Lynch Syndrome

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Lynch Syndrome
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    Julie Negrin

    When Asking Someone to Wear a Mask Leads to Conflict

    “Can I ask why you’re not wearing a mask?” I gently said to the young man, probably a college student, at the grocery store. I had on my tight fitting N95 mask and latex gloves because I can’t risk a mask-free COVID carrier coughing in my direction while in public. If I get COVID , it’ll most likely be a death sentence. I’m immunocompromised from multiple conditions making simple errands terrifying now. I became disabled after losing four organs to three cancers in 2014, at the age of 42 years old. I had ovarian cancer , which required 18 weeks of chemotherapy, as well as colon and endometrial cancer . I also had melanoma in my leg in 2011 which required three surgeries to remove because it was so large. Three individual cancers all at once is extremely rare in the general population. But it’s not uncommon for those of us with Lynch syndrome , a genetic disorder marked by high rates of cancer at young ages, especially colon cancer . My fellow “Lynchie” uncle is currently battling two different cancers during COVID . My dad had three different cancers before he died last year. He was a three time Ironman and ran, biked and did Crossfit in his 70s when lung cancer finally got him. I watched my super strong, athletic dad slowly suffocate to death in a matter of weeks — just like how many die from COVID . At least he was surrounded by loved ones when he died, I remind myself. I’m petrified now that my last moments will be alone, gasping for air in a hospital room with only strangers nearby. My list of traumas had already piled high before COVID struck our nation. I’ve been dealing with chronic pain, grieving my dad, struggling to find doctors, fighting for government benefits and terrified of hospitals. I’d already lost my independence, financial security and a successful career as a nutritionist and cooking instructor in 2016 when I got so sick I had to quit my job and leave my San Diego apartment to live with family in Seattle. Becoming disabled in America in my mid-40s was a hideous awakening to how cruelly we treat the sickest and most vulnerable people in our “individual first” country. I’m still waking up to how privileged I was before, and still am in so many ways, which is why I share my story. During my 2014 surgery, they didn’t take “just” organs. In order to make sure they got all the cancer out, they removed blood vessels, lymph nodes and nerves. This leaves me with twisted, scarred intestines and a butchered nervous system that causes pain throughout my torso. I survive on a mostly liquid diet because solid food can’t travel through my wrecked digestive system. Eating and pooping is a daily struggle. I’ve researched surgery options to fix things but have been told additional surgery is very risky for a case like mine. This means my body doesn’t work right but not in the way that most people perceive disability. I live on a very restrictive diet and have to do a lot of movement in order to digest the little food I consume. I also require daily IV bags of fluids and nutrients via a permanent PICC line in my arm because of chronic dehydration and gut absorption problems. I’ve been homebound much of the last few years due to fatigue issues. I’ve worn surgical masks and latex gloves to the doctors for years since my immune system is so compromised. Pandemic life is my normal. The basic precautions that so many Americans are resisting, are the norm for many disabled/medically fragile people and their family members. They can’t risk bringing anything home that could kill their loved one! And what about the many BIPOC who are dying at higher rates because they’re working the front lines? And forced to deal with systemic racism in the healthcare system? It’s extremely frustrating and depressing that some of my fellow citizens consider wearing a mask an inconvenience when it puts so many lives at risk. It’s also really hard when I’m treated badly in public now for trying to keep myself alive. I realize that for many able bodied people who have no experience with invisible disability, it can be confusing because I appear “healthy.” I intentionally chose this photo because it shows the PICC needle in my arm, my IV bag and the mysterious mottling on my belly, making some of my invisible illness visible. I don’t understand why there isn’t more compassion and empathy for people who are disabled and medically fragile at all times, but especially during this pandemic. Nobody plans on being born with a genetic mutation. Nobody anticipates becoming disabled part way through life. Nobody thinks they’ll go from healthy to chronically ill overnight. Nobody thinks that a tragic “thing” will happen to them — that’s precisely what makes it tragic. Roughly one in four of the American population — 61 million people — are considered disabled. And yet we’re barely considered during this pandemic, let alone given extra care and protection. Compared to what so many disabled people endure for years, it’s astonishing that some people whine about wearing a cloth mask for a half hour. Unfortunately, many COVID survivors are going to become medically fragile people due to the long-term damage to their lungs and other organs. I shudder to think of what will happen when there are millions of more people needing specialty medical care in our already strained healthcare system. I studied nutrition because preventing illness is always the wisest course. Is it really that challenging for America to work at preventing as many COVID cases as possible? I may have survived four cancers for six years, yet could be felled by a preventable bug. I asked the man in the store why he wasn’t wearing a mask because I’m legitimately confused. His response? “I have a lung disease. I’m not talking to you, goodbye.” Some might wonder why I’d be in a grocery store if I’m so medically fragile. After a very exciting career in the food world including a stint on “Sesame Street” cooking with kids and a visit to Michele Obama’s White House garden, I’m now living on small government benefit checks. I get $192 in food benefits each month. However, it’s against the law for anyone but me to use my EBT (food benefits) card and Instacart has no option to pay with one. So once a month, I risk my life to use my government benefits! I mask and glove up, speed around a store grabbing my specialty items hoping no one will breathe on me and end my life. I saw the young man later in my shopping trip, and joked: “hey it’s my favorite person,” because I try to keep a sense of humor about these things. He started saying horrible things to me. I was so stunned that I can’t remember all of it, but something about having a God complex! To which I responded, “If I have that, then why am I working so hard to survive in this very fragile human body?” He said more rude comments while backing away from me. The rest was a blur. I talked to the manager and he said that his staff was incredibly upset that the store hadn’t been requiring masks for customers, just for them. (It was only after that Washington state finally announced it as a mandate, leaving thousands of medically fragile people and essential workers at risk for infection for a few months.) We are forgotten in this mess. The disabled, the medically fragile, the patients undergoing cancer treatment, the essential workers and BIPOC who are dying at higher rates. As hospitals fill up to capacity in many states, disabled people will be less likely to receive the care they need. I’m certain there are disabled people dying — but whose deaths won’t be counted, of course — due to the COVID pandemic in some way. I’m at risk for not only recurrence of colon, melanoma  and ovarian cancer — and yes, you can have ovarian cancer return even after ovaries are removed — but also lung, kidney, bladder, stomach and sarcoma which are the cancers that my dad and uncle had or currently have. That’s not even the full list of Lynch cancers ! I need to safely get screened for many cancers each year. How can I safely do that if the hospitals are overrun? And if I’m diagnosed again? I try not to think about it. I work hard to stay upbeat and “busy” even while stuck in bed most of the week. I started a podcast about taboo topics. I write in my blog most days, and share my cooking teacher recipes that I can no longer eat because I want to leave behind my legacy before I die. Many doctors are surprised to learn I’ve survived as long as I have. And now? There’s one thing that could mean life or death for me. A simple face mask.

    Julie Negrin

    Finding Support With Lynch Syndrome

    Did the surgeon just say I had three cancers at once? That can’t be right, I think. I try opening my eyes wider to look coherent, which is laughable while on Dilaudid in a hospital bed. The doctors keep sharing terrifying details of my case while I try to keep up: Ovarian cancer. Endometrial cancer. Colon cancer. Lost four organs, 65 lymph nodes, nerves, omentum. Definitely need chemotherapy. I had something called “the field effect” which is multiple cancers at once. Not uncommon for people with my genetic disorder, Lynch syndrome. In the general population, however, it’s unusual to have several primary cancers at the same time – statistically on par with being struck by lightning. I had melanoma at 39, so that’s a a grand total of four unrelated cancers by 42 years old. The surgeons drone on and I hear, “You’re lucky to be alive.” Yeah, I’m real lucky, I think, as the pain medications suck me under. My mind saturated with terrible news, drifts back to sleep. It’s been exactly five years since that surgery. Five years of one medical crisis after another. Five years of my former life gradually being stripped away. First my energy, then food, then my career, money, apartment, independence… I write this while sitting on my former bachelorette couch wedged into my brother’s old bedroom in my parents’ basement. My feet cocooned in an electric foot massager that my best friend gave to me to make my life a tiny bit more comfortable. Due to all the complications, I have been deemed disabled by the U.S. government, a process that took three long years. My health is too unpredictable to commit to an employer. Instead, I pass my days begging doctors to work on my case and spending my paltry checks from the government on out-of-pocket treatments to improve my digestion that Medicare won’t cover. Because my sensitive digestive tract was chopped up, I can barely digest food. I subsist on homemade chicken broth, runny eggs, avocados, vegan ice cream, teas, juices, and nutrients from a daily IV bag. I battle chronic dehydration and require one to two liters of saline per day. I’ve had bowel obstructions, chronic fatigue, an infected port that almost went sepsis, cancer scares and lately, a crushing depression. I’m on eight hormones and do my best to use my nutrition education to keep my body at a steady weight. Every day, I walk, stretch and do belly exercises in order to reduce pain and move the little food I do eat through my dysfunctional gastrointestinal tract. There are so many things wrong with my body that I often don’t tell people everything because even a small part of my story tends to horrify them. To make things even more complicated for my mental state, I look like the perfect picture of health! Due to my many years as a nutritionist and an athlete, my outside does not reflect my insides. I toggle between wanting people to understand how awful things really are and wanting to protect them from the gruesomeness of my existence. It’s still not clear to me which part of my life is the hardest. Not working and being trapped at home in bed and near a bathroom is definitely challenging. Being unable to eat hardly anything is torture. Food used to be my life. I ran a cooking program for adults and kids in New York City. I devoured meals prepared by extraordinary chefs. I wrote a cookbook and was on Sesame Street! I went dancing at night and running during the day. Unmarried and free-spirited, I traveled as much as I could afford. After battling Crohn’s disease for 10 years as a young woman, I knew how fortunate I was to have the freedom and independence to live life on my own terms. I do what I can to emulate my old life as much as possible. I’ve stayed busy as a healthcare activist for the past two years, advocating for my fellow chronically ill and disabled patients. It was a huge honor to receive the Golden Tennis Shoe award from Senator Patty Murray last year for my work to protect the Affordable Care Act. I share my story with my online community who keep me company since I’m often homebound. Recently, I started a podcast so that I can “work” from bed and stay connected to the outer world. I spend as much time as possible with my eight nieces and nephews who keep me present and laughing. I tell them their love is magical and heals me. It is. It does. I try to be open about how much I struggle with mental health issues now. I want to model to the kids – and other adults too – that it’s OK to share that we’re having a hard time. But I haven’t shared what a difficult time I’ve been having with this five-year anniversary. Until here. Now. I usually love to celebrate an anniversary with my online community! This time, I’m more scared than excited about the next five years – if I get that long. For me and other Lynch syndrome patients like my dad who has had three unrelated cancers and is missing his stomach, colon and part of a lung – it’s not a question of “if” something will go wrong. I have to live with “when.” It’s a heavy weight to carry. This is why I’m so grateful for my community — my family, the kids, my friends and my online community. I was chronically ill once, before the Internet existed. I know how lucky I am to be able to write online and get support from an incredible group of people that always have my back and cheer me on. I tell them all the time that their support and advice saves my life. More than anything, it’s a relief to not feel alone when I’m stuck at home. When I write for them, when I let my deeply emotional words flow through my fingertips and travel into the digital world, they dissipate from the dark, painful lump of coal that used to sit inside me and burst into a thousand little diamonds. Friends and family each kindly catches one, lightening my load. The most beautiful part? When I’m having a really rough time, and the pain of it all makes me wonder how I can continue, I share my heavy words with them, pour it all out of me. And without hesitation, they hold up their diamond pieces in the air along with their own personal gems to create a gorgeous kaleidoscope of luminous light, reminding me they’re there to support me and reflecting my own light back to me while I carry on through the darkness. It is only because of them that I can continue. It is only because of them that I keep fighting. It is only because of my community that I keep crawling through revolting mud in the pitch-black tunnel, knowing they are there, patiently loving me and guiding me through with their light. Follow this journey on Julie Negrin Find your community on The Mighty and share your story.