Cytoxan: Round 2

Chemo brain is a real thing. 

I had my second round of Cytoxan on Monday, December 18th. After the last round a few things happened that changed the treatment plan slightly. First off, I was having pretty significant symptoms. My doctor ordered blood work for two weeks after the first treatment, and discovered that my counts were lower than necessary for treatment, and in reality, just too low in general. Instead of increasing the dose for round 2, she decreased it. She also was able to convince my insurance to cover Lupron, a drug that may increase my chances of remaining fertile post-treatment. I’m honestly shocked my insurance was willing to cover it, but insanely grateful. There are no guarantees either way in terms of fertility and Cytoxan. If you look at the dosage and odds, statistically sterility is common, but you never know if it’ll be something you have to go through or not. I didn’t want to take that chance. As long as the hormones in the Lupron weren’t going to make the chemotherapy less effective, I was willing to do the shots once per month.

People have told me that wanting children of my own someday is selfish. What if the child is sick like me? With all the autoimmune disorders in my family, how could I possibly want to have a child who could be ill? If I want to be a parent badly, I should adopt. Don’t I worry my body can’t handle pregnancy?

To all of those people: I’ve thought about all of those things! It terrifies me that I could give life to a child who has to suffer through the things my family members and I have suffered through, but there is no guarantee that my child or children, will be sick, too. As for the suggestion I should adopt, I’d love to, but it’s expensive. My health issues preclude me from being a good candidate. I am terrified my body can’t support a pregnancy, but that’s why I’ve taken a billion and one precautions to prevent it from happening. If and when the time comes for me to start a family, it’ll be extremely coordinated. There are no surprises happening here, because I’m responsible enough to recognize the risks. (I also don’t want kids this moment. I want to get healthy, and kick around some things on my bucket list dammit!)

So, back to round one…the low blood counts were accompanied by epic bruising, and hair loss. It came out oddly, as if it were shedding evenly, but then again, a few spots were shedding worse than others. If I had an itch, and scathe it, I’d end up bursting the capillaries beneath that area of skin. I was tired, nauseas, and none of the food I wanted tasted right. My mouth peeled and bled. I was in enormous pain. It sucked.

Round 2 has, thus far, been similar, but more mild. The fatigue is definitely worse than the last time, but the others symptoms have come predictably in order, without being as severe as they were during round 1. The abdominal issues are constant, and they suck, but I’m just sort of cramming calories in when I can, and letting my body do the talking. The mistake I made during the first round, was thinking I could coerce my body into doing what my mind wanted to do. A trip to the ER made it clear I couldn’t push myself.

This isn’t how Cytoxan is for everyone! 

My dad went through Cytoxan therapy, and didn’t miss a day of work. Never threw up, never had side effects that side lined him the way I have. Some people end up in the hospital. That’s just how chemotherapy is. Everyone is going to have a different level of reaction. The amount I received, for my weight, should have been manageable. For whatever reason, my body couldn’t handle it, and things started to go haywire. It sucked, but at least we’ve founds something that can go after my immune system.

I live in California, where marijuana is now just flat out legal…though you need a medical card to buy it. Instead of trying to fight through the nausea with Zofran and Promethazine,  I decided to really give pot a chance this time around. I have never been so grateful for a plant in my entire life. While the prescriptions work, they take longer to get into my system, and they aren’t as effective as the marijuana is. It’s just a flat out fact. I need to find the right strain, because right now a lot of them make me sleepy, but the facts still stand.

Today I decided I could easily live in a studio apartment, even with both dogs. Having spent way too much time confined to my bedroom, it dawned on me that having a space slightly bigger than this, with a divider for the living area, would be ideal. Smaller living space = less distance to travel for medications, food, water, etc. I don’t know what is going to happen when the lease is up in a couple of months, but I’m keeping my eyes open. Moving 5 months into chemotherapy would most definitely suck…but my roommate doesn’t seem to be in love with having me as a roommate, and I can’t blame him.

I am not a bad roommate, I’m just a spoonie who is learning to listen to her body and respect its limitations. He’s not a bad roommate, but he’s very outgoing and extroverted, with an aversion to blood and illness in general. I thought we would mesh on a science level, and maybe we could have, but it didn’t work out. We’re basically two people who aren’t friends, but live in the same place. It would have been nice to have built a friendship, but we just didn’t.

Round #2…ugh. At least I slept through most of it. After a ton of drama courtesy of my ex, there was very little sleep the night before. I ended up getting some Ativan for nerves, and that combined with the other meds knocked me right out. It was absolutely glorious. I needed the sleep, and more importantly, I wasn’t hyperaware of the changes in my body. (I tend to get flustered when my heart rate fluctuates, or nausea creeps in, instead of just accepting it. I don’t mean to get flustered, it’s just an uncontrollable response.)

Today is Friday, and my mouth hurts. A lot. It’s dry and peeling, no matter how much I drink. I know it’s the skin turning over, but knowing why it’s happening don’t make it suck any less. It’s kind of a cruel chemo trick…the second your nausea starts to fade, and your hunger creeps in, your mouth will be too sore and gross for anything solid!

Cytoxan: Round 2

My Absence (Processing Bad News)

There is never an easy day when you have a chronic illness, but there are definitely days that are better and days that are worse. I had a glorious year and a half with very few noticeable symptoms. Then things went haywire. The issues were going to be resolved, I thought, following a trip to NYU. I would get news regarding the severity of my Behcet’s, as well as all of the treatment options available to me. Unfortunately the process was a nightmare. I was very weak, and had to take my walker with me. My dad was understandably shocked to see me with a walker, but I could walk without it if the distances were short enough. Of course that put a lot of strain on my muscles, but was worth it to avoid the stares of people around me.

The staff at NYU was amazing, and the doctor was, too. I was a nervous wreck and sent my dad to the waiting room because his own anxiety was playing off of mine. We both wanted good news, but because he has an autoimmune disorder, too, we were prepared for bad news as well. (We just never spoke about that possibility.) The doctor came in, reviewed my notes, and confirmed a few things. Regardless of what neurology says, it would appear that my seizures and neuropathy/ataxia and balance issues are related to Behcet’s. It isn’t Neuro-Behcet’s because I don’t have brain lesions. Instead, I likely have inflammation in and around my nerves. This causes the MS like symptoms I’ve had, and explains why some days are better than others. My non-specific abnormalities found on my endoscopy and colonoscopy are consistent with GI Behcet’s. Bad GI Behcet’s. All of the times the doctors said it almost looked like Crohn’s or colitis? That’s because GI Behcet’s manifests similarly. I had nonspecific inflammation of almost my entire GI tract in several of the scopes, and the patchy gastritis in my stomach indicates inflammation there, as well as prior ulcerations. I also had an ulcer in my rectum that was sent for biopsy, but the biopsy was inconclusive.

We went over my other symptoms, including the recent findings regarding uveitis. I told him that the symptoms of uveitis have happened before, but this was the first time I’d been specifically diagnosed and treated for it. With the number of systems involved, and the way my disease seemed determined to jump from one system to another, it was deemed a severe case of Behcet’s. I knew I had it bad, but I hadn’t really stopped to think about what it would mean for treatment. When you get into systemic involvement like I have, the treatment options become more systemic, too. The severity of the GI involvement places me in a position where oral medications are not that effective.

Two options emerged. The first was to try Remicade infusions, with Cell Cept orally. Even though low doses of Cell Cept had made me nauseas in the past, I hadn’t gotten that nauseated. It was considered a reasonable option. The second option, should this combination fail, was to go to Cytoxan, a chemotherapy drug. Obviously the former option would be preferably, even though the treatment timeline was two years. I left excited, but a bit worried. He had said that I likely had developed antibodies to the TNF blocker antibodies in Humira which is why it hadn’t worked, nor had the Cimzia. I’d likely done the same thing with the Rituxan, though it wasn’t really worth trying to test for the antibodies. The Remicade would work, or it wouldn’t.

On Monday, October 24th I finally met with GI here in California, and they gathered a list of tests they wanted done, including another scope. After that early morning appointment, I went upstairs in the hospital to have my infusion. I was relaxed when they took my vitals, a little hungry, and a really tired. They had difficulty finding a vein, and eventually gave up on saving me from having to go to the lab. They were worried if they kept trying to draw blood they’d lose the vein. I took two Tylenol, and a Benadryl, which was protocol, and settled into my comfy chair. The guy sharing the room took control of the TV and put the news on.

Things didn’t go as planned. Towards the end of the first half an hour I realized I felt funny. At first I thought maybe I was just dizzy from not eating, but I realized my heart felt kind of fluttery, and I had some aching that was radiating from the left to the right side of my chest. I had similar symptoms during my Rituxan infusions, but had never said anything except once, and they had just dialed back the rate. (It had been pretty far into the infusion, and on my second visit.) I told the nurse that I felt a little funny, and when she checked my vitals, she immediately stopped the infusion. My heart rate had gone from the high 70’s low 80’s, to 48 beats per minute. My blood pressure had also begun to drop, though not significantly. They called my doctor, and turned up the rate of my fluids. Eventually the aching when I took a deep breath stopped, but the fluttering came and went. My vitals were erratic. They’d check my heart rate and I’d be n the 70’s, but then 15 minutes later I’d be back into the 40’s. The vein blew, and the fluids started to infiltrate. One nurse said it was normal to have some pain at the IV site, but I knew it had blown because I saw the swelling. I was stupid and didn’t hit the call button, I just waited for my nurse to return.

IV fluids were discontinued, obviously, as soon as she realized the IV had blown. My doctor wanted me in the ER for an EKG immediately. I was wheeled down to the ER, bypassed the people waiting, and squared away in record time. The EKG was interesting because I’d had one just a few days before. Both had heart rates in the 70’s, but the one following my infusion showed that the elements of the EKG (essentially the process of the heart beating) were slower. I was still in sinus rhythm, but the findings were classic for an infusion reaction. For the next few hours I was monitored, and my heart kept up the annoying habit of randomly dropping into the 40’s and feeling like a butterfly. When it would go back up it would feel like I had just run a mile, but only for a few seconds. Eventually I was released, and defeated, I went home.

I knew that this was bad. With infusion reactions they usually discontinue the IV, treat the reaction, and begin again, at least that’s how it was in the Rituxan clinic. There was no talk of me continuing the Remicade, and as far as I can guess, I won’t be. They also refused to put me on Cell Cept, which the NYU specialist had said was critical for remission. My doctors here in California were never really on board with the Remicade/Cell Cept plan, because they felt Cytoxan was the best option for my constellation of symptoms. Knowing this, and knowing how fast my reaction came on, and that I’m not a good candidate for more steroids, I really only see one way forward treatment wise…chemotherapy. (The day following the infusion reaction I broke out in an itchy rash, and felt miserable, and that was with just half an hour of medication. It was clear that the drug and I did not get along.)

When I got back from NYU, my hair had begun falling out more and more. It was common following steroid tapers, and I was told that the Behcet’s likely was playing a role. Inflammation throughout my body, including my scalp, meant brittle hair, and hair just falling out in waves. I saw my hair stylist and had her cut off the sad ends of my hair, losing about six inches. I cried as I realized I couldn’t make a bun or ponytail with the remnants, which barely touched my shoulders. I had blue put in to cheer me up, and remind me that I was fighting for Behcet’s, a rare disorder, and something I refused to take me out.

Now, as I wait for November 2nd, when I will find out officially my next course of action, I have good days and bad days. I was asked at my first appointment after NYU, if I had a plan in place to freeze my eggs. The thought of it crushed me. My insurance didn’t cover it, and I didn’t have the money. Even if I sold my car and used what was left from my Go Fund Me, I would be short. There was no guarantee that I’d lose all of my eggs, but the risk is high. Before this my biggest worry was going bald, suddenly I didn’t care that I’d need wigs. I cared that I may never have children.

Moments like this make you see life with a clarity you wish you didn’t have. I’m seeing someone, it’s casual, but it works. We make each other happy, and that’s really all that matters. That being said, being happy has shown me what I do want in life. I want someone to come home to, someone to cuddle up with and watch shows. Someone who appreciates my introverted nature and isn’t judgmental of me for it. The problem is, I still want what I’ve always wanted, before my ex, before my current guy, before I was really dating. I always knew that I wanted to be a mother someday. I was, and am, terrified of letting my child down, but I know that the love I have to give would be enough to prevent failure.

Will I lose that dream? The rest of what I want from life has changed over the years. I’ve adapted so much of my life because of my illness. Trading my dreams of veterinary school, for laboratory sciences. Now I’m hoping for remission because I don’t always have the dexterity for that. I would love to be a physician’s assistant, but again, I would need to be able to be around sick people, so that is pretty much out, too. The lab work, I love it, and I’m hoping it’ll come back together for me. Driving, I miss that, I miss being able to blast music and head to the beach to clear my head. I never thought I would be in debt, but here I sit. As my divorce goes through, I wonder about marriage. I used to think it was necessary, for religious purposes, and because it was the next logical step. Now it’s less important to me. I wouldn’t push someone to get married, but I would get married if they wanted to. I’ve come to realize that what is put down on paper, legally, is less important in a relationship than the way you treat someone.

I do want someone, though. The guy I’m seeing, we have this weird thing going. It’s more than friends with benefits, but less than officially dating. It works for us, and that’s all that matters, but I constantly worry I’m holding him back. We really are best friends, but in terms of what we both want in life, we’re both still figuring it out. The small romantic part of my brain sometimes hopes that he’ll want me, but the rational part of me realizes I don’t bring a lot to the table. I’m a good person, with a kind heart, and a loyal friend, but as a partner in life, I don’t really have a lot going for me. Anyone who wants children? They’d automatically be undateable because I couldn’t give them a key component of what they were looking for in life.

The frustrating part is that is being taken from me, too.

I’m hoping my doctors will talk to my insurance and that something can be done to preserve my fertility. For a while I thought maybe I’d refuse treatment. My quality of life right now sucks, majorly, but I couldn’t handle a childless future. Then my flare decided to remind me why I was fighting. My stomach ulcers bled, the dizziness and nausea kicked into overdrive, and the Behcet’s headaches came back with a vengeance. Any ideas I had about giving up, were washed away.

One afternoon, after a bungled appointment (which is why I don’t find out until the 2nd what the game plan is), I couldn’t go home. I wandered around for almost an hour, then took a Lyft to the beach. I sobbed, watching the waves crash in, and the families on vacation enjoy the water. The guy (as he’s known since we don’t have titles haha), tried cheering me up when he found out I was blue. Eventually I went home, but only because I was cold. I tried to pull it together but then I had a nervous break down. I’m doing that in a separate blog.

My Absence (Processing Bad News)

Edit Undo Redo: EMG and OMG

 

So I had a whole blog typed up, but then fell asleep, because that’s my life lately…do something productive, nearly complete it, fall the asleep. The blog was about how the state of California thinks $200 is acceptable to live off of for me in terms of disability (that doesn’t even cover my trips to the doctor since I can’t drive), and how I hadn’t had a bowel movement in almost a full week. I also started Cell Cept (Mycophenalate), which the doctor had hoped would make me poop because it tends to give people diarrhea. (Oh, yay!) This past week was miserable, for oh-so-many glorious reasons.

First off, I kicked Monday off with an EMG. Since the first round of Rituxan they’ve noticed hyperactive reflexes. Now, I’ve had this issue before, but I didn’t really think anything of it. It was minor, and not a big deal. However, after the Rituxan, it was literally like whatever nerves activate for reflexes, were kicked into overdrive. There was a ton of initial concern after that first dose because I actually couldn’t walk, but it resolved, with just some numbness lingering in some of my fingers and toes. The reflexes stated hyperactive, however.

I’ve had an EMG before, and while it wasn’t a picnic, it wasn’t as painful as I’d read about online, so I wasn’t worried this time. Apparently I was overly optimistic. Before they even got to the part with the needles, I was in agony. The second they located some of the nerves on the inside of my calves, my legs jerked violently, with the right side being more impacted than the left (at least pain wise). The doctor actually had to hold my foot at one point because my leg was kicking itself off of the exam table. Then the needle portion came, and it was unpleasant until he reached one nerve, again, on the inner portion of my calve. My pain tolerance is high, but this was absolutely horrific. I started shouting to take the needle out, and he kept saying it was out, but it felt like it was still in, and the burning went all the way down, around my calve, and into my foot. He actually had to show me the needle to convince me it wasn’t in anymore. When he reached my feet, I tensed up mentally, figuring it would be worse, but I barely felt it, and finally when he activated the nerve to get a little jump out of the foot, it was mild, like the last time I had my EMG.

The doctor told me that the test results were borderline, which is the story of my life, but then he compared them to my prior EMG, and diagnosed mild neuropathy. At this point he doesn’t know what caused it, but I’m having an MRI on Monday. I don’t see the neurologist again until the 6th. I see my rheumatologist on Friday. I was in so much pain Monday, but rallied because I had plans with “the guy,” but he had to drive me the three blocks to his place, because the nerve was still tender for almost 2 days. Even now I’m still in pain, though I’ve noticed a general worsening neuropathy in the last 24-48 hours, which has me slightly concerned.

That’s the problem, they increased my Neurontin, which should in theory make neuropathy better, but I also started Cymbalta (for the depression caused by the Keppra) and then the Cell Cept. The MRI is to check for signs of Neuro-Behcet’s, which can be pretty brutal from what I’ve read (tendency to go after the brainstem) or MS.

Multiple Sclerosis has been on the table for several years, particularly because of intermittent issues with control over my legs. It should have been helped by the drugs I’m taking, though, not made worse. Of course, my body doesn’t always do as its told. My worry is that, because the Behcet’s didn’t go into remission, if I do have MS, it was stirred up by my treatment. You activate the immune system with these infusions, because you’re putting in antibodies. It’s great in theory, but potentially problematic if it doesn’t work. It didn’t work completely which is why I’m on the Cell Cept now. (I’d be on Azathioprine, but that stuff had me wrapped around my toilet with body aches and the chills. I couldn’t drink, or eat, and basically would have needed to be admitted to take it, and that’s not realistic for something you take daily.)

So now I’m on Cell Cept, and the other drugs, which has resulted in me being very sleepy in the mornings. I take my meds, and then fight to stay awake. I’m pretty much only coherent from 7pm-1 or 2am, the rest of the time I feel drunk or stoned, or I’m just flat out sleeping. I’m nauseas, a lot, and when I’m not nauseas I’m not hungry. The Zofran helps, but when it wears off it’s difficult to function. Anything I’ve eaten, I’m digesting slowly.

Today is bad because I actually had a bowel movement…for the first time…in 6 says. I’m so nauseas, and I’ve had more than one because that’s what happens when you literally don’t have ONE in almost a full week.

Depression is a thing. I mean, the medication takes a while to work, and it’s hard to be upbeat when your body feels like it’s abandoning you. I keep telling myself that my worth isn’t determined by one single thing. My illness impacts my life, but it doesn’t have to define me. Still, when you find yourself become a Netflix/Hulu/HBO Go/Amazon Prime aficionado…it’s terrifying. I also get worried because I want to work in a laboratory, badly, how can I do that with neuropathy? From what my doctor said, it shouldn’t be permanent, if it’s caused by the Rituxan, however, it also shouldn’t come and go and be bad like it is right now, if it was the Rituxan.

I just keep wondering where my life is going. It’s easier to tell people I don’t know what I want romantically, because I don’t know what I can give. Marriage isn’t as important to me as finding someone I love, who loves me back, and treats me well. I want someone who gets along with me, who shares my nerdy love, and at least has some similar TV show and movie preferences. I want kids. This is where things start to get complicated, of course. My neurologist quietly reacted to my reminder that I was in the middle of a divorce, and didn’t have kids, with a question about whether I planned on having them. I said not anytime soon, indicated I had an IUD, and assumed the question was relating to the medications I’m taking. His quiet reaction was to suggest I consider my family history, and my own health, because some autoimmune diseases get better during pregnancies and some get worse. You never know, and on top of it, there appears to be a strong level of heredity involved in terms of autoimmune disorders in my family.

Breathe in, breathe out, tell yourself that it doesn’t mean your life is over…

It’s more about wanting a somewhat normal life. As the guy has reminded me, nobody is fully normal, and fully healthy, but I do wish I had something easier to treat. I also wish that I didn’t look like an acne riddled teenager. People keep suggesting acne treatments, and I have to explain that it isn’t acne. Maybe steroid cream would help, but I’ve been to tired and too sick to get to the store and try it.

Having a chronic illness sometimes makes you feel lost. You feel like you are your illness, at least that’s been my experience. I know I’m a human being, but at the same time missing out on life starts to make me feel inhuman. My rheumatologist is thinking about sending me to the hospital affiliated with the medical school here, and it’s almost like I’m a case study at that point. Maybe I am…but I need to remember I am a human being, too.

Just breathe…

Edit Undo Redo: EMG and OMG

Steroids and Azathioprine (Imuran)

Ugh. That about sums up how I’m feeling about the current situation I find myself in. I have a mouth sore starting and it’s making me mad. The leg and face ulcers really shouldn’t have made me shocked to find my oral ulcers coming back to haunt me, but I guess I kept hoping it was all just my Behcet’s putting up a fight. Then the headache came this morning.

When I woke up, it was there, just like it has been, in the back of my head, with some added fun this time. My words didn’t make the most sense, and I was slurring my speech. Granted I’d only  gotten about 5.5 hours of sleep, and was de-caffeinated, I was still aware that I should be making more sense. I just shrugged it off. This is my brain on Behcet’s. Regardless of how my MRI’s have been in the past, and if my new MRI’s show no change, my brain goes rogue.

Today I got to see my primary care doctor and get some more Medrol injected (happy dance), which is going to allow me to skip the oral dose (shhhh don’t tell on me) tomorrow and the next day, while I’m out of town. Listen, I like the guy, and he does not need to smell methylprednisolone farts or worse, poops. Plus, I’d like to enjoy my mini vacation without constant gas and the fear of needing to urgently poop.

My rheumatologist was less thrilled with my, “let’s just throw steroids at me,” approach to handling the wait for the Rituxan to work. Testing me sometime in July seemed appropriate, but as time passes, and my symptoms worsen, even with periodic shots of steroids, I get her concern. Still, I know my treatment options from here on out, and they’re bleak as hell. Without even phoning in the blood test to rule out the gene for a rare type of genetic predisposition towards a weird kind of anemia, she phoned in Azathioprine (Imuran). Now, I’m not starting it on my trip, despite my primary care doctor’s suggestions I get it going, for a few reasons.

  1. I don’t want to throw up or have diarrhea, both potential side effects, and ones I always seem to get when I start new oral medications.
  2. I don’t want to end up in an ER out of town, without my medical records, ruining our trip.
  3. We’re finally going out of town, I am not starting a new really shitty drug on literally DAY ONE of that trip.
  4. Who tells their patient to drive 2+ hours away and then start a drug like Azathioprine when they haven’t been tested for the genetic mutation you’re supposed to check for prior to administration?

Right. Okay. We all agree? No Aza for me until I return. Then I’ll take it and throw up and go to the ER, and we can get onto the difficult task of the next step.

I thought we were talking about Cellcept, but it turns out we were talking about Cytoxan…in doses that would mean I’d lose my hair, probably throw up a lot, and also likely end up infertile, or nearly infertile. Yay! Sign me up. My insurance won’t cover egg harvesting, or freezing, not that my soon-to-be-ex-husband is going to rush to help figure out how to get it covered seeing as, you know, he’s about to my official ex…

Positives are I can totally dye my hair blue because it’s going to fall out anyhow…negatives include being bald. The guy dates the sick chick with the patience of a saint, but let’s be realistic…I’d need wigs, good wigs, because I don’t feel like being 30, single, and bald, is going to do wonders for me, especially when you consider I’ll have a port in my chest, too.

Oh, did I leave that part out?

I have shit veins, so they always go hands, but because of the nature of the drug, and frequency of delivery, I’d get a port if I wanted to stay at the center I was going to…because it’s more time efficient. Yeah, let’s just put a port in because I have difficult veins! For fucks sake can we try a little?

Mostly I don’t know how to tell the guy that this is the situation as it stands. He was so positive about the Rituxan, and I was, too. I still am, but I really don’t want to start the Azathioprine. He’s looked up a bunch of drugs, and options, and has even said I should go to NYU to seek out other treatment options because I have the gene mutation and maybe that bumps me up some research list. He’s so helpful, and wants so badly to be able to help me find a way to treat and achieve remission, it’s hard to explain to him that getting there may involve a lot of hard sacrifices.

He isn’t my boyfriend. We’re talking about harsh drugs. Potential hair loss. Body changes have already happened, and he’s been supportive, but these are even more drastic. At what point do I get friend-zoned? At what point does my illness become too much of a part of my life to warrant keeping me in too much of his life? Why must I be single and sick, when dealing with either is enough of a bother as it is?

My life has been turmoil filled from the moment I was born. Literally, I died during my birth for a bit, my heart sort of stopped, then started again…Nothing came easy, and I fought hard to just survive. To care for siblings, hell, to raise them, when I was a child myself. I weathered abuse, as a child and an adult. I fought, and I lived, but now I’m facing the prospect of having to lay back and recover. To be alive, but not really living my life. That’s why I’m taking a trip tomorrow, to see a show tape live. It’s why I am staying as long as I feel well up in LA so I can knock some things off my bucket list that are there. That’s why I’d like to try and get to San Francisco before the Aza kicks my ass, or I’m forced to start seriously considering Cytoxan.

Breathing in and out and smiling and joking, it comes easily, because it’s not always real. inside I’m screaming, crying, wanting to be held and told it’s all going to be okay, even if I don’t believe it. That’s the thing people need to understand that’s often odd about someone chronically ill. Sometime we will lash out when someone says it’ll all be okay, because it won’t, it really won’t. It will be okay some days, and other days it won’t be, but it will never all be okay. Still, on days when we get the worst news, sometimes we just need to be held, to cry, to scream, to ask why without getting an answer because there are no answers, and to be told that no matter what it will be okay. Not all of it, but some of it, and that’s all we really need.

Steroids and Azathioprine (Imuran)

Talking About Fertility When You’re Trying NOT To Get Pregnant

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.

Yup.

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.

Talking About Fertility When You’re Trying NOT To Get Pregnant