One year ago today, I had my last CyberKnife treatment for prostate cancer (PCa) and was about to begin a 6 month androgen deprivation therapy (ADT – aka “chemical castration”). The idea was that the ADT would kill whatever cancer was not zapped by the radiation by eliminating the testosterone that feeds the cancer cells. This past year has been quite a journey for Diana and me – physically, spiritually and emotionally. I’ve been depressed, felt what it’s like to go through menopause, had a 4 month brain fog, and had the libido of a 6 year old. But today, all signs point to a successful treatment and in the immortal words of Steven Tyler, “I’m back……!”
I’ve blogged about my PCa journey in an effort to keep friends and family apprised of my treatment, but also in the hopes that it might be of use to someone else faced with the same diagnosis. Over this past year, I’ve been able to share my story with a few men that have been recently diagnosed, just as several did for me. I’ve also read stories of men with much more advanced cancer for which the options are more limited – men younger than me, even. Those stories break my heart, but are usually told on support group lists where there is incredible support from others who have faced similar journeys. If you are faced with this diagnosis, join a physical or virtual support group – you’ll need it.
When I started down this path over a year ago, I was faced with deciding which treatment would leave me with side effects that I thought I could live with. That’s the real conundrum – there are always side effects – no matter what treatment you choose. Typical side effects for PCa treatment include incontinence and impotence. (Diana told me she wanted me to be continent and potent and so did I!) I opted for the CyberKnife/ADT route based on my research and my intermediate grade cancer, and I can say that I’m mostly continent and potent again! It’s always a new reality – in my case, not bad, just different. Each man has to decide for themselves what they want to do – no doctor will give you a definitive answer, although they all have their opinions! What was right for me might not be right for someone else.
I think the most important thing I’ve learned over this past year is gratitude. I’m grateful for life, my family, my friends, my doctors, my bees and all that I have. I have a daily meditation practice that centers me and am grateful for all that I’ve learned about meditation at the Eldorado Mountain Yoga Ashram. I end each meditation session with a gratitude prayer – thankful for even “mundane things” – a car to get me places, enough food to eat, a good job, a roof over my head. Recently, Diana posted this on Facebook:
“Even when you can’t find anything to be grateful for, say thank you anyway. Gratitude is one of the most powerful forces in the universe. You don’t even have to feel grateful to express gratitude. Simply saying thank you is like throwing a handful of wildflower seeds on clay. A few passing raindrops are often enough to help those seeds sprout into flowers. Beautiful things grow even on the hardest ground.”
Truer words have never been said. And the thing I’m most grateful for in my life is my beautiful wife.
The following details might make some of you yell, “TMI!”, but I need to document it for those who might be heading down a similar path. All in all, if I had to do this all over again, I’d choose the same treatment.
At my last checkup in April, my PSA was at 0.33 – up a bit from the previous 0.09 (presumably from the cessation of ADT), but still good. My doctor told me that in her 20 years of practicing, she hasn’t seen anyone have a relapse after responding as well to the treatment as I have. While only time will tell, I’m taking that as a win! I’ll continue getting my PSA checked every 3 to 6 months as part of a CyberKnife study and continued monitoring. It will be interesting to see what this month’s value end up being.
ADT (aka – The Evil Lord Lupron)
It’s hard to know which of the lasting side effects are the result of the radiation or the ADT, but there are some effects during the treatment that are easy to attribute to ADT. I had a 6 month course of the drug Lupron and for the first 3 months of once a month shots, the side effects were negligible. I opted for a 3 month shot in September which theoretically would last until December. By October, the side effects were kicking in – hot flashes, no sex drive, brain fog, emotional swings and depression. (I never got the enlarged tender breasts, so I figure that is a win!) I liked what one guy said about the brain fog – “It got so bad, I stopped doing math in my head!” One of my friends said that The Evil Lord Lupron sounded like a Sith Lord and I’d agree. I told her I think of testosterone as midi-chlorians and once the Sith Lord is defeated, my Jedi powers will return. Still working on that.
They say it takes a time equal to the amount of time you were on ADT to recover from it, so here I am, six months later, feeling that I’m pretty much over that. I’m not sure what my official testosterone levels are, but I’d guess they are back up to near pre-treatment levels. I don’t have hot flashes anymore. (My doctor told me to think of them as power surges. Fuck That! They were annoying!) I guess the only upside was that I had them during winter. Diana just started having hot flashes and here we are heading into summer. At least I can relate! My sex drive has returned, even if my equipment doesn’t work as well as it used to (yet). Fortunately, I have a wonderful wife who is patient and open. I don’t think I could have gotten through this without her. I’m less emotional and caring – I’m now back to yelling at idiots when I drive which is a sure sign that I’m back. I have more energy and don’t feel depressed like I used to. Not sure I’m ready to do math in my head again yet, but my phone has a calculator if I need it.
Urinary (In) Continence
I rarely have problems with continence (leaking, etc). What happens more often is that I have to pee more frequently on some days (but not most days). I don’t have to get up in the night any more than I did before (which is pretty much never). One annoying thing is that if I have to pee really bad, when I actually get to go, it comes out really slowly. I’m like, “Really?” My doctor’s assistant told me, “Don’t hold it in then!”, but sometimes, there’s just no place to go. Most days, I think I pee better than before! There are also times when I’ll get a sudden urge to go and I have to find a bathroom right away, something that another PCa patient told me before I headed into this. Mostly, in this new reality, things are good in this department.
The change in our sex life has been the most difficult part of the treatment. During the Lupron treatment, I had no interest in sex and most days couldn’t get an erection. If I happened to get one, I had no desire to do anything with it. This was really hard on Diana (as well as me). Despite all the documentation that this was “normal” for the treatment, feeling less desirable as she was going into menopause was quite a blow. We kept trying to be intimate, but it was not easy. In retrospect, I probably should have been using a penile pump through all this to keep the blood flowing. I’ve been taking 5mg of Cialis daily, but I think I should have done something more. Despite that, over the past 2 months, I’m back to having daily erections, even back to the typical morning “woody” that most men have. They are not the teenage boners of yore, but after the past 6 months, I’m taking what I can get! And, they keep getting better every day! Sex is wonderful again! One other interesting side effect is that now I have dry orgasms – no semen – something I knew would happen with surgery, but wasn’t expecting it with radiation. Some couples think this is a benefit (no messy sheets to clean up), but we’re still getting used to this. Not bad, just different.
One of the more annoying side effects is the change in my bowel movements which is a side effect of the radiation, I think. I used to go typically once a day after my morning coffee. These days, I have to go more frequently and sometimes very urgently, particularly when I first get out of bed in the morning. Maybe I’m just more full of shit than I used to be! One person that helped me, told me that having more frequent bowel movements was good, so maybe I should look at this as a good thing. Hey, I’m getting more crossword puzzles done! Taking a fiber supplement helps. I use Metamucil which reminds me of drinking Tang as a kid – just like the astronauts! But, it’s just a new reality to get used to and mostly I am used to it.
So, those are some of the gory details. We are still adjusting to our new reality, but I’m grateful to be cured and look forward to a long and healthy life from here on out!
My experiences are based on my body, my diagnosis (Gleason 4+3=7, PSA 4.5, Stage 2), and my preferences. For men with lower grade cancer (e.g. Gleason 6, PSA < 10), ADT may not be necessary. For men with worse grade cancer (PSA > 10, Gleason 8 or more, Stage 3 or 4), options may be more limited and ADT might be the best option. Some men have fewer side effects than I did, even with the same treatment.
If you are inducted into this reluctant brotherhood, become informed of all the treatments and all your options (see the links at the end of my first post). Talk to others who have been through this – most of us are willing to share our stories/opinions (but remember, everybody has an opinion and you have to make your own decisions). Join a support group – even if you only go when weighing your options like I did. Every year, almost 200,000 men are diagnosed with PCa in the US (1 in 7 during their lifetime), so you are not alone. In most cases it’s treatable and most men die from something else.
jonny · June 5, 2016 at 9:37 pm
You are my hero…. all the best.
Don · June 5, 2016 at 11:52 pm
That’s what she said. 😉 Thanks for being there for me, Jon! It means a lot.
Barb Estes · June 6, 2016 at 12:33 am
I’m grateful for you and Diana and for all the open and honest information you shared about your journey. May you continue to have improving health my friend.
Don · June 6, 2016 at 1:03 am
Thanks so much, Barb!
Amy · June 6, 2016 at 8:40 pm
Don, thank you for sharing. We all have much to learn about gratitude and I love that you have a daily meditation practice. I have much to learn.
Don · June 6, 2016 at 9:00 pm
Thank you, Amy. I think you learned a lot with Delaney and we keep learning more each day. If you want to learn to meditate, Diana’s a trained teacher!
Julie · June 7, 2016 at 1:54 am
I’m so glad that this is your last PSA update — because you kicked cancer’s butt! Rock on! Thank you for sharing your experience so openly and honestly. Even though you have ups and downs, I have faith your midi-chlorians are going to kick in overtime, and you’ll be doing mental math before your know it.
Love what you (and Diana) said about gratitude. Rock on, Don!
Don · June 7, 2016 at 1:15 pm
Thanks, Julie. Now that this is behind me, I should have time to write more blog posts about bees! Still trying to figure out the timing on when the drones in BnB2 are going to die – they are really bringing the hive down I think. Even doing the math on paper isn’t soon enough!
Julie · June 7, 2016 at 2:50 pm
LOL! Poor drones. Probably about 3 months from now. What if you removed all of the bars that have nectar/honey? I’ve never tried it, but it might manipulate the bees into thinking they’re low on stores and cause them to eject the drones on their own. That often happens when I make splits — with a lot less stores suddenly, I often noticed drones getting kicked out. Then you could put the honey back in.
Don · June 7, 2016 at 3:11 pm
There is no honey to remove – the drones have eaten it all! When I checked this last weekend, instead of the drones being all over the combs like in the past, they were mostly all on the bottom of the hive, hardly moving. I had to poke at them to make sure they are alive. (probably should have just scooped them up and thrown them out, but I’m always afraid I’ll through the queen with them!) I can only hope that they are on their way out. I did see the girls kick some out recently, but there are probably a thousand drones in this hive that were lain before I made the split in early April (hatched late April)
The queen is not laying very well right now and there is very little nectar in this hive. I’m hoping that they are just waiting for the drones to leave/die and then will build up again. If not, it might be time to requeen. Perhaps she wasn’t mated very well.
Julie · June 7, 2016 at 7:29 pm
Bummer. You did have a lot of bad weather, so it could be that she wasn’t mated well, but I think that would just lead to her being superseded, or maybe show up in a spotty pattern. They can run out of sperm, but even in a poorly mated queen, I think it takes longer than a month.
I had another idea today — just thinking/typing out loud — What if you built a shaker box? Mike Palmer has a shaker box that is basically a wooden box that is open on top and has a queen excluder on the bottom. About 2″ up from the bottom of the box on the inside, he has a strip of duct tape going all the way around. He says bees don’t like to cross the duct tape, so they go down through the screen. Maybe you could use something similar to screen out drones, though you might need a slightly smaller screen — I think #5 or #6 hardware fabric. Bush indicates sizes on his website.
Anyway, what would happen if you caught your queen and set her aside & then shook all your bars through the “drone excluder”?
Don · June 7, 2016 at 7:55 pm
For some reason, there’s no Reply link after you last post, so I’m not sure where this will end up in the sequence! Thanks for the idea about the shaker. At this point, I think I can just scoop most of them out with my hands if they are still laying around on the bottom of the hive when I look this weekend. If I can find the queen (still haven’t seen her in several inspections), I could cage her and if the drones are on the combs, I could just shake them out. When they were on the combs, it was mostly drones and very few workers, so I don’t think I’d need the screen!
Jerri · June 7, 2016 at 7:19 pm
you are amazing~~~~~
Thanks for sharing your thoughts and feelings (not even TMI) while undergoing this major challenge in your life.
You’ve lifted us up by your words.
Don · June 7, 2016 at 7:29 pm
Awww, shucks, Jerri. Thanks to you and Marty for your support for us. I guess I can’t use this as an excuse not to get work done for Marty anymore. 😉