This is a little late, but let me properly introduce myself!
I’m Sabrance! But I don’t mind going by Sabey, or even my artist name – which is DarklingArtist. I’m a digital artist and a cancer survivor who is currently suffering through a few chronic health issues brought along by the care I got some twenty odd years ago. There’s was nothing wrong with the method of treatment, so this is not at all a reflection of Memorial Sloan Kettering Cancer Center is Manhattan. They were amazing to me and my family.
My health is due to the lack of health care after my cancer treatment. You can read more about my diagnosis in the series of posts I made about it (At the Beginning; My Diagnosis, Shared Fears, Last Man Standing & You Abandoned Me). Due to the way my life collapsed once I went on remission and lost my mom, I fell through the cracks and now, at 33, I’m struggling with the disabilities it has given me.
What are your chronic health problems?
Oh, I’m so glad you asked! Most of my complaints have been with me for years: chronic nausea, vomiting, and overall gut issues. I’ve always had body aches but my doctors, apparently, couldn’t find the cause of it. Once I turned 30, my persistent problems finally spiraled out of control and I was gifted a long list of problems for my birthday. I’ll summarize my issues to the best of my ability.
Fibromyalgia, and I guess you can call the cervical myofascial pain syndrome a subclass of that; cold weather triggers most of my flare ups, which sucks as someone living in New York. My shoulders, and collarbone hurt the most, but it especially makes receiving affection difficult as I can’t tolerate much of a hug if the person isn’t gentle with me. This makes me feel like glass, but my family are kind, and understanding. It doesn’t help that I also suffer from subacromial bursitis of the shoulder joints. Now that can hurt like hell if pressed the wrong way. It usually makes sleeping on my side a challenge. Actually, now that I think of it, I suffer from chronic bursitis of almost all my joints. My hips and knees tend to swell the most.
My hips are my biggest complaint. The pain that radiates from them tend to keep me in bed the most, as walking leaves me feeling unbalanced and unsure of my footing. Imagine the look on my face when it was discovered that I suffer from something called a mild acetabular retroversion. In laymen’s terms; my hips are f**king backwards. Due to this, I suffer from osteoarthrosis. To make matters worse, I also have a few bulging lumbar disc and a pinched nerve along my lower back. This leads to Osteoarthritis.
Lets get it out of the way now – I basically have all the arthritis.
These hips of mine also suffer from a torn labrum, a capsular thickening of the joints that lead to limited mobility and something referred to as trochanteric pain syndrome, which is just another fancy term for my chronic hip pain.
Degenerative joint disease in both ankles and feet, alongside plantar fasciitis; as if my hip pain isn’t enough, walking is a challenge if I’m not wearing proper footwear. My years as an employee in retail did not help the progression of this problem, but that is what makes retail such a hard job to do.
During the pandemic, I struggled to comprehend the way people treated us ‘essential workers’. It felt like nobody had sympathy for the people forced to run the grocery stores or pharmacies during what could be considered as the modern day plague. I, as a cancer survivor, was suffering constant pain just to be on my feet to run these businesses. Imagine someone who is healthy attempting to do that for a solid eight hours everyday over the course of ten years. I’ve been told by doctors that retail work suffer the most long term affects. Yet the workers are always disrespected (excuse my mild rant).
I have osteonecrosis on my left knee, and acute bilateral swelling and pain. Every time I go over my health problems, I can’t help but pause in horror as I think about the word ‘necrosis’. Part of my knee is actively dying and yet it still functions, if only in a lot of damn pain. The human body is terrifying when you break it down like that, and I am actively doing my best to maintain my motivation to work on myself in physical therapy. However, part of my knee is dying and that is a recurring thought I have… every day.
I struggle with radiculopathy with lower extremity symptoms. This means that I have persistent problems with decreased sensation of both my legs, along with numbness and tingling. It often leads to muscle weakness that make it so that a block or so of walking takes me much longer than I’m use to. Before I had these issues with my legs, I use to actively walk miles a day. Whether it was for work, or pleasure, I was able to wander for more than 10 or so miles without much need of breaks. I use to be very proud of how strong my own two feet were as they carried me further than the pain I struggled with along my upper body. I hate how weak I am now…
As if having lower back pain wasn’t bad enough, my cervical spine also has something referred to as a mild straightening loss of the normal lordotic curve with no fractures. I, word for word, just wrote out what my MRI said. It is a lot of fancy talk that says my neck hurts, and is having a tough time holding my skull up. I know, I’m fed up just living with it. There’s a number of other things wrong with my cervical spine that would require copy and pasting once again, so I’ll just summarize it: my neck hurts, and it sometimes gives me bad headaches.
(Fun fact: pictured is a real screenshot of the MRI for my neck. No, I have no idea what I’m looking at either.)
If I get any sleep, I’m connected to a CPAP machine to make sure I keep breathing because of course my body is trying to kill me by randomly deciding that I need to hold my breath. I’ve only been on the machine for a little under a year and I already do feel the benefits of it. In the mornings and evenings, I take a number of pills to tackle all of my problems. Most of them do their job, but none of them take most of my pain away, leaving me to struggle for more than seventy five percent of the day. I juggle a few hobbies to keep me active and productive, but I’m no where near the level of active I use to be in my twenties. That is where my depression and anxiety take over, leaving me feeling like nothing more than a waste of space. However I’m positive, and maintain the relationships in my life to the best of my ability. I’m pretty positive and upbeat in person, so don’t let my blog posts fool you.
Along with my chronic issues, I have a sliding hiatal hernia and a high functioning liver. I’ve lost my gallbladder due to the many internal problems I struggle with. I’ve been hospitalized roughly five times in the last tree years, and I’ve suffered two bouts of sepsis because of mishandled surgical care. None of my days are ordinary, nor do I expect my future to get any better. Especially not with the possibility of another cancer coming to upend my life.
How many cancer scares have you had?
Roughly 4. I’m checked for Hodgkin’s Lymphoma often, as it is a cancer that can reoccur, but I’ve also juggled a few scares in the last five or so years. My bloodwork is always throwing me and my medical team a curveball. I’ve been checked for ovarian, and breast cancer. I’m positive for breast cancer, and so that means I’m obligated to check them every year. I like to mention the little top-hat shaped marker I have in my left boob as it makes me giggle. Removing the possibility of getting that diagnosis would be easy with a double mastectomy but I don’t think I’m ready for such an invasive procedure. Not with the problems I’m currently facing.
I’ve already had a number of fibroids removed from my ovaries just last year. Nothing too concerning, just a case of bad period cramps and intense bleeding. I feel somewhat normal now that they’re gone, and while I could have saved myself a future surgery by getting a hysterectomy, the state of the world didn’t allow me to do so. Unfortunately my hospital had protocols against removing the ability to have kids in younger women, no matter their health problems. I’ve expressed the fact that I can’t carry a child to term even if I wanted one, but there was little I – or anyone – could say that would overturn the protocol. Maybe one day soon I’ll get it removed and avoid the possibility of cancer invading that part of my body but for now, I’m able to live with my uterus. Even if it does annoy the hell out of me.
What is Hodgkin’s Lymphoma?
The lymphatic system is apart of your immune system. It helps protect you from infections and disease and yet mine just had to go, and get cancer. I was 13 when I was diagnosed, and it was on my birthday in October. By the end of November in that same year, I lost all my hair and ballooned up due to the treatment. I wish I could tell you the kind of hodgkin’s lymphoma I had, or the treatments they use to tackle it, but I don’t have that information. Maybe one day I’ll get brave enough to request those documents just so that I can read through the months of chemo and radiation I endured, but for now I’m okay with the mystery.
I can tell you that I was misdiagnosed twice. My doctors insisted I had the mumps due to the tumor on the side of my neck. My mother was a nurse at one point in her life, and pressed for more tests when the original antibiotics didn’t work. One dissection and a surgery later, and I’m a patient at Memorial Sloan Kettering. My cancer was said to be stage 4 by that time so the treatment was aggressive. Knowing that, it’s no wonder why I am struggling with my health now. Not many people can receive a diagnosis like that and walk away. The ones that do, well, there’s a price to pay as a survivor.
(Source: Hodgkin’s Lymphoma)
It is considered a blood cancer, and my family is well acquainted with blood cancers. My oldest sister, Ama, was diagnosed with leukemia and died at the age of 25. I was five years old, and hardly remember my relationship with her. What I can tell you was that she was raising me like I was her own daughter. Given the age difference between us, I imagine you’re confused but that is a story for another time. Just know that she gave me my name for a reason.
What kind of cancers are in your family?
A lot, to put it bluntly. I’ll put it in order of the family member it has affected, and how I remember it.
My sister, Ama, suffered through leukemia. I think she was diagnosed at sixteen but I could be wrong. All the knowledge I have of her diseases come from my mother and my brother. My mother gifted her one of her kidneys in order to save her, but it had only given her another year of life – or so I was told. She was on dialysis when she passed away. There was a complication with the device, and she ultimately died of a heart attack when it malfunctioned.
My uncle, my mother’s older brother I believe, passed away of colon cancer. I don’t remember my age when this happened, all I remember is the family drama that came in the aftermath. I know my mother helped, but to what extent, I don’t remember.
My mother had two brushes with cancer (I’ve been told), but what killed her was the ovarian cancer that came in the middle of me and grandma getting treated. She passed away at 51. I don’t recall if she had gotten treatment, or if the diagnosis was terminal right out the gate. I was still in the process of treating my own. All I remember was the times I visited her when she was in hospice. The photo on the right is the only photo I have of us before she was bedridden.
Last, but certainly not least, my grandmother. She had a tumor in her stomach that wasn’t aggressive, but made it difficult to hold an appetite for long. I can’t say that the cancer is what took her, as she suffered the lost of two out of three of her children, but she died comfortably in Puerto Rico. I know we started our cancer journey together, but she was being treated at Beth Israel Hospital while I was at MSK. I can’t even tell you how my mother managed to handle that. I suppose that is the magic that all mothers have. They shoulder the burden enough so that the child never understands that they’re being raised in hell.
Photographed to the left is me and my grandmother on my 14th birthday. My mother made the cake.
I want to make an honorable mention to my husband’s mother. She had a fair share of struggles, but cancer was what ultimately took her life. I’m sure she comforted my mother with tales about how I’m doing here, but I mention her not only because she was yet another member of my family to suffer through this damned disease. She was a beautiful soul, and easily became a mother to me as well.
What do you expect from writing this blog?
Honestly, I don’t know? I’ve been told, repeatedly, that I should share my story and the stories from my family, however I never knew just how to do that. Nor did I want this to become apart of my personality. For most of my life, I spent it suffering the aftermath of the tragedy that struck me as a teen that I wanted nothing to do with it. I would speak on small details here and there, but never to this extent – and never with the intention of receiving something in return. Most of the time I mentioned my brush with cancer just to have commonality with people who I’ve met suffering through their own experiences with it. Sometimes it was brought up in conversation as a small tib bit about myself, other times it was just a moment of weakness.
As a matter of fact, that was where the creation of this blog came from: a moment of weakness. December of 2023 had just started, and I had no real reason to start this off like that, but I suffered the loss of my small companion, Jinx (pictured). A pet bunny I had for five years. She became my emotional support animal during the worse of my health issues that began in 2020. Losing her sent me into a spiral I needed to get out of, and so I started writing as a way to cope. I guess you can say that is why my blog started off a big chaotic. It is bringing me some comfort, especially now that I don’t have a furry little companion to keep me busy.
My living situation is rough at the moment. I don’t have income, and my disability case is still pending, so I’m at a loss for what to do to maintain the space I have now. My husband works almost every day, but what he makes isn’t nearly enough to keep two adults alive. It feels like everyday my luck is taking a toll on me. I don’t have any lofty expectations for this blog. I just decided it was about time I took a piece of the internet and carved out a space for me and my unique family. Call it a desire to leave a legacy behind should the worse come to pass, or maybe a way for me to finally organize my life enough to produce a book – whatever this is, I’m enjoying the process and the freedom it is giving me.
If there is one thing I truly wish my blog can provide – I hope my blog can inspire. Breed hope. I know my story, and the posts I’ve put down so far seem so dim, and dark, but it gets better for me. I’m still struggling, but I’m happy and trying to make the best of a bad situation.
Remember, I’m a digital artist! I have a small following on tiktok, and I cosplay whenever my health allows me. I go to conventions should the situation allow for it, and I enjoy a number of video games and hobbies that keep me content. I have a family I love, a husband who cherishes me and I do my best to help people when they need it. I suffered something tragic, but out of it, came the life I’m living now.
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Exposer SucksJune 12, 2024
I forgot your favorite cake flavorJune 10, 2024
There’s Always a HeroJune 1, 2024
Inspired for OthersMay 29, 2024
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