the benefits of waiting. Take a breath, or as my friend, Dr. Lee Freedman advises, “Take 3 calming breaths.” This can be a simple way to pause or wait.  This doesn’t mean hyperventilating but rather taking slow breaths, prolonging the exhalation in relation to the inhalation. So, for example, you might try, when feeling particularly stressed, reactive, anxious or angry, breathing in for a count of 4 breaths, and out for a count of 6. I suggest doing this silently.  Another tool that I used many times a day during treatment and continue to do so, is the 3 minute breathing space (for a video click here). This practice allows us to check in with what is currently happening to us in our thoughts, emotions and sensations with curiosity, and assess skillful or helpful options. It is an incredibly valuable tool to strip experience down to its bare essentials, taking away emotional embellishment, slowing down the speeding thought trains that just make life challenges and difficult emotions worse. This doesn’t mean you don’t feel scared or sad or mad. It just means you have these feelings, but you don’t have to be them. You have attendant thoughts but you don’t have to be those either. It’s kind of like taking a time out except you didn’t get sent to your room, but rather, you move your attention internally.

So, when I tightly grip my friend’s index and middle finger during the nipple biopsy I am not trying to crush her hand, I am simply holding on to manage emotions, thoughts and physical sensations. I know I am distracting myself with this alternate stimulation but it is intentional. Intentional means that there is choice and deliberate action. I have made a decision to grip, versus feeling helpless and lost in a vortex of emotional reactions. I also try to remember, the breath is always with me, a mobile bodily app, free for the downloading into awareness. I drop my attention into the sensations of the breath at the level of the abdomen feeling the abdomen expand on an in breath and deflate on an out breath. Every time the attention wanders into some imagined nightmare, I drag it back to the belly.

We don’t like feeling uncomfortable. It is natural to move away from discomfort but this is not always the best strategy. When we are unwilling to have what is here, it will have us and we suffer. We do not build our capacity to handle life struggles with equanimity and skill. We don’t learn to accept what is on offer. We spend a lot of time trying to get away, without much success, from what we don’t like.

I am scheduled for surgery following chemo. They are going to take the left breast and a bunch of nodes in the axillae (armpit). I’d been trying to negotiate, to bargain, a la Kubler-Ross, to keep the breast, just have them take out some lumps but it became apparent, that this would just be too disfiguring. The breast was going to have to go.

I am instructed to go to Melmira, a store in north Toronto that sells post-surgical “camis,” the white cotton camisoles with internal pockets to hold the drains that are sewn to your skin following mastectomy or lumpectomy. It serves to stop you from messing up your clothes from the fluid that exudes from the body as it heals. My daughter, who is as pro-active as I am, comes with me to shop for this unwanted object.

Deep in both our genetic structures is this impulse to act and it serves us both well, most of the time. As a socially acceptable and encouraged way to manage anxiety it definitely has advantages. So, off we go to this boutique for women who find they are to be missing one or more of their body parts that identify them as phenotypically female. The salespeople speak quietly and float down the hallway. The breast seems to be elevated to mystical status in this apparent sacred space. I feel like screaming. We buy the cami thoughtlessly. As we go to pay for it, my daughter asks me what I’m going to do after the surgery when I’m single breasted. She suggests we buy the prosthesis now. So back we go down the hallway and enter one of the rooms with an, oh so young sales clerk. She brings us soft, pink; silicone left breasts of various sizes. They are cool, smooth, soft, nippled, mushy and lifeless.  I compare mine with them and ask my daughter’s opinion. She holds one, as she critically appraises mine against the fakes. She has never spent this much time so physically intimate with my breasts she notes. We laugh. It all seems ludicrous, as if it is a joke. But it isn’t. All modesty vanishes in the face of serious illness and the act of giving birth. She and I have already been through the latter together. I choose a boob. It costs $365.00 before tax.  The cami and breast together, amount to almost $700.00.

Ultimately, regarding the surgery, I eventually decide on immediate breast reconstruction so no prosthesis and no camisole are needed. Immediate breast reconstruction means that you lose a breast and gain a breast at the same time (albeit the new one is made from your own fat and blood vessels in the procedure I chose). The prosthesis still sits snugly in my dresser drawer, as a reminder of the benefits of waiting. I loan the cami to my friend who has a lumpectomy. She still has it.

More urgent actions and avoidance follow in the middle of chemotherapy, as I start to lose my hair. To wig or not to wig becomes the question.  One of the interesting things about cancer, and likely with so many serious challenges, is that however you imagine you’re going to respond you may not.  Yielding to, and even embracing uncertainty can create an enlightening process. If you remember you don’t know what you don’t know it can also help you make less reactive and expensive decisions. How often we forget stopping may have benefits. How often we have to learn the same thing over and over again.

I am given a couple of suggestions for buying a wig. I choose one and my friend comes with me for this first visit. The sales woman, who is also wearing a wig, explains how they can match my hair perfectly and I think, because I do so much public speaking and teaching, I should have one. I don’t take the time to really reflect on this, to process what it means. I still haven’t realized that at this time I can’t reflect very well. I am not thinking clearly. I don’t ask myself, what am I trying to hide? Who is this really for? Is it really necessary? Do I even really want it? So, what if people see I don’t have any hair? Will it make me feel better? Will others treat me differently one way or the other? Does it matter? These are important questions I now think, if from no other perspective than a financial one. I could have saved myself a lot of money, anxiety and shame.

I put down a non-refundable $1200.00 deposit on a custom wig. I don’t even realize it is non-refundable at the time.  I have no memory of being told that. I have no memory of seeing this bit of important information. The problem with buying a wig when you have cancer versus buying a wig because you want more options regarding hairstyles, for example, is that your judgment may be off, you may be more vulnerable, not at your best for decision making. A couple of words of unasked for advice if you or someone you love has cancer and is losing their hair: always take someone with you for these big decisions. Don’t put the money down right away. Remember, no matter what you think, you are probably not in your right mind. So, go away and think about it. Don’t let some sales person who really doesn’t have your interest at heart talk you into something you may not want or need.

I end up returning to the wig store five times in a futile attempt to match my crazy hair. It doesn’t work. The wig is hideous. And it is my opinion that matters, not the sales woman who tells me repeatedly how beautiful it is, because I am the one who is going to have to wear it. The salespeople keep telling me how fabulous I look. I feel weak, confused, like someone unknown. In that moment I am someone else, unable to access my strength, honesty and direct speech. This is why during the cancer experience it is valuable to surround yourself with people who love and support you, who can advocate for you, who can be your voice when yours is suddenly elusive.

My friend says to the sales woman, “If it was a head warmer it would be great, but it isn’t.” She’s really mad. She takes me out of the store sans wig.  I could simply have waited to see what hairless looked like before becoming entangled in this complicated and consuming process of covering up my pate. I could have waited to see how it felt and what I really thought, versus the imaginings of a fertile mind. Truly, of all the experiences surrounding the cancer, the wig shopping was one of the most difficult and painful.

In total, my efforts at control were a $2,000.00 lesson in the folly of avoidance.  The cultural ethos is to hide our sickness, aging and death. Wear a wig, use a prosthetic, warehouse the sick and aged. As if we can live our whole life without any of this ever happening. If only we don’t look at any of it with our eyes, or listen with our ears maybe we can. Good luck. We try to do this in so many ways, such as with alcohol, shopping, or eating. As Joseph Goldstein and Jack Kornfield write:

“The unwillingness to be with and experience (difficult) feelings keeps us always reaching or grasping for something else. How much simpler it would be to just allow (them), letting them arise and pass away without struggle or resistance?”

Yet there is a paradox here because if we then allow the feelings to emerge with the covert goal of getting rid of them, we suffer. The message is to “allow” them, to be with them, without any other agenda. Not so easy. It is such a delicate balance, this mindfulness, too much one way you fall off the tight rope, too much another and you find yourself hanging on tight and terrified. Just right, and you yield to the up and down, side-to-side sway, one with the rope, applying just the right amount of effort and ease. As Jon Kabat-Zinn said:

“You can’t stop the waves but you can learn to ride them.”

Our reactivity, in an attempt to save us, often just creates a more deeply felt sense of separation, anxiety, agitation, or anger. We so often feel threatened and think things require immediate action. They so rarely do.

Mindfulness can help us to be with experience as it is, to reduce the emotional charge and learn to deal with life events skillfully and with a little more ease.

Patricia Rockman
MD, CCFP, FCFP
Associate Professor, University of Toronto, Department of Family and Community Medicine
Senior Director Education and Clinical Services, Centre for Mindfulness Studies