“The diagnosis is anal cancer,” I hear the oncologist say firmly and formally. As the words leave her mouth and approach me, however, they become muffled and distorted, as though I am sitting behind heavy silk curtains on the balcony of a hotel in Marrakesh, the fabric suddenly blown about by a sirocco off the Sahara. Then, abruptly, I am whisked away to a subterranean cavern, cool and silent, where the sound of the doctor’s voice barely penetrates, and the outside world seems distant and somewhat unreal. Am I dreaming?
I already know the fact of the diagnosis: a medical degree and 25 years working in the field means that as a 49-year-old gay, HIV+ male with rectal bleeding and a firm irregular mass that I have just discovered inside my anal canal, there is no doubt that I have developed anal cancer. It is hearing the words spoken out loud for the first time that throws me so abruptly off balance.
My body tenses and withdraws subtly away from the doctor and her strangely offensive words. In truth, it is the unconscious clenching of my anal sphincter that causes this subtle movement. The more profound movement in this long, drawn-out moment, however, is occurring in my mind. A barrage of thoughts have arisen, crashed chaotically into one another as they jostle for supremacy, then all but the victorious one flees from my brain via the foramen magnum to take up refuge in the vicinity of my cauda equina fearing annihilation.
The triumphant thought is not one about how I acquired the disease; it’s not a thought about the various medical treatment options available for the cancer; it is not the question concerning whether the cancer is curable or not; it isn’t what my life expectancy is likely to be; it isn’t even a thought about death — something that has just become significantly more tangible than it was only moments before. No. The victorious thought on hearing the diagnosis spoken is my reaction to the type of cancer I have acquired.
Anal cancer. Oh no, anything but that. Why couldn’t it be a nice respectable rectal carcinoma, prostate cancer, or even a garden-variety lymphoma—Hodgkin’s or otherwise. I can imagine myself telling my mother and work colleagues these diagnoses, but anal cancer? Oh, great!!
But let me back up a few steps. The moment of confirmation of the diagnosis of cancer in the oncologist's office, while a significant moment in anyone’s life, is not so early in most stories of cancer, and this one is no exception. The events leading up to this pronouncement are worthy of some attention.
In some ways the story begins in childhood. I discovered at an early age that erotic images of men caused pleasurable sensations in my physical body. By the time I was twelve years of age, however, I realised that this response, while seemingly normal for me, and most certainly automatic for my body, wasn’t considered normal or appropriate by society. Throughout my teenage years, as testosterone flooded my bloodstream and my physical body changed dramatically, the desire for these unnatural experiences grew, while their expression went firmly underground; I started to hide this side of myself from my family and from the world. It simply wasn’t acceptable.
Certain things I heard on the news and elsewhere gave rise to mounting concerns about my sanity and integrity. Should I really be locked up, put into therapy, drugged, or even killed, for having these urges? Was I really such a terrible person? Shame about who I was started to pervade my experience, and settled in as the baseline of my emotional milieu for the next 30 years.
When I finally came out to my parents in 1990 — I was of 26 years of age — the response was not positive. There ensued a period of about ten years during which I had little contact with my family. This perceived rejection caused a further rallying of the shame I felt around who I was — a gay man. It grumbled continuously in the background, but was never far from conscious awareness.
Just two years later a mysterious illness, which for me took the form of a transitory painful ascending paralysis, rocked my world. This turned out to be my seroconversion illness; my body had been infected by the human immunodeficiency virus. In 1992 HIV/AIDS was well established as a scourge of gay communities worldwide, with large numbers of men dying from this mysterious and confounding illness. Knowledge about HIV, however, was still quite rudimentary, and treatments were only just starting to be developed. At this point in time there was little evidence for the efficacy of the treatments, particularly in the longer term, and it was widely assumed that a diagnosis of HIV would — sooner rather than later — lead to full blown AIDS. In effect, it was a death sentence.
My response to this news was, firstly, that it was a resounding confirmation of the worthlessness and shame of my very existence and that I was a deserving victim of the gay plague, and secondly, that I was going to have as good a time as I possibly could in the short time I had left. I was going to go out with a bang, and I partied as if there was no tomorrow.
HIV has been my intimate travel companion in this physical form for 24 years now. It is so much a part of my life’s everyday landscape that on a day-to-day basis I barely give it any mind. Daily medication — now down to just one tablet a day — keeps the virus replication at bay. Side effects of the medications are now, thankfully, minimal. Some copies of the viral RNA are presumably dormant in my lymphocytes and macrophages, apparently never able to be fully eradicated once they have taken up residence there, but a normal life expectancy is now almost universally touted by experts in the field.
Six-monthly blood tests show that I have normal white cell counts and an undetectable viral load. History confirms that I have an exceptionally competent immune system. In fact, I seem to have acquired a super immune system, suffering from less illness, and overcoming run-of-the-mill infections more quickly than I did when I was younger; I'm the healthiest person I know.
In more recent years, the shame associated with being gay and HIV+ started to find resolution through spiritual self-inquiry (see Spirituality). In 2003, the mysterious arising of the spiritual urge — the longing to know the deeper meaning of life, to know the deepest truth of reality — led to a process of inquiring deeply and earnestly into my moment-to-moment experience, with particular emphasis on looking at my emotions. This unveiled the deep well of shame and worthlessness that I'd been avoiding feeling at all costs my whole life, and which was, paradoxically, fuelling all activity in my life (see The Shadow). Inquiry also revealed shame and self-hatred to be simply the natural response of the emotional body to the sense of separation from the source, from love, from God, that is inherent in the individual ego’s very existence; it's a universal human experience. In progressively seeing through the ultimate non-reality of the ego, these painful negative emotions began to dissipate, and a deeper love — the unconditional kind — started to make itself known to me.
By early 2012, my life was being lived virtually free of negativity. I was happy and fulfilled, and my baseline emotional state was again one of joy. Yet there were still times when I could go into old stories of inadequacy and unlovability, and I began to intuit that there was another, deeper, layer of shame that was still to be discovered and dealt with. At around this time a parallel story, one occurring on a very different level of reality, but one very relevant to this overall story of cancer, began.
Once upon a time, in an anal canal not so very far away, there lived a stratified squamous epithelial cell named Wayne. Now like every other stratified squamous epithelial cell that has ever lived, Wayne was flat, weirdly irregular in shape, and completely surrounded by other, virtually identical yet somehow also strangely unique, stratified squamous epithelial cells, each of whom were, coincidentally, also named Wayne.
Wayne’s life had begun just a few days before when a basal epithelial cell — let’s call him Alan shall we? — residing in the much sought-after enclave of the stratum germinativum, underwent mitosis producing an exact clone of himself. Alan had named his clone Wayne, and set him free to rise up through the layers of The Skin on his journey towards The Surface.
Wayne wasn’t particularly active as far as cells go. Mostly he liked to just hang out, mind his own business, and generally fit in; he didn’t like to make waves. In fact, Wayne spent most of his days sleeping. At the urging of his DNA, Wayne would occasionally turn some small molecules into larger molecules which he would then externalize onto his cell membrane. Here these large protein molecules — his surface receptors — would adhere firmly to matching molecules on his neighbouring Waynes' cell membranes. Together they formed an impermeable barrier: The Skin.
Not a bad job for a cell, thought Wayne one day as he reflected on the meaning of his life. Really, he was quite content in his mediocrity. To some cells Wayne’s uninspiring existence didn’t seem like much of a life at all, but for Wayne it was all he knew. He had no ambition to be anything other than a stratified squamous epithelial cell. He knew nothing of cruise ships with waterslides, tequila shots, on-board romances, and partying till dawn. Wayne had never heard of freedom of speech, or the cellular rights movement; he was content being a stratified squamous epithelial cell.
A few sleepy weeks passed by, then, one steamy day in late summer Wayne noticed that he was feeling out of sorts; he was starting to shrink. Wayne had started to dry up in preparation for his future fate when he would briefly serve his role on The Surface, before sloughing off The Skin and entering the mystical void beyond the body — Cellular Nirvana. Wayne had no fear of death so he welcomed this inevitable transition. He did, however, start to wonder what the cellular afterlife might be like . . . until his quiet reverie was rudely interrupted:
I wonder what Eternity is going to be like? Will I still be able to make surface receptors in the void? Did I carry out my role as a stratified squamous epithelial cell well enough? Will my fellow Waynes join me in the cellular afterlife? What will I be in my next incarnation? A myelin-producing oligodendrocyte perhaps? Wouldn’t that be great? I could hang out in The Brain with all those smart neurons. It would be so exciting insulating an axon while action potentials whiz through me on their way to some distant synapse. Wow!
Oh . . . hello. What are you, strange blobby thing that has just bumped into me? Oooh, you feel disgusting, not at all like a Wayne. Oooh, get away from me, I have a bad feeling about you.
But the blobby thing had stuck firmly to one of Wayne’s surface receptors, and, no matter how hard he tried, he couldn’t shake it free. Now Wayne had led a very sheltered life to this point, buried well below the anal canal’s epithelial surface, and as a result he had never encountered a virus before. This particular virus, a human papillomavirus — let’s call her Clarice shall we? — seemed to be taking a particular liking to Wayne. In fact, Wayne’s warm, and slightly moist location, as well as his flat but not yet dried up epithelial form, was exactly what Clarice had been looking for.
Recently Clarice herself had undergone a mutation of her DNA which was causing her to express a new molecule on her surface. A human being in a microbiology testing laboratory might, as a result of this new molecular expression, label Clarice HPV 16, but as Clarice would have absolutely no inkling what the implications of such a designation would be, I suggest we don’t tell her, OK? Clarice just knew that she was now being drawn inexorably towards warmer, moister, micro-climates than she had been previously; any old skin cell would no longer satisfy her. Perhaps I’m getting pernickety in my old age? Clarice thought.
As it happened, Clarice was yet to experience a moist vaginal wall, the inside of an uncircumcised foreskin, or the warm, wet, windy grotto of a nasopharynx, and, as fate would have it, she was not destined to ever have a close encounter with a cervix where she might have felt most at home.
Oh well, this anal canal Wayne will just have to do I suppose. Stop struggling, damn you, you stupid Wayne. It’s inevitable that I’m going to infect you, so why don’t you just relax and this will go much smoother for both of us.
Having attached herself firmly to Wayne, Clarice began fusing her viral capsid with his cell membrane. She then released her DNA into Wayne’s interior, and died in an explosion of absolutely miniscule proportions, with no fireworks, and virtually no fanfare to speak of.
One could accuse Clarice in particular, and viruses in general, of being narcissistic. Thinking only of their own wellbeing, while being blindly unaware of the wellbeing and feelings of those around them. But Clarice, like all viruses, was merely following her programming. When you’re a virus you have no higher mental capacities to see through your personality shortcomings that might be improved with a bit of cognitive behavioural therapy. As a virus, you don’t have the capacity to see the possibility of a more fulfilling existence inherent in a life of compassionate service to others. No, a virus is a virus, plain and simple; selfish, and self-absorbed.
Fast forward a few hours and we find Wayne starting to feel most peculiar. What’s gotten into me? That nasty Clarice made a mess of herself all over me a few hours ago, but then she literally disappeared. Now I’m feeling just dreadful.
What Wayne couldn’t understand was why he had suddenly acquired the urge to be extremely busy; it was most unlike him and it didn’t feel at all natural. He just couldn’t seem to stop himself making proteins, new ones, and lots of them. Oh well, DNA knows best. I just do what it tells me to do, right?
More disturbing than this new protein making activity was that Wayne seemed to be putting on weight . . . fast. He had been so slim all his life, much like all his neighbouring Waynes. It felt most peculiar to suddenly find himself blowing up like a balloon. Wayne’s neighbouring Waynes weren’t at all amused: there simply wasn’t room for this new expanded version of Wayne, and they all started complaining bitterly about the overcrowding and lack of space resulting from his selfish behaviour.
Actually, I’m not feeling very well, Wayne said to one of his adjoining Waynes as he pressed his way past him. I don’t feel at all like myself. In fact, I’m not sure that I still am myself.
In the weeks that followed, what had started out as Wayne, altered by Clarice’s DNA injection, started to develop into a completely new and unexpected structure. The burgeoning squamous cell carcinoma — let’s call him Darren, shall we? — grew steadily, having overcome the cellular regulatory mechanisms found in Wayne’s native DNA programming. Frank slowly started to rise above The Surface, killing many of the surrounding Waynes in the process, and, most surprising of all, acquired his own personal blood supply.
I spent a month in India in March of 2013. The trip was a pilgrimage to connect with the source of my spiritual lineage. It included visiting the sacred mountain of Arunachula in Tiruvannamalai, near Chennai in Southern India; the place where Ramana Maharshi lived out his life after his spiritual awakening as a 16-year-old boy. I spent time in Lucknow as part of a gathering of sangha from all over the world organised by Gangaji and Eli (see Spiritual Teachers). Here we attended Satsang at Papaji’s Satsang Bhavan and at Brindavan Farm, and visited Papaji’s house. I also visited Haridwar and Rishikesh on the river Ganges in the foothill of the Himalayas. Overall it was a wonderful experience, but my physical body suffered increasingly while I was there. At the time I suspected I had contracted some nasty bacteria or protozoa as the source of my growing malaise and increasingly problematic bowel issues, but my intuition was off the mark on this occasion.
Just one week after returning home, in April 2013, I received the diagnosis of anal cancer. Histologic examination of the cancer and radiology testing showed it to be a stage IIIB squamous cell carcinoma of the anus, and, as expected, it tested positive for HPV 16. Two weeks later I started the recommended treatment which consisted of six weeks of intensity-modulated radiotherapy combined with two rounds of chemotherapy in weeks one and five. The effect of this treatment on the cancer was dramatic; the effect on my physical body and energy levels even more so. Each dose of radiation drained more of the life force out of my body, and it was months after the final treatment before this started to return to normal.
I was grateful that the radiotherapy protocol for treating anal cancer had improved in recent years, and was now a more focused treatment with less radiation being delivered to tissues distant from the cancer. This improvement in the targeting of the radiation, however, did nothing to ameliorate the inflammatory reaction in the rectum, anal canal, and perineal skin that was the expected and desired effect of blasting large doses of X-rays directly into these tissues. By the fourth week of the six week course the skin of my perineum and anus had been stripped of its epithelium, and the physical sensation was of having a red-hot poker permanently lodged in my anus, day and night. This feeling lasted for about six weeks in total. During this period it was virtually impossible to sit, sleep was erratic at best, and passing a bowel motion was preceded by more anxiety and dread than standing at the start of the running of the bulls in Pamplona.
I continued to work full-time throughout the treatment, finally taking a couple of weeks off work when I just couldn’t get out of bed anymore; I was not yet ready to reveal the details of my cancer diagnosis and treatment to anyone except a few very close friends and family. Behind this reticence was the arising of yet another, larger, bubble of shame associated with receiving the diagnosis of anal cancer. The shame was similar in nature to the shame I had experienced around being gay and contracting HIV described above, but it was much more intense. There was a sense of having failed at life in the most humiliating way possible.
During the months following the healing of my anal canal I got into the habit of performing a digital anal examination on myself — it’s easier and less gross than it sounds — about once a month. That way I could monitor how the area felt as it healed further, and I could be on the lookout for anything that might indicate local recurrence of the cancer without having to rely totally on the intermittent check-ups with my oncologist. At the nine month mark, in March 2014, I discovered a small nodule that told me the cancer was back. A biopsy confirmed my suspicions. I knew only too well that a recurrence of the cancer this soon after finishing the radiotherapy was not a good prognostic sign.
The classical medical advice for treating anal cancer that has recurred after primary chemoradiation is that major surgery — an abdominoperineal resection, an APR — is required. This procedure involves removing a block of tissue that includes the diseased anal canal, the surrounding perineal skin, the distal rectum, and the adjacent pelvic lymph nodes and muscles. To help visualize what this might look like, imagine taking a four-inch diameter apple corer, and using it to remove a cylinder of flesh centred on the anus, extending superiorly for about six inches, and you have some idea of what is involved.
Now, because this exact same cylinder of tissue had recently been heavily irradiated, it meant that things weren’t going to heal well after major surgery, so a flap of skin and muscle from my abdominal wall would be required to close the defect that would be left in my pelvis and perineum after the excision; a major surgical undertaking. The final step in the eight hour operation was fashioning a colostomy — permanent, not temporary — where the transected end of my lower colon was connected directly to the wall of my lower abdomen on the left side.
Ironically, in 1989 I had spent a term working as an intern with a general surgeon who had performed a number of APRs, so I was familiar with the operation and with colostomies. I was not happy about the prospect. A very strong ‘NO’ to this course of action arose in me initially, so I sought further opinions regarding the option of localized resection of the small recurrent tumour. The response, however, was universally that this was a very bad idea if I wanted to cure the cancer once and for all. After a couple of weeks of feeling more and more cornered into it, I reluctantly agreed to undergo the surgery.
The first week following the operation passed with little concerns, mostly thanks to my new bff — a morphine PCA (Patient-Controlled Analgesia) pump that I named Leroy. Once the reality-numbing drug was removed, however, I landed heavily into the sobering reality of my body's new patchwork configuration, and the enormity of the recovery that lay ahead of me. Surprisingly, it all felt OK and perfectly manageable.
I experienced a number of moderately serious postoperative complications, none of which particularly phased me as I’d seen them all before. Dealing with the colostomy from day one was, again quite unexpectedly, not a problem. All of my pre-surgery objections and concerns simply vanished in the face of the present-moment reality of it.
Whereas during the radiotherapy treatment it had felt like a red-hot poker was continually lodged in my anus for about six weeks, after the surgery it felt like someone had their fist — actually more like their whole arm — lodged where my anus used to be. For more than two months the pressure was quite extreme, and I'm here to tell you that it is not easy to get comfortable when this sensation is constantly present in one's body.
One day towards the end of my hospital stay, while still under the foggy influence of some much-needed oxycodone tablets, I had a vivid visual image that God was fisting me. Along with this disturbing image, my mind started to question: Why is this happening to me? Why am I going through this painful experience again? What is the lesson to be learned here? Then it struck me. That deeper layer of shame, the one that'd been beckoning to me for a few years now, and which had been triggered and intensified by the diagnosis of anal cancer, was now gone. The unavoidable reality following the surgery of having to deal with a colostomy and having extensive scarring all over my body would, under normal circumstances, have fed the shame even further, but instead it felt like it had literally been surgically excised from me along with the cancer.
I searched around for the shame again and again, but it was no longer a part of my experience. That's not to say it may not come back in the future, but at that moment it was absent for the first time in 35+ years. I also saw that what had kept this deepest layer of shame intact and in place for so long was my attachment to the physical body itself. Attachment to its appearance, attachment to the physical pleasure I had derived from it, and, most importantly, attachment to the physical body as the core of my identity. With this radical reconfiguring of my physical appearance — something that was absolutely real and completely undeniable — this deep attachment to my physical form had finally been dropped. I also saw that this attachment had been holding the fragments of my ego together, and it was now absent.
The good news is that it is not necessary to go through a diagnosis of cancer, or painful surgery, to have this realisation. It is available to anyone in any moment, and every event in one's life acts as a pointer to that which is deeper. All that is required is to fully open to whatever is appearing in one's experience, resisting nothing, to discover this truth.
The bottom line — no pun intended — is that I was obviously extremely stubborn, and the fact that I needed these extreme experiences to discover my true nature shows the tenacity with which I was holding onto my story of suffering.
As I waddled out of the hospital two weeks following the surgery, the now very familiar voice in my head spoke one more time.
"HAVE YOU GOT IT YET?"
OK, yes. I've got it now. Finally. Thanks . . .
I was diagnosed with locally advanced anal cancer in April 2013.