Erin Huizen

@erin-huizen | contributor
Erin is a 32-year-old mother who was diagnosed with stage IV adrenal cancer in June of 2015. Leading up to this diagnosis, she experienced the symptoms of Cushing’s Syndrome. She hopes for her story to inspire compassion for the sick and the misunderstood. Also, her favorite moments usually take place while deep in discussion with her son, generally about farts, guns, animals or a combination of the three.
Erin Huizen

Things Not to Say to Someone With Terminal Cancer

​I am a 32-year-old wife and mother who was diagnosed with stage 4 adrenal cancer in 2015. This means I am terminal, and that likely every time I see someone I haven’t seen for a week or more, I look worse to them. As in skinnier, weaker, more tired, etc. This list is meant as a peek into my perspective to help make the remaining time my loved ones and I have together as meaningful as possible. The list is also meant to be my opinion only. I don’t claim to know how others with disease feel about the things people say to them, but if others in my similar situation read this article and find they relate, I ask they leave comments below to let me and others know this is more than just an individual experience. 1. “How are you doing?/How’s your health?” This a question I get across the board, from nearly everyone I see. It definitely has its place as a question from my caregivers who need to know how I’m doing day-to-day, and from close friends and family who are deeply concerned with my health and well-being. The other group of people who ask me questions regarding my health are the doctors and nurses I see on a weekly basis, sometimes more, that I have to describe my every bowel movement to. To state the obvious, I find no enjoyment in these visits. That means questions like these, about my health, aren’t something I like talking about and it takes a lot of time and effort for me to explain. It also means when visitors come and ask, “How’s your health?” I know it’s because they care, but I also feel at a loss of how to answer. I’m usually unsure about how much they know about stage 4 adrenal cancer (which for 99.99 percent of the general population is about the same as they know about the eating habits of Australian stick bugs), and how much the question is asked out of really wanting to know or of wanting to be polite. Either way, I don’t want to be dismissive of questions, but there are some days my only reply has been, “Fine,” or “I’ve been better,” and I feel guilty for not expounding more. Instead of asking for a health update from me, try asking one of my caregivers. Or if the question about my health is to show me concern, then it might be best to steal clear of this question because I really, really, really, really hate talking about my bowels unless I have to. 2. “So… what do you think about Trump?” I love to sit and talk, but have found it increasingly tiring to do so when conversations turn to politics, personal drama (my own and yours), or arguing. I find these types of conversations tiring as it is, so when I am 5 percent of my normal self and exhausted, I definitely don’t have energy to talk about charged subjects. It’s nice and actually gives me energy when people come over when I’m home bound and keep conversation low-key. Such as sharing memories we had together, interesting new things going on in their life, etc. And to any questions along the lines of, “So…what do you think about Trump?” all I have to say is, “No comment.” 3. “Give me a hug!” As I said before, I am at about 5 percent of my normal self, and usually I would go right for the hug and squeeze until my face turned blue. Now, however, any hug or attempt to touch me in anyway sends my body into a quiet panic. If I reject someone, it’s never personal or because I don’t want to touch them, it’s because my whole body hurts and I can’t risk someone hugging me too hard or too awkwardly and causing me unnecessary pain. Also, if I have to reject someone, it’s nice if they respect my situation and stop making comments about it. I realize it stinks to be rejected for a hug, but it’s not personal, really. Instead of going in for a hug, let me feel safe and in control by waiting for me to initiate physical contact. Additionally, soft and gentle touches to my hand and shoulder are a safe and welcome way to show affection. 4. “I hate seeing you like this/I’m so sorry.” I appreciate being able to cry about my situation to loved ones and counsellors in order to vent my anger and process what I’m going through. I also want to be a shoulder for my loved ones to cry on and to share their grief about anything in the world, as long as it’s not about me. I am here for my loved ones, but I ask that no one grieve about me to me. There is something called the “Ring Theory” of kvetching that ever since hearing about it has changed my life by helping me to set healthier boundaries. The basic premise of the Ring Theory is to put the aggrieved or afflicted in the situation, in this case, me, at the center of the circle, then closest to suffer, my husband, mother and father, are the first ring outside the center and so on all the way to the lookie-loos (people who don’t know or care about me, but are interested in my disease and/or dramatic life situation). The rule is that all dumping and complaining moves only from the center of the circle outward, and all comfort moves from the outside in. Any complaining, grieving, crying, etc. that moves into the center is against the rule because it damages those relationships and puts unnecessary stress on the afflicted. This rule also helps ensure that I’m not the one comforting people, but that I and my close caregivers are on the receiving end of comfort and care. 5. “Let me know if you ever need anything.” Similar to how the Ring Theory works, I don’t think the afflicted person should ever be asked directly what they need, as they should be focused on resting and getting better, not on reaching out for help. Ninety-nine percent of my friends and family end their phone calls, texts and emails with the request that I let them know if I need any thing. This statement is well-meaning enough, but after hearing it the hundredth time over, it has started to frustrate me. I’ve tried imagining what it would look like for me to actually take someone up on this offer. For example, calling Jenny, a friend from college that lives in Oregon, out of the blue one day and saying, “Hi, remember when you said to let you know if I need anything? Well, I am too tired to make dinner tonight so could you help take care of that?” I would never do that. It’s simply unrealistic and would probably be more trouble than just making spaghetti myself. Therefore, if you think about it, telling someone in my position to let them know if I need anything takes the responsibility off of them to reach out to me anymore, and in a way relieves them from the burden of having to actually do anything for me. It also puts the responsibility on me then to reach out for help, even though I don’t have the strength nor energy to do so. There have been month or more long stretches where I have been completely isolated and alone, but too exhausted to try to initiate a phone call or text. It’s during these times I wished my friends and family would reach out to me. Instead of saying this well-meaning but unrealistic statement to a loved one in need, call their caregivers to see what ways you can be of help. The caregivers will have no problem finding something for you to actually do such as sending a care package, calling me to say “hi,” bringing over a family meal, etc. Or if calling a caregiver seems like too much, a simple card in the mail telling me you’re thinking about me can be very powerful and give encouragement and light where there is only darkness. 6. “My coworker’s cousin has non-Hodgkin’s lymphoma…” Receiving a cancer diagnosis (along with an estimated one out of every two male and one of every three female Americans), I did not suddenly become interested in cancer nor a cancer expert. In other words, I’m neither interested in your second cousin’s pancreatic cancer, nor do I know anything about pancreatic cancer. Personally, as a cancer patient, the last thing I want to talk about is cancer. Similar to how I don’t wish to discuss specifics of my health unless I have to, I also don’t want to talk about cancer and disease unless absolutely necessary. There are are thousands of types of cancers out there, each one affecting each person uniquely, so it is also unrealistic to think I would have knowledge of anything outside my own rare disease. It’s like expecting someone who just got a their first golden retriever puppy to be able to discuss the controversial breeding practices of the American bulldog. 7. “You’re so brave and strong.” As I said, one out of every two to three Americans will get cancer at some point in their life, and each one of these millions of people will battle (or not battle) cancer in their own way. And whatever path they choose is the right one. Not because they are strong or brave, but because they have no choice. Since cancer is not a choice, it seems unnecessary to me to praise a cancer patient’s reaction to their disease. Often their reaction arises from their circumstances. For example, I may appear strong and brave to others because I underwent chemo, radiation, etc. But others in my similar situation might have chosen alternative treatments or no treatment at all. Does that make them weak? As I said before, there is no right or wrong, brave or timid, strong or weak choice when it comes to cancer and disease. Instead of praising someone for how they chose to approach their disease, praise them for things relevant to them such as a new haircut or a pretty sweater they knitted. These sorts of compliments make the receiver feel seen and loved, while complimenting someone’s strength may make them feel like they can’t show weakness or like their disease is what defines them now. In the end, us cancer patients and our loved ones are all trying our best to understand and support one another. My hope is that by reading this, we all might gain a deeper understanding of one another and how best to cope with this wretched disease.

Erin Huizen

Receiving a Cushing's Syndrome and Adrenal Cancer Diagnosis

Erin before treatment. Over the span of one spring to the next, I unwittingly transformed from a fit, young(ish) mother, committed to healthy eating and exercise, into what, in retrospect, I describe as “Elvis Presley circa 1977.” This is the year The King died an overweight icon with blood pressure higher than Priscilla Presley’s 60’s beehive. I too, grew overweight despite no changes to my diet and working out seven days a week. I couldn’t sleep more than four, sometimes as little as two, hours a night no matter what pill I took or method I tried. My eyebrows grew into my temples like a cave woman. I had a mustache. I was balding. My once low blood pressure spiked. I was on edge and overcome with anxiety. My bones felt like dust. I bruised if I bumped into a butterfly. I became hunchbacked and looked twenty years over my 31 years of age. Dementia gripped my mind. I didn’t feel like myself. In other words, in my mind, I felt as if I had become a “monster.” And life was hell. It was me, the real me, trapped inside this “Elvis Presley-like demon,” and screaming in a tiny, muffled ant-like voice for someone to get me out of there. Elvis-me regularly disgusted the real me, like when he couldn’t pick up on social cues and took overly-long pauses when talking, stared too hard, wreaked badly of body odor. Or when he’d greedily pick every last chocolate-covered peanut and other fallen goodies from the grate underneath the bulk food dispensers. Not to mention the days when he’d buy a rotisserie chicken and eat nearly the whole thing, hot grease dripping down his bear hands while still in the parking lot. He even, exactly like the real Elvis, was a big fan of all things peanut butter and banana. Probably due to a sodium/potassium imbalance and the haunting feeling of insatiable hunger. Therefore, Elvis-me positioned himself to always be within ten feet of a fresh banana, a jar of peanut butter and a spoon. Thus, often wearing crusted peanut butter, and sometimes banana, on the front of his shirt and in his hair. Once he even attacked a sycamore tree in his backyard with a rake out of sheer rage, tearing off sheets of its paper-bark. It took so much out of him, he visited the doctor the next day for fear he was having a heart attack. Elvis-me also had (what he thought were) a lot of ingenious ideas. Unlike the real me, he was very talented at convincing others to support his brilliant plans. By the end of Elvis-me’s occupation of my body, he’d convinced my real self that whatever my problem was, it could be fixed if I could just make enough lists. He became quite spiritual, and suspected he knew the true meaning of all existence (at last). He also persuaded my husband and myself to quit his high-paying, successful career and we would both work part-time, splitting childcare fifty/fifty. Unfortunately, a week after my husband quit his job, I woke and set out for my morning stroll, quickly discovering I was unable to walk more than a few steps before my legs, along with my last shred of hope that I’d ever be healthy again, crumbled to the ground. I could no longer work or take care of my two-year-old, and the doctors where I lived didn’t seem to know what to make of my extravagant list of ailments. So I took a flight out the next day to be near my parents while I sought serious medical attention. After a trip to the ER, I finally found out the cause of all the Elvis-symptoms over the past year. It was Cushing’s Syndrome caused by a malignant grapefruit-sized tumor on my adrenal gland. Adrenal cortical carcinoma, a stage IV cancer. Erin after treatment. Adrenal cancer is considered an extremely rare “orphan” cancer, because like many orphans, it feels like nearly the whole world wishes you the best, but won’t do a thing to help you. A cancer diagnosed to one in a million souls, that’s three hundred Americans per year. Untreatable once this cancer hits stage IV, you have a less than five percent chance of living five years after diagnosis. Despite the almost certain early death sentence, I felt largely relieved to finally know who this Elvis was. And to confirm there really was an Elvis, that it wasn’t truly me in charge of my body all that time. The hijacker of my body was, in fact, a flood of cortisol, the “fight or flight” hormone responsible for regulating stress, sleep/wake cycles, metabolism, menstruation and immunity, among other things. And once I realized the problem, I knew solutions would come, no matter how crummy the odds. I knew once I had surgery to remove the main tumor and I recovered from Cushing’s, I’d start to feel like myself again. And even if I died sooner rather than later, I would die as my real self. I would have enough borrowed-time to unravel and process my year’s-worth of experiences trapped inside Elvis. I would then do my best to make up for the year of “beast-like” behavior, to the few dedicated people still present in my life, as best I could with a long period of normal behavior controlled by the real me. This way I might avoid dying like Elvis, leaving behind a name synonymous with unfavorable behavior. The Cushing’s and Elvis-me have since subsided, leaving me a worn, yet sane, version of my former self. But I will not soon forget that time when I knew what it felt like to be a fallen king, to go from something to nothing — t o be rejected for my mood swings, “puffy” face, bloated stomach, and my ramblings and incoherence. Because, in my opinion, this is what we do. We meet a stranger who is appears to be “monster-like” in our minds, someone we don’t feel comfortable with, someone who scares us. We calculate at a glance how many categories of “normal” they don’t fit into, and treat them with the least amount of respect without being completely disrespectful. In essence, we often reject them. I too, am guilty of these same thoughts and actions. But now I know precisely what it feels like to want so badly to feel “normal,” but being constantly brushed aside due to a strange outward appearance. I realize Cushing’s is rare, and adrenal cancer even rarer. I know I will probably never meet someone with my same diagnosis. But I cannot help but wonder if what was true of my “monster-likeness” is true of how others may feel as well. They may not have Cushing’s, but there is a “real-me” inside each person whose illness has changed their appearance or behavior, a person who still needs and deserves compassion and care. And I wonder just how many others who experience their body and mind being “taken over,” would have a better outlook if just a few of us took a moment or two to think this way. The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.