The Aftermath - 004

On the fourth day after my radical prostatectomy, my sister drove me back to Celebration, and we rented a hotel room. The surgeon had asked me to stay in the area for one night after having my catheter removed in case there were any complications. The following morning, we went to my doctor’s appointment.

My sister stepped out of the room while the nurse removed my urinary catheter, and I immediately learned what it is not to have control of your bladder. After just over fifty years of perfect bladder control, finding yourself without it is shocking.

The nurse helped me put on Depends underwear, and reality set in. We were told in the class not to expect any bladder control at all for the first few weeks and then to expect slow but steady improvement. I had been doing Kegel pelvic exercises before my surgery, so I expected some control.

My sister rejoined me in the exam room, and then one of the surgeon’s assistant physicians came in to give me the pathology results. On the drive to the clinic, I was experiencing a sense of dread and could feel myself crying inside when I thought about getting the results.

With a smile, the doctor said,

Your pathology results show it is a Stage pT3b, Gleason Score 4 + 3 = 7 with tertiary pattern 5, involving 70% of the entire gland, with multiple positive surgical margins. Two of nine lymph nodes were positive for metastatic adenocarcinoma.

This meant the tumor was locally advanced and had escaped the confines of the prostate. In addition, positive surgical margins meant that the surgeon wasn’t able to resect all of the tumor, and pieces of the tumor were left behind in my pelvis.

I left my body and watched this whole experience from outside of me. I sensed my sister’s concern and watched as she reached for my hand. We held hands until the doctor finished his spiel.

He asked me if I had any questions, and I said no. I slowly came back into my body. My sister said, “I’m shocked. I wasn’t expecting that.” I said something like, “It will be okay,” even though I didn’t feel that then.

The head surgeon came in and reiterated the results. While trying to be positive, for which I’m thankful, he said he’d had a patient with a pre-operative PSA of 300 that ultimately dropped to an undetectable level six weeks after surgery. He told me that story so I’d keep my hopes up even though it had spread to at least two of my pelvic lymph nodes.

We would recheck my PSA in six weeks. If it was undetectable, that was an excellent sign that the surgery may have been curative. If the level was higher than 0.1, my chances for a cure were essentially zero.

My sister and I walked outside and sat on a bench in an outdoor walkway. We talked about how the news might impact my husband, Mike, and how I could word it to give him a sense that everything would be okay. That meant leaving out a lot of the details and associated medical knowledge I had regarding my condition.

We discussed telling the rest of my family, and she offered to do that. Finally, we discussed that I’d need to maintain a positive attitude to achieve the best possible outcome. I knew that would be the hardest part. A typical human can only experience so much darkness before it settles in and corrupts their mind.

I had already experienced so much - the months of painful prostatitis, the months of dreading a prostate biopsy, the painful biopsy, the terrible news of the biopsy results, the painful surgery, the urinary catheter, the reduced physical stamina, the scary surgical pathology results, and now I was incontinent and impotent. That’s a lot to experience in less than one year.

I had come across a couple of holistic practitioners online who said you shouldn’t use the term fight or anything similar in your quest to resolve cancer. At first, I thought maybe they were right. So, I tried loving this cancer and spoke sweetly to it, asking it to show me what I needed to learn from it.

In the end, I settled on duality. I can love it for what it teaches me, and I can hate it for what it has done to my body. I can take full responsibility for my experience while at the same time doing whatever it takes to fight this cancer and beat it. That feels right to me.

While I realize that fighting reflects conflict, fighting also implies strong actions to conquer something. I need to feel strong and also need the energy of conflict to spur me on.

At the request of my surgeon, I started attending pelvic floor rehabilitation to help resolve the urinary incontinence. I hesitated to go because I had read the pelvic floor therapist would use biofeedback, which consisted of the practitioner sticking a probe in my rectum. I’d already had enough invasive procedures for a lifetime.

The area where I live is lucky to have a very dedicated and talented team of pelvic floor rehabilitation therapists called Smart Body Rehabilitation. I met with two team members, including the owner, and was very happy with the experience.

The owner allayed my fears and showed me we could do biofeedback without a rectal probe by putting a couple of sensors on the surface of my perineum. I’m very thankful we did that because it showed me that I was doing the Kegel contractions too hard, incorporating my abdominal muscles, and counteracting the pelvic floor contractions.

When I started doing the Kegel exercises properly, my urinary incontinence dramatically improved. Over time, I’ve regained almost complete control of my urinary continence. I only get a little leakage on days when I’m really tired or when I push myself hard working out with weights. A small pad in my underwear takes care of that.  

Anyone going through a prostate cancer diagnosis and treatment quickly learns that any modesty you thought you might have rapidly goes away. Whether it’s someone sticking a finger or a probe up your butt, pulling a urinary catheter from your penis, palpating your perineum to check your Kegel efficiency, or inserting a balloon in your rectum for a CT scan, you learn to stop being so modest.

It’s forced on you, but if you want to manage these experiences successfully from an emotional standpoint, I recommend you release your resistance to them. Try viewing all of these experiences as attempts to help you. I learned that the sooner I acquiesced mentally to these things, the less stress they caused me emotionally. But I’ll be honest: All of those things were stressful.

Part of the rehabilitation process recommended by my surgeon included a prescription for a penis pump. I was told to start this one month after surgery for ten minutes a day.

The device looks like a large round tube with an electric pump on one end and a hole on the other. You wrap a piece of silicone over the open end, insert your penis, and then turn on the pump. I quickly learned not to overdo it because if you leave the pump on too long, your penis starts to ache from all the pressure.

The instructions say to press the button on the pump for a count of three while the device creates suction and enlarges your penis. While your penis does enlarge, it doesn’t look much like a real erection. This is because the penis pump doesn’t engorge the base of your penis with blood. After a while, I gave up on the pump because using it was too painful.

As part of the penile rehab, I was supposed to take one-half of a Viagra tablet on Mondays and Wednesdays and a whole tablet on Fridays, whether I was attempting sexual activity or not. The surgeon theorizes this helps maintain blood flow to the penis and aids in preventing atrophy and scar tissue formation.

I had no difficulties with erections before the surgery, but the Viagra did nothing except cause me to have facial flushing. Most insurance plans don’t cover medications like Viagra, even after a prostatectomy, but mine did once I met my deductible. Regardless, I stopped the Viagra because it never worked for me.

There was one shining light in all of this. I’ve found it’s easy to have an orgasm without an erection. Some men find that shocking. After all, your biggest sex organ is your brain. Also, when you orgasm after a radical prostatectomy, there is no ejaculation. It’s all very strange, but you get used to it because, like everything else, you must.

I’ll return to see the surgeon for the first post-operative PSA level six weeks after the surgery. Even though the logical part of me knows the PSA won’t be zero, the kid in me still hopes the PSA level will be undetectable. Either way, I’ll be okay.