900 Days

900 Days

“I’ve locked my heart
I keep my feelings there
I have stocked my heart
Like an icy Frigidaire
For I need to care for no one
That’s why I’m through with love” –I’m Through With Love. (Kahn, Malneck, & Livingston)

It’s June. Two months since I was taken off the medication. Two months since the first house I bought sold. Six months into 2017. Three months since I found out the ex’s girlfriend was pregnant. Six months since my brain tumour diagnosis. Six months since my last date. Six months since my root canal. 30 months since I last had sex. I give up. I don’t care. I’m through. I’m finishing before I start. If anyone asks:

  • No, not seeing anyone.
  • No, I’m not online. When I was I had one date in two years. Since the divorce I’ve had one date in two years.    Odds are the same.
  • Lonely? Sometimes.
  • Don’t you miss sex? Even if I do, what difference does it make? I’m late to the party. I married late and I divorced late. 
  • But you’re still young. That may be, but I was just as alone when I was young.
  • But other women your age… Probably never had trouble attracting men.
  • I have a friend who’s in her 60s and… I have those friends too and they’re seeing men who are my age. They also never had trouble attracting men.
  • You can’t just give up. I have to. Otherwise, I will beat myself up as opposed to just shuffle along, alone.

I never learned how to flirt. For some reason, I think the banter found in screwball comedies is sexy. (Except Bringing Up Baby. Bringing Up Baby is stupid.) Banter is witty, sharp, smart. I’m pretty sure I am alone in this. In the old studio system, MGM, not knowing what to do with my lack of sex appeal, would have photographed me with a men’s swim team. Oh I’ve had male friends tell me that intelligence is sexy, but when pressed they all admit that it was something physical that attracted them to their partners. One admitted that it was his wife’s legs that first attracted his attention and her brains that kept it. With another it’s that she was tall. Still another liked her curves. Friends like you for your brains. Another one told me he couldn’t understand why I’m still single-you’re smart, you’re funny, you’re attractive, guys here must be weird. No, I’m a middle aged woman without a spray tan, curves, and barrel curls. My demographic is limited. At some point I will explain to him what it is to be me. Then again, why? I’m through explaining. My friend asked me, who talks to you in the street? Well, the homeless men of colour who sit on the stoop by the gym call me cinnamon. If that’s tYounger men who can actually keep up with the conversation say things like, it was nice talking to you or I appreciate the honesty, even when it’s honest to a fault. I’m guessing this is code for you’re cool. I don’t think I need to reiterate what it means to be the cool girl.

The nausea returned this week. It hit on Monday morning when I awoke and stayed through Tuesday afternoon. It hit again this morning and ebbs and flows. This corresponds with a seven-fold increase in my prolactin level. It’s back above normal. I have been off the medication for two months. I’m sure this is not unusual but I had hoped that it would stay normal for a little longer. Now my doctor is talking watchful waiting and we’re both hoping that I plateau. Otherwise, we will try an older ergot derivative that I was on when I had the first tumour-the drug that did nothing. I’m frightened of this prospect. This also confirms something that I have suspected since the diagnosis; conventional antidepressants did not work on my depression because my depression is caused my prolonged exposure to above-normal levels of prolactin. Maybe now my mother and sister will stop trying to prescribe herbal supplements and short courses of antidepressants.

Passing Over

Passing Over

Oh, doctor please, oh, doctor please
I think you’ve made a mistake
I’m fine and I don’t need people
You don’t understand all my choices – Marianne Faithfull, “Vagabond Ways

After two months of constant nausea, dizziness, sleepiness, vivid dreams, and almost every other gastrointestinal and neurological side-effect there is, my doctor has taken me off Cabergoline. I took my last dose on April 1st. I am no longer dizzy nor am I having vivid dreams involving my ex-husband. I’m no longer continually nauseous, but I am still nauseous after eating certain foods: yeast breads, fruits that are high in sugar, red meat, most desserts, Chime’s Ginger Chews. Through it all, I still managed to drag my sorry ass to work every day, pay my bills, go to the gym, help a dear friend begin the decluttering process, and prepare the Passover meal for 13 people. My friend’s husband, also a dear friend, told me I was a gem and that my ex doesn’t know what he’s lost. I told him that what he may or may not have lost hasn’t occurred to him. He has what he wants now, or will soon enough.

My ex emailed me a little over a week ago asking what I wanted to do with my safe deposit box.  We haven’t spoken to each other in nearly a year. The email exchange was short, almost terse. I had forgotten about it as, while I still had the key, I had long ago removed the contents. I told him it was fine to close it and I would be more than happy to get the key to him in whatever way he liked. He asked me to mail the key to an address in Holland, PA. I did so, along with a stamp he bought that I found in my jewelry box, certified mail with a return receipt. I thought about including a note wishing them well but realised that I had nothing to say. Nothing. I thought about burning the return receipt but decided I will hold on to it for a little bit, in case he tries to say it never arrived. And with that, we no longer have anything to discuss. The last dandelion seed has been carried aloft. At some point, maybe my next free weekend day, I will take the divorce decree from the refrigerator and put it in my safe deposit box. Maybe I’ll replace those blinds with the balloon shades I have. Maybe I’ll finish painting the bathroom.

In the meantime, another Pesach has come and gone. This is the first one without my ex. While we have been apart for nearly two years, he attended my friends’ first-night Seder last year. Last year, as a single man on the prowl, he took it upon himself to spank me as he skunked around me to get to the garbage can, like I was a girlfriend. This year, I dished out the Fesenjan unmolested. Not that this Pesach was uneventful. While setting up, my friend told me about how his cousin’s widow had looked up an old college friend. It turns out he had never forgotten her and they were seeing each other. How nice for her, I said. Then he asked if I had any old college flames. No, I told him, I had no college flames, no high school sweethearts, no childhood loves. He’s asked me variants on this question before and the answer is always the same, no. I think he genuinely forgets this, but sometimes I wonder if he asks because he thinks the answer will be different. Then his spouse came down the stairs and told me the same story and asked the same questions. He was more persistent and finally I went down into the kitchen and cried.

I pulled myself together just in time for my sister to arrive. Who proceeded to tell me that, once again, I was fixating on the one thing I didn’t have and to stop.  She cradled my face in her hands and told me I was a pretty girl and I would be so much prettier if I grew out my hair, even a little bit. With my sister, I am the one who needs to change. I am the one who needs to make the sacrifice. It was my mother all over again, only younger and more stable mentally. Then she made the mistake of saying that she had “been there and done that.” Yes, I said, that is true. But you were also 30. It’s very different when you’re over 45.

She assumes that because she is older, she is automatically wiser. She married at 20 and divorced at 30, yes, but being young and single (regardless of circumstances) and without children makes you a hot commodity. Add to the mix that she is Mormon, She put herself on an LDS dating site and she had to fight them off with a stick; she fought off a lot of patriarchal cretins and philistines, it’s true, but she went to visit one in Utah. She also met the man who is now her husband. Married men fell for my sister. She told me how one such man was “besotted with her”. What’s that like, I asked. No man has ever been besotted with me and I doubt any man ever will. That’s just how it is for some of us and no matter how many times we have to explain (which we do as we live in a world where coupled is the goal and the norm), typical people just don’t understand. It’s not that we’re oblivious to the attentions of other people, we are acutely aware. What bothers me more is the puritanical attitude she has towards love and sex and affection. That I am supposed to deny the flesh and move on with life. That the needs of the body are nothing to the needs of the soul. These are primal needs to be overcome. A friend of mine put it into perspective when he said, No, these are basic human needs not things to be conquered or overcome.

At the Seder I was on the end so I could get up and check on food as needed and serve when ready. My friend was to my left and his first cousin once removed was on my right. First cousin and I sat quietly for minute or two when I said, you may not remember but we’ve met before. He looked up from his plate.

-We have. When?
-Their 30th anniversary party.
-That’s right, he said. I remember.

I also told him that I was sorry to hear about his father, who had passed away unexpectedly. He said he had been trying to process it rationally but was finding it hard. I said, my marriage feel apart two years ago. Some things cannot be processed rationally. Sometimes there is no why. Much like the anniversary party, we talked the rest of the evening. Occasionally during the Seder he would say things that were just loud enough for me to hear. His nervousness at reading Hebrew. Things like when my sister jumped up to help me serve he said very softly, you are on the other side of the table. Sit down. Everything is under control. I told her to sit down. That she was a guest. Then I told him she tends to need to be the big sister. At one point I while everyone was eating he said, Eat. You’ve done enough. It’s time for you to eat. During the Seder he ran his fingers along the embossed edge of his plate. When presented with a bowl of leeks he ran his fingers over my hands before taking the bowl. It felt like comfort but it was probably nothing.

-Do you want to exchange contact information, he asked?
-Are you averse?
-No.

And with that he is in my phone and I am in his. As he left with his friend he turned to me and said, I really enjoyed talking to you. And I you, I said. And off into the wee hours of the morning they went. I do not expect to hear from him. I just don’t. I will not get my hopes up. It’s best if I don’t. You see, in three years he’s gone from being cute, geeky, and prone to occasional outbursts along the lines of, why do people say where you at? What’s wrong with where are you? to handsome, thoughtful, and intelligent. After the initial meeting he told my friends how much he enjoyed talking to me, how he liked mature women. Of course, there are mature women and there’s getting involved with a 47 year old woman. But there isn’t going to be any involvement because I don’t expect to hear from him. All this raises some interesting questions. If I have your contact information because you asked me for mine, can I contact you first? Why ask for my contact information, if you’re not going to contact me? Why am I bothering, since I’m not going to hear from him? Not getting my hopes up.

And so another year goes by. A year ago I started writing. Two years ago I filed for divorce.

It’s Drug Therapy, Not Chemo.

It’s Drug Therapy, Not Chemo.

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.

1 Snyder, PL. Management of Hyperprolactinemia. UpToDate, Post TW, UpToDate, Waltham, MA, 2016.

Drusilla! My head, please.

Drusilla! My head, please.

Caligula is watching his pregnant sister Drusilla sleep. Drusilla is his constant companion. She soothes him when he has his headaches. She plays the goddess to his god. She is pregnant by him, as it happens. He wonders aloud can the child of Zeus be greater than Zeus? Will his child be greater than he? It’s a question all prospective parents ask themselves at some point, I shouldn’t wonder. But Caligula is no ordinary prospective parents and his question is answered with bloody certainty.

Four weeks ago I received confirmation that I have another brain tumour. Yes, that’s right, another. This is my second in nine years. The first was surgically removed in 2009. There are two medications specifically for the treatment of this kind of tumour. Bromocriptine is one and Cabergoline is the other. When the first tumour was diagnosed I was given Bromocriptine and after an uneventful course the tumour was removed surgically. I say uneventful because, in my case, the medication did not work at all. (This is not unusual. My body does not respond to medical interventions designed to shrink benign masses.) My prolactin did not go down, the tumour did not shrink, and it was too large to risk leaving in place in hope that another medication would work. Both drugs are dopamine agonists, which means they mimic the effects of dopamine without actually being converted into dopamine. Both drugs are also used to treat Parkinson’s, except that the dose is significantly larger. Both drugs are also ergot derivatives. Yes, that ergot; the fungus that grows on rye and other cereal grains that can cause ergotism in humans. What’s ergotism? I’m so glad you asked. Ergotism is ergot poisoning, plain and simple. Symptoms include: convulsions, diarrhea, mania, psychosis, headaches, nausea, vomiting, and hallucinations. In the 1970s Linnda R. Caporael, a professor at Rensselaer,  posited that ergot poisoning was the basis of the bewitchment at Salem that lead to the witch trials.

Three weeks ago I started taking Cabergoline. I take a half pill twice a week. My doctor and I discussed this at length. This is a very effective medication that most patients tolerate very well. Most report minimal to no side effects. In theory, this is such a low dose that my side effects should be minimal, if I have any at all. Well, I am having side effects.

  • Abdominal pain (7% of patients).
  • Nausea (16%-34% of patients) is my constant companion. It sets in about two hours after I eat, regardless of what I eat. The only food that does not make me sick? Peanut butter cups.
  • Dizziness (9%-17% of patients). No fast movements for me for a while.
  • Fatigue (5%-10% of patients). I am a zombie most of the day and there is not enough caffeine in the world.
  • Depression (5% of patients). It’s strange. I can’t tell if the drug is making my existing depression worse or whether dealing with the other side effects is making my depression worse. It’s not like I’m more depressed. It’s like everything is muffled.

I also can’t drink until this is over. Alcohol enhances the effect of the medication, so I must abstain until either this ends or I get the ok from the doctor. Trust me when I say when one gets word that one has a recurrence of a brain tumour one might want to indulge in an adult beverate.

I am also having very vivid dreams, several of them about my ex-husband. In the first time, we were living in a studio apartment across from The Flatiron Building. I kept telling him he had to get a job. In the second dream he was on the periphery, bobbing and weaving like he did, like his father did before him. Last night, I was talking to one of my personal heroes, Lou Reed, in a freight elevator and when I awoke the strains of Busload of Faith were still in my head.

You can’t depend on your family
You can’t depend on your friends
You can’t depend on a beginning
You can’t depend on an end

You can’t depend on intelligence
Ooh, you can’t depend on God
You can only depend on one thing
You need a busload of faith to get by, watch, baby

Busload of faith to get by
Busload of faith to get by
Busload of faith to get by
You need a busload of faith to get by

I’m still processing, I guess. I have a lot to process. I have decided that with this tumour, and especially with these side effects, that I need to be selfish. It’s a matter of survival.