It is January of 2011. Six years earlier, you received a call from your mom. She tells you she has breast cancer. You both cry. It is now your turn to make this call. You can’t do anything other than blurt out, “I have cancer”. You both cry.
You tell a few close friends, your brother, and one colleague. You don’t disclose the type of cancer you have beyond this small group. It is the first question people ask. It is their way of gauging how bad it is and the likelihood you will die. You learn never to ask anyone this question. It is like touching a pregnant woman’s belly as if her pregnancy is for public consumption, just because it shows. It is now you that must contend with the invasion of privacy that is discussing your literal asshole. Your asshole is the last thing you want made public. You’d rather hand over your bank statements. You think of Farrah and how generous it was of her to share her dogged attempts to save her own life by searching out alternative treatments to the wretched protocols that had not changed since the 1980s and that were ultimately unsuccessful in stopping her stage four illness.
There are a variety of scans to suss out whether your cancer is localized, making you a surgical candidate. During a visit to the radiation oncologist, he is palpating your groin and says that inguinal node metastases are the most common. He is nearly done when you ask him if he feels the one that is about the size of a small marble. You see a slight change in his demeanor as he says, “where?” You take his hand and place it on what you assumed was a lymph node but did not know was unusual. You are relatively thin and just think you can feel various things because there isn’t a lot of flesh there. This marble node is an unwelcome discovery. Sometime later you are laying on a procedure table in a pleasant haze of fentanyl getting the marble biopsied. The two men conducting the biopsy chat about unrelated topics and lay their instruments on your chest like a tray. When they complete the procedure and walk away to allow you time to come out of the conscious sedation one of them says, “that’s too bad”. You know they are talking about you, but you don’t yet understand what it will mean to have a positive lymph node. The results come back that it is indeed malignant.
During your first visit to the radiation oncology doctor, and nurse who will be your case manager, you explain that you are trying to get pregnant. They instruct you not to get pregnant during radiation or the baby will be deformed. Their words. You are pondering the need to return to birth control and the nurse explains that you are not going to want to have sex during the treatment, that you will be burned. You and your partner both cringe. They do not tell you that your fertility will be gone forever. You read this in the fine print at your radiation mapping appointment. Words like “infertility and sexual dysfunction” jump off the lengthy medical release. You call the attending doctor over, who just so happened to have treated your grandmother’s brain metastasis some years earlier and you remember him. You deliver some version of “what is the meaning of this” and he says, “oh, didn’t anyone tell you?” No. No one told you. You were told you would need two rounds of chemotherapy and six weeks of radiation. You were not told what pelvic radiation does to the body of a human being. The body of a human woman. Unbeknownst to you, while you are being tattooed and mapped for radiation in a trauma haze from this most recent revelation, your partner goes out and requests a referral to a fertility clinic. When you return to your apartment you sit down and put your head down on the little desk you use for your work-from-home job in healthcare administration. He asks you if you’re okay. You respond that you are absolutely not okay.
You call the fertility clinic and explain your situation. You learn that due to your age, 40, you cannot preserve your eggs, only embryos. If you are going to preserve your fertility, you will have to work quickly. Radiation mapping for anal cancer takes some time and it also requires a slot to free up on the schedule for the big machine that will spin around you, delivering destruction to the cancer and the other sensitive skin, muscles and organs that will be collateral damage. You give yourself the shots and report dutifully for your transvaginal ultrasounds. You do this while working full time. You do this while grappling with having cancer. You do this while acting normal.
The timing is so close that your eggs are retrieved the day prior to your first day of chemotherapy and radiation. Your fertility doctor calls you to tell you that 17 eggs were retrieved and 14 were fertilized. She has chosen to preserve them at day one because in her words she does not want to send you into cancer treatment with no hope and if they are preserved at a later stage, a viable stage, they might all die. They are, after all, 40-year-old eggs.
On your first day of treatment, you will get chemo in the morning and then go to radiation in the afternoon, the same timeslot you will occupy for the next six weeks. When you meet your medical oncologist, the chemo doctor, he is dead behind the eyes. Almost zombie-like. While there you are confronted with the realities of chemotherapy. One drug will be infused in the port that has been installed in your chest that goes directly to your sub-clavicular artery diluting the medication and sending it on its mission. Additionally, there is a pump that will be attached to your port and worn for a total of 96 hours per round. You wait in the infusion room with the other cancer patients for your pump which you imagine to be small and modern. It is not. When it arrives the nurse almost happily pulls out a selection of fanny packs to hold what will heretofore be known as The Brick. “No”, you say. You will not wear a fanny pack. There must be another way. There isn’t. You select one and strap it around your waste. You immediately feel like a dog who has just gotten coned. The tube from The Brick to your chest must be fed under your clothes with special care not to catch it or tug on it. The Brick reminds you of its heinous existence every sixty seconds by saying “whoosh”. It is at this all-around horrible appointment that your paper chart is left open. You read “stage 3B” and “palliative care”. Just as you had done at radiation mapping you call this seemingly exhausted and disinterested doctor in and demand to know the meaning of this and get much the same response. No, no one told you that you are stage 3B, that there is no 3C before it jumps to stage four, the last and final stage, and that if this course of treatment doesn’t work, only palliative care is possible because you can’t treat this area of the body twice. It’s too damaging. Later, when you accusingly ask your case manager why your staging was not explained to you, she tells you that they routinely withhold it because it crushes people and takes away their hope. You require information. About your condition. About your body. About the illness in your body. Withholding information is unacceptable. You angrily assume they do it to protect themselves from having to experience patients’ emotions as they look death in the face earlier than expected.
Later that day, at radiation, you learn that after you climb upon the table, they will hold a towel over you as you pull your pants and underwear down. The indignities and humiliations feel grotesque and endless. They explain that the more material between you and the radiation, the more skin irritation there will be. There is a man who waits for treatment in the small waiting room at the same time as you. You cannot estimate his age because he always has a hoody pulled down around his face. He wears loose fitting sweatpants, and you determine that he is likely enduring a similar indignity. You never speak or acknowledge each other. He seems to want to disappear, and you don’t want to get in the way of that.
You work until 3 pm each day, until you can’t, and then you walk up the hill to your radiation appointment. You’ve been told that while you won’t want to be active, you will feel better if you are. If this is feeling better, it’s hard to imagine the alternative. You meet with your case manager each Friday. She tells you that you will be weighed each Friday. You tell her that you will not. You will weigh at home on your own scale at the best possible time and will report said weight. She tells you that you will bend over and spread your butt cheeks so that she can assess the progression of the burns that will develop momentously over the course of treatment. You tell her that you will not. That when there is something to see you will let her know. She tells you that you will need to eat the BRAT diet. You tell her that you will not. This maelstrom of scant communication has quickly turned you into your own advocate. You oversee your own body and will only do as you see fit, reducing your own suffering even in the smallest of ways.
The chemo does its work and takes its toll. The mucositis, mouth ulcers, that develop due to a lack of white cells are excruciating. The diarrhea is volcanic. The heartburn sets you on fire. It is painful to eat, and you cannot tolerate certain textures and tastes that were once pleasurable. You stay on a version of your weighed and measured food plan. Breakfast and lunch. No dinner. It is not possible. Your hair thins, but most of it stays giving you the appearance of normalcy. You can pass. Pass as someone who is not going through what you are going through. You awake one morning to swelling and pain in your jaw. It is on the same side as your chemo port and The Brick is whooshing and you are worried, you’re having an adverse reaction. You visit medical oncology and get a young woman who shrugs it off and suggests taking pain medication. But what is it, you wonder. She doesn’t know but doesn’t think it is anything to worry about. Huh? Later that day, your radiation oncologist, the tall broad-shouldered, quiet man of science visits you when you are laying on the radiation table. He has seen in your chart that you presented with pain and swelling earlier in the day, took it upon himself to do some research, and informs you it is a a swollen salivary gland, a rare side effect of the chemo drugs and acknowledges that it must be quite painful. This act of competence and kindness is a welcome relief in what feels like a cauldron of apathy. He reassures you it will go away on its own and it does.
There is an expensive subcutaneous injection that you will receive later in another health system that would have greatly reduced the mouth ulcers. But you are currently in a closed HMO, and this is not included in their standard of care. Instead, you are given morphine, Percocet, numbing mouth goop that you must be careful not to swallow and paste to put on the ulcers that does not do any good. You are a recovering person. You have been clean and sober since May 20th of 1987 save for a few courses of pain meds over the years. You become addicted to the time-release morphine pills and the 35 or so Percocet per day that you are taking on top of the morphine. You attempt to get off them in between courses of chemo and go immediately into withdrawal which causes you to cry throughout one of your radiation appointments. You must be careful not to move as the tears roll into your ears. Your case manager admonishes you for trying not to take them. They have the secondary effect of controlling the volcanic diarrhea and as the radiation treatments continue, the burns begin to form, so it must indeed be controlled. Thirdly, they dull the knife’s edge that slices through your mind and your spirit.
Just as you are experiencing a bit of relief after the first round of chemo it is time for the next one. The detached medical oncologist indicates that your immune system has been annihilated by the first round and that he will adjust the dose down a bit. You report for the infusion followed by the installation of The Brick. You are sitting in the waiting room, knowing what is to come. There is a woman who is there for her first treatment for breast cancer. She has dyed her hair purple in anticipation of having to shave it off. She is coping with her situation in an extroverted fashion. She is speaking loudly to her companion. She doesn’t stop. You understand this is a coping mechanism and it annoys you, nonetheless. You do not value talking over silence. During a quiet moment, she looks over at you. You are there with your hair and makeup done and what has become your uniform. Leggings easily pulled off and on for radiation and one of the empire-waist dresses in rotation to accommodate The Brick such that it is imperceptible except for its reliable chatter. She searches your eyes, and you see her fear. You quietly indicate that you are there for round two. She is visibly encouraged and responds that you look great. You thank her and gently inform her you have a different kind.
Again, you are passing for normal. It is something for which you are grateful. It is your hiding place. In some ways, it always has been. No matter how bad things have gotten for you in this human life, you soldier through, work harder, find solutions, and avoid the vulnerability that comes with asking for help. You tend to share your adversity only when you have found a way through. It is lonely. It is isolating. It is a hallmark of self-denial. It is all you know. The act of receiving and not giving back in kind is not part of your skillset. When you feel you have nothing to offer, you don’t dare ask for anything. To receive within this perceived imbalance, you would have to have compassion for yourself. Compassion, acceptance, and love for yourself that would leave you open to the miracle. The miracle of receiving much-needed help. The cards you receive from your beloved and wonderful friend are a bright spot in your days. And they require nothing of you. The care packages from your mom, the fuzzy socks from an old friend who senses that something is wrong. These are meaningful to you. You can receive these. A thank you will suffice.
It is right around this midway point when the burns begin to develop. It starts with heat in and around your anal area. There is a bolus placed over your marble node to draw the radiation toward the surface and kill the cancer in the marble. This area in your groin, the crease where your leg bends, is becoming increasingly irritated. And then the harbinger of doom, your vagina feels like it has been lit on fire. You email the tall man of science. He has you come in for an exam. As he puts the headlamp on you make a joke about spelunking. You finally get a chuckle out of this stoic, but gentle man. He tells you this is to be expected. Really?!? You tell him your vagina has done nothing to deserve this and request a small lead apron for it. A miniature version of what is used to protect you at the dentist. No. There will be no lead vagina apron.
By the time you reach the end of treatment you have open, weeping burns on your anus, vulva, and groin and the internal muscles, tissue and organs are also burned. Your pelvis and everything within it feels radioactive. The 45 or so pain pills per day that you take only dull the edge of it. You cannot imagine ever recovering from this. This is why they don’t tell you. They prefer the “everyone is different” preparation. If they told you, you might opt out, preferring to die. It is during this time that you are so sick and in so much pain that you feel you are most certainly going to die. You look around your small apartment and question your material things. What is the point of any of this stuff? It all seems so meaningless and stupid. You choose someone to take Esme in the event of your death. The only other person she seems to love as much as she loves you. Your little Esme waits patiently for you to be able to take her out. It is sometimes 1 pm when you have awakened and have enough morphine in your system to get out of bed. You are in a haze of pain and opiate addiction. You make a path between your bed and the bathroom putting goop on your burns. Back and forth. Back and forth. The bathroom becomes a chamber of horrors. Everything that comes out of you feels like fiery razor blades. You reach inside your vagina and find it seared together. You peel the skin apart and goop the inside of yourself. The radiation has caused swelling in your urethra. You can’t pee without pushing as hard as humanly possible, shaking with the effort, while it feels like your bladder is a balloon on the verge of popping. You are in this condition when you put on a dress and attend a wedding. This is what you do. You suit up and show up. Even when you think you can’t possibly, you do it anyway. This is not the badge of honor you rationalize. It is the denial of yourself in service to your idealized image. As long as you serve that image, the image of what you think you’re supposed to be, you cannot really serve your true self. The trauma. The grief. The loss. They beg to be witnessed, felt, acknowledged. Not doing so will only serve to delay the inevitable. They will wait patiently, though. They will wait to be pulled from the shelf without fear of expiration. These volumes will not only remain on the shelves of your life for years to come, they will also hold a narrative to which you will be hostage for the better part of a decade. The narrative of what your life coulda-woulda-shoulda been, if not for the cancer.