Adrenal Cancer

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    Community Voices

    How many people actually get Adrenal Cancer? My dad was only 23-24 at the time, I was 3. How can something like this happen?

    Community Voices
    Community Voices

    Do Awareness Ribbons Really Help Medical Causes?

    I understood it well enough when it started. Yellow ribbon = bring home the hostages. (Remember that, kids? Americans were being held hostage by Iran back in the late 1970s.) Even the hostages themselves wore yellow ribbons as a secret signal that they knew people back home cared about them.

    To me, it made little sense and the message was just a tad “off.” The origin of the yellow ribbon meme (we didn’t call it that then) was in a song, “Tie a Yellow Ribbon ‘Round the Old Oak Tree,” which was about a prisoner coming home to find a celebration of “a hundred yellow ribbons” around the tree.

    Which was okay as far as it went, prisoners coming home, yellow ribbons to celebrate. But in the song, the ribbons were an answer to the question “Do you still want me?” (after being in prison). Regarding the hostages, that wasn’t a question at all. Of course we still wanted them (except possibly the one who read the Koran while captive).

    Later came the pink ribbons, for #BreastCancer awareness. I have problems with this, too. Pink is the color that in our present society represents girls, so you’d think that pink would be a good choice. But the fact is that men get breast cancer too. And there are other diseases such as #Endometriosis and #CervicalCancer that are unique to those with female reproductive organs. What color ribbon do they get?

    Actually, there’s an answer for that.

    Endometriosis awareness ribbons are yellow, which adds to the confusion about prisoners and hostages. Cervical cancer awareness ribbons are teal and white (combined).

    The number of diseases and conditions associated with each color has proliferated. My personal cause, #BipolarDisorder, shares the ribbon color green with #AdrenalCancer, bone marrow donation, #CerebralPalsy#Dwarfism, eye injury, #Gastroparesis, #Glaucoma, leukemia, literacy, #Neurofibromatosis, and stem cell research, to name but a few.

    These days we are encouraged to wear or decorate our profile pictures with orange ribbons for gun control. But orange already signifies awareness of:

    ADHD
    Agent Orange
    COPD
    Cultural Diversity
    #KidneyCancer – Renal Cell Carcinoma
    #Leukemia
    #Lupus
    Malnutrition
    #MultipleSclerosis
    Reflex Sympathetic Dystrophy (RSD) – #ComplexRegionalPainSyndrome (RSD).
    Self Injury
    #SensoryProcessingDisorder
    Spinal #Cancer
    #PraderwilliSyndrome

    Admittedly, people who have those conditions and those who love them need support and awareness, but what does the ribbon actually mean when it means all of those things? Do people really go up to a ribbon-wearer and ask, “What are you wearing that ribbon for?” Or are they used only when a bunch of people gather who are advocating for the same thing, in which case why do they need ribbons?

    The proliferation of ribbon colors is stunning, too. In addition to the green, yellow, pink, orange, and teal/white mentioned above, there are awareness ribbons in: black, blue (two-tone, blue/gray, denim jean blue, indigo, navy blue, light blue, robin’s egg blue, royal blue, pale blue), brown, burgundy, cloud (?), copper, cream, gray, gold, jade, peach, pearl, purple, puzzle (not technically a color), red, silver, teal, violet, yellow, and white, plus assorted combinations of the above and myriad shades of most. I could find only a few colors that represented a single condition or cause. And symbols proliferate, too: infinity, circle, star, butterfly, and even fox tail.

    I once saw a person soliciting donations with a black-and-white cow-spotted ribbon, for a dairy farmer who’d lost his barn in a fire. A number of the other colored ribbons are used for fundraising too, particularly the Susan G. Komen Foundation’s pink ribbons, which can be found on nearly any piece of merchandise you’d care to name. But if you have a t-shirt with, say, a green ribbon design and a slogan about bipolar awareness, why do you need the ribbon at all? The slogan carries the necessary information.

    Will ribbons for causes go out of vogue? Not soon, anyway. I’m not saying that all these causes and conditions don’t need awareness and understanding and fundraising. And there are certainly “orphan diseases” that don’t have the awareness factor that pink ribbons convey.

    What I’m worried about is the signal-to-noise ratio. With all the combinations, what does any particular one mean? (I had to look them up on a chart to write this post – www.disabled-world.com/disability/awareness/ribbons.php#Disabilitywww.disabled-world.com/disability/awareness/ribbons.php

    After all, what does a pink ribbon really convey? Self-check your breasts monthly? Get mammograms? Celebrate survivors? Give money?

    Ribbons are easy to make and to wear, but knowing what to do about what they represent is a matter for education, not just awareness.

    Community Voices

    Forgiveness and Understanding towards Medical Professionals

    Yesterday marked 16 years since my initial brain tumour diagnosis. Yesterday was also the day we had a Neuro-oncologist come and speak to our brain tumour support group about Gamma Knife™. It brought a lot of clarity for me in ways I had not expected.

    When I was first diagnosed, I could not find a neurosurgeon in my state willing to take on the delicate surgery required. I searched for 8 years without any success until I looked interstate. I found a neurosurgeon willing to take the risk and confident in his ability to help me. I cried tears of joy at the news he could save my life.

    After surgery I was very angry with the neurosurgeons who had refused to treat me. I wanted to go and see each and every one of them, stand tall and tell them that I had won the battle despite them. However, I didn’t do that. I can to realise that I was far better off having a confident neurosurgeon with my life in his hands than some one who was not confident or able to do the job.

    Yesterday as I sat and listened to the presentation about Gamma Knife™ , I realised that while Gamma Knife™ could have worked for me and saved me from many of the deficits I experienced after surgery, it wasn’t available in my area until 2015. I was given a prognosis of 6 months in 2010 so there is no way I would have been able to access the new technology.

    It has changed my perspective and I have been able to let go of those last feelings of anger and frustration about my medical treatment. Quite simply, I was not able to access the services I needed because they were not available. It wasn’t personal. It was most likely very difficult for the specialists I saw to turn me down. I have a new sense of freedom, compassion and understanding. I not only forgive the specialists who said no, I have great empathy for them.

    The tide has turned. #AdrenalCancer

    Community Voices

    Instagram Girl You Need To Meet The Girl With Cancer

    She had over 30, 000 followers and her picture showed up in my feed. Instagram Girl was wearing a bra top and yoga pants and was taking a selfie from the side. I stopped scrolling to read under her photo. When I was done I realized, ‘Instagram Girl you need to meet the girl with #Cancer.’

    Instagram Girl You Need To Meet The Girl With Cancer

    Something about Instagram Girl reminded me of my daughter-in-law Jazmin.

    She was ultra-thin. I thought to myself, “Maybe she has cancer too?” I’ve learned not to assume people are thin on purpose. So, I decided to read up about her and came to the conclusion that she didn’t have cancer. She was quite proud of herself for recently losing weight. Instagram Girl was also trying to help others become ultra-thin like her. She looked to weigh about 100 lbs and was possibly 20 lbs underweight. But it’s hard to tell from a photo on social media.

    Jazmin is 25 lbs lighter than her normal body weight right now. She doesn’t talk about it much or let her weight bother her. Jazmin has accepted that this is what comes with having stage 4 #AdrenalCancer. But if she had a roll to squeeze around her middle she’d probably be delighted! Recently she learned one of her pain medications causes muscle wasting. She decided she wanted to wean off that medication.

    Jazmin’s goal is to be healthy and have a good quality of life. Ultra-thin was never her goal.

    Jazmin and Eythan walking through a park.

    I thought about how Jazmin would gladly trade in her body with for being overweight by 20-30 lbs.

    Most of Jazmin’s weeks are filled with doctors appointments, pain management, home care visits and trying very hard to lead a normal life. Yet, she’s been an inspiration to many girls and women with her outlook on suffering and still finding joy amidst the pain. Jazmin believes God has a greater purpose behind her suffering. *Read her post, Totally Unfiltered: Who I am Today.

    For now, I am enjoying life. I live day by day. Each day may be amazing or terrible but my husband, Eythan and I are enjoying every second that we have together now, just in case.

    Jazmin

    jazmin and Eythan at his workplace.

    Eythan and Jazmin have only been married a year and a half. They have lived in two apartments, a house, and just recently moved into another house. Jazmin also lived with us, her favourite inlaws, and also a family in Arizona during treatment. Her life has not been stable, organized or pretty.

    Jazmin sitting on a chair in the kitchen.

    This past year, Jazmin has helped plan a conference for women, spoken at a conference, modelled for a clothing company: Eddie Mira Clothing, painted her new house, planned a baby shower for her new niece, been an amazing wife, taken an online course, been on the radio sharing her story, and encouraged people with her journey through blogging. Visit her site: Jazmin Unfiltered.

    Jazmin has created a lot of meaning in her life, even though she can’t work and some weeks she’s in bed for the most part.

    Jazmin and Cindy painting the living room in the new house

    Me and Jazmin painting their new house rental.

    Margaret Niemczyk asked Jazmin to model for her clothing company, Eddie Mira Clothing because she wanted a young woman who would inspire others with her outlook on life. Margaret didn’t pick Jazmin because she was thin, she chose her because Jazmin has been a wonderful role model for other young women to look up to.

    I thought of Instagram Girl and her priorities. I wondered what she could be doing to influence the world instead of trying to help girls get thin.

    Jazmin and Kyle in their housecoats

    *pictured above, Jazmin and Kyle. Kyle has autism and Jazmin is the sweetest sister-in-law to him.

    Watching Jazmin deal with terminal has been incredibly uplifting. Sounds strange, I know. Most people fear this disease, and if they ever heard that word from their doctor’s lips, their world would come crashing down.

    But Jazmin takes each day, one at a time. She’s asked her doctors not to give her a timeline, and not to tell her how much the tumours have grown in between CAT scans. She doesn’t want the results to affect her attitude or mindset of, “My life is in God’s hands and he determines my timeline.”

    If she had accepted chemo, Jazmin had a 20% chance of living five more years. Jazmin’s family decided to forgo the chemo, so her quality of life could be good for the short time she had left. In just a few more months Jazmin will have outlived the prognosis.

    Now each day is a miracle in itself.

    Jazmin’s will not be disappearing EVER unless she gets a miracle. There’s nothing the medical community can do to make it go away. But she cherishes each day as a gift and tries her best to keep living life with purpose and an unselfish heart. *I wrote another post, The Joys of Having Jazmin. You can read the ways in which Jazmin has touched other people’s lives.

    Instagram Girl you need to meet the girl with .

    Eythan and Jazmin holding baby Alice.

    * Eythan and Jazmin holding their niece Alice. Jazmin helped her sister-in-law Charity through labour. She was a wonderful support to Charity and Dan.

    Jazmin lives purposely. She has chosen to do things that are meaningful to her or those she loves.

    I’ve seen Jazmin go to events when she was in pain because she knew it was important to someone she loves. Rarely, have I seen her live selfishly.

    Jazmin generously gives of her time, encouragement and hospitality:

    If you want someone to cheer you on when you are going to try something new or scary, you need Jazmin. When you are going to organize an event and can’t do it alone, you need Jazmin. If you are feeling hopeless about your situation, you need Jazmin. If you become really successful at something and want someone to jump up and down and celebrate with you, you need Jazmin.

    Instagram Girl could impact the world in a profound way. She could help mom’s with nutrition for kids, or assist the elderly in eating better. She could lobby the government to feed children after school, whose family’s don’t provide dinner. Her talents could be used to make a huge impact on the people around her.

    At the end of our life, we leave these bodies behind, and they no longer have value. To focus on getting them to a state where they are underweight seems meaningless.

    What is your purpose in life? Do you believe it will change the world for the better? Ask yourself these questions:

    What can I do to make the world a better place to live? Do I have talents or gifts that I can use to bring others happiness or joy? How can I leave behind a meaningful legacy people will remember?

    Jazmin sitting on a chair in the kitchen

    *Bring an elderly person some flowers.

    *Babysit for a new mom.

    *Send a card to a single mother telling her she’s doing a good job.

    *Shovel someone’s driveway.

    *Buy coffee for the person behind you in line.

    *Open the door for someone ahead of you.

    *Write a letter to a war veteran.

    The list is endless to the happiness you can bring other people.

    Allow your life-goals to be; kindness, compassion, serving, and also bringing joy to those around you.

    In a world of thin-is-in lies; be the one who helps people realize life is about using our gifts purposefully, to make the world a more beautiful place to live.

    Kelsey Batson

    Getting a Tattoo Before Starting Immunotherapy for Adrenal Cancer

    Adrenal cancer is one of those orphan cancers that takes you by surprise when it returns, and even still when it doesn’t. I found out a few weeks ago that my disease had returned again, and needless to say, I am slightly bummed. I start an immunotherapy drug on Wednesday, and the hope is that it will curb it for longer than just the two months it has been staying away. The dream, however, is that it will be a cure! My thoughts, as they do in many moments throughout the day, flew to my brother G when I heard the news and I wished, not for the first time, that he were sitting with me in that cold clinic room. Before my baby brother died, he described to me in detail the type of tattoo I should get for him. I was sitting next to him in the big blue comfy chair while he was in his hospital bed, lucid and at peace. Our conversation went something like this: Me: “G, what symbol should I put on my wrist for you?” G (without any hesitation but with a slight smile): “An infinity sign.” Me: “Why is that?” G (smiling even bigger): “Because I am always thinking the same thing.” Me: “Yeah? Like what?” G: “Like, ‘what the hell is going on??’” Me: “What else do you think about?” G remained silent for a moment, and turned his head towards the window. After a few seconds, he said, “…but you should put stars inside of each side.” He smiled really big after this and looked me in the eye. Me: “Why is that?” G: “Because they are infinite. They never die.” I promised him I would do as he asked. The conversation ended after that as his attention turned elsewhere (to the cows that lived in the field across from our apartment), and I got choked up because of his answer. He was lucid for that moment, as he was for so many others, and I am so thankful for that moment and those wishes. I got my tattoo today, with some modifications (I am sorry, G! But I know that you forgive me!), just in time to start treatment next week. It is an experimental immunotherapy, given via infusion over 30 minutes once every three weeks, and should not change my life in too many ways (except to hopefully give me a cure, knock on wood!) I suppose that I am at a junction in my life. Completely in love with a girl who makes my heart smile, in the middle of graduate school and finally healthy enough to ski and adventure and play violin for several hours during some days and drive like hell to get through a blizzard to work the next morning. However, there is also the other hidden part. Adrenal cancer is a type of cancer that is not visible to a person walking down the street giving me elevator eyes. I still have my hair, don’t use a wheelchair and am not bedbound, and am still eating (ish). The only way it is possible to tell is if you know me well and can notice the days when the color has fallen from my face because of pain, you have seen the shape of my body change from when they removed organ after organ over the past few years and from many surgeries (and yes, I am a full supporter of just installing a clothing-grade zipper in my abdomen so as to make it easier on both the surgeon and patient) and you can tell I am acting differently when my endocrine system starts to crash and I begin to slur or become incredibly confused. I think the purpose of this post is two-fold: to point out that not everything is visible to the eye, and I am thankful for that. However, as I embark upon this next step in treatment, continue along this process of school to someday help people in the same ways that my family has been helped over the past 14 years and continue to try and open my heart to the world around me, I will have this little token tattoo to remind me that life is fleeting and worth every moment. No matter the issue, whether you deem it small or large, regarding health or sanity, even love or loss, life is worth living. Baby G taught me to live every day to its fullest, even if that means napping for most of it, because that will make the following day even better. And maybe, just maybe, I can stop judging myself for what I can’t do, and start thanking my body for the things I can do. I look at the stars a lot more than I used to. Maybe in a few years I will invest in a telescope. After all, although stars change just like everything else, some part of them are always there, watching out for us from above. Immunotherapy – with your help, I can beat this. In another 50 years, I will still have my tattoo, and hopefully, I will still be skiing. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via chaluk.

    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.

    Kelsey Batson

    Letter to People Who Don't Know What to Say After Illness

    Dear people who tell me, “I am sorry, I just don’t know what to say…” – I forgive you. My baby brother was diagnosed with leukemia at age 9, and he was diagnosed with a brain tumor at age 20. I was diagnosed with metastatic adrenal cancer five months after his brain tumor was deemed terminal. Most of the outcomes of these experiences I simply don’t understand, based on a basic knowledge of what is good and fair. However, here are some things I do understand. I understood when some of my brother’s closest friends stopped coming to see him. It made sense when most of you stopped writing or calling, because you didn’t have the words. I understood when I had just my partner and loved ones with me during my surgeries, radiation rounds, and doctors appointments — sometimes it was even better, because I can remember how proud my baby brother was when he walked into my room, so happy to be the one taking care of me for a change, and presented me with a puppy stuffed animal that had taken him 20 minutes to pick out because he wanted it to be just perfect. I prefer now when my cancer comes back these days to tell only my family and closest friends, because I understand surgery, the ICU and cold recovery rooms are not for everyone. It was our picture to hold close to our hearts when my baby brother fought with every breath and a smile on his face, and when he danced his way into sleep. Because truthfully, there will never be words enough for that. Our middle brother grew up scared and afraid every day because of our shared genetics, but mostly on his own he has turned that fear into care and love. He has become a support, a confidant, an independent and strong young man and most importantly, our brother with humor that makes us double over in laughter. I do not understand how my mom lost her baby boy. It is too much that now she worries every day about the well-being of her other two children — one sick and one not. And it is not fair that she blames herself. But to her friends and partner who are there for her, you have no idea the strength on which she relies that comes directly from you. She is too proud to say it, but I can: Thank you, forever. And so to all of you — I forgive you. On behalf of my baby brother, the strongest and most wonderful person that I have ever known, my best friend and my hero, I know he forgave you too, and long time ago. As for me, I forgive you, too. Because there are no words. Sometimes all I need to know is that you are there, ready to talk about your own lives instead of my illness or that of my brother, who I am sure is smiling at you from the corner of my hospital room although we cannot see him. I need your love and your compassion and your good thoughts even from across the country. Most of all, I need for you to say only what you are comfortable with, to visit when you think you will be all right, and to support me when I get better and worse and better again — because that is the course of my life now. I love people to laugh with, to gossip with, to adventure with, and a few to cry with. So for those of you who can’t do those things — please know you are forgiven. This world of illness is not for everyone. You are loved either way. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.