The Worst Valentine's Day
The Body, Loss, & Healing
Sex.
I never thought it’d be possible to experience it again, but maybe it’s too early to say never.
Let me explain.
Sex and physical intimacy are uncomfortable and complicated topics for me to write about and share. I have a long and complex history with them. As a late-diagnosed Autistic ADHDer, I’m discovering that the topic of sex and physical intimacy is something that impacts many neurodivergents—so I no longer feel alone. Knowing this, I’m finally able to consciously work on healing my shame and embarrassment related to sex.
And, despite my discomfort, I’m going to share my experience anyway! In this article, I will share one very personal aspect of this complex topic. What you’re about to read isn’t exclusive to me, or anyone else in the ND community. This is something that impacts millions of people. It just happens that my story is somewhat unique based on how it has occurred.
Trigger Warning: In this article, I will be discussing a medical issue and treatment that I went through that impacted my ability to have an active sex life.
My Worst Valentine’s Day
On Valentine’s Day, February 14, 2013, I was diagnosed with diffuse large B-cell lymphoma (blood cancer) located on my penis. Yes, you read that correctly. In late December 2012, while showering, I noticed a small lump on the right-hand side of the shaft of my penis.
I freaked out! I was confused and very scared.
I didn’t know what to do. At the time, I had no clue that penile cancer, let alone penile lymphoma, was a thing. According to medical literature, “Primary diffuse large B-cell lymphoma (DLBCL) of the penis is an exceptionally rare malignant disorder and less than 20 cases have been previously reported.”1 Am I special or what?!
Generally, I thought I was taking good care of myself and had a skewed idea about the potential causes of cancer. Sure, for about two years prior, I was feeling increased fatigue, had low energy, and would frequently catch colds. But, I could easily explain that away.
My explanation for it all was that I just needed to slow down. I thought surely I was tired because I stayed up late, was a parent of two very active young children, and worked full-time.
But, cancer?! And, of the penis?! How was that possible?
Everyone I knew who’d been diagnosed with cancer, at the time, had other comorbid complex health conditions; while for me, other than fatigue, I felt fine and had a clean bill of health according to my health practitioners. No ongoing minor or major complaints for me. So, when I discovered the lump, I truly felt confused and worried.
“What if it was cancer?” I thought, “What would they do to treat it?” I wasn’t ready to face reality.
In 2012, at the time of my discovery, I was still in graduate medical training to become a doctor of acupuncture and had been working for over a decade in various medical clinics, hospitals, and other medical settings as a clinical massage therapist. The only cancer patients I had met who were undergoing treatment were all in poor health and unfortunately, many of them had died while still receiving treatment. At least those are the people that came readily to mind when I was thinking about my possible fate.
I didn’t want to end up like those patients. My fear got the best of me. I couldn’t think rationally. Forget the fact that I was in my late 30s and also thirty to forty years younger than those other cancer patients. Additionally, those cancer patients not only had different health histories from me but had different types of cancers as well. Ultimately, it didn’t matter, my fear felt real and took over.
So, without consulting anyone, I decided to take matters into my own hands. I’m just that kind of person. I did some research and found an online protocol for an anti-tumor essential oil formula which I decided to apply to my penis. Mind you, the information I found had nothing to do with penile tumors, or blood cancer for that matter.
As a side note, as a licensed healthcare provider, I need to say that I would not recommend doing what I did. Please seek out medical advice from a trained professional instead. I had my regrets for causing myself undue suffering and paid the price for it too.
What I ended up doing is causing a major immune response at the site of the tumor on my penis. The medical term is called balanitis, or inflammation of the penis. Due to the lymphoma, the swelling only got worse over a couple of weeks and it wouldn’t subside. Certainly, the essential oils did their job of causing a massive immune response. However, without proper blood and lymphatic circulation or other necessary support to the body, the tissue started to degenerate as my immune system was trying to do its job causing a massive inflammatory response.
By February 2013, my signs and symptoms accelerated, I had a massive open wound on the head of my penis and my symptoms were only getting worse. Even though by then, I was in extreme physical pain, I was still too afraid to seek medical attention. My mind was still very much in the grips of fear.
Luckily, one day in early February, a medical doctor colleague of mine and I were chatting when I asked him for advice. After sharing with him what was happening to me, he strongly encouraged me to call a urologist right away. Honestly, I’m glad he did; what he told me led me to take the necessary action to seek medical attention.
I trusted my colleague and his advice. He was straightforward with me which I appreciated. So, I called to make an appointment. Due to the severity of my condition, I was in the urologist’s office the next day. That’s where they performed a needle biopsy to confirm their suspected diagnosis. I would have to wait for a few days before the results came back.
Then, on February 14, I received a call confirming the diagnosis of lymphoma of the penis. From that day onward, Valentine’s Day would never be the same.
Fast Forward
In this article, I won’t detail the next 2.5 years of my medical journey and all the pain and suffering I went through. That’s not necessary or relevant right now.
By August 2015, after completing both integrative and conventional cancer treatments, I went into full remission. The cancer was gone. I survived both the cancer and the cancer treatments. It would take me another 18 months to heal my body from the invasive treatments. But, I did it—I survived.
Today, even though I’m older, I feel healthier than I did most of my adult life before the cancer diagnosis. Yet, there was one other thing that left with the cancer which has not returned–the function of my penis.
To be clear, I still have (most) of my penis (thank God!), but I’ve consequently had erectile dysfunction since 2012 and my ability to urinate has been challenged too. I’m glad I can urinate without any assistance; however, it usually takes me several minutes which before look dozens of seconds to use the bathroom. Some of this has to do with structural changes to the tissue and others with functional consequences of my new anatomy. But, I’ll leave it at that.
Initially, a year after my cancer treatments ended, I followed up with a urologist who told me without major surgery (which was not guaranteed to make any improvements), I would never have a typical penis again.
Yet, almost 9 years after my last cancer treatment, I’ve discovered a newer urological treatment and have recently been going through rehabilitation of my penile tissue. It’s too early to know for sure, but I have already seen and felt improvement.
I’m not sure if I will ever be able to have intercourse again, but my urination has improved and the penile tissue is remodeling and improving as well. It’s truly amazing.
Returning to More of Myself
When I began this treatment and started to notice positive changes in my body, I realized how much my self-esteem was negatively impacted over the past dozen years due to the effects of cancer.
Fear, anxiety, and stress are common emotional responses [to erectile dysfunction], but one qualitative study found that actually, the most common initial reaction was a sense of emasculation. This feeling can be particularly intense in young men, with one individual describing it as ‘total humiliation’ and a ‘profound feeling of being less than anyone else’. Understandably, this can deepen any insecurities and have a subsequent impact on an individual's romantic relationship. When the issue was severe and long-lasting, some even felt suicidal.2
Let’s be clear, I just recently began the treatments and, yes, there have been some positive signs of improvement; but, it’s still too early in the treatment to know for sure if any of the typical penile functions will return. There was a lot of tissue damage and the process may take a while if it creates any meaningful and permanent changes. I’ll see.
However, even though they’ve been minimal so far, the current subtle improvements to my body tissues and the potential of a more fulfilling sex life in the future have made positive improvements to my mood. I am hopeful. I feel more like myself—less emasculated, more human.
While I go through these treatments, I’m being mindful of any emotions that come up for me. Consciously, I’m working to stay positive and address my shame and poor self-esteem. I feel lots of gratitude for my body and modern medical technology.
I hope that by talking and writing about my experiences, I can normalize conversations about sex and sexual dysfunction not only for myself but for anyone else experiencing similar issues. Learning to love myself includes normalizing my experiences and healing both my shame and self-esteem issues so I can in turn love others as well.
I would love to hear from you. Please consider leaving a comment and sharing this article with anyone else who can benefit from my writing. Thank you for being part of this community.