I continue to live with old friends in the Bay Area after my move from Austin 8 months ago. I have 4 doctors: PCP, Urologist, Oncologist and Pain Specialist. All are within 15 minutes. The Urologist is new as the previous one seemed annoyed the entire time I was there and then wrote incorrect visit notes (I thought he wasn’t listening to me...I was right!). Just remember that physicians work for you. Not the other way around. It is your right to disagree with them, question them and fire them if need be. But I feel I have a good team.
I use medical cannabis. I use it mostly in oral/oil form but also some in vape form but all with high CBD as well as THC. I buy it from the best known dispensary in the country. It’s tested, licensed, taxed, legal and easy. It also may be what’s kept my cancer relatively stable for some time.
My current stats/condition is as follows:
PSA: 4.8. Double what it was when I moved here 8 months ago and about the same as when I was diagnosed with metastatic cancer which had already spread to my lungs. The rapid rise is of note and concern.
DRE: Nodule in mid right quadrant of gland. About 1 cm. Similar to other exams of the last 4 years .
PAIN: Still battling peripheral neuropathy in both arms and legs but primarily lower legs and feet. I currently take 3 meds to keep the pain to a point where I can do something physical daily. Am at a stable place with them, but the meds don’t erase the chronic pain, only keep it to a level I can walk or go to the gym or, once or twice a week, work as a bartender or server for a catering company. They allow me to move and sleep but the pain is 24/7. I'm grateful this works as I'm reminded when I was about 40 an 83 year old woman told me once, "If you don't keep moving, ya die!"
RECENT IMAGING: I’ve just had one of the three tests on my agenda to see where I’m at. It was a bone scan to look for cancer cell metastasis, which is the usual course for aggressive metastatic PC. The results were favorable in terms of metastasis. The results read, “There is no focus of radiotracer activity suspicious for HDP avid osseous metastatic disease.” In shorthand that means there is no evidence of bone metastasis. THAT is great news! It also said, “Activity compatible with degenerative joint disease is also noted about both knees and in the bilateral feet and ankles, left greater than right.” This is great news as it means if I can live long enough, I’ll need knee replacements and have to learn to walk on progressively more painful feet!!!!! It also said, “There are foci of activity present involving the right mandible and left maxilla compatible with sequela of periodontal disease.” That too is awesome because it means if I can live long enough, I’ll need dental implants! Yay for longevity! #oldageaintforsissies #shitwearsout ;)
Kidding aside, the report about the degenerative joint disease in the feet and ankles compounded with
the pain of the neuropathy speaks a lot to the pure pain I struggle with in those. My feet and the peripheral neuropathy are the biggest impediments to my daily life currently. Fatigue to a lesser extent.
UPCOMING TESTING: The next test on my list is a 3T MRI which will do two things: 1) Will allow the 3rd test, a prostate biopsy, which will be a very specific, guided biopsy that just goes for the tumor areas as opposed to the 12, random “cores” of a traditional biopsy. Regardless of the number taken, they still have to go via the rectum and puncture holes in the wall of same organ to get the cores of prostate. It’s not a hazardless procedure. 2) Show if the cancer has thrust itself outside the gland again into the area immediately around the gland.
But it is a necessary one to see if I still face exactly the same type of tumor that I did in 2014. It’s likely but who knows? EVERY physician that has reviewed my records EVER has commented on how “unique” and “rare” my disease course has been. Who’s to say my tumor is still high grade? They all think since I haven't taken hormone deprivation treatment since December 204, I should be quite ill by now and are surprised at my overall good health.
Even if the tumor is the same “granddaddy” of them, or even if it is a newer, lower grade tumor, I may have the option of looking at treatments with minimal side effects such as cryotherapy, which uses a a carefully guided needle to freeze the tumor and ONLY the tumor unlike treatments such as radiation or radical prostatectomy that destroy the whole gland and come with annoying side effects such as urinary and bowel incontinence and impotence.
So I go forward this month to reassess the disease in my body. When I was fully diagnosed four years ago this month, the prognosis was grave. With no treatment I could expect one, maybe two years. With the treatments I took, five years was median life expectancy (note: that was IF I’d continued the hormone deprivation, which I stopped at the end of 2014). But from 2016 through today, I’ve been using some form of cannabis oil. Is this what has kept me “well” in the interim? Who knows?
But I do know that I remain adamant that I will not take poisonous treatments that impede my quality of life just so I can live longer. To quote a great man, “Like anybody, I would like to live - a long life; longevity has its place. But I'm not concerned about that now.”
