It took me a couple of weeks to feel like writing, but here’s where things stand. After my last visit to my PCP, exam and discussion of PSA results, here’s what he has to say:
“ I am the Primary Care Physician for Scott L. Miller. I am on staff at Austin Regional Clinic where Mr. Miller has been a patient for the last decade.
Mr. Miller was diagnosed with a very advanced, aggressive, Stage IV prostate cancer with metastasis to his lungs in late 2013. The tumor was outside the gland (also known as extracapsular) and involved with his seminal vesicles. His PSA ( a marker used in evaluating potential prostate cancer or the disease itself) was tested with a result of 4.91 ng/ml. Although he didn't realize it, he was a very sick man. He then underwent both hormone deprivation therapy as well as chemotherapy with the very toxic agent, docetaxel in 2014. The therapies were effective at reducing the metastases, the size of the tumor and his PSA level, reducing the level to less than 1 ng/ml in April 2015.
Since that date, Mr. Miller’s PSA has risen consistently to a 1.23 ng/ml in April 2016 and now to a 2.24 reading as of last month. Digital exam indicates a mass/tumor on the upper right quadrant of the gland.
Given his history of metastatic disease, the rapid trajectory of his PSA rise likely indicates a return of the aggressive tumor and the progression of the disease.
Mr. Miller continues to suffer from extreme neuropathic pain in his feet, hands, arms and legs likely induced by the chemotherapy treatment and consults with Dr. XXXXX for pain management.”
My physician is clear on what I’ve know since all this started. I’m fighting a losing battle. At the rate of progression of the PSA level (about 1 ng/ml/year), I'll be back at the level when diagnosed at the end of 2013 in roughly a little over 2 years. WIll the tumor once again be outside the gland? WIll it have metastasized to lungs or other organs? Who knows? But based on previous experience and physician statements, I think I know the answer.
Painful neuropathy has returned after my CBD experiment. While I try to do a food demo every weekend, even that proves challenging. So that leaves me to survive on by meager SSDI allwoment. Have you ever tried to pay rent, insurance, buy food, pay exorbitant prices for meds and keep a 26 year old car running on less than $1500/mo? It’s not easy and I fall short monthly. (if you can help, please see the fundraiser here. )
The only treatment option is to go back on hormone deprivation therapy, which I refuse to do. The side effects were simply too extreme or do nothing and remain on palliative care.
I spend many lonely days at the absolute edge of Cedar Park in my run down, basic, garage apartment. The internet, old movies and sleeping for as many hours as I can have become my friends.
Chemo brain continues to plague my memory and recall. As much as the neuropathic pain, that is extremely frustrating. To write a clear sentence and certainly something like this blog, is a huge effort and requires multiple rereads.
So what advice can I give a person dealing with a disease that will kill them? Value your healthy, fun days like they were platinum; they are more precious than you may realize and are not endless. Enjoy children when you are sick as they will make you laugh and help see the continuity of life. Get out when energy and pain level allow; this will make you feel connected. No matter how you feel, be kind to those around you, especially caregivers; They're trying to help. Share your life wisdom; you know more than many. Have a nice, soft, terry cloth robe as it will provide much comfort. Forgive those who have wronged you and focus on their good points.
Above all, accept reality and try very hard to make peace with it.