Syd's Medical Mess Created a Mess
Organized by: Sydney Wright
The plot thickens, I'm approximately 1 in over 560,000
March 14, 2016
As lengthy as this story is, it is extremely condensed. I’m praying to god and the universe that we can reach 200 people willing and able to donate $50 so we can pay past due, current bills, possibly attain other treatment not covered by insurance, and just survive with some sort of peace of mind for the next couple of months. This fundraiser does not have monetary or any time limits.
I've been working on this since 12/31. It's a difficult task/project for me and it's also embarrassing because I have to publicly announce I’m terminally ill and in dire financial straits. I did not keep my situation private just to be private; it has taken the past two years to get this information. I have discovered I can comfortably rot in place, but I have unintentionally and single-handedly drained Ashly (my partner of 22 years) emotionally, physically and financially because she has inherited the full responsibility of me by default. She has not only stepped up to the plate by carting my butt everywhere it has to go, no matter where or when, process my diagnosis that seems to change with every appointment, and come to terms with losing me. What concerns me the most is she might have to forfeit a once in a lifetime opportunity of launching a private practice as an addiction counselor. She has been a successful real estate agent since 2004. It was during the “mortgage meltdown” that she found herself dealing with one client after another in crisis due to losing their home, their spouse, and their livelihoods which became the catalyst to put her past mental health experience, psychology under graduate and her master’s degrees to work as a counselor. In 2012, she went back to school to get the necessary certifications to compliment her master’s degree, and she worked for the past year and a half in Methadone clinics, what I refer to as “boot camp,” to complete the required hours for her certification. At the same time she continued working in real estate, completed the last of the required coursework, worked (and still works) as a freelance photographer, and was a Hospice volunteer that “policy” made her stop because of my diagnosis – considered to be too stressful…
Meanwhile everything did not just tank:
My health issues started in 2010 when I broke the tibia and fibula in my right driving leg that required hardware to set. I was non-weight bearing for a month; Ashly became my chauffeur to work, doctor appointments, everywhere. Then 8 months later my “perfectly healing” leg abscessed from a hospital acquired gram-negative rod bacteria “Serratia marcescens”. The bacteria got into my bone, and they only gave me 4-6 weeks of oral Cipro; we we now know it should have been intravenous, followed by 6 months to 1 year of oral antibiotics.
In 2011, I continued to feel sick, just not right, and by 2012, I had chronic pain and fatigue with unpredictable “episodes” that cycle, with pain so intense I can barely move, and cognitive issues that make it difficult to communicate. Ashly describes them as looking like the beginning of a stroke. I could no longer work, and I lost my health insurance. I filed for disability in August 2013, only to get denied twice, and I was forced to hire a disability attorney. My Vitamin D level plummeted to 9 zapping any bit of energy I might have had, and remains low. Diagnosis was all over the map with suggestions of arthritis, neuropathy, Sjogren's, fibromyalgia, late stage Lyme's disease, borderline for Lupus…in 2014, now with health insurance, scans revealed tumors, lesions and masses throughout my body and in my lungs that “appeared infectious and or inflammatory”, but the necessary biopsies were not scheduled. Without Ashly holding down the fort both of us would have been on the street.
In September 2014, I found a new primary doctor who ordered another chest CT scan that showed growth, and biopsies were finally scheduled. On December 23, 2014, I/we were blindsided with the diagnosis of “Inoperable Stage 3B Non Small Cell Lung Cancer” (NSCLC). The cancer was also in my Lymph Nodes, “sorry, there is no infection". The radiation oncologist said I was too far-gone, too advance to treat. The oncologist wanted to blast the crap out of me with daily radiation, weekly chemo (guaranteed to make me lose all my hair including eyelashes) followed by another drug every third week. This did not appeal to me, and we believe this treatment would have killed me by now. This was devastating, Merry Christmas – NOT!
As if the last few years weren’t hard enough, emotionally and financially draining, upon hearing the news of my terminal diagnosis, my maternal uncle announced he was sending me 50k to use however I chose, needed or wanted. I was so overwhelmed I burst into tears. The money would surely help me to explore treatment options; I felt as if I might have a chance…
On February 3, 2015, I had my 2nd opinion; it was worse than the first. They said I was still inoperable, but now Stage 4 (last stage/end stage) NSCLC. They gave me 3 options: 1. Do nothing and live about a year 2. Do Chemo that might extend life and make me feel better 3. Do their exciting Immunotherapy clinical trial that was getting great results. Of course, that’s what we wanted, but they needed to confirm that I had the required PD1 cell (the cell thought to make cancer replicate). After a 2-week delay, they said I did not have the PD1 cell, and chemo was my only option, which I did from March - June 2015 with little results.
I researched several additional treatment options, but I have not been able to try any of them because the 50k from my uncle never came. After I started chemo, without explanation or notice, I received a check for 2k from my uncle. I was sick, confused, and it seemed he changed his mind about giving me 50k. Other treatment options quickly faded, still I was grateful for what he did send, and I received a couple more checks for 2k that stopped after I told him my disability was finally approved. I do not believe it’s my place to question what if anything he decides to give me, but I cannot get his offer out of my head. It’s hurtful, haunting, and I cannot understand why he would “announce” an offer like that and never follow through. Ashly was in school holding a 4.0 GPA, working full time at her “boot camp,” and her other jobs. Our neighbor graciously offered and took me to just about every appointment and “infusion” treatment on her days off (she moved out west a few months ago). We were beyond grateful and I was in a position to pay for parking, gas and even something to eat after many grueling, very long days. My appointments never seem to go smoothly or quickly and my news still seems to change with each appointment.
I think it was in April when Ashly told me about the offer she received from a highly regarded doctor she knew and held in high esteem. He wanted to start in-office medication assisted treatment for opiate dependent/addicted individuals, and wanted her as the counselor. An office space was available adjacent to his in a prime location that is 2.5 miles from our home. If needed, and if capable, I could drop Ashly off and drive myself to my appointments, and she could establish her own schedule blocking out time for my medical appointments – perfect! Of course, this was exciting, but Ashly had to tell him she did not have her certification yet. He said that was okay, he would wait.
It took hiring a disability attorney (it seems mandatory) and getting the Stage 4 Cancer diagnosis but my disability was finally approved around April of 2015. I was grateful, but disappointed to learn they would only consider me disabled as of August 2014. Heads up to anyone applying or waiting, they will automatically lop off 5 months that you and or your family will never see. They withheld August 2014 - January 2015 and my first check arrived on my last day of chemotherapy in June 2015. I received 2 more checks for the 4 months due and that was it.
In August 2015, we had a small cash cushion, Ashly found herself in the position to launch her private practice, meet state requirements, and prep for state testing. She hired her own supervisor and diligently went to work creating the required documents, disclosures, business collateral from cards and brochures to website and web presence, purchased medical malpractice insurance and set up her office. She had to create everything, word perfect and exactly as legally required. Everything was looking good, completed in record time, and all under budget!
In September 2015, my oncologist told me I was “stable and could stay that way for 15 years” and they would begin the now FDA approved immunotherapy only if my cancer spread.
October and November, Ashly’s advertising was underway. She started meeting with potential referral sources, doctors and other professionals while finalizing all of the required documents and was planning a joint open house with the doctor for mid-January.
By the end of November, our cash cushion was just about gone. We could not survive on my disability (that covers the mortgage and not much else) and Ashly’s part-time photography. Previously, I had a conversation with my uncle’s wife about some of our financial concerns, and she asked “what about the money from [my uncle]?”, as if surprised that I may have gone through 50k. I was dumbfounded and speechless. Did she think he actually fulfilled his offer or that I blew through it? I could not get myself to say anything. I just stuttered and changed the subject. Mortified and desperate I had to try to find out why my uncle made such a wildly generous offer, knowing I had a terminal diagnosis, not to follow through, or at least let my aunt know that he never sent the money. Just before Thanksgiving, we pawned all of our gold jewelry including our matching rings we designed in 2000. We received $800 based on the weight of the gold, these items are worth much more than that (monetarily and sentimentally) and we just managed to pay another $160 against the “loan” so we do not lose them. I emailed my uncle via his wife because he does not use computers, explaining our situation and asked if any portion of his offer of 50k was available to get as a LOAN of 10k - 20k? I told him I/we would sign any paperwork he wanted, and even if I died Ashly would make sure he would be repaid, but we could not guarantee how fast or when. “Stable” or not, I was not feeling well and my episodes continued.
On December 1, 2015, I saw my oncologist and was told “it” had progressed. I was now ready for immunotherapy, BUT the radiologist said “it” looked infectious. Now, I needed to have lung biopsies to indentify exactly what “it” was. We met their thoracic surgeon the next week, and my surgery was scheduled for December 22 and I would be discharged the next day with an expected recovery time of 2 weeks, another Merry Christmas – NOT. I received a Christmas card from my uncle with his family update attached about how he, his wife, his children, and grandchildren were all happy, healthy and thriving, and how he was still investing. Topping this off, the rug was pulled out from under Ashly as months of hard work to launch her practice came to a screeching halt. New requirements for counselors went into effect without provisions to grandfather in counselors currently in practice. Fortunately, and after careful review, Ashly has the coursework required for licensing. Application and review by the Board requires fees and it could take a month or more to hear back from the Board. First, a letter of inquiry must be written and submitted to the Board explaining the detrimental impact the new requirements have had and asking how the Board would have her proceed. Without much choice in the matter, Ashly has started interviewing for full time counselor positions. Yes, we need the money, but I NEED HER! If she accepts a full time position she will not be available to help me, take me to my appointments, decipher diagnosis, and I doubt she will be working close enough to where (if I am able to drive) I could just drop her off and have the car to go solo to my appointments.
My lung surgery scheduled for December 22 at 6 AM was delayed to 11:30 AM, but once there it was delayed to 3:00 PM. Another full day lost for Ashly; she brings what she can to work on while she waits. I was discharged mid-day on the 23rd, another full day for Ashly. The car is acting up and we pray it doesn’t break down, especially in the city. Every medical appointment generates more expense, fuel and even parking adds up. The day before surgery, I received a letter from my uncle. A letter and no phone call did not make me feel confident. I could not get myself to read it, and still can’t so I insisted Ashly read it. It said he wanted me to send a detailed accounting, in an Excel spreadsheet, detailing all of my income and expenses including all of Ashly’s income and expenses, and he would review it after he was home from his holiday travels! I secretly hoped I would receive a panicked, what are you talking about phone call, saying I mailed it to you! It would be a relief knowing it was lost in the mail or even stolen and cashed, or hearing an explanation telling me he was so distraught when he heard my diagnosis he made an emotional offer that was beyond what he could offer, but no! He chose to turn it into a cruel and sadistic game where I have to APPLY for a portion of his offer. This does not require an Ivy League degree or a detailed spreadsheet, my disability plus what Ashly can manage from freelance photography (takes lots of time and energy), no cash reserves and many expenses. I can’t bear to do that, and it is why I am creating this CrowdRise site. It is easier, and less painful for me to reach out to friends, strangers and paternal relatives who are just hearing about this. No matter what the outcome is, I will be able to understand and accept it.
Ashly is interviewing for full time work and I pray she only gets a part-time position. We know something will work out with the Board and her practice will take off, but like everything else right now we just don’t know when. If she obtains full time employment, I’m without my built-in support system, no car (I sold mine after I stopped working, it did not make sense to pay for insurance and maintenance when I didn’t use it that much). Yes, friends offer to help with appointments, but actually doing it is hard and we know it, and I can’t offer any compensation. It is important to have someone with me, digesting and remembering what the doctors say is always a task. Ashly has already taken me to approximately 30 appointments since August; doctors, labs, scans, MRI’s, surgery, chasing down my prescriptions. This easily equals a month of time she has forfeited for me plus the emotional wear, tear and never-ending pile of stress.
On January 15, 2016, we met the thoracic surgeon. In addition to cancer, the biopsies found respiratory bronchioltis, interstitial fibrosis, atypical adenomatous hyperplasia, adenocarcinoma (poorly differentiated), organizing pneumonia (it is not bacterial), meningothelial-like nodule, areas of Langerhans cell Histicocytosis, pleural and septal fibrosis and respiratory bronchioltis (no, I haven't googled all this yet). He said these findings should be treated with steroids, but steroids would aggravate cancer increasing its activity, so I’m officially "between a Rock and a Hard Place”. He also said, Stage 3 and Stage 4 is just semantics because I have cancer in my lymph nodes. It could be the end of February to complete the the tests to rule out some kind of infection. Lungs are not supposed to "grow" things, so they're not expecting to find any infection that can be treated with antibiotics, but it would be wonderful if they did. No one believes I'm sick when they see me! Even new doctors have to ask who the patient is if someone is with me. "Looking good" hasn't helped me one bit and probably caused most of the delays. Never judge a book by its cover has never been truer. Yes, I have plenty of ugly photos even a couple of video clips of me. I just can’t get myself to share them. I will if I have to along with medical reports, but right now, they’re my last bit of privacy.
On February 2, 2016, I will see my oncologist. I’m supposed to find out if any type of infection was discovered, if I now have the PD1 cell, what mutations (the genetic basis for cancer) and what my treatment will be - immunotherapy, steroids? The new batch of findings falls under autoimmune so I do not have a clue if immunotherapy (meant to put the immune system into overdrive) will be feasible, and we already know the preferred steroids would aggravate cancer. Yep, definitely between a Rock and a Hard Place!
I think if this situation were reversed, nothing would stop me from demanding that Ashly’s relatives (any of the few she has) come take her away from me. They could worry about her health, her care, the time spent and any expenses. I’m pretty sure I would be done. DONE with EVERYTHING, especially cruel, broken, empty promises! I have no idea what’s next for me, but I hope I do not cause Ashly any more harm than I already have. Raising money now, will allow me to get to my appointments one way or another; drivers, friends, taxi’s. Ashly wouldn’t be stressed about trying to freelance, work part-time or full time while she waits to hear from the board. She will also be able to pay her now due and past due real estate fees to keep that source of income open, and stay connected with so many people that are a huge support system for her. I/we would be able to pay some urgent, now past due bills, reclaim our pawned items, pets could go to the vet, out of pocket medical expenses, grocery shop without the penny pinching panic, and maybe, just maybe I could take advantage of other available treatment options. I understand nutrition is key but even if I could afford a juicing blender, I know I would not be able to manage the process; however, there are supplements, an essential oil and even one of two clinics I would like to try. Last, but not least, we would get time to spend together, even if it is stressful or just carting me around. Any or all of the above without a major amount of financial stress would be heaven on earth now. I could fill this “story” with pages and pages of information that would just make your head spin. I have no explanation why so many doctors waited over a year to schedule biopsies; I can’t explain much of anything. Again, this is the most condensed and current version of my situation, and if you are willing and able to donate I/we will be beyond grateful. I would like to say I would repay each and every person that does, but I cannot. Just please know you will be imbedded in my heart and soul. Most of all, you will be providing some of the only peace of mind and security that we have had in years.
With all my love, Syd