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.

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 Spirit, Survivorship 0 comments on Staying connected to the connections that nourish us

Staying connected to the connections that nourish us

Last weekend I had the opportunity to be an exhibitor at the YSC national summit for young women diagnosed with breast cancer. It was such an amazing experience to connect with others who have been through similar circumstances. I had a lot of meaningful conversations with attendees and other exhibitors, the energy of sharing purpose and passion is invigorating.

In this world of technology, we don’t always get the opportunity to meet face-to-face.  I am forever grateful for both technology and the ability to meet face-to-face, because both help us to decrease isolation and increase our ability to feel better, knowing that we are not alone and that many of our concerns are shared.  As the Swedish proverb reminds us:

Shared joy is double joy; shared sorrow is half a sorrow

I am still digesting the experience of being surrounded by my community, so in honor of that this week’s post is about maintaining the connection to the connections that nourish us.  Often we can’t have ongoing face-to-face time with our community, so finding a way to hold onto the experience is just as important as having it.

I like the image of a camel, a beautiful and strong animal who can store away the energy of food and water to allow it to pass through a dessert, where resources will be scarce. A camel can go a long time without replenishing its stores, yet the camel must be mindful of its needs, so that it can survive.

Taking this metaphor of the camel, can you take a moment to recall a time in your life in which you felt really connected with others.  A time in which you felt understood and in which you gave the gift of understanding.  What do you notice?  How does it make you feel?  Can you visualize (or draw) what your camel hump looks like?  What does the hump need to easily circulate this nourishing energy throughout your system?

If you happen to be one of those people who struggles to add yourself to a priority list, you may often walk a very fine line between that which is necessary for survival and that which is harmful self-depletion.  If that is the case, it is really important to work with someone who can support you in examining why this is and what needs to change in order to shift the cycle.  In my work with others, I often find it is our deep seeded beliefs that drive these actions of deprivation and depletion. If this sounds familiar to you, set up a consultation call to explore the possibility of working together.

– 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.

 

Healing Mind, Healing Self, Survivorship 0 comments on Living life between the scans

Living life between the scans

Scans… they are the bane of cancer survivors and their co-survivors.  It’s as if you can’t escape them- for they happen at the beginning of treatment, frequently during treatment, and exists as a possibility throughout the duration of one’s existence as long as you are still being monitored for cancer.  They are ordered to identify where the cancer is in the body, to examine the effectiveness of intervention, to determine whether or not it has spread, or to understand the meaning behind certain physical symptoms that indicate something is potentially wrong.

To say the least, there really is no such thing as a neutral scan.

At my last check in with my favorite NP at my oncologists office, she noticed that my onc had put it in the plan to have another PET in February.  Typically PETs are ordered for the reasons above; however, when I was originally diagnosed they did find a spot on my hip that they were never able to fully clear of suspicion initially.  The follow up scans showed that did not change, so the NP was surprised to find the order in there.  She did not remove it, but surmised that likely it was there just as a reminder to discuss whether or not it is necessary.

On one hand, I know that my onc generally follows the rule of thumb that you only scan if there are physical symptoms present.  On the other hand, this conversation caused a cascade of thoughts in my brain, such as…

  • planting a seed of doubt- am I truly feeling good?  Have I been downplaying any physical symptoms and living in denial? Can I trust my own wisdom? Am I foolish to say that there is no need to do it?  Will that decision hurt my family?
  • a stark reminder of how critical the 3 year marker is for my type of cancer- triple negative breast cancer (TNBC).  If you make it to the 3rd year with no evidence of disease, it greatly increases your chance of long term survival.  It’s not a guarantee of course, but it does add a dose of pressure to the 3rd year marker.
  • hypervigilance- I am supposed to be mindful of changes in my body, so I can be an accurate reporter for my onc?  It’s a fine balance between to paying too much attention and too little, yet there is no device on the market that can “show” you if you are “doing it right” or not.

That being said, even though cancer takes away a lot of things from us, either temporarily or permanently, we deserve to live as fully as we can “between the scans”.  It is a fundamental human right we should all cherish.

Knowing it is a right, and getting yourself there, is the challenge.  Keep in mind, this is a judgement free zone- I want to encourage you to reduce the suffering that comes along with self criticism and reap the reward of compassion by accepting yourself for exactly who you are, at all times.

We are going to experience a wide arrange of emotions as we learn to love ourselves exactly as we are.  If we reject our thoughts and feelings, we also dull our ability to receive important messages of insight and intuition from deep within.  This can lead to more anxiety, depression, or PTSD, rather than less, as well as decrease our warning system that helps us to know when we need to ask for help.

The metaphor that comes to mind is that of a lighthouse.  A beacon of protection that warns us of danger and us to safety. Even if the light is somehow disruptive, would we choose to turn it down simply to free ourselves from the annoyance? Keeping our fingers crossed that no one crashes into the rocks the lighthouse was created to protect us from? Probably not.

Yet we do need to cultivate a way of distinguishing between a true distress signal and one that is processing and letting out that which we repressed to survive.

If you need a few tips on how to begin this process of acceptance, validation, compassion and staying present, check out these posts below:

If you live in Maine and wish to learn more about living life as well as you can between the scans, I will be leading a workshop, “Living Fully Between the Scans: Finding Healing, Connection and Hope for Cancer Survivors and the Their Loved Ones” at the March 2018 retreat being offered by Caring Connections.  It is FREE and open to all cancer survivors and their loved ones.  Registration links will be coming soon!

– 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, Stephanie works with people in person and online to offer cancer coaching, a DIY Individual Art Therapy program to enhance any healing work you are undertaking; workshops; and this weekly blog. Sign up today so you never miss one by visiting our website, Creative Transformations, where you will also find the links to our Facebook, Twitter and Instagram pages.

Healing Self, Survivorship 0 comments on To thy own self, be true

To thy own self, be true

Being a cancer survivor frequently creates a deep awareness of how well we actually know ourselves.  It may begin with an intuitive sense that something is really wrong, and then assist us in continuing to push for diagnostics to understand what is happening. It may begin as an instinctual understanding of who we need on our team, or how we are going to respond to an intervention.

When I was diagnosed, I finally understood why I had been feeling so off for about 6 months.  At the time I sort of chalked it up to waning interest in my fitness activities, but even changing them did not truly lift the feeling.  The dream I had about having breast cancer is how I found the lump, but in retrospect my body had been talking to me for quite some time.

In my conversations with other cancer survivors, they share uncanny insights that they have had through the treatment process, which have often been right on.  Thus the phrase, to thy own self be true.

What gets tricky, of course, is that at some point most of us confront the challenge of distinguishing between the information that comes from our inner wisdom and the fears that cause disruption to our sense of security and self-confidence.  The turning point often coincides with slowing down enough to process what is or has happened to us, which can feel like a tidal wave.

Our innate wisdom, our gut sense, our deep knowing, truly has an unique energetic quality to it.  It is often subtle as we practice trusting it, getting stronger and stronger the more we listen to its wisdom.  For those of us who were actively encouraged to ignore our instinctual insight as a child or as an adult in a toxic relationship, reclaiming this power does take time.  It takes a leap of faith, yet what awaits us on the other side is so valuable.

This is where the therapeutic value of processing what we have been through can really assist us.  Through the unpacking and repacking of the most important moments of our lives, we can gain validation, new perspective, emotional release, and the opportunity to create a little more distance from what we have been through.  When we have distance from something, we are more able to manage our response to and understanding of what it is.

Since life threatening experiences impact us on so many levels, we often run into barriers of communicating exactly what we have been through.  Words do have limits to how accurately we can express ourselves, which is why the use of art is so powerful.  As we learn to translate the non-verbal parts of our internal experience through color, shape, and form, we frequently find both a release of what it represents and the words that validate our experience.

This process of validation brings a deeper connection to our self, our innate wisdom, and the confidence that we have lost because we have been diagnosed with cancer. Whether you choose to engage yourself through meditation, art or some other form of non-verbal experiencing is less important, than the gift of time to allow yourself to try.

As Shel Silverstein reminds us in his poem, “The Voice”:

There is a voice inside of you that whispers all day long, “I feel this is right for me, I know that this is wrong”

No teacher, preacher, parent, friend or wise man can decide what is right for you– just listen to

The voice that speaks inside

In solidarity,

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, Stephanie works with people in person and online to offer cancer coaching, a DIY Individual Art Therapy program to enhance any healing work you are undertaking; workshops; and this weekly blog. Sign up today so you never miss one by visiting our website, Creative Transformations, where you will also find the links to our Facebook, Twitter and Instagram pages.

Healing Self, Survivorship 0 comments on Cancer’s compromising positions

Cancer’s compromising positions

Yes, this is cheeky innuendo, and yes, this post is about sexuality and how the impact of cancer interventions put you into compromising positions regarding the long term side effects.

No one lines up at menopause’s or castration’s table and says “Ooo Ooo… pick me, pick me!”.

However, if you are positive for the  BRCA 1 or 2 gene mutation, this is the life changing decision that we have the privilege of making preventatively; unlike our ovarian, prostate, and testicular cancer brothers and sisters.

I know that after being diagnosed with breast cancer, I certainly wrestled with the fact that I did not get tested for genetic mutations. I had learned I was a candidate for testing at 30, but the thought that the only clear answer would be knowing I had a mutation terrified me.  Having lost my mom to breast cancer in my 20s, I was already struggling with whether or not I should have children, and that knowledge would have made it worse.  I know I am so lucky to have had the chance to become a mom.

However, while I wish I could have prevented myself from having breast cancer in the first place, I knew that I needed to take steps to prevent ovarian cancer. I underwent an oophorectomy (removal of the ovaries and fallopian tubes) the same day that I got my new boobs. I had to preserve some sense of femininity, plus decrease the number of times that I would have to cope with anesthesia brain- which is just like chemo brain.

Whether you are a pre-vivor or survivor of cancer, once you move out of the phase of doing everything you can to save your life, you tumble into the phase of having to deal with the long term effects of the decisions you had to make. This phase is further complicated by recognizing that yet again you are in a place of privilege, because not everyone makes it that far. And if you also have a sexual trauma history, that adds another layer into the mix.

Our sexuality has the potential to be the silver lining of our lives- bringing joy, intimacy, excitement, and pleasure. It can be something that keeps us going in hard times, something that stokes our fires of hope and resiliency.

Yet, so often our sexual functioning and wellness is not even broached by our treatment teams. Likely this is a combo of the taboo nature of sex and sexuality, in addition to lack of time, proper training, and understanding of resources. When our treatment team fails to check in with us, it can have a silencing effect, impacting our capacity to self advocate for information, support and intervention.

While we may never fully return to our sexual prowess because of the hormonal changes or treatment side effects, we can likely find ways of greatly improving our sexual lives. Our definition of sexual activity may need to shift and change.

The other important component of healing is our identity as a sexual being. We may feel less feminine or masculine, our fantasy world might cause us to face over and over again how our bodies have been altered. Most grapple with the fear that their partner will not find them attractive anymore, and if you are single or in a toxic relationship this fear may be amplified.

At the heart of this turmoil related to our sexual identity, is the grieving we need to do related to what we have been through and the profound vulnerabilty that we face as we test the strengths of our partners ability to accept us (current and/or future). It is one of the biggest trust falls that we face.

If you find yourself in need of addressing your sexuality and sexual well being, here is a list of professionals who will hopefully able to help you. It begins with a conversation with your providers, and hopefully ends with finding guidance that helps you reclaim your sexuality:

  • Physical therapists- pelvic floor rehab
  • OBGYN- learning how to maintain healthy tissue
  • Urologists- our male OBGYN counterpart
  • Therapists and counselors who specialize in cancer and sex therapy
  • Relaxation experts, such as meditation teachers  and yoga instructors (who can also help with flexibility, naturally)

And so forth… the point being with a supportive recovery team, we can improve our lives.  Given the fact that we are tribal in nature, making connection with other cancer survivors and taking risks to openly discuss these issues, we decrease our sense of isolation and fear that somehow we are the only ones.  Of course, once we start making those connections, they often help us find the resources we need.

 every gesture, every caress, every touch, every glance, every last bit of the body has its secret, which brings happiness to the person who knows how to wake it

-Hermann Hesse, Siddharta

– 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, Stephanie works with people in person and online to offer cancer coaching, a DIY Individual Art Therapy program to enhance any healing work you are undertaking; workshops; and this weekly blog. Sign up today so you never miss one by visiting our website, Creative Transformations, where you will also find the links to our Facebook, Twitter and Instagram pages.