In September, it was decided that the plan was to stay in New Jersey, rest, get a new set of doctors and figure out a comprehensive plan. I was put on a low dose chemo and the ultimate goal was to get off the prednisone.
Two weeks ago, we lowered my prednisone dose to 5 mg, down from 30 in September. With prednisone, I don't get mouth sores.
Without the sores, life seems manageable; although I am always in pain, I am able to be present.
When my mouth is full of ulcers, I cannot talk, breathe or eat without that buzz–that deafening roar–eclipsing my moments, shielding me from living in the present.
Pain takes away what I work the hardest on: being truly present to experience each moment of my life, good, sad and painful. I believe that paying attention is crucial to cultivating good relationships, to enjoying life, to checking bad behavior. It is hard to do without pain.
It is impossible to do in this type of pain.
The sores are back. They have been back since Monday. When Joe wakes up, he will see many text messages from me, all complaints, all pleas, all apologies for complaining. He will tell me he's here for me, he will ask what he can do.
He can't do anything. And I feel like I am robbing him of having a fun girlfriend when I am down like this.
The treatment is not working. I know this, because the sores are back. I know this because the sores are just a symptom of the disease gone awry.
I am afraid that we are back to square one after nearly 4 months and I am terrified. I have given up an entire life in California for this.
I want to be better. I just want to be better.
I just want to feel okay.