Many people are unaware of how difficult it is to answer social greetings when one is in crisis. They ask “how are you” mechanically, without thinking. I’ve done that in the past. Before my experience of cancer painfully opened my eyes to the stress of social greetings. I suddenly became one of many struggling everyday to respond to “how are you”. I wrote this post to share my experience, and bring light to this unsettling gap.
Before cancer I didn’t think twice about answering “how are you”. I replied “fine” most of the time, often adding a smile. But now as a cancer patient, hearing “how are you” generates panic inside me. I can feel my belly tighten. My chest contract. My autonomous nervous system getting ready for danger. How am I going to answer this question?!
Here is an episode to illustrate. I was at the cancer center checking in for a follow up appointment, and the receptionist asked, “how are you” and paused. All of a sudden, I felt my body freeze. The first thought that popped into my head was: Shouldn’t he know that he works in an Oncology Department, and that this isn’t an easy question for cancer patients?! Instead I answered “fine”, to keep things simple. No point on lashing out on the poor man. My body, however, wasn’t satisfied with my response. And it made a point of letting me know. I felt a twinge inside my belly. And a protesting voice that said, “I’m not fine!”
While “fine” worked well for a while, after many months of living with cancer, my body is getting tired of lies. (Or is it me becoming more mindful?) Either way, it’s time to find an answer that does not make me feel disconnected from my body.
I tried different responses with various levels of success. Here is another exchange, which also occurred at the hospital. That was week three of a monthlong-daily-radiation-marathon. I ran into one of the administrators I had met the week prior. He recognized me and said, “how are you?” with a grim. That day I was definitely not fine. I was feeling cranky and depleted from the cumulative effects of treatment. The conversation went something like this:
Mindful Coping StrategiesBelow are strategies that helped me navigate the pain of social interactions during my cancer journey. Rather than closing up when I hear “how are you”, they’ve helped me stay open, and engage in conversations I used to shy away from.
1. Use an unexpected word. A response that works well for me these days is “frazzled”. This word came to me in the middle of the night. I tried it subsequently, and found it worked with both friends and strangers. For people who don’t want to know, or don’t have time to listen, it passes the acceptability test. On the other hand for friends who want to know, and have time to listen, it gives them an easy opening to ask “what do you mean by frazzled?” (It’s a singular response). Then I can explain that it’s a strategy that enables me to answer “how are you” with honesty, while paving the way to a genuine conversation. I like the the peculiarity of world frazzled. It’s different, vague, and descriptive at the same time. And it pretty much describes how I feel when I hear “how are you”!
2. Reframe the question. Take control of the situation and lead it to where it suits you. “It would be easier for me to answer ‘how are you today?'”, I venture to say, “I find it less overwhelming”. Reframing the question gives me an opportunity to reply: “Today I am feeling ____ “. Adding “today” or “in this moment” normalizes the situation for me. It’s not as big of a question to answer. It also prompts me to connect to the present moment. And in some moments, I actually feel fine. Savoring the good goes a long way towards healing one’s body. (But don’t go assuming that I’m happily sailing through cancer, because it aint definitely easy!)
3 . Radical honesty. Share with others that “how are you” is a hard question to answer as a cancer patient. My personal experience has shown me that this strategy is only beneficial in a small number of cases. With trusted people who have the time to listen, and the skills to hold pain. Otherwise it can be painful, as the above examples illustrated.
I hope that sharing my below-the-surface-experience will be useful to some of you. Perhaps it prompted you to reflect on your own experience or to the deeper meaning of social greetings. Thank you for reading. I look forward to reading and responding to your comments.
About the Author: Sylvie Leotin
Sylvie Leotin is an entrepreneur, writer, speaker, consultant, and polymath. A gold-medal ballerina and computer scientist, she combines a unique breadth and depth of expertise, with a keen eye for connecting the dots between disciplines, thoughts, people and ideas. Learn more about her at sylvieleotin.com.
Tamoxifen is often used to prevent recurrence of hormonally driven breast cancer after surgery; however, it can cause significant side effects that adversely affect the quality of life of patients. It has previously been thought that a lower dose of tamoxifen (5 mg) might be as effective as the standard dose (20 mg), but with fewer side effects. In a phase III clinical trial of 500 women with ductal carcinoma in situ (DCIS), lobular carcinoma in situ (LCIS), or atypical ductal hyperplasia (ADH), patients were randomized to receive low-dose tamoxifen (5 mg daily) or placebo for three years after surgery. At the follow-up period of 5.1 years after the completion of the three-year treatment period, there were 14 recurrences in the low-dose tamoxifen group versus 29 recurrences in the placebo group. Most recurrences were invasive breast cancer (stage I or higher). The number of recurrences in the low-dose group are comparable to prior studies with standard-dose tamoxifen. The main conclusion from the study was that low-dose tamoxifen is a valid treatment option for preventing recurrence in women with ADH, LCIS, and DCIS. It is important to note that this study cannot draw any conclusions about the effectiveness of low-dose tamoxifen as a treatment option for women with invasive breast cancer.
Highlights from the 2018 San Antonio Breast Cancer Symposium
By Anh Diep, VMD, PhD Candidate, and Erika Bell, PhD, Manager of Medical Information, Bay Area Cancer Connections
In early December 2018, thousands of researchers from across the world convened in San Antonio, Texas, for the 41st Annual San Antonio Breast Cancer Symposium. This five-day symposium brought together experts in basic, translational, and clinical research; clinicians; and patient advocates to present and discuss advances in breast cancer research and treatment. As progress in breast cancer continues, the challenges remain: to personalize treatment based on characteristics of the cancer, to minimize over- and under-treatment, and to maximize quality of life. This article highlights several of the talks from the 2018 symposium that are most likely to have a direct impact on the clinical care of breast cancer patients. For access to complete symposium resources, including abstracts, posters, and presentations, visit sabcs.org.
Approximately 10% of breast cancers are due to an inherited genetic mutation. Not all women are referred for genetic testing following a breast cancer diagnosis. This is because many doctors follow the National Comprehensive Cancer Network (NCCN) guidelines, which recommend testing only those individuals who meet specific high-risk criteria. However, a new study suggests that current guidelines miss nearly half of people with hereditary mutations.
The study included 959 people who were diagnosed with breast cancer and had not yet had genetic testing when they entered the study. Of the 959 individuals, about half of them met the NCCN guidelines criteria for genetic testing, while the other half did not. As part of the study, all of the participants underwent genetic testing with a gene panel that checked for mutations in 80 different genes. The researchers found that among the group who met the NCCN guidelines, 9% of them had a genetic mutation identified by the test. Among the study participants who did not meet the NCCN guidelines, 8% had a genetic mutation identified by the test. Had these people not been involved in the study, it’s likely that they would not have been referred for genetic testing, and their mutation would not have been identified.
As a result of these findings, the authors of the study propose that all people diagnosed with breast cancer undergo genetic testing with a gene panel. They note that “expanded panel testing can provide information that may present additional treatment and follow-up options, including clinical trials, for all patients with breast cancer, not just those who meet testing
Of note, current NCCN guidelines recommend that all women diagnosed with ovarian cancer receive genetic testing.
To read the full study, click here: Underdiagnosis of Hereditary Breast Cancer: Are Genetic Testing Guidelines a Tool or an Obstacle?
To view current NCCN Genetic Testing Guidelines, visit: nccn.org
Our on-site Boutique is a hidden gem in the Bay Area as it provides hundreds of wigs, hats, scarves, bras, breast prostheses and swimsuits at absolutely no cost!
All of these supplies are graciously donated and our trained staff and volunteers are on hand to assist with any fittings to see what you like. After your visit, take home a wig tote, complete with a wig stand, shampoo and conditioner, brush, and wig care tips and resources. As an added bonus, a nearby salon can assist clients with head shaves or cutting wigs free of charge.
If you have any questions before visiting, call our our Helpline at (650) 326-6686 and we can check our inventory. And if you are interested in donating new or gently used items, feel free to bring them by during business hours or mail them. In return, we will provide you with an in-kind donation form.
I find it inspiring to hear from people across the globe about their stories of family caregiving. Whether it has personally touched them or they know of others going through it, the stories are heartwarming and heartbreaking. Quite often the difficult things to hear are the effects of the caregiver's life.
Our team at Breathing Spaces is on a continual quest to seek out preferred resources, and in
2019 we are rolling out new additions to our program that we are excited to share with you.
Through our continued relationships with valued affiliates like Bay Area Cancer Connections, we bring you more information and support for both you and your loved one.
Bay Area Cancer Connections supports anyone affected by breast or ovarian cancer with
personalized services that inform and empower. I personally know the people that work
tirelessly at the center to continue their efforts in supporting a community in much need of the
services that are offered. Recently, a close friend of mine went through breast cancer, and my
referral to Bay Area Cancer Connections made a tremendous effect on her journey. The
kindness and information that they shared is something my friend continues to speak about.
Bay Area Cancer Connections has a group of volunteers that work tirelessly to help support this
vital resource. One of them, Iva Petrovchich, is a nursing student at UCSF and through her
training and volunteering has been exposed to the effects that family caregiving can have. It
touched me to see a flyer that she put together for one of her classes as it gave light to so many things caregivers need to be aware of.
Regardless of who you are caring for, I hope this inspires you to learn more and tend more to
your self-care. You make such a difference in your loved one's life; I hope you'll remember to take good care of yourself, too.
This blog was written by Cyndi Mariner of BACC partner Breathing Spaces. To learn more about the services Breathing Spaces offers, click here.
Exercise and rehabilitation play an integral role in helping patients return to work and regular activities after cancer treatment. In May 2018, the Clinical Oncology Society of Australia (COSA) issued formal guidelines recommending exercise as an integral part of cancer treatment. They join organizations such as the Academy of Oncology Physical Therapy, the Academy College of Sports Medicine (ACSM), the National Comprehensive Cancer Network (NCCN), and the American Society of Clinical Oncology (ASCO) in further recognizing the need and benefit for exercise and rehabilitation to be a comprehensive and integral part of cancer treatment.
COSA calls for:
The lead author of the statement and Chair of the COSA Exercise and Cancer Care Group said the evidence to support exercise as an integral part of cancer care was “overwhelming.” She went on to say, “If we could turn the benefits of exercise into a pill, it would be demanded by patients, prescribed by every cancer specialist and subsidized by government. It would be seen as a major breakthrough in cancer treatment.”
Evidence on Benefits of Exercise During and After Cancer Treatment
There is strong evidence that supervised exercise is a safe and effective intervention to help counteract many of the adverse physiological side effects of cancer and its treatment. To date, we know that exercise shows the greatest benefits in quality of life, physical function, reducing cancer-related fatigue, and maintaining muscle strength and endurance during treatment.3 4 There is emerging research to show that exercise can also help with chemotherapy-induced peripheral neuropathy and can decrease the risk of recurrence.
Patients often wonder if exercise makes a difference. The answer is yes! If you are looking for motivation to exercise following cancer treatment, Michelle Holmes and her colleagues studied almost 3,000 women with early-stage breast cancer. They found that survival rates improved by 26 to 40 percent in those who walked 3-5 hours per week at 2-2.9 mph as compared to less active breast cancer survivors. The authors found that the benefits of exercise were independent of the participants’ prior activity level.5 Participants ranged from athletes to completely sedentary individuals before treatment, and they all were able to impact their survival rates simply by walking several times per week.
COSA’s recommendations for exercise closely mirror the ACSM Exercise Guidelines for Cancer Patients and Survivors and recommendations for the general population.7 They recommend that all cancer patients should avoid inactivity and return to physical activity as soon as it is safe to do so with the goal of:
It doesn’t come as a surprise that the authors of this statement found that only 20 to 30 percent of people surveyed met the aerobic exercise guidelines and only 10 to 20 percent met the guidelines for strength training.
It would be naive to think that there should be a one-size-fits-all approach for patients. As with any other therapy or intervention, exercise should be personalized for a person’s physical and psychological needs. COSA agrees that exercise recommendations should be tailored to the individual’s abilities depending on health status, treatment-related adverse effects, age, and level of impairment. These guidelines can be used as an “ideal” in designing and implementing exercise programs for patients and a goal for patients to use when beginning to return to exercise.
Cancer Rehabilitation and Its Role in Cancer Treatment
It is often confusing for patients to determine how to regain function and strength during and after treatment, and some are reluctant to ask their medical team for advice. Even when medical professionals tell patients to “get back to exercise” or “get back to your normal life,” it often feels impossible with side effects such as fatigue, pain, swelling, decreased endurance, and limitations of movement that might be present. Several studies have found that patients have a series of unmet needs when it comes to exercise and rehabilitation. Thorsen et al. evaluated survivors across different cancer diagnoses and found that 63% reported the need for at least one rehabilitation service. They also reported that patients were often not referred for services, with 40 percent reporting unmet rehabilitation needs.8 Cheville et al. studied over 150 women with metastatic breast cancer and found that 92 percent of them had at least one physical impairment that warranted rehabilitation services. Despite the need, fewer than 30 percent received care.9 In short, we are not meeting the needs of patients for exercise and rehabilitation during and after treatment. People need advice and support from professionals to be able to move forward in a safe and effective manner. This is where cancer rehabilitation comes in.
It is important to distinguish between exercise and cancer rehabilitation. Cancer rehabilitation will likely include therapeutic exercise as part of a holistic treatment plan, but is far more involved. Cancer rehabilitation addresses physical, psychological, and cognitive impairments in an effort to maintain or restore function, minimize the side effects of treatment, maximize independence, and improve quality of life. Cancer rehabilitation can address a litany of short and long-term side effects from cancer and its treatment including, but not limited to: weakness, pain, balance issues, neuropathy, swelling, fatigue, lymphedema, sexual dysfunction, range of motion and flexibility issues, decreased endurance, and difficulty performing activities of daily living.
Evidence supports using a proactive approach to prevent and mitigate many of the above concerns.10 We know that cancer treatment causes late and longterm side effects for patients and we know that the side effects can result in lost productivity at work and decreased ability to perform activities of daily living at home.11 12 Ideally, patients can be seen early in the process in order to enable early detection of and intervention for physical impairments known to be associated with cancer treatment.7 Incorporating cancer rehabilitation into your cancer treatment at an early stage can be vital to return to a pain-free and active lifestyle.
What does this mean for you as a survivor? Be an advocate for your health and for your body. By recognizing early symptoms of impairments and bringing them to the attention of your medical team, they can more readily intervene and refer you to someone who can help.
Finding Ways to Incorporate Exercise During Cancer
If you are still in treatment and cleared for exercise, be patient with yourself. Exercise science in oncology supports the idea that doing something is far better than doing nothing. Start with short bouts of exercise and pay attention to how exercise impacts your body. I recommend that patients have several different plans, depending on stage of treatment. Factors such as blood counts, fatigue, pain, and neuropathy can all determine how much you feel you can do on any given day—you might limit yourself to short walks around the house on tougher days and save more ambitious plans for days when your blood counts are stabilized and your fatigue is slightly better.
If you are ready to return to exercise but need support, there are lots of options out in the community. Among them, Bay Area Cancer Connections offers several classes that are free of charge including Yoga for Healing & Recovery, Healthy Steps, and Pilates Matwork. Living Strong Living Well is a free, 12-week, small-group strength and fitness training program designed for adult cancer survivors that has locations at YMCAs throughout the Bay Area. Pink Ribbon at the PJCC in Foster City provides personal training specifically designed to enhance recovery for breast cancer patients. There are many more options out there to help support your return to exercise.
If you love to dance, hike, do yoga, or garden, then find a way to make these activities a priority. It is more important to find something that you will stick with than to try to adhere to something you really don’t like to do.
It is clear that exercise is one of the keys to returning to a healthy, pain-free, and active lifestyle. Be proactive and seek out professionals in your community who are trained to help. When you are ready to transition to community-based programs or to independent exercise, find a friend or a partner to do it with you. You are much more likely to take a walk or go to the gym if you know someone is there waiting for you. Even in the best of times, it is easy to let exercise fall off the list of priorities. Remember that exercise is one of the keys to getting back control of your health. You can do it and you do not have to do it alone.
Written by Sharon Leslie, PT, DPT
By Michelle Esser, Senior Program Manager, Research and Advocacy, Young Survival Coalition
A new law recently passed by Congress and signed by President Trump has been making headlines over the past few months. This “Right to Try” law allows terminally ill patients to request an investigational drug that has completed Phase I trials directly from a pharmaceutical company. A physician must support the request and forty states already had a similar law. At first glance, this sounds like a great idea and law. However, is it?
Let’s take a step back to what is called the Expanded Access or Compassionate Use program currently in place at the FDA. Compassionate Use also allows a patient to request usage of a medicine not yet FDA-approved, but in clinical trials. The request goes straight through the FDA, which, if it approves the request, provides guidance on how to administer the drug and what information it already knows about its safety and potential side effects. While the FDA has been criticized as being slow and not granting many requests, data has shown that the process typically only took 24 to 48 hours and that over 90% of requests were actually approved by the FDA. Once the request clears the FDA, it is up to the pharmaceutical company to make its decision.
So what is the difference under the Right to Try law? Under this new law, the FDA is out of the process. Patients, with their physician’s support, can request the drug directly from the pharmaceutical company. The FDA’s knowledge of other clinical trials using this drug, or safety and administering suggestions will not be shared.
The concern is that this process could ultimately hurt patients. Not only is FDA information not shared, but Right to Try could open the door to companies more concerned about selling or promoting their drug than with patient safety.
As it is not clear under this new law who will pay for the drug or the administration of that drug, images of the so-called “snake oil” salesman comes to mind. Could a company charge an exorbitant price for an unproven drug that could do more harm than good? It really isn’t clear.
Of course, as with the Compassionate Use program, under the Right to Try law pharmaceutical companies can say no to the request. There are a variety of reasons they may do so, including the concern that providing the drug outside the context of a clinical trial could impact the trial results. Ultimately, they can say no for any reason.
If you are a patient in need of a new drug, which appears promising in early clinical trials, what should you do? There is nothing preventing you from making your request under both the Right to Try law and the Compassionate Use program. Given the FDA guidance which can be provided under Compassionate Use, it may be worthwhile to start there. If you proceed under the Right to Try law, have some frank conversations with your doctor about what is known about the investigational drug. What are the potential side effects? What clinical trial data already exists? What costs may you incur?
Hopefully, these requests made under the Right to Try law are documented so we can see if concerns about patient safety are warranted, and craft regulations to implement the law in a way that keeps patient safety in mind.
For more information:
A recording of YSC’s Facebook Live “Right to Try” presentation with Holly Fernandez Lynch from the University of Pennsylvania is available here.
Information on Expanded Access (Compassionate Use) from the FDA is available here.
Disclaimer: The views expressed in this article are those of the authors and do not necessarily reflect those of Bay Area Cancer Connections. It is not considered comprehensive and is intended for informational purposes only. This information does not substitute for medical care, and should not be used for the purposes of diagnosis or treatment. As each medical condition is unique, we strongly advise you to consult your physician with questions about your own situation, or about any of the information provided as it may relate to your specific case.
When my life gets on overload (raise your hands with me on how many of you find yourself in that position), my brain seems to disappear. I have a thought, and in a blink, something else comes up, and I race to find the idea I had because it disappeared so quickly. Blink. Gone. It can be SO exhausting.
So I’ve found that using simple meditation techniques (much like the ones we offer for family caregivers) can help to pull me out of the stress, pull me back into the ‘present’ moment and out of the frustration. I use them in so many situations, and it helps me out a lot. What tends to happen if you forget something; you start getting riled up about why; “If only so much weren’t going on, if only I had time to myself…” …..etc….etc….etc….then you’re putting up a mental block. The techniques really can brush those away, and I find they help with peace of mind and clarity. And at times that idea pops right back in.
There are other ways to keep track of things that come up that I use as well. I tend to stay away from electronic devices as much as possible. My job is spent communicating, writing, talking, researching so I spend a lot of time on them. So even though I can make notes on my phone there is something clear and decisive about a list, on paper. You’re able to cross things off and can easily jot them down without getting pulled in another direction. So when I’m in the middle of something, and a thought pops up, I write it down quickly and go back to the task at hand.
It can be as simple as me writing this blog, I remember I need to pick up oranges (why my brain goes there in the middle of this is beyond me, but it happens) so I turn and write it down and poof! I’m not taken off track, and I’m still typing away. Quite happily.
Your life as a family caregiver is full, really full. Some days better than others. So it’s the little things you can do to help alleviate some of the stress and do believe an overall sense of calm help our bodies overall.
Step away…..pick up a pen…..and make notes.
*This blog was written by Cyndi Mariner of BACC partner Breathing Spaces. To learn more about the services Breathing Spaces offers, click here.
Eating seasonally is kind of my thing—you could say that it borders on obsession. You could also say that I’m a food and nutrition geek…you’d be right. Here are a few reasons why I’m a big proponent of eating seasonally:
1) Seasonal produce is often grown locally and is therefore fresher because it hasn’t traveled nearly as far as when it’s not in season. For example, imagine you are eating tomatoes in March. With some certainty, I would predict that those tomatoes are from either Florida or Mexico (as long as you’re in the States). It’s also possible that they’re grown in a greenhouse. Those Florida tomatoes are picked underripe and green and then shipped across the country (they look like apples according to Barry Estabrook, author of Tomatoland: How Modern Industrial Agriculture Destroyed Our Most Alluring Fruit). They are then gassed with ethylene to artificially ripen them. Eating tomatoes that are local and in season would avoid the CO2 gasses emitted due to those hundreds or maybe even thousands of miles traveled.
2) Seasonal produce, grown locally, tastes significantly better than when it’s picked unripe. The example that I provided about tomatoes above also applies to most fresh produce. They can look fresh and tasty but are almost always flavorless. Have you ever tasted a garden strawberry or freshly picked peach (or insert your favorite fruit or vegetable)? There is no comparison in taste.
3) Seasonal produce is fresher and fresher produce has more nutrients. For example, author Jo Robinson educates readers that a significant amount of nutrients in broccoli are lost within the first 24 hours after harvesting. Imagine if that broccoli was picked a week ago so that it could travel to you? It might look fresh, but it sure wouldn’t be providing you with the vitamins, minerals, and phytonutrients that you were hoping it did. (By the way, I highly recommend her fascinating book Eating on the Wild Side: The Missing Link to Optimum Health.)
4) Get your fill of in-season produce. In Barbara Kingsolver’s book, Animal, Vegetable, Miracle, she discusses eating tomatoes so much while they’re in season that you almost become sick of them. You don’t crave them as much during the off season and you’re not tempted to eat a tasteless, mealy tomato in January because your tomato craving has been satiated for the year. I love this way to view it and have really tried to adopt this mentality since reading her book in 2011.
5) Seasonal produce promotes local jobs and boosts our local economy. This one is pretty straightforward. I’d like to emphasize that it would be great to extend the “Shop Small” and “Made in America” movements to the food and produce that we consume each day.
I hope that you’re inspired to go to your local farmer’s market this weekend and get some local food! CSA (community supported agriculture) boxes are filled with farm fresh produce and are delivered straight to your door. If you’re interested in a CSA box you can check out www.localharvest.org to see what’s available in your area.
Here’s a fun, seasonal recipe for spring! Try it out and please share your pictures and thoughts with us! @bayareacancer @cleaneatingwithkatie
Strawberry Chia Seed Pudding
1 can full-fat coconut milk
2-4 tbsp. chia seeds (2 for a thinner pudding and 4 for a thicker pudding)
10-15 organic strawberries, rinsed and halved
1 tsp. vanilla
2 tbsp. raw honey
Place coconut milk, chia seeds, and strawberries in food processor (or high speed blender) and pulse until it becomes a smooth consistency.
Add the vanilla and honey. Pulse until just incorporated.
Place into small jars and store in refrigerator for 1-2 hours or overnight. Chia seeds become gelatinous and will thicken the pudding as it sits. It can also be eaten right away.
There are many other options for chia seed pudding. Try experimenting with other seasonal fruits like peaches, raspberries, pears, blueberries, and even pumpkin. Also consider adding nuts, other seeds, and spices. The possibilities are endless!
Katie is enthusiastic about helping people maintain health and vitality through whole-food based nutrition, customized supplementation, and wellness coaching. She received her certificate as a Nutrition Consultant through California state-certified Bauman College Holistic Nutrition and Culinary Arts. She is skilled in gluten-free and paleo-centered cuisines. Katie is also a Certified 21-Day Sugar Detox Coach and leads regular monthly detox groups. She has been following a paleo diet and has been gluten-free since 2012. She practices yoga, hikes, swims, runs, and cycles. She is also a breast cancer survivor. Katie and her husband, Jim, live in Santa Clara, California, with their dogs, Jax and Molly. You can reach Katie at www.cleaneatingwithkatie.com or email@example.com.
Cancer treatments create a massive physical struggle and a daily fight for survival. Constant medical scrutiny leads to insecurity. Treatments take away strength, both physical and mental. Then one day, my last treatment is done and it hits me: What comes next? Is the cancer gone? How will I know? Isn’t there anything else that can be done? Where do I go from here? The season after treatment is very difficult, filled with emotional instability, questions, fear, and uncertainty. Unfortunately, for many of us, once treatments are complete, we enter a season of feeling stuck in a post-treatment anxiety. There are many fears and unanswered questions. These thoughts fill us with a new type of need, but they are needs that cannot be easily revealed nor clearly communicated. How do I start again? Has everyone already forgotten that I had cancer? How will I pay for these past two years? How long before this all begins again? What is this pain in my side? On and on the questions roll, controlling our emotions and crushing our ability to thrive. In this emotional process of beginning again, the question “Who am I?” emerges. This question might seem trite, but in this season of significant change, it deserves proper attention before we are able to heal emotionally.
Before cancer, I would have described myself as a confident, centered person on the best path for my life. Then my life stopped. I was stripped of my confidence and my path. I was left with nothing but the question, “Who am I?”. All of the adjectives I would have used to answer the question before cancer, no longer apply. At the same time, I came face-to-face with new truths about myself. Before cancer I would have stated with confidence, “I am more than my circumstances,” yet when terrible circumstances came my way, I was left changed and shaken. Before cancer, I would never have thought, “I am defined by my physical appearance,” yet when my hair fell out and my eyebrows and eyelashes were gone, I truly struggled to find myself, in the mirror or otherwise. Cancer’s impact on my self-image showed me that I have a lot of room for growth. The truth is that I am more complex than I will ever know.
There are pieces of myself that I put on and bring forward daily for all to see. There are parts I do not even want to show myself. Upon honest examination, there are an unknown number of layers that make up who I am. Each significant story in my life created a layer. Some layers happen to fall on the surface and receive the spotlight while others lay hidden despite their significant value. One exercise for escaping a post-treatment anxiety, is to take time to find an honest answer to the question, “Who was I?” and the follow up question “Who do I want to be?”. These are not easy questions to resolve. I am fractured. I am different at work than I am at home. My ideal “me” is different than who I am every day. There are many versions and many visions of myself. Fortunately, this complexity provides opportunity for who I can become.
Cancer took at least one version of me. It disappeared and was left in my past. As treatments end, it is important for me to take time to mourn for that version of me. I have spoken to survivors who wrestle with picking up the pieces in order to put that old “self” back together, with minimal success. I feel we must be reminded that whatever picture of self that was lost during cancer is not the only version of you. Perhaps it is not even the best version of you. Cancer stripped me of both good and bad, but I have the ability to rebuild. I have the power to recreate myself not as who I was, but who I want to be. I have the opportunity to minimize the negative aspects in my life and replace it with what I want to define my future. Post-treatment is a unique moment of time to become whomever I want to be. It is a moment of vulnerability and rawness, and a moment when I am not healed, but I have moved beyond the sickness. There is stillness, as the routines of life have not swept in, but there is also churning within my thoughts. My old expectations are gone, along with many of my fears. So what do I want for myself now? Post-treatment is a season of freedom. Freedom is a gift that is both liberating and terrifying, and beginning again requires significant courage.
So let us fortify ourselves as we consider who we are. As cancer survivors, we have accomplished an impossible task. There was something in our life, in our body, trying to kill us. You made difficult decisions, that only you could make. Perhaps when you received the diagnosis, there was no question that you would proceed with treatment or perhaps you struggled with where to begin. Either way, it requires significant courage to willingly submit yourself to chemo, radiation, and surgery. Once treatment begins, it requires more and more courage to continue through the process. The night before a scheduled chemo is filled with choices: Can I handle another treatment? Do I want what tomorrow will bring? Then despite the knowledge of what is to come, you moved forward, pushing through treatments and in the end accomplishing impossible things. You pushed back a disease that wanted to kill you. You beat the odds. You are triumphant. You are fierce. You are strong. You may not feel it today, but it is there inside of you. If you choose to own this piece of your new self it can monumentally change how you answer, “Who do I want to be?”.
I am choosing to embrace the strengths cancer revealed and I have placed this strength on the surface of my new identity. I consider this a gift of cancer. Before cancer, I would never have described myself as fierce, but now, if I am honest, I know that inside of me is a strength that will rise against any challenge in my life. I can face any impossibility with confidence. I have done impossible things; I can do it again. I have pushed through crippling fear; I can do it again. I have submitted all that I am in order to accomplish a goal; I can do it again. I am driven by a deep unshakable confidence and courage that I never experienced before cancer. As I learn to walk in this new strength, I become more and more thankful for my cancer experience.
So, who am I? I was changed by cancer, that is true, but how I was changed plays an important role in my future. The presence of cancer in my life did not change me, there were months or possibly years when I had cancer in my body and I was unaware. My life began to change because of what I chose to believe about myself and others after I heard the words, “You have breast cancer.” Through treatments, did I believe I was all alone in my fight or that I was surrounded by a community? As a survivor, do I believe that I have overcome cancer or that I only have a few years before the fight begins again? It is what I choose to believe that changes me, not the cancer itself.
Cancer provides a platform for deep reflection. It showed me what was already inside of me. It revealed my insecurities and fears. I cannot blame cancer for the baggage that was already present in my life, just as I cannot blame cancer for who I am. Cancer taught me many things and helped me take an honest look into the layers of who I am. Now, what I choose to place on the surface, for all to see, is different than before. Now, the characteristics I simply did not acknowledge before, I choose to embrace. Who I am after cancer is not a puzzle needing to be put together in the correct way, but rather is one layer upon the next. Like the layers of the Earth, each layer tells a story. Each story cannot stand alone for they are all interconnected and require each other for a true understanding of all that I am. My cancer experience has become a layer in my life. A layer that tells a new story of who I am. Cancer is only one layer though, what I do with that part of my story, is up to me.
Lauren Huffmaster, aka Eden, was diagnosed with breast cancer in 2015 at the age of 35. Months after completing all recommended treatments, she was diagnosed with metastatic breast cancer in 2017. Lauren is a wife, and mother of three young girls. Since diagnosis, she has worked as a freelance writer and photographer. To read more of Lauren’s work, visit PursuitOfKindness.com.