There is a moment in Fight Club, my favourite romantic comedy. You know the one. Chloe, a woman with terminal cancer, steps up to the podium. She is thin. Her hair gone, she wears a scarf on her head. Her cheekbones stand in sharp relief, likely from Cancer Anorexia Cachexia (I work in cancer so I know this stuff). She is a little sheepish at first but she composes herself and announces that she wants to get laid one last time. She has everything a prospective sexual partner would need to participate. She is considerate, she does not expect him to enjoy the experience, per se, so she provides the necessary inducements-her willingess, porn, lube, and drugs. After all, who would want to have sex with a dying woman. She is in this for her own pleasure, her own need, her own desire. She fights so hard to be seen for the woman she is as opposed to the neutered invalid. When you are sick, you are supposed to dedicate yourself to recovery, survival. You are supposed to be noble and unselfish in your suffering. Pleasure, sexual pleasure in particular, is frivolous.
I do not have cancer. I have a brain tumour. As someone who works in cancer the two are different but, in this instance, there are similarities. In this country we have started to treat cancer like a chronic disease, something that needs long-term monitoring and management. Most benign brain tumours do not recur, but pituitary adenomas recur in anywhere from 24-36% of patients. Mine came back in seven. They are more likely to recur if an adenoma remnant is seen on MRI post cessation of treatment. The larger the tumour the more likely there is to be a remnant, making recurrence more likely. I had one follow-up appointment with the surgeon and one follow-up appointment with the endocrinologist after my surgery. Neither scheduled an MRI. Had I known then what I know now, I would have asked. The surgeon was so confident he removed it all that he told me to go and never come back. Subsequent MRIs were done without contrast, rendering them useless.
Now that I am being treated for a recurring tumour it’s hit me that I have a chronic illness that will require constant monitoring and management. I can never be without health insurance and I can only hope that I don’t get dumped into a high-risk pool. I will continue to need blood tests and will likely go on medication again until menopause. Pituitary adenomas are known to cause infertility in women (part of that whole HPG axis). Drug therapy can be discontinued after menopause and prolactin levels can be allowed to continue to rise until such time as imaging is required to determine whether the adenoma has reached a clinically important size (1). That elevated prolactin levels have been associated with impaired sexual function (PMID:26902871), major depressive disorder (PMID:24182617), worsening of cognitive processes (PMID:26701376), reduced quality of sleep (PMID:25792374) and depression, all of which may persist after biochemical cure (PMID:25605584) is of little consequence. In short, if you are of an age where fertility is not part of the equation then you are supposed to live with it; coming from those who know precious little about what living with it means.
Five weeks in, nausea is still my constant companion. It doesn’t wake me in the middle of the night anymore. Now it hits the next day about two hours after I’ve eaten breakfast. Sometimes it lingers throughout the day, immune to the Chimes Ginger Chews my sister sent me. Sometimes it subsides just long enough that I can eat something and then it returns. I see my doctor in four weeks. She will see that I am not tolerating the medication as well as we had hoped. I have lost weight that I did not need or have to lose. As I write this I have been going back and forth about whether I should get something for lunch. Most days this is a difficult decision. Should I eat and feel sick or not eat and feel sick? There is no difference between the two. By the time I decide the cafeteria at work is often closed or whatever I brought with me has lost its appeal. We will discuss the side effects, how long before the next round of labwork, how I’m doing, whether I’m seeing anyone, when we’re going for ice cream or lunch. I will tell her that I haven’t spoken to my ex in nine months but I can still fill her in on the major details. I can tell her that I had five dates with a man who walked away because he feared intimacy. I can tell her that I celebrated my negative STD panel with sushi at a Chinese restaurant. I can also tell her that while I am no longer grieving the loss of my marriage, I am going back and forth between the anger and depression stages of grief in the loss of intimacy. Yep, I miss sex more than I miss the man. He was my first and only and I foolishly thought there would be others. Now, with my face sunken from constant nausea and sleepiness, I’m not so sure. I’m not sure there’s a point. I don’t see a point to dating when everything I eat makes me sick. It makes lunches and dinners difficult. And that saddens me now in a way that grieving the end of my marriage does not. I will not be able to stuff that emotion down sitting in the exam room getting my yearly.
The strange and vivid dreams continue. Last night, a woman I did not know tried to have sex with me. I wasn’t interested. She got bored, wished me well, and left. The night before I walked into a barnwood red house that had steep and narrow staircase that wound down in front of an enormous picture window. As I descended, I realised that the opening between the stairs and the ceiling was too small for me so I ascended the stairs, found another way out, and left. As I continued the tour of the neighbourhood I entered a large, clean, well-appointed house; well-appointed and silent. I was alone among the marble countertops, stainless appliances, fireplaces, dark hardwood floors, and stone walls. It was exciting and lonely. A few nights ago, I dreamed that I ran into my ex-husband and his girlfriend. He insisted of showing me his new houses. I say houses because they were two enormous Victorian manses connected by a third floor bridge. The houses were dark, as many of the period were, with large rooms, dark wood paneling, and dark wood floors. He was most impressed that he bought two houses and that the two were connected by a bridge, but the bridge was crumbling. I watched as bits of wood fell away and beams rotted. I bid them both good day walked up a hill to a large brick apartment complex buzzing with neighbours, walked in, and found myself an apartment. The houses struck me because I remember seeing something similar from the New York State Thruway as a little girl and being fascinated. Who lives there? Why a bridge connecting the two houses?
All this while I am trying to figure out how to get unstuck. I feel stuck in my dealings with my ex and even more stuck in my dealings with my mother. Dealing with my ex will be infinitely easier. We are no longer on speaking terms and last night I told two of my friends who are still on speaking terms with him that I no longer wanted to know what was going on in his life. They were most understanding and thought it was a good idea. They also expect him to fade from their lives once he moves away and the baby comes. Two weeks ago I found a stamp my ex bought while on vacation. I put it in my jewelry box to keep it safe while we moved and found it there while looking for a pair of earrings. I have decided to give it back. We have one more set of mutual friends. I will give the stamp to them and ask them to return it to him and tell him I wish him well. I will also tell them that I no longer wish to be informed of my ex’s comings and goings. Then I will delete some of the pictures I have of him, not all as some are good.
As for managing my mother in the short term, that has become managing my family in the short term. I found out that my sister is not my ally. When I tried to discuss managing our mother with her she countered with how our mother is dealing with depression, anxiety, and OCD. How I insist our mother change her behaviour without doing anything in return. As someone who is trying to manage her own mental illness I am aware of these things and take them seriously, but our mother is not managing her mental illness. While she is taking medication she is letting her mental illness manage her. She either cannot or will not seek therapy. She takes her frustrations out on our father and me. When I told my sister that I needed to rebuild my self-esteem she told me I should not base my self-esteem on the opinions of others. While this is true, we are talking about our parents and from whom do a person’s first impressions of himself or herself come from but parents. This is what my sister does. She plays the big sister who knows so much more than her little sister. She says things that are true but not helpful. She is Mary Bennet dispensing the obvious. And I have lost another confidante. I still don’t know what to do about our mother except shore myself up a little more in time for her return in the summer.
So much for my summer of love.