It is the spring of 2011. At the completion of your treatment for stage 3B anal cancer, your pain, burns, and opiate addiction are at their pinnacle. You transition to a new care team, the result of your employer changing insurance providers. While this will later result in a surprise five-figure bill that sets you on fire with rage, you are introduced to Dr. H., Dr. K., Dr. L., and Dr. E. They will be important to you, these fatherly healers who like you, care about you, and want the very best for you.
You are referred to Dr. H. by your stoic man of science and told he is the best. You wait to meet him while amid the second round of chemo and after being made to wait a VERY long time you are beginning to come unglued and tell your partner that you are leaving! He calmly suggests that you continue to wait. You’re already there, after all. Finally, it is your turn. He is wonderful and kind. He has a private practice that allows him to take as long as he wants with every patient. He puts you up on the familiar ass-over-teakettle table. You hold The Brick to keep it from sliding down and yanking on your port. He acknowledges how difficult this treatment is, particularly for a woman your age. He cannot examine you beyond the external because you are too burned. It would be impossibly painful. He explains how he will follow you surgically with biopsies and exams to ensure that you heal, and the cancer does not remain.
Dr. H. refers you to his trusted colleague, Dr. K. He is in an office of his own staffed with a kind, long-standing receptionist, and a head nurse that it his wife. He sparkles with crispness, intelligence, and compassion. At your first visit with him, you are given a variety of questionnaires. One of them has faces that go from a smile at number one to anguish at number ten. You circle the number ten anguish face. You do this not just because you are in so much pain, but because you are utterly terrified that you will not recover your sexual health. The next day a social worker calls you because of this number ten anguish face. You burst into tears and explain your terror about your sexual wellbeing. She suggests it be managed by your radiation oncology team. You sob that they don’t care about your sexual health, only about killing the cancer. She refers you to a specialty gynecologist, Dr. L., explaining that he is so beloved by his patients they drive from the eastern side of the state just to see him.
You arrive to see Dr. L. Anal cancer is rare. It is possible that even very experienced doctors have seen only a few cases, if any. He is surprised that you are turning up so close to the end of your treatment when your burns are at their worst. You provide the same explanation you did to the case worker who referred you and he immediately understands. He tells you he is working with a woman who was treated for the same type of cancer as you and he is trying to build her a vagina surgically. Because it is so painful to rehabilitate after pelvic radiation, she waited too long and her vagina atrophied, as radiated muscles do, and collapsed from the back making it impossible for her to have intercourse with her husband. Mm hm. You didn’t KNOW this could happen. But you FELT it. You intuit that you will not be helped with your sexual health unless you demand it. You will chase this sexual recovery for the better part of the next decade, seeing a cadre of specialists, none of whom has the whole picture, but all of whom contribute a piece to the puzzle.
The sensation of fiery razor blades continues for so long that you believe it will never resolve. You say this to Dr. K. He simply tells you that it will. You don’t believe him, but what is there to do but just keep trying to live. There are times when you sit down to poop and shake with the pain, putting your hand over your own mouth to stifle a scream. There is another unpleasant development. As the radiation atrophied your vagina, so did it your rectum and anus. The result? When you get the signal that you must poop, you have mere seconds to make it to the bathroom. Your brain fires to contract your muscles as all humans do to “hold it”, but your muscles have a half-hearted response. You are not unfamiliar with this issue. Gall bladder disease with subsequent dumping syndrome post removal, Crohn’s disease flares, and now a radiated bowel and butthole. Good luck not shitting your pants on the regular. You proceed to manage your life around this phenomenon, as you do to this very day.
At home, the pressure to hurry up and be ready to have sex is palpable. Prior to your diagnosis and treatment, you and your partner are well matched in libido and anatomy. Your libido is decimated along with your hormones and your anatomy is changed in ways that are surprising and amorphous. He approaches you for sex way before there could ever be intercourse. You are not ready. Your skin is still red from the burns, and everything is so tender. You center him and his needs instead of your own and proceed to have non-insertive sex. You do not know that you are no longer in a monogamous relationship. That when you are intimate during the five years your cancer can recur, you are potentially being exposed to strains of HPV not already known to your body. HPV reminds you of its ever-readiness by causing cervical dysplasia requiring a LEEP. You will also have both a needle and later an excisional breast biopsy when suspicious cells show up on MRI. You are angry about all of this. Dr. L. says, “Someone as nice as you should not have to deal with all this cancer!” You concur. Niceness aside, diseases of the body are a core human vulnerability connecting us to each other, our shared fragility and toughness, and our inevitable mortality.
You think you have experienced the worst of the pain. Then, you attempt to have intercourse with your partner. The pain is white hot. You disassociate and float away from your body. Your body is telling you it is not ready. It is telling you this is not how it will heal. It is telling you NO. You don’t listen. You do what trauma survivors often do; you try harder. You work harder. You vow to fix yourself. To solve the problem of your vagina. To make it what it was before. But for whom? You tell yourself it is what you want. But it is born of fear. Fear of not being a woman worthy. Worthy of love, acceptance, compassion. If you can’t perform sexually to the expectations of your partner, you are what you fear most. You are a disappointment.
You live in this cycle of trying to make your body behave as it once did. You want back what you had, or what you thought you had. You convince yourself that if you can just crack this code and rehab your vagina, everything will be okay. The days of sex being fun, joyful, spontaneous, and pleasurable fade far into the past. The relaxed skin-to-skin closeness that is one the best things about having an intimate partner disappears. Any closeness will likely lead to an erection that you will be expected to manage. You negotiate a frequency of every other day, as you desperately need a day in between to recover from the pain and trauma. He agrees to it, but there is constant low-grade tension. You know it is not enough. You are not enough. You live for the off days. They are like little mini vacations, but then the next day comes, and you will be expected to have sex. You carry the stress of it constantly. Declining on an on-day results in a coolness that feels punishing to you. You are stuck in grief. But you don’t know that. The anger, denial and bargaining stages of grief play whack-a-mole with you and keep you intensely focused on making yourself whole. You believe you will be whole if you can just be what you were before. That is not wholeness. That is self-hatred and self-denial. It is like an eternal flame that burns.
In your quest to grab a hold of the past and yank it back into existence, you will see a naturopath, fertility specialist, psychiatric nurse practitioner, uro-gynecologist, and pelvic rehabilitation practitioner. You will try hormone replacement, localized estrogen cream, vaginal dilators, 5% lidocaine to numb your vagina, and a litany of topical medications to combat the recurrent inflammation, irritation and low-grade infections that seem ever present. Your body continues to signal to you that the frequency and nature of the sex you are having is not for you. It tells you over and over. You can’t hear it.
You keep expecting intercourse to improve. Sometimes it does, but it is short-lived, the maintenance required is like a second job, and there is still a tremendous amount of pain. Your body has not been given a chance to heal and every time it is traumatized by intercourse, the healing that could have taken place is set back. Your brain tells you the opposite. That if you keep working on it, it will get better. You fear, if you are unable to have sex for some period, you will be left or betrayed or both. This fear courses like an underground river. You can faintly hear the rush of it in your subconscious. There is never an offer to take a break. There is never any reassurance that you are loved regardless of what is going on sexually. There is constant pressure to keep up this four times per week schedule. You finally identify that you are stuck in the grief process but can’t seem to find a way out. You bargain constantly. You are angry. You are in denial of your reality. You refuse to accept this body. This refusal causes immeasurable suffering. For the five years that you are on surveillance and going through the cycles of biopsies, scanning, and waiting, the good news is always overshadowed by the fact that you are not enough. Not good enough. Not what you were before. A woman, not quite worthy.
Finally, at the end of 2016, the infidelities in your relationship come to light in a humiliating social media post. Your partner smiling, with another woman, the hashtag reads “so in love”. And there it is. You are not enough. You will never be enough. It does not keep you from one more try. And it’s biggie.
A mere two months after discovering the betrayal, you buy property together and cohabitate. You see a therapist who suggests you disclose everything to each other and then move on. You follow this suggestion, and it is shock and awe. What you learn hurts more than the sexual infidelities. During these sessions, there is a negotiation of sexual frequency. Your partner, with a pained face, asks you for five days a week. He wants seven, twice on some days. The therapist supports him and goes as far as to ask if you can “help him out” on the off days. NO! You feel suffocated. Outnumbered. You are in a state of trauma when you agree to this. You have sex five days a week for the next year and then you break. You cry. You plead. You ask repeatedly, “What about me? Don’t I matter?” You are asking the right question, but of the wrong person. You don’t matter enough to yourself to stop this. So, you keep on at an adjusted rate of four times per week. On the off days, you are reminded, not so subtly, that you are not meeting his needs. Eighteen months later, this 14-year relationship that you valued so highly is over. It ends with you being told about your sexual shortfalls in blatant detail.
The next day, you have an appointment with the fourth and final healer, Dr. E. He has been managing your infections, inflammation and irritation and prescribes many things to help you, not the least of which is a 400 mg per week fluconazole protocol to address your life-long yeast sensitivity. At this appointment, he senses something and asks you a question that he has never asked before. He pushes away from the computer screen, drops his hands to his lap and asks, “How are you emotionally?” You become tearful and repeat the words said to you by your partner the day prior. As you hear yourself saying these words to Dr. E., you are filled with compassion for yourself. It bears repeating. You are filled with compassion for yourself. You return home and notify your partner, that you will never have any sexual contact with him ever again. It will take three months for the separation to be final, during which you will continue to live together, and you will have to hold your boundary several times. You do not betray yourself. You now answer your own plea, your own question. Yes, you matter.
It will be nearly 30 months before you have sex again with a partner. During this period of abstinence your body heals. The irritation and inflammation abate. There is no pain. There is no stress. There is no worrying. Your sexual life becomes yours and is filled with peace, happiness, a deepening connection to your sexual spirit and pleasure that rockets you into another dimension. In February of 2022 you meet a handsome, Turkish gentleman on the street in Malta. You spend time together, and it naturally flows into sex. It is magical and wonderful and unlike anything you have experienced before. Your bodies click like puzzle pieces. You have no self-consciousness. You communicate your needs clearly and without apology. It is fun, exciting, spontaneous. It is not transactional nor goal oriented. The connection is deep and whole. It is backed by love. You accept yourself unconditionally. You love yourself without contingency. You have compassion for yourself and all you’ve been through to arrive here. You no longer identify with the cancer. Your grief gives way to gratitude. You no longer identify as broken, in need of fixing. You are whole. You are free.
Thank you, Farrah. You saved my life. A precious life worth living. https://thefarrahfawcettfoundation.org