Round 4 of Cytoxan, Disability, Learning to Cope

Life is complicated. Chronicle illness is complicated. Relationships are complicated. Divorces are complicated. All of these things mixed together, are extremely complicated. I’ve been trying to get divorced since August of 2015. I got a lawyer in October of 2015 to move things along. My impending legal bill alone is terrifying. Even if we go months without doing anything together via phone or email, it’s not like he isn’t working on the case. After the failure of round 2 because of stress, I’d had enough, and I pushed his lawyer to serve me by having my lawyer initiate the discussion directly with his lawyer.

My marriage was hell, for a variety of reasons, and I refuse to let the divorce continue to drag on. I recognize the attempt to continue the pattern of abuse and control, and I won’t allow myself to continue to be victimized. I have a lot of things on my plate, and after the issues I had in December with the flare and anxiety, things came into focus. My health is too fragile, and too important, to let anyone jeopardize. I am not going through chemotherapy because it’s enjoyable, I am doing it to save myself from potentially dying from complications of my Behcet’s disease.

This may seem melodramatic, but as treatment has progressed, there has been discussion amongst myself, my rheumatologist, and a variety of specialists. The level of disease activity I had prior to beginning treatment was staggering. I knew at the time I was sick, of course, because I was in the hospital. I lost the ability to walk. I repeatedly seized. Things couldn’t have been a whole lot worse at the time, but I didn’t really think a whole lot about what that meant long term. The immediate picture was more important than the long term outcome. Now that I’m doing a treatment aimed at hopefully putting me into remission,  the discussion about what that means has started to take place. I’ve had to accept limitations I didn’t want to accept, accept help I haven’t wanted to ask for, and accept that I can’t continue to let negative people impact my life. I can’t afford stress and anxiety, because remission is a whole lot harder to achieve and maintain, when you’re in a bad place emotionally.

That being said, remission for me apparently isn’t the most likely scenario, at least not a permanent remission. While many Behcet’s patients see a decrease in symptoms as they get older, and with treatments, patients like myself who have had severe disease, often have periods of relapse. This may not be my first round of Cytoxan, and even though I get a break after round six (they can only do six months at a time), I may find myself having another round at some point.

I don’t want it to come off as though I’ve given up hope, because I haven’t, I just understand the importance of being realistic. In addition to the Behcet’s, my neurologist has mentioned that I have autonomic neuropathy, the cause isn’t clear, and the full impact can’t be assessed until I’m done with Cytoxan. One positive to my high blood pressure is that this is potentially keeping me from experiencing super low blood pressure, as is common with the condition. On the flip side, I do have issues with my heart rate, dizziness, sweating, heat tolerance, etc.

This most recent round of Cytoxan was the worst feeling, but one of the better ones in terms of my numbers. I did go to the ER, but not by ambulance, and I didn’t have to stay overnight. Just got some IV fluids. I did have to call the guy to help me when I ended up throwing up in my apartment complex’s lobby restroom…but I did make it to the restroom, and my service dog in-trianing, did phenomenal at supporting me during the process. We were just going for a pre-bed walk, and he immediately became alert and glued to me as I started lagging. He helped me stay propped up, and pretty much refused to let the guy help me alone…insisting on staying at my side.

I have two more rounds. I don’t know where I’ll be living in three weeks, just that I have people who have graciously said the dogs and I are welcome to couch hop while I find a place, and save up the funds. I wasn’t prepared financially for Cytoxan. I figured I was fine because of disability and separation payments, but I hadn’t accounted for how much paid help I would need that my insurance wouldn’t cover. Now I know, and can plan that cushion into my future dwelling plans. Of course I also have credit card expenses to add to my monthly bill.

That brings me to the topic of disability. I asked my doctor to write a letter for my lawyer regarding what she felt was realistic in terms of my long-term disability situation. She had previously stated she was in support of me applying for permanent disability, but for some reason I hadn’t really thought much about what that actually meant. I had took it to mean that she foresaw my disability situation as lasting longer than short-term disability would allow for. Never did I actually think she’d state that I would be disabled for at least another 6-12 months, with my return to work only ever being part-time. I believe her actual wording was that she didn’t believe I would ever be able to work more than a part-time schedule due to recurrent relapses, and difficulty with fatigue.

I wish I could lie to myself and say that she was just being nice because my ex has made the divorce process such a nightmare, but she doesn’t lie about illnesses for any reason, and she definitely wouldn’t lie on a legal document. While she isn’t a fortune teller, and I could reasonably work full-time if I made sure to take care of myself, and rest, it did slap me a bit…and I needed it. I’ve been clinging to denial because it’s easier when I find treatment depressing. Sure I’m seeing the guy, but I’m not officially dating him, or anyone else, and there are moments when I lie to myself and I say that things will be categorically better once I’ve finished Cytoxan. The reality is I don’t know what will happen. I don’t know what symptoms will be controlled and what symptoms won’t be controlled. I don’t know if I will relapse and need more Cytoxan, or if I’ll have to suck it up and deal with long-term oral chemotherapy (somehow), despite my GI issues. Endoscopies and colonoscopies are still in my immediate future, I still need to have my neurological function examined, via prolonged EEG readings, and a sleep study, as well as consultations with neurology and cardiology for my combined symptoms related to what has been dubbed “autonomic neuropathy”.

The most eye-opening thing has been being forced to stare depression in the eyes. As someone who has had PTSD for a decade, I’ve become extremely good at living in disassociation. Like most people, I don’t enjoy bad feelings, but unlike most people, my brain can go on autopilot, and I don’t have to process those feelings. You may think that means I appear bubbly all of the time, but that would be a dead giveaway that something is wrong. Instead I appear somewhat cold and clinical, being overly analytical and logical, when others are happy, sad, and whatever else they feel. Part of the art of dissociation is realizing you have to give up all emotional extremes, positive or negative.

Well…Cytoxan (in my case) makes this impossible. In order to combat my crippling anxiety over the infusions themselves, and my body’s irritation at receiving IV steroids and nausea meds, I get IV Ativan. This round they actually forgot the Ativan, and as soon as they gave me Zofran and hooked me up to the steroids, I thought I was going to throw up. It was really weird because they hadn’t started anything else, and they couldn’t figure out why the Zofran would make me nauseas, but my body really hates IV anything. I wasn’t anxious, but I really didn’t want to throw up. Then they realized they hadn’t given the Ativan, and as soon as it was pushed, within a few minutes, I was fine.

The issue with my cocktail, however, is that I get loopy. Really loopy. I lose the ability to pretend I’m fine when I’m not fine…and I also get really emotional from the Cytoxan itself. The nurses have said that the drug can cause emotions to run wild, and that combined with the Lupron and the other pre and post infusion medications, it’s totally normal to become emotional. The thing is, I feel like I take it to another extreme. Since I’m not used to sitting with my feelings, and because I’m unable to do anything but sit, I go completely nuts. Usually I get home before I cry, and usually I don’t get emotional until the next day…but this time around I started to cry during the infusion.

So, the guy is sitting there with me, and we were going to play a boardgames, but he’d gone to get a sandwich and then had taking a short nap or something in his car (I can’t really remember), an I had dosed off in my chair, only waking up around the point when he came back. Now, he’d probably only been gone for half an hour, but somehow I got in my head that he’d been gone for an hour, and I don’t know if it was before or after he had mentioned he was going to go out that night, but I started sobbing. Now, let’s be clear, I was fine with him going out, and I was fine when he opted to go back to his place instead of come back to mine. I wanted to avoid him seeing me throw up if I threw up (which he ended up having to practically carry me from a public restroom a few days later when I pushed myself too hard…but anyhow…)

Yes, he was there, with me, and I’m bawling. I have no reason to cry. Nobody said or did anything to instigate me, and yet, I was sobbing. When asked what was wrong, I instinctively went to say, “nothing,” because I knew my tears were not logical, but instead I launched into a diatribe about my worthlessness. I started going on and on about how I was sick of being sick, and how it wasn’t fair that he had to be there with me when he could have been home getting work done, or doing something else fun. I started talking about having to schedule plans around appointments and infusion, and about losing my hair. My hair. I was crying because for the first time since shaving it, I was genuinely upset about it…and it has started growing back anyhow. Yes, that’s right folks, my hair growing somehow made me think about how long I wanted it to be, how long it would take to get there, and how horrible I felt with it being short. I also was upset about gaining weight, even though I needed to gain weight, because now I was worried about being some short haired fat girl.

What. The. Hell…

The guy and the nurse both assured me that it was the drugs causing this whirlwind of emotions, and that once I felt better I would emotionally feel better, too. It took almost a week, though. I’ve sat with a lot of the emotions that hit me that day, and the subsequent days, and I’ve realized that it’s okay for me to feel how I felt, even if the situations I was upset about didn’t warrant that level of emotion. All of the things I become upset over are valid. It does suck to be unable to work, to have to wear a mask in public, to miss out on events and get togethers, and to be forced to rely so heavily on friends. I am not a dependent person, and I’ve driven myself poor trying to pay for help so that the people I care about wouldn’t see just how sick I truly was. Now I’m realizing that the good people would have helped me if I’d asked, and they wouldn’t have considered it a burden to do so.

My past has created this guarded independent woman, who wants to love and be loved, but who doesn’t feel capable of being loved. My self-worth is disturbingly low, and I want to change that. I want to love myself, flaws and all, and to truly believe that I am lovable. I keep saying that I’ll work on it once I’m healthy, but seeing the disability letter has forced me to take a step back and reevaluate. Why wait until I’m healthy? My ailments don’t define me, even if they do change the way I experience life. Can’t I be sick, but lovable? I’ve been taught that it’s better to be alone when your health problems are the way mine are, because if you are with someone else, you become a burden…but why does that have to be the narrative I run with? Couldn’t I just as easily focus on the things I have to give instead of focusing on the things I have to take? Aren’t all relationships, romantic or otherwise, a combination of give and take?

Learning to cope is more than just learning to live with the physical limitations of my illnesses. I have to learn to cope with the emotional fallout from them as well. There is anger, depression, and anxiety. I had always assumed that having PTSD would mean I was able to handle the mental impact of my illnesses, but there is a huge difference between the way my PTSD symptoms hit me. With the PTSD I can recognize that my emotions are not rational in proportion when you compare how I feel with what is actually happening. With the emotions tied into my health, things are way more insidious. I don’t feel extremely angry or depressed or anxious, and so the emotions are often suppressed by me, unconsciously or consciously…which is a mistake. I need to own them, and handle them. This is important for my well being all the time, not just because I don’t want to end up sobbing at every infusion.

As I move towards homelessness, and couch surfing, I have to recognize that it could take time to find a place that works for my budget and my pups. I have to accept help from others without feeling as though I’m a huge burden. I have to stop feeling guilty about taking help. I know all of this, but I also know that I’m not wired of any of that. It will be work.

Step One: Breathe

Round 4 of Cytoxan, Disability, Learning to Cope