Oh the joys of having an autoimmune condition, while navigating a contentious divorce, and a new casual, but complicated, dating-like relationship. With the failure of Cimzia, Rituxan is on the horizon, and the guy I’ve been seeing has been amazing about it. Despite our casual status, he’s all hands on deck, taking me to the ER when I was too stubborn to go this past Thursday, and researching Rituxan to put my anxious mind at ease. Still the ER brought about some interesting conversations.
First off, there was the fact I go by my maiden name socially, because I’ve been done with my ex for a while, but still have to legally use my married last name for documentation. Nothing like the guy you’re seeing handing the nurse your military ID card with your dependent status, and of course, spouse’s name, and information, all right there, because you’er too high on pain killers to navigate your purse, and too in pain because you’re still in pain, to care.
Then there is the inevitable, “Any chance you’re pregnant?” question that comes up before they drug you and take x-rays. I’d already given my last period dat to the nurse in triage (sans the guy) but because I have an IUD, that date is always spotty (no pun intended) at best. Still, I’m definitely not pregnant. I wasn’t 20 days ago in the ER when they checked, and shocker I wasn’t when they ran my urine this time, too. Of course that doesn’t mean the guy didn’t have that moment of pale faced terror when the question was asked.
Definitely not. No chance at all. Yes I’m sure.
This hasn’t been the first time the subject has come up recently though. With Rituxan on the horizon, Cytoxan has been discussed if Rituxan fails. Moreover, some doctors have suggested waiting a year to get pregnant once Rituxan is stopped. So if it is successful, and fingers crossed it will be, I’ll still have to choreograph future pregnancy around it. At least I won’t ever be accused of getting pregnant to trap a guy?
My doctor has told me that Rituxan isn’t the drug of choice for my level of Behcet’s involvement, that it has shown promise, but that doctors have been using Cytoxan, the chemotherapy agent, for a longer period of time. Essentially, it’s efficacy is perceived to be greater because it has a longer track record. The dosages would mean that I could because infertile.
As I spilled my guts about all of this, the guy I’m casually seeing, I realized how absurd the interplay really is. We are casual, but he wants to know about my condition. We’re casual, but he wants to be there for me through my infusions. We’re casually, but in the ER we have that moment of, “Yes I promise there is no chance I’m pregnant,” and I know on some level he’s relieved because even if a girl tells you she has an IUD, and you believe her, there is a small part of you that is grateful that she really honestly is that convinced her birth control works.
What about the fertile part of it though? Can he possibly understand, in the context of us being casual, what my fertility means to me? I was married to a man who lost his ability to have children without the use of IVF, and I loved him. We fell apart when his continued infidelity, and straight up narcissistic sociopathy made it impossible for me to try and make it work. Plus I stopped loving him somewhere in the midst of realizing he was a narcissistic sociopath.
I stare down this path, with a drug that could work, could bring on a remission that allows me to live a more normal life, and I’m excited, and scared. I stare down that path with a man by my side who I call my friend, because he is, above all else, exactly that. I know that we’d be there for each other, regardless of the other aspects of our interaction (yes, I’m avoiding the word sexual relationship). We don’t say we’re friends-with-benefits, because that sort of feels like it devalues our friendship, and honestly, I’m okay with that.
If a time comes when what I want, and what he wants, means that we no longer have a sexual relationship, I hope we can find a way to preserve the friendship, because we truly have been there for each other through so much and when he says he can’t imagine life without me, I believe him. I feel the same for him, and while I may be more emotionally invested, I’ve backed away lately to view it in a different manner. Yes, I care about him, I care for him, but I also care about the life lessons he’s teaching me.
Still, fertility is as sensitive subject, and even with a friend, or casual relationship-type-thing, it’s hard to broach the topic. We ask our partner if they’re preventing pregnancy, but it’s usually a muddled mess, somewhere between, “condom?” and “the condom broke,” and the people who don’t bother asking at all, are those of us who genuinely want a conversation about preventing pregnancy, the options, and an honest answer. When I got my IUD, it was easy to tell this guy, “I have an IUD, I can’t get pregnant due to my medications,” and I left it at that. I didn’t think I’d end up having him absentmindedly make a statement one day where he said, “Someday when I have kids,” and have my reaction be to think about it, because he rarely does talk about the future. He worries about it, but he doesn’t plan it out, and he never talks in certainties.
For the first time, I’ve hit my own potential certainty, that being I may never have biological children. The thought of going through chemotherapy scares me, but the thought of being 30, mid-divorce, and losing my fertility, after leaving an infertile husband, is just sort of cruel karma. It’s like the universe put together two people who would end up unable to procreate, but they left each other, and now we’re slowly helping with population control.
That’s assuming I end up infertile, which the guy has tried to assure me won’t happen.
He like stop point out I’m a rarity, because I am, and that there aren’t a ton of articles in which there are a lot of research subjects, because Behcet’s patients are rare, and near-Behcet’s patients are rarer. He’s offered to write researchers on my behalf, playing up the drugs I’ve failed, the reasons why my case is complex, and the various statistics that make me a prime candidate if they can get my treatment funded. It’s all positive, which is what I need, and scientific, which is what I need even more, but there is something kind about it, too. Some women find chocolate sweet, but this does it for me.
Except maybe it shouldn’t. What if he falls for me? What if he realizes he wants more from me than casual and then they put me through chemotherapy? What if I can’t travel the way we both want to, and I can’t give him children? All of the future fears, the fears that usually plague him, the what-if-this-goes-wrong thinking that he’s so good at, comes tumbling out of my brain.
Because that’s chronic illness.
I could start Rituxan this week, and be in remission within 2-3 months, or it could fail miserably and I could be on chemo within the same amount of time. I can’t know, and so I approach the future with a wants vs. needs mindset. I’m so good at knowing what I want, while he hesitates because he’s afraid if he wants something, and changes his mind, people will be disappointed. The part that sucks is knowing what I want doesn’t stop me from worrying I’ll disappoint people, because I’m never sure if I can live up to the wants and needs of myself or others. My body is the unpredictable thing, and sadly it’s attached to me.
It’s hard trying to maintain a casual attitude when your life feels so damn serious. I do take things as they come. I don’t have expectations when it comes to he and I, simply because it doesn’t do anyone any good to expect things from someone just because they’ve done one thing, or offered to do another. Sometimes I worry I’m a drain on him, but I tell myself that he’s an adult, and arguments could be made both ways. Friends have insisted I’m limiting myself by not dating more guys, but I don’t have the energy, or desire. I like this one, and I’m fine with just him.
Still, the casual take-it-as-it-comes attitude get’s a little jostled when the doctor nonchalantly asks more than once if you’re sure you’re not pregnant.
Totally sure doc.
Then it gets jostled again when you’re forced to talk about the future even though the two of you, as a general rule, don’t. Yes, I want to have kids someday. Chemo is bad for a lot of reasons, but when you are told it’ll kill all of your eggs, probably, that’s kind of a heartbreaker.