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Newly diagnosed and not sure where to start? My (highly personal) and (totally unsolicited) advice for those facing a new cancer diagnosis.
Written by Liz Benditt Newly diagnosed and not sure where to start? My (highly personal) and (totally unsolicited) advice for those facing a new cancer diagnosis. Being told you have cancer is never easy. Hearing that you are ‘sick’ when you do not necessarily feel ‘sick’ is hard to process. After going through this song and dance more than a few times, below are my personal thoughts on how to handle meetings with your care team to determine your treatment plan. It goes without saying that I am NOT a physician, have no medical degree, am not offering formal advice or cures or promises or anything that a mean-spirited lawyer might in any way suggest I am taking responsibility for your personal decisions or treatment. The below is simply my personal opinion on how to approach an initial diagnosis and answer the question: WHAT NOW?! 1. Treatment Plans are up for discussion – they are not a directive Given my age and general good health, Doctors almost always recommended the MOST aggressive treatment plans for me - but ultimately, I was the one who made the decision regarding what I was willing to put my body through. I focused on the odds. We are lucky to live in the age of information. There is great research and data on a patient’s odds of a recurrence or complication for most standard cancer treatments like surgery, radiation, chemotherapy, and hormone therapy. This is SO subjective! For example: for me, engaging in hormone therapy would reduce my odds of recurrence by 50%. That sounds high, right? But in reality, post-lumpectomy and radiation treatment, my odds of recurrence were about 15%. 10 years of hormone therapy would take my odds of a breast cancer recurrence down to 8%. This is such a personal and subjective decision – are the side effects of hormone therapy worth an 8% reduction? Some women would say YES, absolutely! Others say, NO, not worth it! Information is power and gave me more confidence in my choices. 2. I want partners, not dictators Cancer treatments are brutal and unpleasant – for me, actively participating in my treatment plans helped me feel like I had a wee bit of control over my situation. Especially during the dark times, when I was so very tired, in pain, and emotionally spent, knowing that I CHOSE this treatment, that I was not a nameless, faceless, powerless patient lost among the whims of an oppressive medical establishment, was genuinely helpful. To actively participate in my treatment plans, I needed a care team willing to include me in the upfront planning. I interviewed and selected doctors who were willing to collaborate with me as a partner – I did not want a medical overlord. In my ongoing cancer journey I have met some brilliant, skilled medical professionals that were horribly arrogant and dismissive. One made me cry in his office. No matter their stellar credentials, I refuse to work with other humans that are mean, rude, or downright creepy. I am incredibly fortunate that I live in a major metropolitan city and could choose from a variety of doctors, all covered by my health insurance. Learning to actively interview and select care teams that aligned with my values and personality has been a game changer. 3. Nurse Navigators are worth their weight in gold Inevitably, most cancer patients will work with more than one doctor at a time, and sometimes it is not clear when to call which doctor with a question or issue – enter the Nurse Navigator. Not all medical centers keep Nurse Navigators on staff, but I was lucky that my local hospital includes a small team of Nurse Navigators. These professionals have been a phenomenal resource. Especially during my breast cancer treatments, my nurse navigator acted like a neutral third party who helped answer questions, made recommendations on the timing between appointments and guided me to the right specialists for my specific diagnosis and medical history. She was warm, smart, resourceful, and sympathetic. Having a medical professional who was only accountable to ME, not one of my doctors, who would listen to my concerns and provide thoughtful insights and suggestions was invaluable. *** The common theme – at least for me – has been and continues to be choosing to be an active vs passive participant in my treatment plans. It has made a world of difference in my emotional health, and I’d like to think my physical health as well. I mean, cancer came at me four times and I’m still here right?! 😊
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Surviving Cancer: What Patients Really Need
Written by Liz Benditt Many thanks to Ebony Harwood from ZayZoh for inviting Liz Benditt as a guest on her video podcast to talk about the importance of self care for cancer patients. We had a wonderful, honest, and highly personal chat about our own experiences as both patients and caregivers. Link is below - enjoy! https://www.youtube.com/watch?v=ueRItmf6OEU
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Winning Cancer
So why not try a paradigm shift? Through the sadness, find some fun. Honor the sad moments and cry. Then leave them behind you and find some great ways to make the best of the journey.
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The Finish Line is the Starting Line
Written by Liz Benditt I like to think of myself as a medical miracle. I survived four cancers over 8 years: 2009: Melanoma Skin Cancer 2010: Thyroid Cancer 2015: Basal Cell Skin Cancer 2017: Breast Cancer By necessity, my approach to treating myself and my illnesses have changed over time. After experiencing VERY RARE side effects from thyroid surgery, I stopped automatically following ‘standard treatment’ protocols and took back control of my care and recovery process. I found that when I contributed to my treatment plans, I was better prepared for the inevitable side effects. Although the melanoma was by far my most potentially lethal cancer, and the facial plastic surgeries for basal cell were incredibly painful, the breast cancer experience and treatment were the absolute worst. Perhaps I was overconfident about my youth and ability to fight it / overcome it, or it’s possible my fair skin was destined to react badly to radiation – it’s impossible to know. Regardless, despite thinking I would knock out radiation and be able to continue working full time and running half-marathons my body failed me and I was flabbergasted by my situation. There were two concurrent issues: It was incredibly difficult to predict what tools I would need to go through and recover from radiation until I was in the middle of it, scrambling for bra-alternatives, aluminum-free deodorant, and burn salves. A nurse made me a mini-pillow to hold between my seatbelt and breast so that the belt wouldn't chafe. There was no central resource, website, or retailer known for all this 'stuff' and I found myself up late at night researching page 20 searches on Google and Amazon looking for solutions. Most of the cancer-treatments and gifts online were pink ribboned cute/sassy t-shirts and mugs – I wanted relief not stuff. Friends and neighbors all want to DO something ... and they predominantly bring food/cook. It's super nice and appreciated, but honestly my husband and son are super picky eaters and would have preferred takeout. I wasn't able to exercise and would have preferred lighter / lower calorie fare. It was honestly frustrating because it was all so WELL MEANING but in reality, not awesome to receive. I chose this featured image for so many reasons – it was taken at my “Finish Line” party, thrown by my dear friends Amy and Stacey after I completed my breast cancer treatments. It was a magical night, filled with cocktails and cake and laughter. The evening was made even more special by my friends Monique and Anne who flew into Kansas City from New York and Los Angeles to attend. In addition to my incredible family, I had – still have – an incredible support network of amazing women who are so smart, kind, hilarious, thoughtful, and FUN. They know when to bring the wine and when to enforce tough love. The “Finish Line” party was where the seed for Balm Box started. Maybe there is some crazy kismet in the universe; the past ten years of cancer treatments leading me to the launch of something great. I certainly hope so. Sometimes the finish line is actually the starting line. **** And sometimes you've got to run the race again! That's right, Liz has officially gone from 4 time, to 5 time cancer survivor. You can read about that update here.
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A Daughter's Point of View
Hi. I’m Eve. I’m almost 15, I love volleyball and Grey’s Anatomy, and I’m the daughter of a four-time cancer survivor. Yes, you heard that right. Four separate cancers; eight years; one person. Some families play football, some families go to Harvard, but what do we do? We beat cancer. I don’t remember much about my mom’s first 2 cancers since they all happened before I was 5 years old. I remember hearing my mom screaming in pain from a surgical complication as she was carried out by a stretcher in the middle of the night while my neighbors held me and my brother close. That fear is something that I will live with for the rest of my life, something I would not wish upon my worst enemy. But for cancer #4, I was almost 12. Sixth grade is awkward for everyone. You’re figuring out your friend group before middle school and starting puberty, but I was dealing with all of that and the knowledge that my mom had something that could potentially take her life. At the time, I didn’t totally understand that she had a relatively low-risk-of-killing-you stage of breast cancer, which meant I was full of questions (for example, ‘What is radiation?’ was pretty high on that list). It was about a week before my birthday when we got the news. In the beginning, the radiation treatment wasn’t terrible. She kept working, and making dinner, and leading my girl scout troop meetings. But as it progressed, it started to get worse and worse. Radiation was taxing on her body. It took away little pieces of her every time she went in. The burn, the drain, and the inability to find a comfortable position while trying to relax were just a few of the things that cancer stole from her. But it never took away her drive to fight. If cancer taught me anything about my mom, it’s that she’s kind of a badass. She’s so strong and brave that I didn’t ever truly realize what she was going through. Only now after reflecting can I say that, in short, cancer sucks. If Grey’s Anatomy taught me anything, it’s that doctors hate having to give bad news. But what’s ten times worse is receiving that news. The news that your mother, the woman who carried you in her stomach for nine months, pushed you out (another thing to add to the badass repertoire), and then raised you, could die from something that she wanted nothing to do with. So, now I hug my mom a little tighter and I hold my breath and cross my fingers when she goes to the doctor. If I could say anything to people who are going through this, it would be: get her that glass of wine and just be with her when she needs it. I wish all of you the best and know that there is a light at the end of the tunnel. Walk towards it and never let up. Fight on. Eve
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A Mother's Nightmare
I was sitting in the passenger terminal at KCI, waiting for my flight to Shanghai. I was anxious to get on the flight and begin my long journey to see my husband, who had not been home for a month. It had been a long year of infrequent home visits since he had been assigned to a long stint in China. Just as I was gathering my things to get ready to board the flight, I received a terrifying call from my daughter, Liz. “Mom, I just got back my test results. I have melanoma!” Words of horror to a mother’s ears. Nothing like this is ever supposed to happen to your child – even your ADULT child! The folks at United Airlines were more than gracious. They held the flight while they located my luggage in the hold of the plane and brought it out. This was only the beginning of a long journey down the Cancer path. We heard these pronouncements not once, but four times! The harsh memories of panic followed by lots of tears almost became part of the family mantra. Who can forget the rushed return to the hospital when her Calcium counts were so low they feared for her life? Or the forlorn look we tossed among ourselves, trying to decide if it was better to return to the operating room to open the incision once again rather than wait to see if things cleared up. And then there was the time we agonized over how much of her nose would have to be removed from her absolutely gorgeous face. Do you remember years ago when the word “cancer” was not mentioned in public? The “C” word was whispered behind closed doors, and only among close family relations. We have gotten so inured to seeing hordes of young women marching through the streets declaring their will to overcome this disease. Nice for the marchers, but still words of horror for a parent! Even my years of experience following my own diagnosis of breast cancer have not been of any use. Just searching for a decent deodorant to use while going through radiation was an overwhelming task. I found one that was just barely useful, but better than nothing. Thinking I might need to use it again, I even saved it in the back of my toiletry cabinet. After 27 years, I offered Liz that SAME deodorant when Liz had to start her radiation. Thankfully, treatments have come a long way. And so have the products to help alleviate the symptoms. Not surprisingly Liz declined the 27-year old stick of deodorant and spent over $100 experimenting with various organic and aluminum free versions until she found the best one. Even 27 years later, it was still a rambling process to locate one that BOTH smelled good and prevented sweat stains! I’m certainly grateful that we’ve come as far as we have in the Cancer Wars. It’s a far cry from the time my mother’s childhood friend got a complete mastectomy over 50 years ago at the mere whisper of the diagnosis. However, it’s still a mother’s nightmare.
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