Treatment Worse than the Disease

One of the hardest and most frustrated things about this whole ordeal is the lack of transparency, dishonesty, and the feeling that I am a lab rat.

When I was first undergoing treatment for leukemia, I was given statistics that widely varied. Some doctors said that I had a 90 percent chance of being cured while others said that I had a 90 percent chance of relapsing. Again, after relapsing I was told that I had a very "favorable" prognosis by some oncologists and a "very poor" prognosis by others. When I arrived at the hospital initially for treatment, I was told that I would be inpatient for 2-3 weeks; instead, I did not leave until just shy of 40 days. This time, I was told that I would be here for 4-5 days, and it's been nearly three weeks with no end in sight.

After I am released from here, I will be home for a week. During that week I have to get ready for a move to Seattle where I will be hospitalized for six months. I could very well die in a year, and of that year, I will have spent well over half my time in the hospital and the remaining time getting ready for hospitalization.

I never know how long I will be home and I never know how long I will be in the hospital. This treatment is so exhausting and opaque that I can easily see why many cancer patients opt for hospice as an alternative--especially when the overall survival rate is low.

Hospitals really do their best to wear you out. The staff puts in a 12-hour shift, goes home, comes back refreshed, and acts like I have been given the same luxury. I have some nurses that barge in after 9 or 10 am without knocking, they cheerfully open my blinds, and laugh about how I am still asleep. One nurse even scolded me for wasting the day: "Sh-t, how can you continue to sleep at this hour; don't you think it's time to wake the h-ll up!" That was verbatim, and I am not exaggerating.

For them it is a job, for me it is life. I have vitals throughout the night, I share a ward with dementia patients who are often screaming or having PTSD flashbacks well after midnight, I have had patients defecate themselves outside my door (smelling feces is not exactly conducive to sleep), one of them kept knocking on my door and screaming some woman's name at 2 am, and never mind the side effects from chemo that keep me up well after bed time.

I don't want to oversell this, and there are a host of fantastic physicians who are involved in my care. Nevertheless, leukemia is an awful disease, and the treatment is exhausting. Without God, I really do not know how I would make it through. I can go through the motions for treatment, but only my faith can keep me strong and provide the perseverance to endure.