It’s been sometime sine I wrote a new post. The reasons are numerous. A lot has to do with health issues and the continuing struggle I am fighting with chronic disease.
Many of you may have read older posts describing my battle with Stage IV melanoma and perhaps even worse, the paraneoplastic syndrome that it triggered. Symptoms have been very much the same as fibromyalgia and severe chronic fatigue syndrome.
On top of that, I’ve had to deal with recovery from two heart attacks and a troubling loss of vision caused by retinal artery occlusions. I could go on and on, but I think you likely get the picture.
About six months ago, I began seeing blood in my urine. At first, it wasn’t very often and since I have polycystic kidney disease, blood in the urine has been something that comes and goes. But the blood became more frequent and eventually made by urine look dark red every time I went to the bathroom.
After consultation with my doctors, I stopped the Cytoxan therapy that had been keeping the paraneoplastic syndrome stable. Everyone at that point thought that the blood in the urine was most likely the result of that powerful chemotherapy drug (derived from mustard gas) Cytoxan – either interstitial cystitis or bladder cancer.
I went to the urologist and he did some blood and urine tests and scheduled a cystoscopy (an endoscopic look into the bladder) for January. My PSA level was about 7, which was about double the previous year, but not outlandishly high. The urine showed red blood cells (no fooling!) and the cytology showed atypical cells. The cystoscopy was done but the doctor did not see any problems within the bladder. At first he was planning to repeat the cyctoscopy in three months but upon my urging, he scheduled a prostate biopsy – in his words “to rule out cancer”. His every word seemed to suggest that he was doing the biopsy for my “mental health” and that he did not expect to find cancer.
Well, the results of the biopsy proved the doctor to not only be wrong but to be very, very wrong. I had prostate cancer. Gleason score median of 9. Very aggressive cancer.
A bone scan and abdominal CT scan were ordered. The CT scan did not show anything definitive but the bone scan lit up like a Christmas tree. It suggested bone metastases in the vertebrae, ribs, hips and femurs. Very advanced disease.
When I returned to the urologist for a conference on treatment planning, he was white as a sheet and really couldn’t even look me in the eye. I think he thought that he would be the bearer of all this bad news, but I had access to the reports through the hospital’s patient portal. I came prepared. And, in a way, he did too. We started treatment that very day.
Initial treatment is intensive hormone therapy with nutritional supplements and other drugs to promote bone health. The treatment is to try and slow down the cancer, not cure it. There is no cure for advanced metastatic prostate cancer that has spread to the bones -especially so many bones.
At my urging, a PET/CT was ordered to check for any involvement of visceral organs (lungs, liver, kidneys, etc.). The scan confirmed the findings of the bone scan and suggesting even more involvement of the spine and ribs. But, no other organs are involved at this point.
I scheduled an appointment with my oncologist (who was continuing to follow me after my battle with metastatic melanoma). He had reviewed the tests previously performed and the PET/CT scan. He agreed with the treatment plan but with my history of melanoma wanted to follow things very closely. He ordered a follow-up PET/CT for 3 months and, if the findings were the same or worse, will order a bone biopsy to make sure we know which cancer we are fighting. He suggested that I could be battling both advanced prostate cancer and a return of metastatic melanoma in my bones.
I asked both doctors about prognosis and survival time. Both really tried to dodge the question, but as I insisted on an answer, admitted that things were not good. Even with treatment, it could be measured in months or perhaps a year or two. Maybe more if things go really well.
One thing that I have in my Living Will is an insistence on quality of life. In a perfect world, I would still be functioning and doing the things I like to do until the time comes to move on from this world to the next. An interesting aspect is that many people die of other things while fighting this type of cancer – the consequences of broken bones or a heart attack triggered by the cancer treatment itself.
So, what’s the impact? Much, much more pain. More fatigue. More brain fog. But, you know what, I still get up every single day, do my grooming and put on my clothes – usually very comfortable clothing, but clothes nonetheless. I work on things as I can. I continue my hobbies. I thank God for another day with my family and friends.
I will not ever give up. That’s just not in my nature. It’s a difficult time for sure but if I only focus on what is bad in my life, it will likely be over that much sooner. So, let’s make it last as long as possible and enjoy every moment.