Here's My Story:
"You have cancer."
...those 3 little words no one wants to hear. They tell you that cancer is not a physical emergency, it is an emotional one. It doesn't help that you are immediately bombarded with information that you really need months to go through to truly understand, and it doesn't stop the life-altering decisions that you are immediately asked to start making. I'm not talking about a couple pamphlets to peruse and a buzzfeed quiz to tell you which Harry Potter house you belong to - there was an actual textbook to go through, complete with definitions and graphics and worksheets to fill out. There are more tests to schedule, more doctors to see, staging to navigate, surgeries to choose between, mastectomy or lumpectomy, to reconstruct or not to reconstruct, directions for keeping track of fluids draining from surgical sites, choosing implants of various types of liquids or fat from your back, butt, or belly, tattooed skin or nipple sparing, laundry lists of risks and complications like other cancers, loss of fertility, lung wall damage, burns, infections, nipple death --
"I'm sorry, did you say, nipple death?"
Yeah. Yeah he did. Emotional emergency is putting it lightly. It's like slamming into a brick wall before you even realize you got into the car. Probably the best piece of advice I got early on for dealing with cancer is that you have to be your own project manager. Trust me when I say that is really, really good advice. So, that's exactly what I did. I started recording all my appointments so I could focus on gathering information in the short window of time I was allotted to make life changing decisions. I went through the recordings and I prepared questions. I brought friends sometimes to help me digest all the info and make sure we weren't missing things. I did research, I brought articles to appointments, I got multiple opinions from all over the spectrum, some solicited, some not. I listened calmly and focused my energy on fact gathering and saved my emotions for private processing later. Ultimately where I landed was more than a little troubling. For those who don't really have any experience dealing with cancer directly or navigating the healthcare system with a serious disease, I will tell you it is far crazier and frustrating than you can imagine. And in my case, what made it even more unbelievable was how quickly people were willing to take serious risks with my life, and how little patience they had for being questioned.
I'm generally a pretty reasonable person. Although I can be emotional or irrational at times, I will usually rely on information and logic. Make it make sense to me and you probably will win your argument. The bottom line is this: I am incredibly fortunate that as a woman in my early 30's at the time, I had a very biologically favorable cancer. Cancer, as crazy as this sounds, was not my biggest health problem, and more importantly, it was not the only problem. And now an even bigger problem was the lack of interest those other issues were to the myriad of doctors and medical professionals I saw as I was trying to figure out the path to my cure. I held medical records in my hands and literally begged more than once for my other health issues to be taken into consideration. Nope. If it wasn't on a checklist, it didn't matter. Extra chemo before and after surgery, extra radiation, tamoxifen for the rest of my life instead of the 2 or 5 or 7 years it is recommended for, based on which doctors you asked and what version of the statistics software they were plugging your general range of results into, several of which didn't even fit my actual test results.
"You're young. You're healthy. You'll bounce back."
I have an autoimmune disease. I have severe adrenal issues. I have multiple vitamin deficiencies and normal processes that my body just doesn't do. Prediabetic, overweight, and chronic insomnia, which caused its own fun world of problems mentally and physically. They got the "young" part correct at least.
For the longest time I felt like I was just screaming into a void, begging for someone to understand that I am a human being, not a number. I have a complicated health situation and I needed someone to care enough to see that. I tried more doctors and facilities than I can even remember at this point, but at the end of the day, it just wasn't happening. I went through with having 2 surgeries, a lumpectomy and a re-excision. Both were hell. 6 years later I am still dealing with complications from these "simple" surgical procedures. I denied further treatment of chemo, radiation, and tamoxifen. Watching very closely and making lots of friends at the MRI facility, I was free of any visible tumors for a few years. In 2014 they came back.
For years I was keeping the cancer at bay through the use of medical cannabis and lifestyle changes while I searched for a better treatment plan. I needed a plan that addressed the whole picture of my health and looked at me as an individual, not a statistic. Thanks to the suggestion of a friend, I found an Immuno-Oncology program through the Issels Foundation (http://issels.com/issels-foundation/). The treatment they offer is completely non-toxic, using your own immune system to target your specific cancer cells and destroy them, instead of poisoning every cell in my body and hoping I "bounce back". They also offer a significant amount of immune system support, supplemental health programs, psychological support, general health and fitness, and lifestyle changes. The treatment plan focuses on not only curing the cancer, but fixing the environment that allowed it to grow in the first place. This for me, with everything going on in my body, is an imperative.
After what seemed like endless jumping through hoops to get there, I had FINALLY found the kind of individual care that I believe everyone deserves to get. Now all I had to do was come up with the funds to cover the program. Insurance would only cover some of the labs and only after treatment. The creation of the vaccine alone is $22k upfront. There is also weekly costs for treatments, housing, and the cost of the 6 months of treatment you bring home with you after a 5 week stay at their facility. And of course I still have an apartment, a pet, and bills to pay while I'm away, on top of past and current medical bills stacking up to rafters. The price tag on my dream-come-true individualized care that was more likely to cure me than kill me, was unfortunately enormous and feeling a bit insurmountable. For a long time I struggled to really visualize the future. I basically stopped believing I had one. When I got the news that I was accepted to this program, all of a sudden there it was - my future! It was this real, actual thing again. I didn’t know exactly how I was going to make it happen but I knew that I had to! It was still a relatively new year, plenty of time to finally start the fight for my li...
“...I have your mom here in the hospital. She’s stable but in critical condition.”
On May 23rd of this year, I lost my mother unexpectedly. I was very close to her and my profound grief and all the complications of the circumstance leading up to, during, and after her death, has brought me to a new level of emotional and physical struggle, the likes of which I never would have believed I could overcome. This year has been a series of brutal challenges and I can feel their understandable consequences on my own physical health. My clock is ticking. The urgency for me to truly put myself first and start fighting for my life is more apparent now than ever before.
"What’s the point of surviving this? Is my life worth fighting for?"
Yes, it is. And so is yours. Sometimes it doesn’t feel like it, but it absolutely is. Life sucks. It’s hard and it’s full of challenges and sometimes that just feels impossible. But it’s not. You just have to get through them to the new ground on the other side. That’s why we need each other. We need to stand up for each other, speak out, share our life experiences so we can grow and evolve and survive together. I want to live to give hope, and strength, and a voice to others who are in my position, or worse. I want to live to give comfort to those who are struggling, to bring joy and laughter wherever I can to help ease the pain and the strife, even for just a few moments. I want to be a voice that sings and speaks when others can’t, a hand that reaches just a little farther when yours can’t. I want my story and my fight to be a guiding post for others -- to be a reminder that we can all survive a hell of a lot more than we think we can. I want to be a light in the darkness.
I firmly believe that a day will come where things like Immuno-Onchology, Medical Cannabis, and all kinds of more holistic and non toxic treatments, will not only exist everywhere, but be reasonable and attainable for everyone. I want to live so that my survival can be further evidence that one size does not fit all when it comes to health care and how we are treated as patients and people. Someday we will look at chemotherapy the way we look at drilling a hole in someone’s head to let their demons out. We CAN do better. We MUST do better. Please help me fight.
I need the majority of these funds upfront before I can even begin the program and I am racing against the clock to get there. Please help today by donating anything at all that you can spare, and by sharing this with as many people as you can.
Thank you for your time and for your support.
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