Today we celebrated the end of radiation therapy, but we still have a LONG way to go.
July 26th, 2023
After ten years with Tony and just two years married, he was diagnosed with prostate cancer. He had gotten a PSA blood test because his 72 year old father was diagnosed in 2022. Our family had never heard of a PSA blood test to screen for prostate cancer and because the chances of curing the disease are much higher when caught early, my husband’s Dad insisted all his sons all be tested.
Oddly, Tony is not biologically related to his dad and he was the only male in the family with an elevated score. We learned in December 2022 that he had an elevated PSA of 26. A normal score is two. In the weeks following after an MRI and full body scan we learned that the cancer had affected two-thirds of the gland, but it was unclear if the cancer cells had moved beyond the wall of the gland. Needless to say, the diagnosis came as a shock to me. I was not prepared to face the “C” word so soon after marrying my husband. Our health was something we foolishly took for granted, but as I have been told, avoiding hormonal cancers like prostate cancer is difficult. There are usually genetic markers that make some men more prone to prostate cancer.
Thankfully, Tony served in the Marines and has a service connected disability so the VA would handle and pay for his medical treatment. They referred him to Moffitt Cancer Center in Tampa for brachytherapy. We chose this course of treatment instead of having the prostate surgically removed because the prostate gland is attached to the nerves responsible for controlling urination and sexual performance. Neither of us liked the worst case scenarios regarding this option, so we put our faith in this course of treatment.
Tony has been blessed with very good doctors and nurses so far, and his prognosis is very good, but it has not been easy on him or on our family. Now that he is six months into treatment I can say that we were both completely unaware about what this treatment would be like and unprepared about how difficult it would be. His treatment included Androgen Deprivation Therapy, brachytherapy, and radiation for twenty-eight consecutive days. The doctors and nurses treated him and I went to some of his big appointments, but nothing the doctors or nurses conveyed made it sound as if this was a serious or deadly disease. As a glass half full kind of woman, I didn't think these treatments would seriously effect his health or our strong relationship.
While the radiation was mildly tough on him physically, the Androgen Deprivation Therapy was an emotional and spiritual roller-coaster that we didn’t know we were stepping onto. Androgen Deprivation Therapy is a slow releasing injection that patients receive in their subcutaneous fat. He received the name brand Eligard but other forms of Androgen Deprivation Therapy have been used to treat patients since in the 1940s. Tony is currently at the end of shot one and he will receive another injection at the six month and one year mark for a total of eighteen months of treatment.
After a few months on Eligard, they tested his testosterone level and found the medicine was doing it's job. My husband's pretreatment testosterone level was 350 but it was now at six nanograms per deciliter. This decrease of male hormones came with a host of side effects. We knew to expect a loss of libido, hot flashes, and potential loss of bone density, but his mental side effects were just as severe and more difficult to explain because the cycled from day to day and hour to hour.
The reason that Tony and I have always worked is because he is smart, witty, confident, powerful, and I jive with that guy. The physical side to this treatment is easy to deal with, but Tony was also greatly affected by significant albeit periodic mood and cognitive shifts. From moment to moment I wasn’t really sure who I was talking to and the things that were once so effortless now seemed impossible for us as a couple. This left us both discouraged, fearful, and anxious as we tried to navigate this new normal.
Sometimes being his person is just complete chaos, but it’s usually just silent annoyance until I can’t stand him anymore. So, at that point, I would pick a fight with him. I felt horrible about this, so on top of everything else there was a healthy serving of guilt to contend with as well. But, because the doctors recommended this course of treatment to save his life, that is what we were going to do, even if I have to take breaks from him periodically and visit friends in other cities.
As a patient with prostate cancer and his wife, Tony and I are doing all we can do, but we were simply not warned about the side effects of this therapy. My husband quickly became someone I did not recognize and I was alone. We had moved to the Tampa area in 2020 and I had worked from home and relied on him as my primary sounding board when dealing with life's issues. Because of this, I didn't have a community of women to lean on and now I felt utterly alone. I simply did not have a support system in place, so as a writer I became my own support system.
Over the past ten years, Tony and I have built a very strong and transparent relationship, with the cornerstone being keeping one another accountable. For the past decade Tony has been my best friend and it's really been he and I and my three boys against the world. I counted on and loved “us.” We leaned on one other for everything. But after that first injection, he was moody, tired, jealous, insecure, he questioned everything I did, and my macho man was clingy. Where did that leave "us" and how could I deal with this stress without being able to lean on my best friend?
We rode it out and we noticed a bell curve in his symptoms while on Androgen Deprivation Therapy, in that moodiness and hot flashes were not as severe at the beginning of the six-month delayed injection, then they got worse towards the middle of treatment, and then they were better again at the end. Dear One, use this knowledge to plan trips together because you will have lots of reasons to celebrate. Your health and that of your loved ones is not guaranteed so travel, enjoy one another, and make memories together while you can, also be proud about just getting through therapy as a couple because it is a big accomplishment.
As hard as going through Androgen Deprivation Therapy has been, I cannot imagine the challenges if my husband opted for a radical prostatectomy, which is a surgical procedure performed to remove the prostate gland and surrounding tissues. While this can be an effective treatment option to remove the cancer, there are serious potential complications with this option as well. Some of the possible complications of radical prostate surgery that Tony and I were just not prepared to endure include the following.
1. Erectile Dysfunction: One of the most common complications is erectile dysfunction, which is the inability to achieve or maintain an erection sufficient for sexual intercourse. This can be temporary or permanent, depending on various factors such as age, pre-existing conditions, and nerve damage during surgery.
2. Urinary Incontinence: Another common complication is urinary incontinence, which is the inability to control urine flow. This can range from mild leakage to more severe cases requiring the use of pads or other management techniques. Most men regain bladder control over time, but it can take several months to a year.
3. Urinary Retention: Some men may experience difficulty emptying their bladder completely, leading to urinary retention. This may require the use of a catheter temporarily or, in rare cases, long-term intermittent self-catheterization.
4. Bleeding: Bleeding is a potential complication during or after surgery. In most cases, it is minimal and stops on its own. However, excessive bleeding may require additional medical intervention, such as blood transfusion or further surgery.
5. Infection: Any surgical procedure carries a risk of infection. In the case of radical prostate surgery, infection can occur in the urinary tract or at the incision site. Antibiotics are typically prescribed to minimize the risk.
6. Lymphedema: Lymphedema is a potential complication that occurs due to the removal of lymph nodes during surgery. It can result in swelling in the legs or genitals and may require additional treatment.
It is important to note that not all patients will experience these complications, and many can be managed or improved with time and appropriate medical interventions. Discussing potential risks and complications with a healthcare provider is crucial before undergoing any surgical procedure.
Over the past eight months of treatment, we have had some rough times as a couple, renegotiating our new normal, but through honest communication, journaling, and trial and error we have found new ways to handle one another, one day at a time. Let me be clear, due to our unique issues couples' counseling was of little help and the Facebook support group I joined was not much better because all of the women were just as scared I was about their husbands' mortality. We prayed and went to church but the most important thing I did to help us cope was to journal.
I inquired with the Moffitt Cancer Center and the VA and found that there are cancer caregiver support groups available, but none specifically for intimate partners of those being treated with Androgen Deprivation Therapy and given the unique nature of his symptoms and the fact that I am not his caregiver, but his wife, just trying to communicate with my husband, I did not feel that those groups would benefit me. Dealing with the side effects of Androgen Deprivation Therapy is something altogether different. After all, I am still his wife, best friend, and supporter, but with no testosterone in his body the way I support him has had to change. Hell, the way I support me has had to change. Did that make me a caregiver or just a struggling wife? I believe that at this point, it is the latter.
It was only through the written word that I could express my complicated and deep emotions to my husband, and through reading my journal entries over and over again he was able to understand how important he is to me. After diagnosis, for me, it was not business and usual, but a complete and utter freak out moment. A cancer diagnosis stops you in your tracks and it was high time that we took a look at how we were living and changed a few things. You only get one spin on this planet and we understood that more than ever now. So, through traveling, journaling, and renegotiating our priorities You Have Arrived was born and it became our way back to one another.
Over the next year, as we continue his treatment I plan to share what I have learned about being married to someone going through Androgen Deprivation Therapy because frankly — there is no support group like this — and you are going to need help. Everyday is an Androgen Deprivation Therapy rollercoaster. We still struggle, but we are learning more about one another and I know my Amazing Man is still inside that body. Even on the worst days I can still see the twinkle in his eye and I am reassured that someday soon he will return.
See my interview with Gayle Guyardo on Bloom Tampa Bay here.
___Shannon Joy Mekeel’s first book was inspired by her husband’s prostate cancer diagnosis and androgen deprivation therapy. It is entitled You Have Arrived and will be released in fall 2023 and is now available for pre-sale at ShannonJoyMekeel.com.
The companion documentary, Hurry Back will debut April 2024 at the inaugural Redfish Film Fest in Historic Downtown Panama City. This 12-part series tells the story of her family’s struggles and victories over the past century.
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