Healing Self 0 comments on For the love of Libby

For the love of Libby

Today is Mother’s Day in the US, a day which can be bittersweet for the cancer community. As a cancer survivor with children who lost my own mom from cancer in my mid 20s, I have experienced the highs and lows that this day brings. I am sending out a virtual hug to all of my fellow survivors who have lost their moms, who have lost the ability to become a mom, or who fear that they will leave their own children far, far before they are ready.

Libby was my mom’s nickname, a nickname which really captured the warmth of her spirit. She was adventurous, passionate, a conservationist with a stubborn streak. She taught me many important values, she was always supportive, and she always challenged me to figure stuff out for myself. I recall how frustrated I used to get when she would make me get the dictionary to look up how to spell a word, rather than providing me with the answer.  Although that is a rather small example, it certainly was representative of how she taught me to be independent and capable of solving problems with guidance.

This year will be the third time I have participated in the Tri for a Cure, a local, all female triathlon that raises money for the Maine Cancer Foundation. When I was thinking about team names, For the Love of Libby. jumped into my mind. While she has been a part of each of my races, it felt so appropriate that this year I would focus my efforts exclusively in honor of her memory. After all, for many of my fellow cancer survivors, our attention is often focused on all of the wonderful people we know who have or have had cancer. It is our nature to feel deep empathy for the ones we love.

Life is frequently unfair, a diagnosis like cancer takes away our innocence and asks us to face the unthinkable. I would give anything to have more time with my mom, yet as I follow in her footsteps, through motherhood, through cancer, I realize she continues to guide me forward, through the lessons and memories she embedded into my essence.

I could not be more thankful for how she continues to show up.

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.

Survivorship 0 comments on The elusive nature of post cancer treatment solutions

The elusive nature of post cancer treatment solutions

When I was at my chemo teach, I felt overwhelmed by the information about the toxic, life saving, medication I was signing up for, AND I recall feeling this sense of- ‘WOW- they have thought of everything’. You know…

Constipated? Take stool softners

Nausea? Take Ativan, Zofran, Compazine

Can’t sleep because you are too anxious about the fact you have cancer, too nauseous, in pain, hyped up on steroids? Take Ativan, melatonin, listen to guided meditations…

No white blood cells? Take Neulasta or Neupogen

Chemo shredded your red blood cell count? Have a blood transfusion.

The list was long, the solutions were concrete, and at each appointment your treatment team surveyed you about the most common side effects, concerns, red flags that your body was not managing the treatment well.  Your blood work told the story of how well your body was coping with everything. Carefully monitored, hopefully you had a sense of safety even though you were facing a life threatening situation.

There is nothing fun about being in active treatment and the number of appointments you have feels like an unending process of being poked, prodded, and evaluated. Normalcy seems like a thing of the past, yet when treatment ends, you don’t just walk back into life as it was. This is likely something you are somewhat prepared for, as it is a common point of discussion in the cancer community.

What I was not prepared for, and I am certain that I am not alone in this, was that unlike the beginning of treatment, the notion of concrete problems and solutions seemed to evaporate. Nothing seemed to be clearly plotted out, beyond follow up medical appointments and tests.

My providers were caring and responsive if I brought up a concern, but they no longer seemed to have it all figured out. Their uncertainty when coupled with the fact that now I needed to not only process what had happened to me, manage the uncertainty I felt about the future, pick up the pieces of my life, was unnerving.

There was a list of areas to address on the survivorship plan, such as: nutrition, exercise, physical signs to monitor for signs that the cancer had recurred, and encouragement to do so. Yet the tone had changed dramatically- ie super generic rather than driven by identification. This left me with that feeling of being stranded all alone in a boat with oars that may not be strong enough to last the journey back to land- if I could even figure out in which direction that land might be.

I loved my treatment team, and I still do, but as I did make my way from being stranded to finding land once again, it became more and more clear to me what the issue was. My providers are medical experts, they are brilliant when it comes to diagnosing and treating cancer. I refer people to them all of the time.

But the members of my treatment team are not mental health experts, and therefore are not equipped to be our only guides through post treatment life. Post treatment life has short and long term physical consequences that cancer treatment brings, yet it is the psychological, spiritual and emotional challenges that often linger the longest.

Part of the challenge of post treatment guidance is the fact that we are all unique, and therefore are all uniquely impacted by the experience. The side effects of most medical interventions are well known and therefore much more predictable, lending them to more concrete solutions.

My years of practicing psychotherapy helped me to craft a map for healing, and I have used that experience to create tools that others can use to understand their post treatment needs and to build their own plan. I will soon offer this assessment tool to my community and a webinar- Back to Life, Back to Reality: Decoding Cancer Survivorship, in which I will guide the group through identifying and creating a personalized post treatment plan. Stay tuned- when I am ready, I will announce it on the website and social media links.

Until then, hang in there! Solutions may not always seem as concrete or easy to identify and we may need to come to terms with things that cannot be changed. Reaching out for support before we get to the ‘can not take it one more second’ zone is one thing that you can do.

-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 Body, Survivorship 0 comments on The potentially bad news that turned out good so don’t worry about, ok? Next!

The potentially bad news that turned out good so don’t worry about, ok? Next!

Raise your hand, or even better, comment below, if you have experienced the following scenario…

You are at a follow up visit to hear results following a procedure- scans, biopsy, or surgical interventions, like having your boobs taken off to remove cancer or reduce the likelihood of cancer growing.

You are likely a little anxious about what will be revealed- even if you are a chronic optimist.

The doc delivers the news with a caveat… everything’s fine BUT…

For me, it was hearing that the neoadjuvant chemo had destroyed the cancer we knew about, and that Stage 0 DCIS was found in the non-cancer boob that was removed due to my mutant BRCA2 gene. This info was quickly followed by reassurance that I should not worry about it because what was done (ie mastectomy) would have been the recommended intervention.

This blog is not meant to be a criticism of doctors, PAs, and NPs who deliver the news. I trust that they are all well intentioned when they try to minimize our distress by delivering the good news that the potentially bad news has been taken care of. I get it and still the impact is the same. The person left sitting with the news is shell shocked, trying to process what feels like yet another betrayal by our body in addition to a reminder of how closely we walk to the edge of illness and our mortality.

There are some very tiny tweaks that I feel providers could adopt that would make us transition along with them to the “so don’t worry about it” frame of mind. But since I am not sure that providers are going to read them, you might copy down this list somewhere to help you advocate for yourself if you are experiencing a whiplash moment at a medical appointment.

  • delivering the news without the medical jargon initially- because those labels scare the pants off of us
  • asking how we feel about the fact that something unexpected was detected (ie no minimizing even if it is to try to keep us feeling more optimistic)
  • reflective listening to make sure that we understand what was said- because again it is hard to fully listen when we are taken by surprise, again.
  • having a medical staff member, like a nurse, do a follow up call to check in and make sure that there were no further questions (and since this may be you, calling them, I just want you to know that asking for what you need is so important- because when left to our own devices the stories we tell ourselves can become very dark)

Sending out some good juju for anyone who can relate to this blog.  You are not alone.

– 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.