shooting bullets...a vent session

  • My mother died in January
  • I go back to school and around the first of March, start to have this nasty "green" feeling in my stomach
  • I let it go for about 2 weeks and go to the campus health clinic the day before spring break starts. They tell me I have C-Diff Colittis
  • I go to Chicago and all that week, I am on my back, with stomach pain, vomiting simple things like Orange juice and sports drinks
    [LIST]
[/LIST]
  • I finally leave...on Greyhound...for a 10 hour ride back to Kansas City...all the time in pain. I get to the bus station and they rush me to the hospital at my request. It's 11:30 PM and I feel terrible.
They take me to get a CAT Scan at around 5 AM
2 hours later, they tell me they found tumors and of course, they want to admit me to have them tested. They also say that my liver is enlarged significantly.

The next 3 weeks of my life were hell. I lay in the hospital in the most intense pain of my life, being drugged up with morphine, oxycodone...you name it.

The next week, they tell me that I have stage 4 Neuro Endocrine Cancer that started on my pancreas and spread to my liver.

The internal medicine team...I had some serious issues with them. I felt like they were going to let me die. They wanted me to go on Oral Chemo Pills. Thank God, a few days later, the Oncology team took over and said they wanted to start Chemo right away.

I have no health insurance.

I have no family here and the only job I had was campus employment.

I moved into an assisted living facility that takes medicaid and I am one of two people under 35 that live here

My family understands but they don't

I connected with someone who has Neuro Endocrine Cancer, and apparently it's very rare and slow growing. I was also told that I'm rare because I got NET and am an African American

Chemo drains me for at least 14 days

I miss working and want to go back as soon as possible

I couldn't believe that having cancer is not considered a disability.

It all happened within 2 months and I have been in the hospital about 4 times.

]ok...done

Comments

  • 8 Comments sorted by Votes Date Added
  • It's hard...very hard. Regarding the disability, it depends on how you mean. I receive SS disability benefits as a result of my diagnosis. There's a waiting period before you qualify. I think it might be something like a minimum of 6mo. Some types of cancer qualify for fast-track approval. It'd be worth looking it up to see if you qualify. You get the benefits for a specific amount of time or until you start working. I don't remember the details, but 5 years sticks out in my mind for something.

    If you mean disability in the ADA sense, that's different. I probably could have qualified for that on a temporary basis because my mobility was severely limited due to some complications that took a long time to recover from, but I would absolutely not qualify for that sort of consideration nowadays. I do believe you need to start the process by having a doctor describe your disability. I inquired about getting a temporary placard on my car to use on campus and they kinda looked at me funny and said I had to talk to a doctor first and then go through the DMV.
  • It was interesting looking at the Social Security Administration's site on Disability. Apparently, Carcinoma conditions are on the Compassionate Allowances conditions to fast track. NeuroEndocrine CAncer is a Carcinoma/Carcinoid type. So, there's hope!

    Yes...it's hard. But, everyone says I look good! Bald...but good. I have good days and bad days. And within a day, I will have a good period, and bad period.

    mtbikernate;6895 said:
    It's hard...very hard. Regarding the disability, it depends on how you mean. I receive SS disability benefits as a result of my diagnosis. There's a waiting period before you qualify. I think it might be something like a minimum of 6mo. Some types of cancer qualify for fast-track approval. It'd be worth looking it up to see if you qualify. You get the benefits for a specific amount of time or until you start working. I don't remember the details, but 5 years sticks out in my mind for something.

    If you mean disability in the ADA sense, that's different. I probably could have qualified for that on a temporary basis because my mobility was severely limited due to some complications that took a long time to recover from, but I would absolutely not qualify for that sort of consideration nowadays. I do believe you need to start the process by having a doctor describe your disability. I inquired about getting a temporary placard on my car to use on campus and they kinda looked at me funny and said I had to talk to a doctor first and then go through the DMV.
  • yeah, it's definitely worthwhile to look into the SSA site regarding disability payments. Those monthly checks have made a huge difference in my ability to pay my medical bills. And now, with my wife changing jobs, we're needing to use that money to pay for my insurance, which her new employer does not cover (for me) as well as the last one. And because of my history, my insurance bill went up a couple years ago.

    My chemo treatment was a slow drain on me. I'd get it for 3-5 days in a row, and I'd feel okay immediately afterward, but over the next 2 weeks, I'd feel the strength and energy slowly drain from my body as my blood counts dropped. Then I'd feel it slowly come back over the next 3 weeks or so. The scary part was how well my body adapted to low counts. Early on, I'd notice when my red cell counts and platelets were only a little low. But by the time my last treatment came, I could not reliably predict my counts based on how I felt. I'd feel okay, but I'd get blood test results back showing I was in severe danger of both collapsing dead from a lack of oxygen AND spontaneously bleeding out. And of course, my wbc counts would be reading 0.0 for a day or two so I was also at risk from getting an infection from breathing.
  • I get mine 3 days in a row and tomorrow, is my third treatment. I'm dreading the two-week drain it will have on me. Seems like it affects us similarly. I have about a 2-3 week drain of energy that makes me glued to the bed, and lowers my appetite. They tell me that the side affects will make me want to call 911 and get admitted. BUT, they want to try to keep me out of the hospital so I won't be around the risk of infections that may make things worse.
  • I never felt that bad...I just felt a bit tired and lethargic. I was fine getting out of bed, but did not have the energy to do more than just sit around. and then if we saw red dots on my legs (from my capillaries spontaneously leaking), I had no choice but to go to the hospital. if we were lucky, my doctor would catch low platelets on a test and he'd schedule me to go into the hospital so I could avoid the ER. but I did have to go through the ER on a couple of occasions. holiday weekends were one common reason since the main lobby of the hospital (and my doctor's office) were closed. only option was the ER.

    still, I think I was lucky that I only got an infection once. it was bad enough as it was. 104F temp, hospitalized for 10 days because it was sepsis, 3 weeks of IV antibiotics. blech. nurse's fault, too.
  • you should see my medical records from March until today. The admitting doctor said that he thought I was very articulate, but denying depression and not getting up out of the bed enough early in my stay in the hospital. LOL I was in fuckin' stage 10 pain and drugged up on morphine, not sleeping at night because of 7-8 hours of excruciating pain in my abdomen...basically feeling the process of digestion because my liver and pancreas were not functioning right. He was concerned about my wanting them to keep me in until chemo started. And everytime I went back to the ER,I was admitted, and even nurses said that I did the right thing because I showed symptoms of something serious that needed medical attention and ultimately an admittance. Hopefully now,I can keep things under control without going in.

    today started treatment 3.
  • FYI - if you can show you have under 2000$ in your bank accts (not including IRA's etc) - you can qualify for SSI - this is Supplemental Income - NOT Social Security Disability
  • Thanks so much for that information! OF course being young, I would never have known that's how SSI Works. I will definitely keep that in mind if the initial application does not work.
    jaredsdad;6916 said:
    FYI - if you can show you have under 2000$ in your bank accts (not including IRA's etc) - you can qualify for SSI - this is Supplemental Income - NOT Social Security Disability