Healing Self, Survivorship 0 comments on How resistance ups the pain point with Scanxiety

How resistance ups the pain point with Scanxiety

Last week I wrote about scanxiety, and from the numbers related to how many people read it, this topic was a popular one. I think in part that it is popular not only because scanxiety creates a lot of distress for cancer survivors, but also because it is undeniably related to having cancer.

There are so many subtle ways that you are impacted by cancer, that often you might question or doubt your own intuition when those subtle disturbances bother you. One tool I can offer to begin to uncover these subtle and not so subtle disturbances is the free survivorship assessment tool, available here.

I have yet to meet a cancer survivor who was confused about the relationship with scanxiety.

This week I wanted to explore how resistance contributes to the intensity of scanxiety. It is so normal that when we have experienced something scary, painful, life altering, that reminders of what happened to us are unwelcome. It is a natural urge for you to want to avoid, deny, distract from that reminder, especially because it brings up your unfinished business with what has happened.

While you might get temporary relief from resisting the unfinished business that scanxiety stirs, in the long run if you don’t find a way to come into awareness and acceptance that it exists, it is going to reinforce the potency of your reaction. I wrote a blog about how our body, mind and spirit needs to “off-gas”, or in other words- identify, process, and let go, in order to heal from PTSD. I used the metaphor of off-gassing because there is nothing pleasant about it, but sometimes humor lightens the load. You can read that blog by clicking here.

Resistance does have a place when you are in survival mode, because it can help you compartmentalize. Like all things in life, it’s knowing when you have crossed the line from useful to potentially harmful.

To successfully navigate the trap of resistance, you need to find the counterpoint to it, which in my mind is brining in acceptance. To bridge the gap of resistance to acceptance, you need to find ways to lower your defenses while giving yourself lots and lots of support (or asking for and receiving lots and lots of support).

This is not an easy task, which means that you likely need to invite compassion into the party, because if your tendency is to try to judge, critique or control yourself through a deeply emotional moment, it’s not going to work.

I also realize that tackling the mountain by expecting myself to jump to the top of it, is not going to get the results I want. You may have no idea of how you can ease your resistance to the inevitable scanxiety that comes- and that’s OK.

Perhaps you can redirect your reflection to a different moment in your life, in which you moved from resistance to acceptance. Do you remember what you did to support yourself through it? Do you remember how it felt before, during, and after? This is going to be a trial and error period for sure, but I am a big advocate of the belief that everyone has transferable skills- you sometimes need to approach a situation from a completely unexpected angle to get the results you seek.

I would love to hear what ideas you have for sleuthing this dilemma. Feel free to comment below or shoot me an email if that is more of your style.

Until next week!

-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, the self assessment tool, and virtual workshops.  Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.

Survivorship 0 comments on Scanxiety… it’s more than anxiety… here’s why

Scanxiety… it’s more than anxiety… here’s why

If you have been diagnosed with cancer, then you are likely very familiar with SCANXIETY- the horrifying blend of anxiety and the scans that are used to diagnose, inform treatment decisions, evaluate the effectiveness of treatment, and/or look for cancer recurrence/spreading.

Yet Scanxiety is more than anxiety… it is more than a feeling of unease about the unknown.

If you have had a cancer diagnosis, the potential unknown is specific, not generalized like anxiety is. If you have had a cancer diagnosis, scans are no longer unknown, because they happen quite frequently compared to the general population.

For a cancer survivor, those scans brought tangible evidence that we have/had a life threatening illness- nothing murky to it. When someone is confronted with or witnesses a life threatening experience, they run the risk of developing PTSD. If you wish to understand that more, check out this blog I wrote: PTSD and the Cancer Warrior.

Recently I was talking with a fellow cancer survivor, who is also a mental health expert, about the possibility of doing a virtual workshop on Scanxiety, with the intention of giving attendees tools to help them cope with it. I was sharing my ideas of a potential outline, which always includes an educational discussion to offer a foundation for why I promote specific coping strategies.

As I was talking about my ideas for discussing post traumatic stress disorder (PTSD), which ultimately scanxiety is, this descriptive phrase came out of my mouth:

Scanxiety… it happens because frankly every time you have to go for a scan, it is like returning to the scene of a crime

We both stopped talking, and let that wash over us. That was it, a perfect metaphor for understanding why scanxiety is more than just anxiety… more than something you can ‘control’… it is your re-experiencing, on a very visceral level, the earth shattering moment(s) that lead to everything changing in your life. Just like the turmoil that happens to people when they return to the scene of a crime, it rattles you to the core.

Scanxiety includes replaying in your mind, over and over again, what has happened or what you fear will happen. It’s the complete zapping of physical energy as your body relives the trauma of being diagnosed and holds the tension of what this new scan will find. Scanxiety becomes the black hole that sucks the hope and light out of your life, replacing it with fear. Scanxiety leaves you wondering if you will ever be the same again.

Scanxiety can last for varying amounts of time, and often it will happen in phases. For example, I had a PET scan that should something by my chest wall- a scary place for breast cancer patients. It was not lit up like a Christmas Tree but they decided that a CT Scan was warranted.

In my mind, I stayed relatively focused, because I knew I had not been experiencing pain and I knew that scans can read like false positives. But my body had a very dramatic reaction to it, it was as if someone had sucked out all of my energy. This chain reaction of my body is an excellent example of how potent PTSD triggers are- and it persisted until I heard the “all clear”.

Scanxiety is a very real issue for cancer survivors, and addressing it takes time, persistence, and excellent support. A big piece of addressing scanxiety is allowing your body, mind, spirit and self to explore what you have been through. For most of us, that seems like a daunting task- which is why having some sort of a roadmap is so important- for this roadmap gives you an opportunity to ground yourself even in the midst of things falling apart.

You may wonder where to begin… and my response to you is, Start Where You Are, the FREE survivorship self-assessment tool that I have created. Click on this link, and it will bring you right to it.

-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, the self assessment tool, and virtual workshops.  Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.

Survivorship 0 comments on What they won’t tell you (but not because they don’t care)

What they won’t tell you (but not because they don’t care)

There were two times that the awesome NP on my oncology team warned me that I might emotionally struggle. The first was just before the third Adriamycin  (aka red devil)/Cytoxan chemotherapy treatment. She mentioned that for many breast cancer survivors this happened to be one of the hardest, not just because the side effects are more intense but also because there is still one left to go of the big guns before the “little” guns of Taxol and Carboplatin (which were not little guns at all for me). I was grateful for the heads up, because it helped to normalize the experience.

The second time she warned me about emotional stress for cancer survivors was closer to the end of the 5 months of chemo, prior to the bilateral mastectomy and radiation. She dropped a hint that many survivors found the transition to post treatment life challenging, noting that many found that seeing their treatment team less created more anxiety. She was supportive and encouraging, wanting me to be prepared and assuring me that I could call my team if I had any symptoms that made me worry the cancer was back.

But with all of the warnings in the world, no one can really prepare you fully for how isolated you can feel, especially if you are not regularly interacting with other cancer survivors. Even if you are interacting with other survivors, it still means that you are likely sitting with a lot and trying to manage it on your own.

The warnings were helpful, but what I really needed were tools to help me figure out some kind of a plan or map for healing. I did a ton of self advocacy to get connected to the providers who could help me, and most of the conversations about my symptoms happened because I started them.

My providers were responsive, but they were not proactive in helping me figure this out.

As I have been developing the services I offer through Creative Transformations, this problem, this lack of assessment from my providers, really kept me provoked. Because I knew that my training and expertise in mental health and trauma gave me a major advantage. Helped me to successfully advocate for myself. Helped me to be self aware. Helped me to know that things can get better if they are addressed.

Yet, no cancer survivor should have to be an expert in order to figure this out, because each one of us has our own unique role on this planet- we do not have to be a jack of all trades simply to be able to THRIVE.

It occured to me that as a gift to my community, I could develop a tool to help you identify how you are doing and what needs to be addressed.  The self assessment tool is now available on the website, along with its natural companion- a low cost, small group, virtual workshop called “Back to Life, Back to Reality: Decoding Cancer Survivorship”. You can check out the tool for free, it is there to help you!

They, your providers, might not be able to tell you what to expect when cancer treatment ends, but that is not because they don’t care. It takes having been there to really get it.

-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, the self assessment tool, and virtual workshops.  Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.

Healing Body, Healing Self, Survivorship 0 comments on Moving through the habits that keep us stuck

Moving through the habits that keep us stuck

When you have been through something traumatic, like having cancer, it’s common to develop habits around managing the leftovers from the experience. When you are fearing that cancer could return, it is really difficult to see constant reminders of what you have been through. Like surgery scars, missing hair, brain fog, and so forth.

Yet, if you want to really feel like you’ve moved beyond the experience of having cancer, you are going to have to address those habits at some point. While these habits might initially help you avoid discomfort, in the long run that avoidance amplifies the unprocessed pain that we have been through and can cause you to feel more anxious or depressed, rather than less.

One example that comes to mind is the story of a client who came in to experience art as therapy. She was a young breast cancer survivor with three children, someone who had been able to reach the coveted NED status- no evidence of disease. She felt appreciative of being cancer free, yet experienced a lot of anxiety about cancer coming back.

In our work together, she was able to identify how she avoided fully washing her chest, because she was afraid that she would find a lump again. We explored this through art, her experience of avoidance and fear, and I guided her to use the art to see how she might be able to support herself. Through this guidance, she was able to connect with the color yellow, as a warm, safe and supportive color.

The change was visible as she drew the yellow color around her image of anxiety and fear. Her body began to relax, her shoulders help less tension. I suggested that she bring in the energy of yellow with her the next time she showered, and she found it to be highly effective in breaking the avoidance behavior while also feeling less anxiety about washing.

It was a significant step towards reclaiming her connection towards feeling safe again in her body. The anxiety and fear that had been driving her to avoid was less dominant, allowing her to decrease the tension without having to control the outcome. Since cancer is a reminder that you don’t have total control, taking steps towards accepting that through actively supporting yourself can decrease the distress that comes as you face what is causing you fear.

Next week I am going to be releasing my free self assessment tool that I have developed to help you identify the ways in which cancer has impacted your body, mind, spirit, and self. It will come with the link to the virtual workshop: Back to Life Back to Reality: Decoding Cancer Survivorship. That is a space limited workshop, which will allow a lot of time for participants to share with one another in addition to learning how to move forward. So stay tuned!

-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 When tangible measures fly out the window… you end up on shaky ground

When tangible measures fly out the window… you end up on shaky ground

 

When you are in active cancer treatment, there is often a next step- next appointment, next blood draw, next infusion, next scan to evaluate effectiveness of treatment, next poke, next prod, next how to you measure on the scale of symptoms. Appointments, appointments, appointments. Measurements, measurements, measurements. Somedays you feel like you have hardly come up for air before you are back at the doctors again.

When you are post treatment, there is often a next step- for example the next appointment with your oncologist- but in between that moment of- “adios treatment and follow up”… well, for the most part, it’s essentially up to you.

What is really tricky about this next step is the lack of concrete tools to measure exactly how you are doing. During treatment, my doctors could be so precise about how my body was doing, the blood work told the story of how I was faring with the toxic medicine. The blood work, plus the intensity of a specific list of symptoms, provided clear information to help us make crucial decisions. Scans gave us a sense of whether or not the treatment was being effective. Going through chemotherapy was scary, yet often I felt very comforted by the close attention that my team paid to my health and how expertly they navigated the waters towards our intended destination- NED.

Post treatment life is a different beast altogether, it is not as concrete of a path, nor are their concrete tools to measure where you are, nor are there tools that can predict how far you can go exactly in reclaiming who you are. Your blood work can’t measure the emotional impact that cancer has left, which means that you have to develop your own sense of trust in understanding exactly how you are doing- because no test, no scan, will be able to provide supportive evidence.

And that is tricky, right? Because one of the most common after effects of cancer is wondering who the heck you are, and what the heck you have been through. Not only do you feel lost, but it typically erodes your sense of self confidence. And why is that? Because you have been completely thrown to the wolves, facing the four universal fears (of dying, of being alone, of losing a sense of purpose, of losing freedom) while simultaneously being reminded that you have very little control in this life.

Let’s face it, that often leaves us feeling like we are on shaky ground.

The good thing is, you are not alone. Yes, we may need to give up our attachments to having concrete evidence. Yes, we may need to give up our attachments to knowing exactly how close to “normal” we may ever be again. Yes, in order to heal, you will need to walk through the fire. And yes, in order to do that you need to have solid connections to your fellow cancer survivors, who can look you in the eye and affirm- they know exactly what you mean.

In the meantime, I am in the process of working on a free assessment tool that will be available shortly. This tool is designed to help you reflect upon the changes, challenges and raise awareness of what you might want to address to improve your health and wellness. The tool may not ever be as concrete as reading the results of your lab work, but it is a step in that direction. Stay tuned for more!

-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 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.