My radiologist had actually become my primary doctor, as the oncologist remained largely unavailable to me, especially so after hearing the news that my health insurance would lapse within the coming months. The oncologist increased my dosage of radiation, and rescheduled my GI, endoscopy, and radiology follow-up exams to earlier dates. The radiation office not only waived a significant portion of their own service fees for me due to the situation, but also helped us to handle a big part of the lengthy medical dispute we were facing with our insurance company. They eradicated most of the tumor, but could not remove my residual scar tissue, before our COBRA expired. Even with all that they had done for us up until then, there were still strict systematic limits as to what they were permitted to do for us after that time. Not only was I without insurance yet again (my husband was too), but I was also now without the support system that had been my radiologist and their crew—something that was much much harder to overcome than I had expected it to be.
I was in remission, but back to square one as far as access to medical coverage went. I was in remission, but I had undergone medically-induced premature ovarian failure, and was deemed post-menopausal before I would even reach my thirties. I was in remission, but couldn’t take hormone replacement therapy or herbal alternatives, because I was already at increased risk for recurring and/or second cancers. I was in remission, but had semi-permanent radiation scars and temporary post-chemotherapy cognitive impairment. I was in remission, but I still wasn’t well enough to return to work, go to school full-time, or to take a belated and long overdue honeymoon yet. I was in remission, but I was depressed, and didn’t know how to move forward without the regular group of doctors and nurses who had been there for me emotionally only a week before.
Why was my life saved (and through such extreme measures), only to be put right back at risk, through the ever-incipient denial of insurance, medical assistance, and access to healthcare? What was the point of it all?? It felt like maybe I shouldn’t have been striving so hard to live, but instead perhaps that I should simply have accepted the inevitability of my own death (something I am now faced with every day that I do wake up in the morning, anyways). My husband had only been able to find part-time jobs, since his old workplace had closed. So, we knew that we would have to move out-of-state to get the help that we needed. We just hadn’t anticipated that it would be even harder to get coverage, aid, or access, once we left. And, we still don’t know how much harder it will get, as we continue to race border-state budget cuts and residency requirements, just trying to keep me alive. Sometimes, it’s hard not to doubt that we’ll make it in time at all.
I have always worked hard, and I’ve always tried to give back to the community. I was glad to pay my dues, and happy to put in my time. So, I have an exceptionally hard time understanding how so many have come to turn their backs on me as I ask them to help keep me from dying, if not from hurting, particularly when that’s supposed to be their job. How come I’m not worth your time and attention? Why don’t I deserve to live? What’s so wrong with me, that you can’t even tell me what’s wrong with me?
I wish that I could leave you with a happier ending, but this never-ending vicious cycle has not left us with much optimism, hope, or spare change, ourselves. Aside from knowing that my tumor is back, we don’t know just how bad it is. What we are gravely aware of is that I am out of the safety net and into the danger zone for lymph and bone involvement plus metastatic cancer growth. It’s proven impossible to get a standard colonoscopy and biopsy at my age (twenty-plus years too young) without a doctor’s order, and impossible to get a doctor’s order without insurance or assistance (but, you’ve already heard that story before). …all this, even in spite of my personal history of colon cancer… And, it will be equally impossible to get any traditional treatment if/when the cancer spreads to my liver or lungs, too. But, at least nobody will be talking about colostomy bags then, anymore. When we do find the rare body scanning clinic that will take cash patients on self-referral, they all also inevitable deny me the less-invasive virtual colonoscopy because I’m “still in my childbearing years” even though I’m medically documented as being POF, and haven’t had a period in over six years now. You’d think it would be a non-issue, but for some reason it isn’t. Maybe someone out there can understand our fear and despair, but a lot of other people just don’t seem to care.
I wrote my story anonymously because I fear the social repercussions and potential backlash of publicly revealing my real name in association with my disease and disorders. I am uninsured and told by many, uninsurable.
I hope that future changes will improve things for everyone, but the hard reality of it is, that some us may not still be here by 2014, due in no small part to the lack of needed healthcare, which has otherwise been denied. And, at the same time, there is little going forward with the rest of one’s life, no matter how long or short it might be, if all that there is to it, is insurance and coverage denials, either. Then, all everything becomes is painfully dying of cancer without hope of cure or relief.
Instead, I’m trying to move forward, within the constraints of my condition, while trying to keep it from others, so they do not refuse to hire me, or choose to let me go work-wise because of it. This way my life can be more about living with an invisible illness, and coping with the difficult challenges thereof, while still hearing the music and seeing the art–not just being consumed whole by despair or the inevitable end.
I’ve already had multiple people in the system tell me not to bother filling out various aid applications, and even when I still have, many have refused to take them from me, or have thrown them out in front of me. They’ve actually told me that ‘it’s not about approving people, but that it’s about NOT APPROVING them’, for economical reasons that don’t even really have much, if anything, to do with health or me. I’ve also been told by my more than one ER ‘not to come in’, ‘not to come back without at least $300’, and even then, that ‘I wouldn’t be allowed to return again until all of the tens of thousands of dollars in emergency bills were paid off in-full first.’
These things aren’t even supposed to be happening now, but they are. It’s not so much about what should be happening, but what is, and what isn’t. So, please believe me when I say–that I truly do hope forthcoming changes in policy are actually observed in the future, but please also understand when I say, from my past and present experiences, that I have a hard time believing that insurance companies and hospitals will automatically be doing so then, either.
I hope for the benefit of all that they finally do the right thing when that time comes, of course–Anonymous
a remarkable, and brave story. please note the states, cities where you find success, support, and those you don’t.perhaps there is a connection for you out there, if that hand knows where you are.