MY RECOVERY JOURNEY:
Prostate Road Map founder & Prostate Cancer Advocate
Age at diagnosis: 71
Gleason Score: 8
PSA: 2.4 Post PSA: .02
Treatment type: Robotic Prostatectomy
When I went in for my routine prostate examination with my primary care physician, I was 71. He indicated that the prostate felt asymmetric and that he was going to refer me to see a eurologist, saying it wouldn’t hurt to have it checked out, even though my 2.4 PSA reading was considered low.
This referral turned out to be the right call. Two months later a biopsy was performed and the report came back indicating that half of my prostate had aggressive cancer cells with a Gleason 9 rating. My doctor said I owed it to myself to have another set of eyes take a look, so he sent me to another urologist. After three weeks of additional tests, reviews, and doctor opinions, the decision was made to undergo robotic prostate surgery.
The surgery went off flawlessly, and after a one night hospital stay, I was sent on my way with a catheter and basic instructions in hand. Once home, an ugly reality presented itself. Prior to my surgery, I was so focused on the fact that I had prostate cancer and concentrating on following the pre-surgery protocols, that not once did I give any considerations to the painstaking road to recovery ahead.
As I scrambled to manage each issue that came up, I spent endless hours (during recovery you have a lot of extra time) searching the internet to find practical answers to my questions regarding recovery. I came up empty. It became clear to me that, while millions of individuals are diagnosed with prostate cancer each year, there was not one website dedicated to providing personal, comprehensive, organized, and practical information to help patients and their caregivers deal with the issues related to their healing recovery. I began researching, compiling information and ultimately created the Prostate Cancer Recovery Support website.
Fast forward to five weeks after surgery, it was time for my first follow-up the surgeon. The past few weeks had been rough, so I came prepared with a laundry list of questions:
- Was it normal to be voiding by dribbling into five diapers?
- Was it okay that I couldn't pee standing up?
- How should I be dealing with a yeast infection?
- Why was sitting such a pain? Was this expected?
- Should I be using ice on my traumatized body?
- Is using zinc oxide and baby powder okay as part of my hygiene?
- Why are my nerve endings going crazy?
The issues on my list -- from my Urinary hang-ups to the Athletes Foot cream -- didn’t seem to be of any concern to my doctor. I was more than surprised that the items on my list were considered normal to him. He told me the aggressive cancer had grown onto the side of my prostate, but it had not reached the nodes. He expected the cancer to return, but since my PSA test was now .02, we would monitor the stats at the 3 and 6 month and one year check-ups and go from there. If it starts to rise again, the next step would be radiation. While this was good news, I am still concerned that watching the PSA won’t tell the real story, since my PSA was only 2.4 at the beginning... Anyway, apparently I was making progress.
At the end of the meeting the doctor turned me loose, telling me I could resume all activities, including golf, as long as I didn’t walk 18 holes. I was shocked, I had expected that they wouldn't want me doing anything for at least a few more weeks.
The doctor also gave me a referral for ‘pelvic floor’ therapy with a therapist and told me to keep doing the Kegel. When I contacted three of the physical therapists on the list, none had availability for another 6-8 weeks. Forget that, I thought, so once again I turned to the internet for a Kegel how-to primer. Another note to self: perhaps I should have known to ask the doctor for a PT referral the day I was released from the hospital??
FIVE WEEKS PLUS:
In the months that followed the trials and tribulations continued, yet I'm happy to report that 12 months post-surgery there has been no sign of the cancer returning yet. Dealing with all the "normal" abnormal's associated with the recovery process has resulted in my body doing its miraculous healing thing. So far so good! But the reality of cancer is that the original diagnosis, treatment and recovery may only be temporary. My Primary Care Doctor calls 'cancer' a chronic disease. Thankfully, although the cancer may return, due to the advancements in cancer research, relapse can be countered with a variety of treatments.
My energy and functioning have returned to normal, except for a few squirts now and then. I've replaced health recovery focused reading with articles relating to living longer, eating healthy and staying healthy. The common points for success in these articles are: exercise, lower your stress, eat healthy, meditate and have a loving/positive attitude.
I have embraced these ideas and I will definitely continue the Kegel exercises, daily walks, and may even learn to eat kale. The challenge of dealing with the diagnosis of cancer puts us all in a position of facing our mortality, as uncomfortable as that may be. After wrestling with that idea for a few days, I decided to follow the mantra, ‘It’s not how many days I have left, it’s about what I make of the day...how I live and experience each moment to make every day special’. I also set up a 'LIFE File' in my iPhone Notes section to track each day and help me establish a gratitude practice.
FUTURE: as of 8-16-22 Life is good.