|Reflections on BMS-936558, "Hope" by Sarah Elizabeth Pharis|
The Wizard is the most wonderful Wizard of all... and he is pissed.
My family and I met with him yesterday for the first time since I was admitted to the hospital. He had been recovering from the flu and had not been able to see me while I was there last week. When I was discharged, a different oncologist was given the task of informing me that my disease had progressed past all help.
He chose to break the news like this: "Ms. Pharis, unfortunately your disease has progressed to the point that there really isn't much more we can do. It would seem that you have new disease on the brain and in the liver, and the disease in the pancreas has progressed to the point that I strongly suspect you will be back in hospital in about a week with more complications. This means you are off the trial. We are going to discharge you because your lipase levels have come down and you aren't in any pain, but I want you to return to the hospital immediately should the pain return. I also want you to be on the lookout for jaundice and any swelling. At this point, things will progress fairly rapidly. We could try chemo or radiation if that would make you feel better, but they aren't really going to do much. I am so sorry."
He was tearful and solemn, and he scared the shit out of me. When I asked him if it was a good idea for me to go to Puerto Rico in early February he responded with, "I don't want to be a killjoy, and I think you should take every opportunity to have fun while you can, but I strongly suspect that come February you won't be well enough to travel anywhere."
The thing is, he wasn't wrong. The progression of this disease is devastating. Until now, my tumors haven't interfered with my quality of life to any great extent, but now they are causing pain and major lifestyle changes. It is true that things do tend to progress very rapidly at this point, but he was very, very wrong to address the disease and not the Princess.
The median survival rate after metastasis is only a few months. I'm only a few weeks away from the 3 year mark.
The Wizard was deeply upset that another doctor had broken the news to me in this way. The Wizard has always insisted that I "live in the light," and he believes that hope is very important to someone in my situation. He was very sorry I wasn't given any when I was discharged.
And then he gave me some.
The Wizard has worked out a way for me to stay on the study. He believes that while the Nivolumab obviously is not preventing progression of disease, we don't know that it isn't keeping things from progressing too quickly. The Wizard wants me to stay on the trial for as long as I can tolerate the drug. In the meantime, he is investigating three other potential trials. These other drugs haven't proven to be very helpful with metastatic OM, and I might not fit the criteria for the studies, but when one doesn't have any other options, one takes what one can get.
The Wizard can't change the fact that I will die from this. He can't change the fact that things have taken a dramatic and horrible turn for the worse, but he isn't giving up and doesn't want me to either. He says that hospice is an option that is available to me, but until I am literally bedridden, he doesn't want to sign that order. I don't think I want him to either.
So, the fat lady hasn't sung quite yet, but she is doing her warmup routine. This past week has been truly grueling. I have gone from thinking I had only weeks to live, to thinking maybe I just might have a bit longer. I am tired and sad and numb and having a pretty hard time with hope... that other doctor went a long way towards taking hope out of the picture.
But with a pissed-off Wizard at my side, who knows what this Princess can do.
Thank you again for all the love and support. They have meant everything to me. They have made this easier and a little less scary, and I love you all for that.