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.

 

Healing Spirit, Survivorship 0 comments on Finding the light within

Finding the light within

One of the things that gets many of us through cancer treatment, is finding some reason to do it in the first place.  Yes, we are wired to seek survival, but often it is the people in our lives and/or our own purpose/life path that we focus on to get us through the worst of it.

Having something external to focus on can be very useful in the height of a crisis, it helps us to look ahead and be better able to compartmentalize that which we have little control over in the present.  But what happens when what we are focusing upon begins to shift, crack or even disappear from view?  Cancer treatment takes a big toll on our support system and often impacts our capacity to function in our purpose or life path.

When we feel that fundamental shift away from our loved ones and our life path, it can be very disorienting, confusing, and isolating.  We may feel as if we are floating, unthethered from something that was secure, suddenly thrust into the deep sea of uncertainty- with no clear direction of where to find solid ground.

It’s not uncommon to feel panicky when this happens, because while cancer clearly throws a wrench into our health, we do not always anticipate the way it is going to impact other aspects of our lives.  When we start to feel this way, the goal is to find a way to support yourself through it, because as Pema Chödrön reminds us:

“Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.”

So if you find yourself in this place, try to create some distance between yourself and the panic you feel inside, through slow, deep breaths and soothing imagery. The goal is not to avoid, repress or annihilate the panic, but rather to accept that it is there yet separate from you- giving yourself and your feelings enough space for you to co-exist.

If you feel untethered from your loved ones, it may be that they themselves feel untethered as well, for to watch someone go through cancer takes a lion’s share of  courage.

Sitting with the void, sitting with uncertainty, pushes us to learn and grow.  Find the flicker of light within, and let it be the focal point, until once again you find solid ground.

– 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.

 

Survivorship 0 comments on Tips for living and working during cancer treatment

Tips for living and working during cancer treatment

This week’s blog is a link to a post I wrote for Celebrate Woman Today. The assignment was a HOW TO article on being self employed and going through cancer treatment; however, the tips I share can apply to anyone facing a significant health concern who is also trying to balance responsibilities and still feel as normal as possible.

Click here to read more- the post includes action shots of myself leading a Zumba routine while bald. Whoot whoot!  And thank you Laura, for giving me this opportunity to write for your site.

– 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.

Survivorship 0 comments on Back to Life, Back to Reality?!? Finding our way when active treatment ends

Back to Life, Back to Reality?!? Finding our way when active treatment ends

Last week I had the opportunity to attend the annual Young and Strong conference at Dana Farber in Boston.  The Young and Strong Program was created to support the emotional and physical needs of young women, 19-39, who are diagnosed with breast cancer.  The annual conference is a blend of personal stories, clinical updates and questions, opportunities to engage in experiential activities and connection.  It is a nice blend that brings together the community.

Each time that I have been, it fuels my inspiration and mission, in addition to offering a time to connect to the sisterhood no one would ask to join, yet becomes like a second family- even if you have only just met.  To stoke our resilient fires, we are well served by these opportunities to connect.

This year, one story that captured my attention was a woman who was recently diagnosed and treated for early stage breast cancer.  In an effort to assure her that her prognosis was good, the oncologist called her cancer a like a “baby” in terms of being small and that treatment would just feel like a summer project.

While the intentions may have been from a desire to help, the ramifications were anything but.  Initially, she sat with confusing feelings, trying to wrap her head around the notion that having a potentially life threatening diagnosis wasn’t a big deal.  She didn’t feel like she needed to ask for the help of family and friends, nor initially did she think she should be a candidate for receiving support services.  Fortunately, this did not prevent her from eventually engaging with the Young and Strong services, but it did take time to believe and accept that she was worthy of them.

Now that she is out of active treatment, the inevitable wall of feelings and experiences is descending upon her.  And while intellectually she was anticipating it, based upon listening to the stories and advice from fellow survivors, it is still impacting her ability to find her way through it.

There is a movement within the cancer community to try and better address the issues of survivorship, a deep desire to help.  However, unlike the various tests and tools we have to measure and dissect cancer, there is no “objective” measure for how far along someone is in the emotional healing process.  No one can take a tube of blood from your arm and come back with a diagnostic report: 5% chemo brain, 15% fatigue, 20% PSTD, 30% of triggers neutralized, 50% emotionally healed… and so forth.

Cancer treatment is not fun, but generally there is both a game plan of how treatment and it’s side effects will be managed. We can have a survivorship plan to work off from, but it is going to be a lot more comprehensive to be successful, and it requires the ability to live with a lot of uncertainty about how fully you can recover in addition to managing the fears of recurrence.

It was my experience from my first Young and Strong conference that helped me conceptualize my role in serving others who are in treatment and in survivorship.  We may never be the same again (honestly, what major life experience has ever landed you right back where you were?), but we do not need to accept that we will never “get over” having had cancer.

If you are wondering about finding your way through survivorship, Creative Transformations is offering a discussion in partnership with the MaineHealth Learning Resource Center and the Cancer Community Center on November 13, 2017.  The discussion is free and open to the public, for pre-registration, please click on this link.  If you are not able to attend yet want assistance in building your survivorship plan, I offer cancer coaching both in person and online.  Or connect to your local cancer support resource center for professionals in your area who can help.

– Stephanie McLeod-Estevez, LCPC, is an art therapist and breast cancer survivor, who works as an 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.