Healing Self, Survivorship 0 comments on Sometimes you don’t realize what you are holding on to, you just know something is wrong

Sometimes you don’t realize what you are holding on to, you just know something is wrong

As I prepare the webinar, Back to Life, Back to Reality: Decoding Cancer Survivorship, different stories are coming to mind of the cancer survivors who I have worked with in addition to my own healing process.

This first story is of a cancer survivor who was a few years post treatment. During treatment, she had experienced a variety of reactions to the fact that she had cancer. Some of the reactions contributed to her fear that she was going to die, even though she had a good prognosis, whereas other reactions were diminishing of her experience. For the most part, the reactions were from one extreme to another, with the exception of her immediate support system.

As treatment wound up, both sides of those extremes receded, yet no one imagined that perhaps moving on emotionally would be an issue. She returned to life as it was, sensing that things were not quite right but also needing and wanting to move on.

Fast forward and another medical issue rears its head, and while it was not life threatening, it involved significant changes to her lifestyle.  It also stirred the under-processed, under-recognized impact of cancer, which began to surface in unexpected ways. She began seeing an acupuncturist, who helped her identify that she likely needed to work through her cancer experience, and eventually she started working with me.

She scheduled an appointment because she trusted her acupuncturist, and she was desperate to feel better. She struggled to understand why she was having such a hard time, after all she had a loving and supportive partner and adult child, and felt like the other things “shouldn’t matter” because she was cancer free and knew of others who would never hear those words.

As I walked her through the common challenges cancer survivors face with regards to emotional healing, she began to tap into the various reactions to her cancer diagnosis and how it had impacted her at that time. We connected these reactions to how she herself had reacted to her diagnosis, treatment, and recovery. She was sent home with the preparation guide that I developed for the healing the body session, a series of questions to help assess our experiences and relationship to our body.

At the following session, I lead her through the flow of the healing the body session- finding our jump off point, exploring it visually through art and then reflecting upon the work’s impact on her understanding of herself. As she talked me through her drawing, she had a breakthrough moment. She uncovered something unexpected, something that she had been holding on to, something that she had no idea she had been feeling.

In this moment, she recognized that the tissue which had been removed during the surgery, the tissue that held the cancer and the clear margins, the tissue that had been examined by pathologists, this tissue had never been returned to her, not had she been able to say goodbye.

Deep down, this had caused her to feel like she was not whole, a piece of her was missing, and that she was no longer able to protect it. This loss had not been acknowledged until this moment, and thus she had been carrying around grief that needed to be expressed.

This spontaneous release of sadness and deep appreciation of her need to grieve what she had been through, helped to transform the unease she had felt about “something being wrong”. The act of my witnessing and guiding her walk through the process, supported her validating her inner landscape- allowing her to lean in, feel through and then let go.

I have written before that our feelings are messengers, who hold key information about our experience. These messengers take their job seriously, and can come out sideways when we do not allow them to speak openly. When you develop ways to hear the message, you ultimately give yourself the gift of validation, which is a critical step in the emotional healing process.

-Stephanie McLeod-Estevez, LCPC, is an art therapist and breast cancer survivor, and a former oncology counselor at the Dempsey Center. She began Creative Transformations to help others who are healing from a life threatening illness or injury. Through Creative Transformations, she works with people in person and online to offer cancer coaching, an Art as Therapy program, workshops, and this weekly blog. Check out the individual packages. Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.

Healing Self, Survivorship 0 comments on Sending love to our previvors

Sending love to our previvors

When I was 30, my PCP suggested that I meet with a genetic counselor, given the family history of cancer. I found the process to be quite enlightening, as I had never met with a genetic counselor before. I did qualify for testing, a decision I wrestled with, because I was still grieving the death of my mom from metastatic breast cancer. The impact of that loss really had me questioning a lot of things about life and trying to figure out major questions, like whether or not to try to become a mom, knowing that I could also die young from cancer.

One of the factors that tipped the scale for me, was the strong possibility of having an ambiguous result. Since I was already grappling with trying not to say no to major life decisions, I determined that it was not in my best interest. I decided to move on and I was fortunate enough to become pregnant and have two children.

When Angelina Jolie underwent a preventative double mastectomy, a little voice inside me pondered revisiting the genetic testing. The reasons that prevented me before had passed, and I was coming closer to the age in which my mom and her sister were both diagnosed (42). I never followed up with that thought, in part due to having crappy insurance at the time.

Ultimately, I did find out that I am positive for a BRCA2 genetic mutation, which we discovered after I had begun chemotherapy for triple negative breast cancer. While I was determined to not second guess my choices, I did have regrets.

I think it is such a brave act to undergo genetic testing, because it means that you are staring straight into the web of possibility, having to process a probable reality of something that still has yet to occur. And then of course comes the decisions of what to do if you do have a mutation. On one hand, having choices is a privilege yet on the other hand decisions made on possibility or probability meaning that we are having to predetermine our own fate.

The reality is, even if you make calculated choices for prevention, they still don’t guarantee outcome nor do they prevent you from having many thoughts and feelings to cope with.

There is still loss for previvors, loss of innocence, loss of opportunity, loss of our body as we know it. There is pressure to determine if you should have offspring, because that means that you are putting them at risk of receiving the genetic mutation and/or having to face having a parent with cancer or getting cancer themselves.  Last time I checked, this isn’t an openly discussed topic amongst people who are trying to get pregnant or who have become new parents.

The decision to have children, whether it is a previvor or a cancer survivor, is a touchy subject. There are those who judge parents who make the decision to have children, even though there are risks ahead. To be fair, none of us have any guarantees in this life, so in my opinion we need to stop living life as if we can control it.

Our previvors are brave AND they still face the “What ifs” that the rest of us do. Our previvors confront their own form of survivor guilt, knowing they had the chance to do something we wish we all had. There are support services for previvors, but they tend to be more of a hidden subgroup. If you have been reading my blogs for a while, you know how I loathe the impact of silencing. Silencing leads to isolating, which leads to more complex issues.

HBOC, a society dedicated to supporting previvors list the following on their website:

At any stage of a previvor’s journey the road is difficult, especially for young previvors who have not yet had their children or are in a committed relationship.  A typical previvor journey includes several or all of the following:

■ a childhood fraught with the loss of loved ones to cancer
■ a realization that cancer could also happen to you
■ the decision to go for genetic testing and the lengthy wait for the results
■ confirmation of a genetic mutation or a family history worthy of you being deemed an HBOC syndrome carrier
■ constant fear that you or a loved one will be next
■ adulthood with more loss of loved ones to cancer
■ increased screening starting at the age of 25 for breast and ovarian cancer which includes a variety of tests, some invasive
■ chemoprevention drugs that reduce estrogen, thus causing chemical menopause
■ all of the fear, appointments, tests and surgeries associated with preventative-double-mastectomy and in some cases, to remedy complications
■ all of the fear, appointments, tests and surgeries associated with breast reconstruction
■ all of the fear, appointments, tests and surgeries associated with preventative salpingo-oopherectomy (fallopian tubes and ovaries) and in some cases, to remedy complications
■ surgical or chemical menopause and the resulting side-effects that usually include hot flashes, mood swings, cognitive issues, and long-term side-effects that may include bone loss and heart health
■ body image issues, loss of feeling and reduction of sexual function
■ loss of fertility
■ relationship issues
■ depression

So to the previvors, I honor you and want to send you love. You are deserving of the care and consideration you need. Together we are stronger.

– Stephanie McLeod-Estevez, LCPC, is an art therapist and breast cancer survivor, and a former oncology counselor at the Dempsey Center. She began Creative Transformations to help others who are healing from a life threatening illness or injury. Through Creative Transformations, she works with people in person and online to offer cancer coaching, an Art as Therapy program, workshops, and this weekly blog. Check out the individual packages. Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.

Healing Self 0 comments on Compilation of our greatest hits… a blog review

Compilation of our greatest hits… a blog review

Hey all! It happens to be a school vacation week, and I am taking some time with the family. I have been looking through the blogs that I have written thus far, and I thought this week I might highlight a few of my favorite ones.

As I look forward to planning an editorial calendar, I would love to hear from you about questions or concerns you would like to see me address.  You may comment below or send me an email.  Let’s connect!

Healing the Body: Milestones. Anniversaries, & how the body reminds us

Healing the Mind: For when you feel left behind

Healing the Spirit: The dance of the infinite and finite following a cancer diagnosis

Healing the Self: Rebuilding self-confidence following a cancer diagnosis

Healing via Creativity/Survivorship: Digging out from the aftermath of cancer

Until next week,

Stephanie

– Stephanie McLeod-Estevez, LCPC, is an art therapist and breast cancer survivor, and a former oncology counselor at the Dempsey Center. She began Creative Transformations to help others who are healing from a life threatening illness or injury. Through Creative Transformations, she works with people in person and online to offer cancer coaching, an Art as Therapy program, workshops, and this weekly blog. Check out the individual packages. Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.

Healing Self, Healing Spirit, Intimacy and Parenting 0 comments on When the waves of grief come…

When the waves of grief come…

As we have identified, no one goes through cancer unscathed. Recently, this has been coming up in a number of different ways- personally, it is seeing the lingering impact on my youngest son who was 5 and starting kindergarten when I was diagnosed. Knowing that I couldn’t fully protect him from that experience- and the lingering stress that follows, is something that weighs heavy on my heart.

Another way that it has come up is related to survivor guilt.  From my perspective, survivor guilt manifests from the experience of watching people we love go through cancer treatment and/or having them die from cancer.

Just like someone who walks away from a plane crash, we wonder why were spared and they were not… we feel helpless to soothe their loved ones… we feel badly when we are not fully grateful… the list goes on and on.

Yet, we are tribal people and we need the connection to others who have been there… being connected is a crucial component of healing AND it also asks us to confront how unjust life can be, how little control we have over outcomes, the mortality of others and ourselves…  As Robert Neimeyer wrote:

We are wired for attachment in a world of impermanence. How we negotiate that tension shapes who we become.

To be fully alive and present, we need to find ways to allow ourselves to process the many losses that come along with life. Death is certainly a loss and a grief process that we see as valid, although we frequently underestimate the time needed to fully grieve. All endings, not just death, have components of grief and loss, in part because when something comes to an end, we reflect upon the experience and the thoughts, feelings and expectations we had about it.

Grieving when you are also experiencing survivor guilt becomes more complex, because we share the common experience of having cancer and thus inevitably we think about ourselves.  The tension that comes from trying to do both can cause us to shut down, withdraw, become overwhelmed, judge ourselves… and this tension can easily go unnoticed and underground.

The taboos about talking about death and dying, the difficulty of honoring our own process and needs when we know someone “has it worse”, our tendency to compare and to ruminate about things that are out of our control…

All of these things add to the shroud of silence that often accompanies the waves of grief. For the waves of grief inevitably come with the gift of life.  As the quote from Havelock Ellis in the meme above reminds us:

All the art of living lies in a fine mingling of letting go and holding on

In order to walk through our survival guilt, our grief, we need to find small ways that we can practice letting go and holding on. When we do this, we find the ability to release the tension that keeps us stuck and unable to be fully embody what we have been through. When we do this, we begin to find the ability to be alive and connected to ourselves and to those we love, learning to surf the waves despite the challenges we and our loved ones face.

Tell me, what is a small gesture or act you can do right now to practice letting go and holding on? I’d love to hear it, shoot me an email, send me a PM or write below. XO

– Stephanie McLeod-Estevez, LCPC, is an art therapist and breast cancer survivor, and a former oncology counselor at the Dempsey Center. She began Creative Transformations to help others who are healing from a life threatening illness or injury. Through Creative Transformations, she works with people in person and online to offer cancer coaching, an Art as Therapy program, workshops, and this weekly blog. Check out the individual packages. Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.

Healing Self, Survivorship 0 comments on The art of self advocacy

The art of self advocacy

This topic feels like a natural follow up to last week’s blog, Cancer is not just a medical problem. But before we get into the subject, I just want to take a moment to share a personal celebration with you…

This is my 100th blog!!!!

I started Creative Transformations 2 years and 6 days ago (more or less!), and when I began I knew that in addition services I offer, I wanted to write a weekly blog that would explore the emotional healing process of cancer survivors. It feels really good to know that thus far I have met my goal, and that hopefully these blogs have had a positive impact on you, my readers. Thanks for being there and for celebrating this moment with me.

Self advocacy is an important part of cancer treatment because cancer treatment is an ever evolving process, and it involves the expertise and input of multiple providers. Research and statistics about treatment approaches and efficacy are important, yet ultimately we are all unique and thus we are the experts on our body, mind, spirit and sense of self. While we may feel trepidations about it, we hold the role of expert at the table, and hopefully your treatment team embraces that.

Yet being an advocate for yourself is often easier said than done.  Here are some common barriers that complicate this process:

  • the stress level that comes with having a cancer diagnosis– the shock, dismay, anger, fear that we feel impacts our ability to process information and communicate our thoughts, feelings, and concerns
  • the whack cancer takes to our sense of self confidence– in part due to the fact that it directly challenges any notion of control that we might have felt we had prior to those awful words
  • the willingness of our treatment team to view us as an expert of our own experience– research shows that having trust in your providers is important to the treatment experience and outcome, so if providers prefer a top-down, hierarchical approach, they may be unwilling to see you as an expert on you. Sometimes we can change our team, sometimes we can’t.  This post is designed to offer guidance either way.
  • our personality traits and communication styles– for someone who is more passive, feeling able to speak up and be direct about your needs, especially when you feel vulnerable, is a true challenge when you add cancer to the mix. For those who are more aggressive, power struggles often emerge and impede clear communication and processing of the information being shared.  Even those of us who are comfortable being assertive can struggle.  The psychological reasons why will be explored below.

Beyond the above mentioned barriers, lie the underlying psychological components that often come up when someone is thinking about advocating for themselves:

  • self doubt– or trusting your instinct in the face of an authority figure
  • self worth– or believing in your right to ask questions, challenge plans, asking for second opinions, etc.
  • vulnerability– or having to tolerate uncertainty while asserting a concern, need, opinion, etc.
  • feeling overwhelmed– this is an overarching feeling coming from many angles, but one particular cause of concern that is directly related to advocacy is the necessity of being able to process and understand the information related to the disease and treatment, while also needing to make major life decisions that are incredibly time sensitive
  • fear of offending, angering or risking the relationship with your provider, someone who is essential to your survival and wellbeing– this is especially challenging if you do not have a good support system and/or there is limited choices for providers in your area
  • guilt or shame about having cancer in the first place, especially if we feel like our own choices/actions were “responsible” for creating the illness

And so forth.  Just like a reality show, it always looks easier from the viewpoint of the spectator, and thus can further impact our ability to be our own advocates.

This doesn’t mean that it is hopeless at all, it just highlights the importance of seeking support ASAP. Local cancer community centers, the social worker connected to your treatment team, therapists and coaches who specialize in cancer, are all options to consider for getting support.

As a cancer coach, the impact of my knowledge and personal experience always helps to ground my clients, and together we craft a plan to build the muscle of self advocacy.  I know it can get old to think of cancer as a transformative experience, but I do see it time and time again. While we may not have asked for it, celebrating how we become stronger in the face of adversity is important.

– Stephanie McLeod-Estevez, LCPC, is an art therapist and breast cancer survivor, and a former oncology counselor at the Dempsey Center. She began Creative Transformations to help others who are healing from a life threatening illness or injury. Through Creative Transformations, she works with people in person and online to offer cancer coaching, an Art as Therapy program, workshops, and this weekly blog. Check out the individual packages. Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.

Healing Self 0 comments on When cancer impacts your connection to the activities you love

When cancer impacts your connection to the activities you love

This topic of feeling like you have lost yourself after being diagnosed and treated for cancer is a big one.  It’s one of the top reasons why people seek my services.  It deserves to be fully explored, today we are going to unpack how it impacts the connection to the activities we love.

When you think about where you are today, how does it compare to life “B.C” (ie before cancer)? Taking stock of the ways in which we have grown is valuable, as it helps to keep us feeling empowered… yet we must also allow ourselves to acknowledge the various struggles and losses in order to heal emotionally.

Prior to having cancer, I was a Zumba fanatic. I used to go multiple days a week, and my body craved the workout that it gave me. I felt strong and alive with the workout.

What I found interesting was 6 months prior to my diagnosis, my love of Zumba began to wane. Initially I chalked it up to wanting something new in my workout, which was probably a part of it. Mostly I think this began to happen because I was starting to get sick, because the Triple Negative tumor was rapidly growing.

I still attend Zumba, but it is not quite the same. I find that even though I continue to exercise on a regular basis, I can’t quite seem to reach the oomph that I once had. Perhaps it is because my focus is shifting to newer needs post cancer, but somehow it feels deeper than that.

This reminds me of a conversation that I had with a male cancer patient, who had been a full time artist until his diagnosis. His eyes were teary as he described how he can no longer go into his studio. This shift happened in part because he associated his studio with hearing that he had cancer, but I think that it also may have been related to how cancer impacts our identity and our ability to do things as we once did them.

Why is it that cancer survivors find it hard to reclaim the activities we have loved? When we love something it is often a part of what brings meaning into our lives.  We experience joy, triumph, connection, accomplishment, purpose.  Doing something that we love creates a connection to feeling alive.

Facing cancer means that on some level, conscious or not, we are facing the four universal fears: the fear of dying, the fear of being alone, the fear that life is meaningless, and the fear of losing our freedom. Engaging in activities that we love would seem to be the antidote to facing these fears,  yet for most of us we need to process what has happened in order to re-engage with life again.

We need to process it, because confronting the universal fears are not something that just turns off.  These fears ask us to confront the deepest vulnerabilities that life has to offer.  In this regard, the activities and people that we love can paradoxically remind us of the universal fears because they represent that which we stand to lose.

If you want to be able to reconnect with what you love, then you need to find a way to accept and process what you have been through.  We cannot fully have one without the other.  This is one of the reasons why the emotional healing process from cancer is so tricky.  To learn more about PTSD post cancer diagnosis, read this blog I wrote: PTSD and the cancer warrior.

As Pema Chodron reminds us:

The next time you lose heart and you can’t bear to experience what you’re feeling, you might recall this instruction: change the way you see it and lean in…we can choose to stay present and awake to our experience, not rejecting it, not grasping it, not buying the stories that we relentlessly tell ourselves.

I realize that this is much easier said than done. No one is fully equipped to face the universal fears. It is why this resides at the heart of my work, together we can find a way to walk through the broken shards, to allow them to be witnessed and released, to find our way back to authentic joy, contentment, and to reclaim, adjust, release and discover activities that bring fulfillment.

– Stephanie McLeod-Estevez, LCPC, is an art therapist and breast cancer survivor, and a former oncology counselor at the Dempsey Center. I began Creative Transformations to help others who are healing from a life threatening illness or injury. Through Creative Transformations, I work with people in person and online to offer cancer coaching, an Art as Therapy program, workshops, and this weekly blog. Check out the individual packages I offer. Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.