Hello Remission!

On Monday, April 17th, I had my sixth and final round of Cytoxan. It almost didn’t happen.

When I went in, they did the standard laboratory work, and I was a little worried that my counts would be off. I’d been feeling rundown prior to the infusion, which wasn’t usually the case. Sure enough, the nurses returned and informed me that my potassium levels were low. This was a big concern for me because during one round of chemo, I’d had low potassium and calcium levels, which led to a massive seizure, and a night in the hospital. It should be noted that I despise bananas. My doctor cleared me for the infusion, but ordered two potassium pills to be taken prior to the infusion. She was coming in anyhow that day to discuss plans for future treatment.

So, potassium down the hatch, and then I did something idiotic…I ate during my infusion.

I don’t get nauseas during the infusion, or after, because of the glorious medications I receive. I do, however, develop an aversion to whatever I’m eating during the infusion (or drinking). This has caused me disgust at peppermint after the first round, and a lingering desire to only eat sweets after eating chips during that first round, too. Long story short…I’ve developed a sweet tooth. I stupidly ate Sour Patch Kids, which I have grown to love despite previously hating them…and my “friend” had recently purchased Swedish Fish scented vape juice just a day before. I thought it smelled wonderful.

Now? Nope.

This past week I felt like death rolled over and wrapped in horse manure. I’m staying with my “friend,” and I don’t really remember much from the first few days. I knew my potassium was still low because of the muscle twitching and pain, but I was too queasy to give a shit. I stuffed my face with potatoes even though I really didn’t want them, and then gagged whenever my “friend” would use his vape. Even now, with the nausea nearly gone, the scent of that Swedish Fish vape oil, is just too much.

Remission? My doctor seems to think so, though I guess it’s important to note that I will always have Behcet’s. I have this urge to go out, find a job, do everything a healthy person would do, but I just can’t. I’ve even pushed myself too fast already, with walks, and the dog park, and payed via sheer exhaustion, and dizzy spells. I will be taking Cell Cept, which is still a pretty strong immune suppressing drug. I’d thought remission would mean no more drugs, but apparently that isn’t quite how this thing works. I think a part of knew there would be maintenance medications, but you always want to hope that you can be “normal,” whatever that is…

My neurological issues are a whole different situation. I still have and seizures, issues with heat, muscle weakness, and tremors. My heart rate and blood pressure make no sense what so ever…which is why my neurologist is confident about his diagnosis of autonomic neuropathy. It was a blow to be told I had a form of dysautonomia, especially since diagnosis of autonomic neuropathy is based a lot on symptoms, instead of laboratory analysis.

When you’ve spent your entire adult life, and much of your childhood, searching for answers, you expect the answers to have some tangible legitimacy to them.

Of course, my heart rate fluctuations alone have given doctors pause for quite some time. In the hospital they thought the machinery was malfunctioning, because my heart rate would drop into the mid-thirties while I was asleep, and them soar to 160 when I sat up. Welcome to dysautonomia, can I take your order? 

The reality is that many Behcet’s patients suffer from some form of dysautonomia, though from what I’ve read there doesn’t appear to be a clear reason for why this happens. There aren’t a ton of us Behcet’s patients, which makes it hard to study comorbidity scenarios…but still.

Where does this leave me? I will likely have to take seizure control medications my entire life. This means I will also require antidepressants, since I have issues with depression because of the high dose anticonvulsants. If I can keep my Behcet’s in remission, I can hopefully wean off of the nausea medications, and have more of an ability to tolerate medications by mouth. I’ve already put on 40 pounds, and would love to drop some of that weight. It is hard to see my body change so drastically, but I’m grateful that I am capable of digestion again. That being said, I will also still deal with motility issues because of the dysautonomia, and because of my limited diet and hunger during my serious Behcet’s issues. I haven’t had any issues with my balance and coordination, though I do still have hyperactive reflexes. This, I’ve been told, is related to the autonomic neuropathy, which I’ll be investigating with my neurologist over the next several months. I’m also a new and proud supporter of medical marijuana. It has saved me more times than I can count in the last few months, and particularly during this last round of chemo. Without it, I’m not sure I’d have lasted the full six months.

My divorce still isn’t finalized, because my ex is controlling. It bothers me that we’re still legally married, and that I have my married name. It doesn’t bother me that he’s trying to keep control by dragging out the divorce. I am happy, and focused on my life, and he’s not able to hurt me any longer.

His words still echo in my mind though, that nobody will ever love a sick girl like me. What if that’s true? What if I’m destined to be alone like my father? Sure, he has friends, and I’m sure he dates, but he won’t open up to anyone, largely because of his illness. He’s told me that he’s better off alone, since he’s sick, and that could be a burden. I don’t think he realized I was listening when he said it to me, and he definitely didn’t know that I would one day develop my own serious health issues.

I’m in this odd place. I know what I want in terms of a career and a family, but I don’t know how to get there. How can I have children with my health the way it is? Who would want to have children with me? Will anyone love me enough to see past my health issues? What if my dream career isn’t fully possible with my health limitations?

You know you can adapt so much of the world to fit your abilities, but you also hesitate to ask for help with adaptation, because you want to be seen as equal to those around you. I want to be loved for who I am. I want to be seen as a human being first and foremost. I know that my disabilities are a part of who I am, but I don’t want that to be the first thing others notice about me.

There are times when I know I would need a wheelchair to do certain things I’d love to do. Take walking around Comic Con festivities. I know that the heat will break me down. I know that I would be spent by the time I walked from my apartment to the waterfront. If I had a wheelchair, I could take the stress out of the mix, assuming I had the strength to propel myself in the chair (or if I had a power chair). Still, who is going to look at me, in a wheelchair, and think, “That right there is girlfriend material!”

Sometimes I let myself wonder if my “friend” could be more, but then I take a step back, and evaluate the situation. He’s an amazing guy, with drive, and ambition. He’s attractive, kind, and comes from a good family. There is probably a reason I’ve been thoroughly friend-zoned, and it’s more than him not knowing what he wants. We all question where we’re going in life. but if we see someone who feels like they fit into the equation, we know. I don’t fit, and it’s taken me a while to accept that. So while this is fun, and a big part of me wants it to go somewhere, I’ve accepted the reality that it won’t. Guys like him don’t settle for girls like me, and no, that isn’t depression or anxiety talking. Like I said, I’ve made my peace with it.

I do want to be loved though. As much as love terrifies me, I want it. So I guess I’ll just keep fighting my illnesses, and celebrating the victories. As soon as I move into my new apartment, I’m having a post-chemo celebration. I want to have a major victory dance over the end of this chapter of my life. Eventually I’m going to head to Vegas to see one of my favorite DJ groups perform.

I’m going to live life.

Hello Remission!

Round 5: Cytoxan … My Body is Pissed

I get anxious before everyone round of Cytoxan, and there isn’t anything I can do about it. Think about having the flu, or a stomach bug…now imagine you knew it was coming, and that there was nothing you could do to prevent it. You’d be anxious. I promise you’d be anxious.

So the guy agreed to come with me this time, and a friend came with me, too, which definitely made me slightly less focused on the impending misery. This time they did give me the Ativan, which helped, but I pushed myself a bit. Having a friend in town, I wanted to go eat after chemotherapy. I kept everything down, but I was just so tired. Then I woke up the next day, an I was nauseas. This pissed me off because usually I have 24 hours before the nausea kicks in.

My infusion was on the 16th, I spent the 17th and 18th miserable. Now it’s the 19th, and I’m even more nauseas. It makes me angry, because I need to drink water to combat the nausea, but I can’t drink, because I’m so nauseas. The guy has been beyond helpful. I’m crashing with him while I apartment hunt, though I’m not planning on staying here exclusively. He’s kind, and I don’t ever want to take advantage of his kindness. He’s heading out of town for a few days, then he’ll be back, then gone again for a business trip. I’m trying to plan a visit to another friend, and day trips, but my bod is pissed.

Being forced to move during chemotherapy was a major hurdle. The guy and a few neighbors helped me lao up a U-Haul, and the guy and I unloaded it into a storage unit. My anxiety was through the roof during the entire process. I kept worrying that having me in his space would drive him nuts, but thus far it’s been okay. I’m really not a difficult person to have around, minus the dogs and the chemo induced comatose mood. Still, the anxiety existed and made going into this round a bit more aggravating.

I had a seizure Monday, and then chemo on Thursday. In the ER after the seizure, the doctor discussed my autonomic neuropathy, and the potential link between that condition, and my seizures. The day of the seizure I hadn’t had anything to eat or drink, and was exhausted from lack of sleep. I always just assumed that seizures could come up from that alone, but apparently the thought process of my neurologist is that these things are tweaking the autonomic neuropathy. The chemotherapy can also aggravate it. My primary care doctor refused to treat my blood pressure because having it be high is preferable. Medicating me could result in dangerously low pressures, which has happened before. My low pulse rate at night also makes over-medicating me likely, and dangerous.

Today, I’m way too nauseas to function. I just hope I can drink some water, eat some Italian ices, and skip to the next set of symptoms. I have discovered the wonders of edible marijuana, but the taste is rough on me. Right now it’s a circle of zofran, phenergan, and marijuana.

Round 5: Cytoxan … My Body is Pissed

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

Cytoxan Round #3

Ugh. Ouch. Gurgle. Noooo.

That about sums it up. The process went really well, I only had to get stuck twice, but they did increase the dose. I was pleased to have manageable side effects during, but immediately afterwards I felt gross. I had a fever of 101, which I usually am around 97.3 (which was where I was before the infusion.) I knew I had inflammation issues, but they gave me steroids so I thought I’d feel better. Nope. My bones hurt. Yeah, my joints hurt, but literally, the BONES in and around all of my joints are just horribly aching. I’m dizzy. Now, several hours later, I’m definitely a little nauseas. Thankfully I ate when I cam home, so if I can keep it down, I won’t ruin the foods for myself forever.

I’d rather have pain, than nausea, so I am grateful in a sense, I just hadn’t thought I’d have the choice to trade…or that the trade would be so debilitating. It feels like my joints are falling apart, and the bones are just shattering to bits. That’s it, in a nutshell.

My pre-dose drugs are a bit different than the average bear, as are my during and post-dose drugs, but that’s because my intestines suck, and I can’t stay hydrated to LITERALLY save my life. I get 500mL before, then 1L during the infusion (they piggy back the meds with the fluids. before I get the Cytoxan I get Zofran for nausea, and Decadron (the steroid). I’ve been told varying things about why I get the steroids, but ultimately they help me with inflammation, and because I do have extensive drug allergies, putting that in my system is kind of a “better safe than sorry,” thing.

The one drug I get that other people don’t usually get in a pre-dose, is Ativan. Listen, I try to be tough, but chemotherapy scares the living crap out of me. I don’t enjoy any aspect of it. The first dose made me feel dizzy and nauseas pretty rapidly, and during the infusion no less, so I was sort of done after that. I’d gotten Ativan for my muscles to stop twitching (disease side effect) and it worked, so then they opted to keep it in my regimen for anxiety. They also added promethazine at the end of my infusion, so I could have that in my bloodstream for my short ride home. Hey, anything that allows me to drink more fluids, is a win.

This particular drug combination makes me sleepy. This is ideal. I want to sleep. I don’t want to think about what the drug is doing in my body, what I’m missing by going through this process in terms of school, a social life, and just being who I want tone, and I definitely, DEFINITELY, don’t want to feel any of the horrible side effects I tend to have with these meds.

Which brings me to a realization I just literally made with the last statement…side effects. Steroids tend to cause deep bone  pain for me. Some more than others, but it is an issue. Hopefully this will fade instead of worsen, though I have had intermittent bone pain 10-14 days after each infusion, so we’ll see.

I wasn’t a pansy, and went by myself for once. Well, I did try and pansy out and find someone to come, or pick me up, but it was for the best for me to face this alone. I need to rely on myself, while still learning to ask for help when I genuinely needed it. Sure I was afraid, and I wanted someone to hold my hand, or distract me, but I did take a nap. At the end of the day, it wasn’t a dire situation, and I have enough of those that I face alone as it is, so it makes sense to try and evaluate the actual need.

Depression and anxiety are still a thing. A major thing. I wish I could say that I had more good days than bad days, but I’m like a functional alcoholic at this point. I am profoundly unhappy, not nobody who knows me would guess that I’m a negative Nancy. To the people around me, I’m the positive girl. I’m handling my situation wit patience and grace. Above all, I take it day by day and smile.

Gag me.

Okay, maybe it isn’t that extreme, but let’s be honest for just a little while: nobody who is chronically ill, is also a diehard optimist who pisses rainbows all day everyday. It’s not physically or mentally possible. There is a difference between appearing positive, and actually buying into the things you’re saying. I fake it a lot, and a lot of the times I’ll end up in a better mood having faked my way into one…but other times I get even more depressed. I see the version of me people seem to love, and I die a little inside because that girl isn’t me.

Sometimes I cry on the floor in a ball. I scream at lab reports, and books about Behcet’s. I stare in the mirror and struggle to recognize the balding, often bloated, version of me that stares back. I get anxious about going out more than ever. It used to be a fear of vomit, and getting groped or drugged. Now it’s just wondering if my wig is going to fall off, or if I should be wearing a mask because of the germs. At least my fears regarding gropers and drink drugging have taken a hiatus. Nobody wants to touch and/or drug the bald chemo chick.

This is why I get asked a bunch of questions before my infusions. I get to talk about pooping with several nurses. Then I get to talk about my weird bruising. Then we chat about my battles with neuropathy. Then it’s the mental health assessment. Yes I take medication for depression…the anxiety situation is another story. technically my antidepressant should work on both. Hahahahaha, have the drug companies tested it on someone with my particular life configuration?

That’s the point though! My life is absurd. It’s absolutely mad. If I weren’t anxious and depressed, I would be certifiably insane, and worthy of institutionalization. 

My reality is painful. I don’t feel as though I will ever be truly loved, I don’t feel like anyone will want to live with me, share a life with me, and I’m not talking marriage, though I’m open to the idea if I found someone who wanted that…I just don’t personally think marriage is what should define a relationship. How two people treat one another is really what defines them as a couple. That aside, I can’t find myself being loved, being lovable. Sure, I’m kind. I’m not a bad person, but I have issues with depression, anxiety, and worst of all Behcet’s. I feel like the only kind of man who would “love” me, would be the caliber of man that my ex was. My ex is not capable of love. He lacks empathy. He can mimic emotions having seen them, but he doesn’t feel guilt or remorse like a normal person does. I won’t ever live that way again, ever, but that decision makes me feel like I will always be alone. Like women like me have to settle for poor quality men, simply because the good guys won’t settle for broken women like me.

It’s all deeply rooted in childhood nonsense, an I can reread it and realize how absurd I sound, but anxiety and depression don’t work off of logic. I’m anxious about living alone forever because I like to cook and clean and have someone to be there for, and have someone who is there for me. I also realize space is a blessing, and have always valued my own alone time, and the alone time of others. I am a good person, but I’m not good to myself. I know this. Changing it is the struggle. Trying to sort out wants and needs, all while feeling like you’re simply not lovable. It’s a horrible feeling.

“Nobody will ever love a sick girl like you.” The last thing my ex ever said to me in person. It replays a lot, but it’s not always his voice. It’s the voice of friends who have left me. It’s the voice of family members who judge my decision to slow down my graduate school coursework. It’s the voice in my head, my own voice, when I see couples holding hands and walking. It’s the voice of my depression, latching onto every ounce of venom in those words, words he knew would break me. He said it to crush me, for leaving him, but I kept walking. I didn’t humor him, give into the fight, and postpone my drive. He would have loved feeling like he won. Instead I just kept walking. I told myself that I wouldn’t believe, and I still hope that maybe someday  I won’t. Right now? It still feels pretty real, and it’s cold, hard, and hollow.

Cytoxan Round #3

Seiz(ure) The Day

I was supposed to go see a band play tonight, but now I’m pretty sure it isn’t happening. There is a point where the stresses of life become aggravating. What I want, isn’t what I have, and I struggle desperately to reign in my expectations. I don’t know if my roommate will want to renew our lease in March, and the whole situation has me pretty anxious. It would be easier not to move, but I’d be okay with moving…if I had an affordable place to go. The truth is that I love living downtown, for a variety of reasons, but the cost is problematic. I sold my car in a hurry, but didn’t get nearly what it was worth…only to have my ex decide he would keep paying me the money I rely on for rent.

My whole life I’ve pushed for independence, and now when I actually need to be independent, my body has given up. I know that I need to relax. I know that I need to sleep. I know that I need to listen to my body and let the chemotherapy do it’s thing. Knowing things doesn’t make acting appropriately any easier, though.

Things with my ex reached a boiling point last month, and while he has assured me he’ll be civil, I’ve been fighting the military to try and have something formally put into place. Unfortunately for me, they don’t want to get involved. It isn’t a civilian issue anymore, because he has pushed me into a flare with his nonsense. Still, they insist I need to run around to about half a dozen different locations to fight for access to the funds that I’m entitled to. It’s a joke. The military clearly states a bunch of things regarding separation and payment for spousal support, but then they go and enable the service member’s intentional lack of support. It’s absolutely disgusting.

Let’s be clear, too. I don’t care that my ex has a girlfriend, or that they’re supposedly having a baby. What I care about is the basic fact that he is paid more for being married to me, and that the military states he is required to support me despite the fact we are no longer together. I do take offense to the fact that this girl is living in what was our house, solely because I’ve been forced to stress over housing, enormously, while she moves in and acts entitled to things that are literally mine. I’m talking household items I was given as gifts or purchased for myself, that this girl is using as though she’s been with my ex for years.

I stress despite the reality that my debt is less than what most of society has. It stresses me out because I work hard to be debt free, for years, only to find myself accruing debt once I left my abusive marriage. Things I had to purchase because my ex refused to send me anything? I didn’t have the funds for those items. Add in medical catastrophes, and yo get my current predicament.

Last night I wanted to hang out with “the guy,” but I wasn’t feeling phenomenal. It sucked because I felt fine, ate, then felt sick, then felt fine, then as I left for his house, it was like my stomach went completely haywire. I didn’t dwell on the situation because I knew that I had eaten a big meal. Still things felt really off. We went to bed late, but I couldn’t fall asleep. My body felt weird, and my stomach felt off. Looking back I recognize the signs of a seizure coming on, but at the time I didn’t think about it. I haven’t had a full blown seizure in months, so I legitimately thought my stomach was acting up. I remember going to the bathroom, thinking I was going to throw up, feeling like I needed to lay down on the cold floor, and then nothing. There is a block of time I’m missing, about an hour and a half or so, and the rest of how I got back to bed etc., is fuzzy.

Nobody knows why I have seizures. For a while they thought it was psychological, but then I started having them while on various monitors, and they realized there were serious issues with my breathing and heart rate during and after. Codes have been called, drugs have been given, but I don’t remember any of it. I can remember the weird stomach feeling before, and sort of after if I’ve been medicated, but if I don’t get medication, I really do lose chunks of time.

I definitely had a seizure, and it upsets me for various reasons. The first is that I sleep better at the guy’s place, than my own. I honestly was looking forward to some good sleep given that I didn’t sleep while the night before. Hindsight? Not enough sleep and not enough water = seizure activity. I went to his place dehydrated and fatigued, and stayed up without water, just adding to my problems. The second reason I am upset is that I like spending time with him. He calms me. There is just something about him that brings me from an anxiety ridden state, to a calm one. I still worry about things like where I’ll live in a couple of months, but as long as I have him around me, I don’t dwell on it.

Then there is the reality of the things I miss out on because of my health problems. Tonight I should be seeing a band with my friend, but I won’t be. I could have gone last night, but I didn’t, and maybe it’s for the best. Still, I want to be the person I was before. I was exhausted, sure, but I was working and going to school. Now I can barely function for school, and that’s doing it all from home! Forget work.

There is this thought that socializing is this extra thing we do after we’ve done the things we have to do, but when you’re sick, socializing takes on an extra meaning. Things are taking from me one by one, and I clung to socialization, even though I’m introverted, because it was the last thing I could do to feel normal. Now that is falling apart, and I feel raw and exposed. Looking for another apartment, it’s so painfully obvious. I don’t have a job. I’m relying on disability, but I haven’t gotten my permanent disability sorted out yet. I struggle but the struggling gets me no where. I tell myself if I get that sorted out, then I don’t have to worry about housing, but that would only qualify me for low income housing. Here the low income housing options are sort of terrifying.

What I want has fallen away. I know I have to focus on needs before wants. That sucks. I’m almost 31, and I want to live the life I want to live. I want to go to school, and finish my licensure. I want to have my license, and a car. I want some semblance of normalcy.

My ex wasn’t right for me, who he was is someone who shouldn’t be with anyone. That being said, I would like to live with someone who enjoyed having me cook and clean. I miss it. Not him, and not our home, but the idea of a home. It’s silly to some, but if you knew me you’d understand. I was genuinely ready for marriage when I got married, despite how young I was. I’m still ready for that structure, living with someone, taking care of someone, but I’ve had to let it go. Who would want to live with me?

I know my ex was abusive, but I can’t stop pouring over those final words he said to me. He told me that nobody would ever love a sick girl like me. I know that they were words spoken to hurt me, and that I shouldn’t take them to heart, but they fester in my mind. I keep thinking about them at times like this, when I’m not the person I want to be, when I’m not doing the things I want to do. What if nobody ever loves me? What if my health is what it is, and I’m destined to be alone because of it? I have so much to give, but I also realize that my health is a horrible drain on the people around me. Even if I don’t ask for help, it’s obvious that I don’t feel well.

Just breathe, I guess. In and out…and hope that maybe it will all make sense.

Seiz(ure) The Day

First Flare of 2017 (It’s Okay)

On the 19th of December I had my second round of Cytoxan, which wasn’t enjoyable, but I survived. By Christmas I had a nasty chest cold. The pain had actually gotten so severe, I had to be evaluated to make sure I didn’t have a blood clot. I was also worked up, and monitored for pneumonia, because of some fluid noted in an x-ray of my lungs. Yes, I was in the ER…twice…one time was on Christmas Eve. My primary care doctor treated me for a dislocated rib, courtesy of my cough, and for pleurisy.

On the 1st of January I was determined to have a flare free 2017, but couldn’t ignore the fact that I hadn’t really felt well since the 19th of December. Sure, I’d had chemotherapy, but had it worked too well…yet again? After steadily f feeling worse throughout the first few days of January, I finally caved in and emailed my doctor, worried that I’d either developed an infection, or that I’d begun to have a flare. She hadn’t put in for repeat blood work, and suggested that I head to the ER to make sure I didn’t have an active infection brewing. Begrudgingly I donned a mask, called a Lyft, and went to what I had hoped would be the last crowded ER near me.

If only hopes were guaranteed realities, how happy we all would be!

The ER wasn’t crowded, but I’d placed a bet on a smaller ER, with one doctor, and he was not into the idea of treating patients expeditiously. Worse? My condition and treatment protocol put me into reverse isolation procedures…only they had nowhere to isolate me. I sat and waited in a sort of out of the way section of hallway for several hours before they had to give up, and place me in a room with patients who had the flu, just to process me in and out with the doctor. Without even seeing the doctor, they’d ordered a host of lab tests, which I was fine with, and yet another chest x-ray, which I found annoying. I’ve had at least 6 chest x-rays in the last two months. It’s becoming a bit ridiculous.

Anyhow, the blood work was annoyingly good. While I’m happy I don’t have an infection, my white blood cell count isn’t as low as one would expect someone on Cytoxan to experience. This is kind of a toss up between aggravating and relieving. I’m happy that they didn’t over medicate me, because I don’t want to murder my ovaries, or bone marrow, but on the other side of things, I am definitely having a flare.

I got hit with a double whammy of sorts. First, the chemo wiped out enough of my immune system to make it possible for a normal rhinovirus to nearly give me pneumonia. Second, the dose of chemo wasn’t high enough to prevent the stress of my ex, and finances, from instigating a flare. The best part is that the rhinovirus likely triggered an immune response which, coupled with the stress, resulted in the flare.

My eyes are being aggravating. My joints are miserably swollen, red, and painful. My intestines feel like they’re shredding while simultaneously being filled with large pockets of air. Simply put: I’m a Behcet’s addled mess.

When I sent my rheumatologist an email stating that I was feeling horrible, she had responded with a few ideas regarding what could be causing it…and the option to suspend treatment with Cytoxan. Saying that I was shocked doesn’t even begin to cover things. I have only received two infusions, and was told a minimum of six would be required to even give me a chance at remission. I went into this treatment protocol with fight in my heart, and accepted the 6-12 treatment protocol plan with the understanding that any infections could slow down treatments. I also knew not to expect immediate results.

Yes, I’m annoyed I’m flaring, which following my ER visit is definitely what’s happening…but I don’t think it means the Cytoxan isn’t working. Knock on wood…but I haven’t had a seizure since starting the protocol. More importantly, the other symptoms were completely absent during the first round of chemo, minus a few minor symptoms cropping up close to the second round of chemo. Given the amount of stress that occurred a few days prior to the second round, I’m shocked I’m not having a more severe flare. Normally I’d have sores, and intense GI bleeding. I’m only dealing with minor bleeding, and have no sores whatsoever.

To stop treatment would, to me, be admitting defeat. I’d be accepting the idea of treating symptoms as they arise. I refuse to live my life that way. If I had to, if they genuinely couldn’t keep my symptoms managed, then sure, I’d find a way to go on living this way, but I don’t think I’m even remotely close to defeat at this point.

My next round is in 10 days, which reminds me that I need to inject myself with Lupron TODAY.


First Flare of 2017 (It’s Okay)

Depression Depression Anxiety

It’s like a really miserable game of “duck duck goose” in my head right now. I can’t figure out if the depression is making me anxious, or if the anxiety is making me depressed, but it’s probably a combination of both. The doctors told me during the first round that it was normal to have a dip in energy levels around nadir, because that was when my blood counts were at their lowest. Accepting that is what is happening, has been a lot harder though.

I don’t feel like myself. When my hair started falling out during the steroid taper, and I cut it shorter and shorter, I kept trying to find a new identity along with it. Coloring it fun colors, and denying that my life was changing as the diagnosis got more severe, and the treatment options more debilitating. When the first round of Cytoxan left me holding clumps of hair, I felt empowered for about a minute after having what hair remained, off. Then I felt lost. My wig doesn’t fit me well, and though I can go to the wig shop and have a new one made, and fitted, the process of getting myself there is difficult. (The shop is about half an hour from me, and I cannot drive.)

Friends have fallen from my life, and the people I expected to reconnect with upon returning to San Diego a year and a half ago, haven’t all been understanding regarding my limitations. Why would they be? Some get it, but some don’t, and almost nobody understands the emotional aspects of it all. I have no hair. My once clear skin is red and bumpy. My weight fluctuates 10 pounds constantly due to not eating, then eating whatever it is I happen to be hungry for.

My primary care doctor increased my depression medication upon my request, but I haven’t found a psych doctor that I like yet. The practice that takes my insurance and is within reasonable distance cost wise for commuting, has really odd opinions on medications. Mostly they push what the drug representatives drop samples off of. They are making a move away from controlled substances, despite the fact that I do well when I have Xanax or Klonopin to take as needed. I will get my medical marijuana card renewed so I can get new marijuana strains that work better for my specific needs, but even that wouldn’t help me much right now. I can use it to cure nausea and help me sleep, but it doesn’t do much for depression.

Nothing really can, because my reasons for being depressed are completely logical. I don’t look like myself. My divorce has become bitter and hostile, despite the fact that we initially were in total agreement regarding terms. Things with “the guy” are still comfortable, but as I become uncomfortable in my own skin, I risk everything around me, including our situation. Both of us tend to be anxious people, and when my own anxiety and depression mounts, I have to distance myself to spare him added stress. I know he’d do his best to cheer me up, but ultimately be brought down in the process.

Is it really depression, though, if someone is going through all of what I am going through? I’m positive that I’m chemically imbalanced, given what I take for my Behcet’s and PTSD, and my limited diet…but how does that differ from depression in someone who eats normally and has no other underlying medical conditions? Depression in the chronically ill, or terminally ill, isn’t a new issue. There is a reason that mental health questions are asked prior to each chemotherapy infusion, but that doesn’t change the internal struggle I have with myself when these moods come on. I’ve lived with PTSD for a little over 10 years, and the symptoms have decreased, only to increase with this recent loss of self identity.

For so much of my life my identity was defined by what I did for others, and who I was to others. Now that I’ve finally been forced to focus on myself, there is a shock value associated with it. Suddenly I’m thinking about where I want to be, and go, in life, and then I see where I am now, and it all becomes overwhelming. There are things we can do as people to get where we want to go, but there are so many things out of our hands. When your health becomes a roadblock to success, you feel vulnerable, and exposed. A huge part of me feels unloveable. A friend has suggested that I have been uncomfortably comfortable in the situation with the “guy” because I don’t think I deserve more.

But how could I look for more? Right now I’m barely capable of maintaining myself, let alone a relationship with another person. Financially, emotionally, physically, I’m struggling, and while there is a huge part of me that lusts after the comfort of having someone there for me in a more concrete manner, I have to recognize that I’m not in a place to return what I would take out of a partner, at least not without sacrificing some of my own health in the process.

It boils down to wants versus needs. I have to recognize that my body is a need state, I need to do what I need to do to knock Behcet’s down, so I can pick up the pieces and build the life I want. I just wish I knew how to kick the depression that bogs me down in the fight. This last few weeks has been absolutely miserable. The treatment is never fun, but this time around it was more painful because I went alone, on very little sleep, with a ton of stress mounted on my shoulders. Going alone made me realize that “the guy” could and would be there when and if I asked him, and if he were available, but that I had to lean on other friends, and myself. In that moment, I wasn’t strong enough, though. I went into that treatment on the brink of collapse, having shaved my head the night before, and dealing with stress from my ex.

I am depressed. I am anxious. I am chasing both of those conditions around and around, to the point where I must look somewhat manic to the few people who choose to still remain close to me. As I focus on my needs, and give into the sleep my body craves, I hate my body for it. I pretend pain that I feel doesn’t exist, and that I can do things I know I can’t do simply because a huge part of me wishes it were true. That I were capable of achieving whatever I set my mind to. I pretend that it is me walking my dog for an hour along the bay. I pretend that it’s me, dancing downtown, and living it up. I can only pretend for so long though, before I succumb to the sad reality of the four walls of my bedroom.

There are inspirational quotes around, and jokes, and funny photos and movies…but there is also reality. Sometimes it’s just too much to deny. Sometimes you just have to cry, and accept the raw pain of a chronic illness, and serious medical treatment.

Then there is chemo-brain, which I almost forgot to mention (ironically.) Some people have said that the chemo-brain scenario undoubtedly contributes to depression, because you’re in a fog, an you’re operating slower. It’s definitely a real phenomenon, and I’m grateful I’m only taking anthropology during chemotherapy (thus far anyhow) because the professor agreed to let me audit the course from home versus come in and do the labs. (I still need to sit in on the course in six months when it’s on campus, but that’ll be doable, hopefully.

If there was anything I clung to, it was that I was in graduate school, and I had a plan for myself. When that all went out the window, I lost my identity as a student. Now that I have one class, I’m thrilled, but I’m still freaking out. What if I don’t do well in this class? What if they can’t fix the filing grade I got from taking an incomplete and not finishing within six months? (I took the course during Rituxan, couldn’t finish, and then the first month of chemo fell RIGHT on the six month mark, so I obviously missed making it up.)

I’m the one who tells everyone where everything is, courtesy of PTSD hyper vigilance now I’m the one running late due to misplaced keys, or sim,ply running into a room to get something and forgetting what I came for. My identity has been stripped to the bare bones, and it truly is a struggle for me to figure out what I’m going to do at the end of the day to define myself i na positive way. Right now I just feel like that “sick” girl.

Depression Depression Anxiety