At the doctor's office
today, a student was shadowing my oncologist. Before coming in to see me, they
discussed my case and I just happened to be in the room right next to them. It
was pretty weird hearing him summarize the entire case from the beginning until
now. Here's what he said to the student:
"Our next patient is
a young woman with Acute Lymphocytic Leukemia who I diagnosed about 2 and a
half years ago. She received what we call the hyper-CVAD chemotherapy regimen
and she handled it very poorly requiring us to stop the treatment halfway. She
experienced extreme toxicity and remained in the ICU for quite a bit of time
and developed an uncommon complication that patients sometimes experience with
chemotherapy called, Reversible Posterior Leukoencephalopathy Syndrome (PRES), meaning
swelling of the brain causing temporary seizures and brain damage. Over the
next few months after that, she recovered, but couldn't handle maintenance
chemotherapy either. She did go into full remission following the first cycle
of chemo and did well between the critical illness following the initial
treatment and the relapse. The relapse required a bone marrow transplant, but her
insurance company required her to choose from either Johns Hopkins or VCU for
the procedure. The problems with the seizures due to the Reversible Posterior
Leukoencephalopathy were seen recently with another trip to the ICU post the
transplant process which included full body radiation as well as high dose
chemotherapy generating similar toxicity as the first round of treatment. She
was at Hopkins for the last few months, but now is back in the area and we are
following her closely. After the initial transplant protocol, there were
problems such as GVH, CMV, liver damage, etc. She requires blood transfusions
due to the medications she is on for these conditions as they reduce the
ability for the marrow to produce new blood cells as well as neupogen shots for
the neutropenia. The comprehensive metabolic panel (CMP) pretty much looks normal
now, with the liver healing over time. Let's see how she is feeling
today."
Hearing such a concise
summary of all that has happened since the beginning gave me an outsider's
perspective that I never get. It's always me reflecting on my own condition. I
wondered what the student thought before he came into the room to see me with
the doctor and what he expected my present condition to be. He probably thought
I would be in a wheelchair or extremely weak where I required a lot of help walking
and definitely not expecting me to say that I'm doing well when the doctor
asked, "how are you doing?" I could sense some degree of relief in
his mannerisms after our interaction, but he entered with a surprised look on
his face. Anyone who hears the details written above or in my medical records
would not expect me to be where I am today.
I can imagine what they
think in their head once they put together a picture of all that's written
above. That picture is not what I look like. It's not at all what I feel. I got
lucky to have survived the worst, but after that, I did everything I could to undo
the damage, because I wanted my old life back and no one was going to just hand
it to me. Not even the passing of time. These students read about me, and then
they come see me, and when I walk away, they must think, "wow, what a
G!"
An article explaining PRES:
No comments:
Post a Comment