Leukemia as a young male adult in his early 20s

I was diagnosed in my second year of school at Georgia Tech in late 2014 while studying mechanical engineering. I was about to embark on to the internship of my dreams shortly after diagnosis: so there's a preface for what I've learned and experienced since diagnosis. I'll try to mention things in this list that I have not seen elsewhere.
  1. 1.
    When diagnosed, human nature makes you want to be strong, initially not for yourself, but for your family. Even when I was 95% sure I had leukemia from an initial blood test, I waited 2 days before telling my parents to save them from 2 days of dread until doctors gave me the 100% results.
  2. 2.
    Insurance in USA is a privilege. I had great insurance which forced me to pay only a max of $2500 each year. In 1.5 years I would have racked up almost $2 million without insurance! Regardless of ur political view, would it have been right for me to be denied care if I didn't have insurance? I was healthy, exercised, straight As, but got cancer.
  3. 3.
    People may hesitate talking to you as much because they think they are bothering you. Big misconception, just call. If I can't talk, I'll call you back another time. Being hospitalized and isolated from your friends can get quite lonely.
  4. 4.
    As a young adult this is an awkward age to get cancer. Most cancer patients are either kids or older people, not young healthy peeps in their prime who may be about to pursue their dreams.
  5. 5.
    This will list will gravitate towards my personal experience... After 6 months of grueling chemo, I was in remission for 3 months until August 2015. I relapsed right after summer. At that point, it's scary. For my chemo regimen, only 50% of people survive 5 years post-therapy WITHOUT relapse. I was the losing 50%.
  6. 6.
    It gets even scarier when a top cancer Institute like Emory doesn't know what to do with you, so they send you to get on clinical trials at MD Anderson in Houston.
  7. 7.
    So I get on a clinical trial in Houston because current FDA-approved standard therapies have a pretty depressing outcome. The best hope to keep me alive is the trial and error of various poisons that are still in trial phases.
  8. 8.
    One trial keeps me in 'remission' long enough for me to be able to get a bone marrow transplant. I say 'remission' because that word is defined by what the current technology can detect. Let's just say remission does not mean much - I've been in remission 3-4 times.
  9. 9.
    In Dec 2015 I get a bone marrow transplant from my cousin who signed up with BetheMatch (you should sign up BeeTeeDubs, it's so easy). It was the easiest process for him, they basically just took his blood. Bone marrow has a bad stigma/misconception - it's not an organ!
  10. 10.
    But on my end? After they infused the marrow cells into me, I experienced HANDS DOWN the worst month of life. And let's just say, I've experienced some shitty times for someone who has been battling for a year and a half. The chemo associated with transplant was excruciating - constant pain and general feeling of poopiness.
  11. 11.
    Bone marrow transplants have a 70% chance of curing leukemia. My donor was a great match. My body accepted the new marrow. But guess who was part of the unlucky 30%: my leukemia decided to be a cutie and play hide and seek.
  12. 12.
    Not one month after transplant, I relapse in Jan 2016. Alright, devastation again. Is there anything else to try? Yes, there's a revolutionary immunotherapy called Car T -Cell. Heard of it? Vice News piece on cancer anyone?
  13. 13.
    Hospital business department decides to give me trouble about my insurance not covering the trial (they were wrong on so many levels). I fight them for a week, get proof from my insurance and basically do their job for them, all while being traumatized by my 3rd cancer diagnosis.
  14. 14.
    Second problem. I am still on immunosuppressants such as steroids from the transplant in order to prevent organ rejection. It's too soon after transplant to be taken off the roids, so I am ineligible for the CAR T Cell.
  15. 15.
    I get in a newly FDA-approved treatment. Success! 'Remission!' Wait....did you say 'remission?' I relapsed after 2 months by end of April.
  16. 16.
    Ok what now? More trials? No one knows what to do. You know it's bad when you have to research your own trials and your own eligibility. You feel like your own doctor - all your doctor does now is write the orders once you present research findings to him.
  17. 17.
    Okay we're gonna try Car T Cells again. Wait, still on low dose steroids..need a couple months to wean off. Okay let's get some chemo going to suppress the disease because now it's coming back like an undying rabid dog: resistant and rapidly progressing.
  18. 18.
    So now I'm on standard chemo poisons again. I am bewildered. How has my body not failed yet from all this physical punishment? I need to get off the roids in the next couple months. If car t cell doesn't work at MD Anderson, there is another version at NIH in Maryland - If I can last that long & my disease doesn't become resistant to chemo.
  19. 19.
    Alright, game set plan. LETS GO TEAM!
  20. 20.
    To be continued...