My Personal Account

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I have Cancer, prostate cancer; I have known about it for several years and have been awaiting the day that some definite treatment is required. That day came. Below is a composite of emails and writing I made on the treatment as it occurred. I went through 35 treatments, endured the most intolerable pain one can imagine, could not work outside the house for two tears, fell into depression, and now live with the possibility that the resulting damage by radiation may kill me. Below is my story for you to make your own judgement. Again, I am NOT a medical professional, I am a patient.

In December 2022, I started a radiation program to kill off prostate cancer. Up until that time, the only symptom I had was the occasional up-at-night trip to the bathroom. In January 2023, the treatments started four weeks into a seven-week program. It went all wrong; I was getting a lot of pain, and the doctor prescribed medication to help empty the bladder. Unknown to all, the bladder was blocked. The medicine made the pain worse. By week five, I was “on the edge.” The pain was too much to bear, so I seriously considered an alternate ending. I confronted Doctor Cancer, insisting he get another doctor from the hospital to assist. While waiting, we started with treatment. Doctor Cancer was with the technicians for the first time in five weeks. They did the pre-check to ensure the correct positioning. It was during this test they told me they could not do the treatment because my bladder was too full. I question them by asking, How could that be? You have been treating me with drugs to force my bladder to empty. It was a complete blockage. They put in a catheter, and I dumped 1200cc immediately. They also changed the medication (the nurse checked the chart for the meds and said, "No, no. This is not right. You got the wrong meds." After that, they changed it to a walking catheter, and I left. On the way to my RV, where I was staying, I dropped another 600cc. I spent the next ten days with the catheter and doing treatments. The treatments ended in February 2023, and I was in intense pain for six months. After realizing the choices of food and drink caused additional pain, I eliminated them, and the pain was reduced. The pain is still here 15 months later. I am awakened during the night between 3 and 4 times every night, and I am never able to sleep through the night and get fully rested. Pre-treatment, I would rate my quality of life as 8 out of 10, now it is lucky to be a four.

December 2022

I first went to Dr. Urologist for kidney stones in 2016. After surgery, it was discovered my PSA numbers were high. I stayed with him for years, monitoring the PSA numbers.

After several years of seeing Dr. Urologist for post-kidney stones, he stated it was time to address the Prostrate. At Dr. Urologist’s recommendation, I met with Dr Cancer at Northside Hospital. We discussed the options of radiation versus removal. Cancer made it sound like removal had many more possible negative outcomes. One of which is becoming impotent. We discussed the radiation, and he told me there would be 35 sessions. I asked how he would know if it was working or if, along the way, I was done. He replied. "It's a receipt, like baking a cake. Cook it for a certain time, and you are done." I remarked. "Well, even when baking a cake, you stick a toothpick into it to check." He responded, "Do you want me to stick a toothpick in you." I was not overly impressed with this, but I have no real knowledge of the choices and selected the recommended radiation solution.

Well, there was a company that used to say, Better Living Through Chemistry, and I am a believer. Some company made a pill that tells the bladder it's empty, so cool it, and yesterday, for the first time in three weeks of  ‘interesting days and nights, ' I am without significant pain. Yeah, drugs. 

So, where am I? As of today, thirteen treatments are done, with twenty-two to go. Up in the AM, drink the prep at 840 AM, hold it for forty-five minutes, do twenty in the machine, spend an hour afterward emptying the bladder, then go to the gym for an hour to build up stamina to counter the effects of the radiation, then a protein lunch, then return to the room, or my case the RV. It's now 2:30 or 3 p.m., and I am done for the day, for the most part.  

Fatigue is the only side effect now. Some days, it's nothing; today was a good day.

What's next? I don't know for sure; they say the fatigue gets worse. But I am committed to the gym, walking, and kicking fatigue's ass. And I thank the lord for Colleen, my daughters, and the strength they give me.

More to follow.

Can you believe it, COVID!  In the middle of all this, I get COVID again.  No worries, I had before, and it was no issue, and I suspect it will not be one now. If I had not been told I had been exposed, I would not know I had it.  All that being said, I am being carefully watched by my daughters, who will ensure I stay healthy enough to be treated for my other illness. I am blessed.

As for treatments, eighteen down and 17 to go, I am on the downward slope, the light at the proverbial tunnel, as they say. Each morning, I sat in the waiting room with the next two men in the queue. We chat a bit, and it's nice to know that misery loves company. Mike is very old, 75, and the age of my other companion in crime is unknown. The second guy is Vietnamese, and I converse with him via my Apple language translator.   So, you can imagine it is a limited conversation. Today was a good and bad day. Mike was not there, he completed his last treatment yesterday, which is good. My Vietnamese friend was gone as well. I first thought he had died; he was very feeble and in bad shape. However, my nurse told me he had finished his treatments as well.  They are both done and gone - damn them.  ; )

· In week four, the pain becomes intense.

· In week five, pain becomes severe, like "passing a stone" each time, 20 times a day, up every 60-90 minutes at night.

· On 13 February, the pain was beyond severe at the treatment center. Nurses reacted. The doctor was not present.

· It is 14 February at the treatment center, and I told the doctor about the pain. He suggested I go to my Urologist for a urine test. I refuse. Demand attention. I also demand to continue with the day's treatment The doctor is in the tech room for the first time. Techs do a test, then come out and say they cannot do the treatment because my bladder is too full. I am given a catheter, drop 1200 cc. Then, the nurse replaced the big bag with a walking bag, 600cc more, before returning to the RV.

· Feb 14 catheter in place.

First of all, the COVID-19 thing in my last update (below) turned out to be a false positive, so that was good.  Unfortunately, that ended the good news.

In my previous message, I wrote that the new meds were working; however, that proved to be a “false positive” as well.  Over the next week, things went south, and trips to the bathroom became more frequent.  On Monday the 13th, after radiation, I went to my Urologist, whose PA did a scan and reported my bladder was empty. I am told there is a condition that makes it think it is full when it is empty, so as soon as something goes in there, it attempts to push it all out and causes frequency and pain. That made sense to me at the time—new medicine. However, sleep became limited to 60 to 90 minutes at a time, as it was repeatedly off to the bathroom.

Over the week, the visits were more frequent, and the pain started increasing to the point that it was like pushing a kidney stone every time.  By Friday the 13th, I was insane with pain; trying to urinate was like peeing glass (I have never really peed glass, but I do think it would be quite painful).  By the weekend, I was just about out of my mind; I had not slept, and making four trips to the head every 20 minutes, each with its own accompaniment of pain, was the rule. On Sunday night, the pain was so intense, and I had no sleep for days. I went to my treatment on Monday, during which I had to use the head, which was directly behind the nurses' station. It was really bad. I came out and went to the nurse and said I was really in pain and needed to see the doctor. Her response was, "Yes, indeed. We all heard." Well. I got the message out. My Oncologist was not present, but they insisted this new over-the-counter pill would take away the pain, and I could see the doctor in the morning. They were wrong. Monday night was as bad as it gets; intense is hardly the word for it. I said words I had forgotten I knew. I had no sleep at all that night. The pain was such that I considered going to the Emergency Room but thought going there at 2 a.m. would be an exercise in futility as they would have no knowledge of my condition and treatment. I foresaw sitting in waiting rooms for hours, wanting to die, as the real possibility. I considered just taking all the pills and ending the pain—it was that bad.

April 11, 2023

Appointment: Dr. Cancer. "It will take two weeks after the last treatment for the radiation to peak and two to four to six months before it goes to half-life."

[SPECIAL NOTE: The above is the only I saw Dr Cancer after the procedure and to this day.

April 11, 2023

Appointment with Dr. Urologist, He tells me the problems I am having are strictly from the radiation. It will be from six months to a year before I am completely healed, and the new medicine is stopping the bladder from sending false messages.

Report from CT Scan Doctor

August 3, 4:38 p.m.

“Dr. Urologist and I have reviewed CT results. There is no evidence of any stones or obstruction and no suspicious masses. 

- Given your persistent symptoms refractory to medications, with negative urine cultures and CT, Dr. Urologist would recommend you get set up for cystoscopy in the clinic - to check for any scar tissue, strictures, persistent inflammation, etc. Unfortunately, common for men to get radiation-related urethritis or cystitis (inflammation and irritation of the urethra and bladder/perineal area) with radiation tx (including seeds).

- Other potential tx to see if we can get you some relief: PO Valium; rectal suppositories with Baclofen/Diazepam; muscle relaxers (Skelaxin)to see if they can help with pelvic floor tension; sometimes Hyperbaric Oxygen therapy is needed.”

Sept 11, 2023

Cystoscopy procedure with Dr. Urologist, his comment was "huge, ugly, terrible, very bad prostate. The radiation caused it to swell even more. Damaged nerve endings from the prostate. Solution: core out the middle of the prostate.” Diagnosis: Radiation Proctitis.” They administered some Topical Anesthetic, but it did not work. It was the worst pain I had ever felt in my life. I had been taking verbal notes on my phone before the procedure and left it on. The audio is awful to hear.

[NOTE: The sound of the procedure is available. I was using my phone to dictate work notes prior to the procedure. I ended a note and thought I had turned off the dictation, but in fact had just started another one. The attached sound file is unedited. The first 6 minutes and 30 seconds is dead air, again not knowing it was one. Pain starts then.]

September 19

Scheduled for Aquablation on November 2.

November 2-3

I had the procedure at Northside Hospital on November 3. I meet with Dr. Urologist in prep. He told me after the procedure to stop two of the meds. I don’t remember anything after the anesthesiologist said hello—expected. Afterward, I was in recovery, groggy, sore, and again hooked up to a catheter. It is now Saturday morning, November 4. The nurse tells me that this hospital section closes down on the weekend if there are no patients. Dr. K is not coming to check on me for post-op, but another doctor will be checking. Later, the nurse said that the doctor couldn't come and that I just had to keep taking all my meds. He tells the nurse that if she feels I am good, I can leave. I took my sore body, complete with a catheter, and drove the 120 miles home.

November 6

I called Dr. Urologist’s office and explained that the nurse let me go, the other doctor did not show up, and he told me to keep taking all my meds—not what Dr. Urologist. said to do.

November 9

I called twice more, and today, I got a reply from someone at the office that Dr Urologist said to keep taking the meds. I am confused.

November-December 

The pain has not gone away. Nighttime is a time of interrupted sleep. I am up 2,3,4 times a night—pain when urinating continues. 

It is risky to be away from a toilet for too long. The urge to go comes on quickly; if I can't get to a toilet, I leak. If I work outside at the house, and it comes on, I have to go in a cup I keep in my workshop or pee in the bushes.

I was Christmas shopping at the mall, and my car was far away. I walked to the car in the pouring rain, and the pain came, and I tried to run to the car. I didn't make it. I peed my pants—no soaked my pants. Fortunately, the pee-soaked me looked like I was just caught in a downpour, so when I went into Walmart to buy pants and underwear, I am sure they had no idea I peed myself. It was a humiliating experience.

December 18

I met with Dr New Urologist for a second opinion. I told Dr. New Urologist the entire story, and Dr. New Urologist decided to take me on as a patient. Dr. New Urologist told me to keep my next scheduled appointment with Dr. Urologist.

January 16

The best I could do was to get a 5-minute video session with Dr Urologist. He had no answers for the continued pain. He just said it could take months to a year to get healthy. Every time I talk to him, it is a new timeline. He does tell me that the radiation has caused the bladder pain.  The pain continues. I can't have any caffeine, or the pain is intense. I have a list of acidic foods I cannot eat. I told him that after the Aquablation, I got Peyronie's disease, and my family doctor said it happens from an injury. He quickly moved past that subject, saying, “That has nothing to do with the procedure.”

Life sucks right now. When this all started in 2022, I put my life on a scale of 8 out of 10, minus one for aging and one for occasionally getting up once at night. Now, I am at 4. The pain is less than 2023, but it has been 15 months, and the pain continues; I don't sleep, I cannot be away from the toilet too long, and I forget about sex with a bent penis and fighting depression.

July 2024. 

I switched to a different doctor, who is very good. I got new meds, and as of July 22, 2024, most of the pain is gone. Most nights, I sleep through the night. This is a huge step forward. I am rested in the morning, and I know that my emotional condition has significantly improved. I am not depressed all the time, which is a good thing. I look forward to the new day.

I just took another blood test for PSA numbers, and I am awaiting the result. Whether it is up or down, it is not the final word on the subject. I do another in three months, then six months, and then I will know if the cancer is back.

August 2024-December 2-24

The pain comes and goes; getting up at night is one or two times. The pressure to go is sporadic, but when it comes, I must seek a bathroom or leak. With a condition of frequent “emergency pees,” how can I get a job outside of the house? 

UPDATE:

On December 11, 2024, I had an episode of Diverticulosis. During the treatment, a CT scan was performed. Besides the Diverticulosis, they found stones in my bladder, kidney, and appendix. 

On December 16, 2024, I had a procedure to remove the stones. Dr New Urologist could NOT get all the stones out. Some stones are attached to the bladder wall and are too dangerous to remove due to the thin bladder wall and position with the Prostate. Referred to Radiological Oncology at Emory Hospital.