Survivorship | Creative Transformations, LLC

Survivorship 0

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

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 Body, Survivorship 0

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.

Healing Self, Survivorship 0

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.

Healing Spirit, Survivorship 0

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

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.