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!

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

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

Cytoxan: Round One

It’s Thanksgiving, which was never a favorite holiday of mine. As a kid we had church donated food, and it was good, but it was also a reminder of what we didn’t have. Then there was my issues with eating due to anxiety, and then by my teen years I was having Behcet’s symptoms, but of course, it wasn’t acknowledged until my twenties. In any event, I have always looked for ways to duck out on this particular holiday. When I worked retail, I’d volunteer for dinner shifts, same for when I worked in a hotel. The last two years, however, haven’t exactly worked out simply. Last year I had knee surgery two days before Thanksgiving. This year I had my first round of chemo on the Monday before.

I went in optimistic. My thought process was that I’d feel sick Monday night, Tuesday, and maybe some of Wednesday, but by Thursday I’d just be tired and a little hungry. That hasn’t been the case. During the infusion I started to feel nauseated and honestly thought I was going to both pass out and throw up. I had the guy grab a nurse, mostly so he wouldn’t see me toss my cookies if it happened, but they stopped the medicine, gave me more fluids, then continued, and it was fine. I just felt very tired. (I had received Ativan due to muscle spasms in the beginning. They claimed it was anxiety, but I’ve had them for years.)

Each day has been worse, and it’s because I’m not drinking enough water. It’s hard to drink water when even the smallest amount of food or liquid trigger your urge to throw up. I’m not capable of ignoring that signal from my body. Some people can power through, and be like I’m nauseas, but I’m going to sip on this or that…not me. My mind is firm. If I’m nauseated, nothing shall pass.

I had Zofran with the infusion, then my usual at home dosages of Zofran, but it wasn’t enough. I used some promethazine to switch it up, and had some relief, but mostly I just slept. The problem with that is, while I need rest, I’m not getting fluids if I’m asleep. I finally asked a friend to bring me a strain of marijuana that was good for nausea. I wanted something with low THC, because I didn’t want to feel high, but enough that I wouldn’t feel like my stomach was going to kill me.

It worked.

I went from stuck in bed, to being able to slowly walk my new dog around the block. I didn’t feel 100%, but I felt so much better than I had. Today I used it again, and I may just have to smoke regularly to get through the next few days. I hate doing it, because it makes my mouth and throat dry, but I have lemon lozenges for that. I just wish regular meds worked for me. Then again, why are we so against marijuana when it clearly works wonderfully on illnesses like mine? Why am I denying myself medication that could make me functional. Make me able to get out of this damn bed and do something? I used it for what today? Water and putting the dishes away. Seriously.

My mother is in denial. She believes what her friends have told her. How I shouldn’t feel nearly as sick as cancer patients, and how the side effects for me are lower because the dose is lower. She’s wrong. The dose is the same, the frequency is different. I will feel shitty because I am nuking my body! It’s frustrating because we don’t really have a relationship beyond pretending, and now she’s attempting to become involved when there really isn’t room for her nonsense.

Side Effects

  • Nausea
  • Fatigue
  • Dizziness
  • Headache
  • Body ache
  • Sore throat
  • Abdominal pain
  • Yeast infection?
  • Bleeding? <—

So there is a really bad side effect that can cause severe bleeding from your bladder. It’s bad. I don’t have that, but I am spotting which is odd. I do have a history of getting my period when I’m not eating enough, which I’m not courtesy of the nausea, so I’m guessing the existing yeast infection has melded with the spotting to produce what looks like a bizarre period or some sort of weird bleeding situation.

In any event, I’ll take bleeding if it’s period related, because that means that I’m still technically fertile. Of course it’s old blood, so maybe it means nothing. Maybe its’ my ovaries bidding a final farewell to a world they didn’t get to know. Maybe I’m just melodramatic because my life is in a major upheaval and I want things to even out so that I’m not constantly waiting on pins and needles for the next horrifying development.

I’m supposed to be done with graduate school…if I’d never taken time off…it’s a depressing realization but it’s not like I can do anything about it, There is no way in hell I could manage classes like this, so I’d have to miss 1/4 of my next three laboratory classes, which means I could potentially graduate, but not with a good grade. Worse, I’d be exposing myself to a massive amount of germs while I have no immune system to fight them off.

Life is what it is, though. I make decisions because I have to make decisions. It’s not like I wanted to have chemotherapy. I’d hoped for some sort of IVIG therapy, or something biologic, but because of my resistance, and the likelihood I’ve developed antibodies to TNF blockers and other drugs, this was the last resort.

The whole irony of this is of course the nausea. My severe GI Behcet’s is what triggered the IV medication route, because oral routes weren’t working. I was pretty much inflamed from stomach to colon, and they knew periodically there had to be ulcers because of the bleeding. So now I’m on chemo, because I basically have severe systemic Behcet’s. Eyes, nerves, stomach, it’s all involved, and oral medications that are strong enough are too strong for my stomach to process. Chemo may make me sick, but the medication is still in my system.

So yeah, I’m tired. I’m feeling like a waste of space and time. I’ve never loved Thanksgiving, but it’s hard because I want to be normal again. my next treatment is December 19th, and honestly, I really want to do something with someone for Christmas. I don’t want to be alone. I don’t want to be left out. I don’t want to be me, or at lest the version of me that is stuck in bed sleeping and attempting not to throw up. It doesn’t have to be the guy, though that would be fun, it just has to be someone, anyone, who wants to see me that day. (Let’s be honest, the guy would be fun, especially since he’s out of town now, and will be again the first week of December.)

Now, before people judge me, “You’re trying to date while having chemo? Focus on getting well!” <—-

I am focused on getting well. The guy is the guy because it is what it is, I’m letting him choose, and while it isn’t always easy, in the end, I’m accepting of whatever comes of it. Plus if he can’t handle sick me, then the doesn’t deserve not sick me. My ex couldn’t handle my sicknesses, neither could my mom, so I’ve learned to expose people to the reality of who I am early on. Friends, potential people to date, doesn’t matter. I have this, it changes how I do things, take it or leave it!

But I still wish I didn’t have to do that.

See, the reality, the true, no bullshit reality, is that most of us, deep down, want that quintessential American dream. Nice place to live, maybe few kids, traveling, having someone to come home to, blah blah blah. I hate that in my core, that’s what I want, too. I want someone to go travel with even though I hate flying. I want to knock items off my bucket list, save up, and buy a house or condo. I love the idea that I could find someone who would be okay with buying a condo instead of a house, since my ex was completely against it. I want kids some day. Marriage isn’t important to me, which is an odd development, but I’ve realized that the legality isn’t what makes it important to the two people involved, it’s what makes it legitimate to the people around them.

Sitting here, nauseas, in a headscarf crafted by the guy’s mom, I wonder what my life will actually be like. Will I travel? Maybe it’ll be alone. I try and come to terms with who I am, who I want to be, and the reality of my potential future. Most importantly I close my eyes, and I whisper internally, “remission,” because until then, I can’t accomplish much. Does’ mean I won’t try, but it does mean accepting the reality of limitations.

Cytoxan: Round One

Cytoxan (Cyclophosphamide)

So much drama, and so much going around and around, but I guess that’s the joy of being chronically in. I swear, we should all write passages for a book called, “Chronicles of the Chronically”. This week my pain levels have hit a new level of horrible, and since I can’t really take narcotics without having to worry about potentially having a seizure, I’ve basically just had to suck it up and deal. This has meant a whole lot of showers, heating pads, and surprises. Surprises? Well, for example, one day one set of joints will hurt, the next day, a whole different set will flare up. Yesterday my feet opted to get in on the fun, which I wasn’t really aware of until I got out of bed. Every step, you could hear cracking, and it felt like bones were breaking.

My ex, being the wonderful piece of garbage that he is, has decided that, rather than just go through with the divorce as we agreed, he wants to get a lawyer, disagree with everything, and force the proceedings into court. He doesn’t realize that this will drag things out even further, and worse, cost him a whole lot of money. I’m hoping I won’ get slammed with court fees because I’m disabled and he should have to pay my fees, but we’ll see how it works out. For someone who wanted this over and done with, he sure picked a stupid thing to do. Of course he’s one of the stupidest people I know, so that’s not exactly a huge surprise. He probably figures, since I can’t make it to court, he’ll get a default agreement, or get what he wants. The idiot forgets that I am severely ill, and have a fantastic lawyer. one doctors letter, and boom, I’m officially excused from court proceedings for at least six months, and it also makes him look like an ass because it clearly states I haven’t been able to work, and will continue to be unable to work.

It doesn’t mean the news that he was pushing it to court didn’t stress me out. I found out he’d done this shortly before I found out we were officially moving onto chemo. As far as he knew I was already doing chemotherapy like treatments, which I was, so in his mind I probably wasn’t as sick as I truly am. My misfortune has become his misfortune though, since his girlfriend is due in February. If he truly wants the baby to be able to get Tricare, he can’t have a wife as a dependent, who isn’t the mother of the child. I’ll be doing chemotherapy until mid-April, so unless they want to pay out of pocket for the appointments and birth, he’s going to need to stop being unrealistic.

I think the hardest thing for me has been knowing that he’s supposedly expecting a child with this young woman, and  may be losing the ability to have a one myself. The odds on my regimen range from 60-70% in terms of ending up infertile. Knowing that leaves me 30-40% is comforting, but not really as comforting as having eggs frozen just in case. I found out this week that freezing my eggs isn’t an option. My doctor doesn’t want to delay the start date, and we’re talking about starting next week if the infusion center has an opening. We did talk about Lupron, but there isn’t a ton of clinical evidence it works, and she’s concerned the side effects of menopause could mask whether the Behcet’s symptoms have started to abate. There is also some concern about hormones again, and how that impacts my disease. Would putting me into menopause, then pulling me out of it, end up making me flare immediately after we reverse it? I did have a lot of flares concurrent with my menstrual cycles.

The guy, for his part, has been supportive, joking about whether there is anything sexual that can be done with bald heads, and chatting with me about wigs. He’s also repeatedly told me how he’s here for me, despite my concern that I may vomit and he may hear me. Other friends have come out of the woodwork, too, and it’s nice to know that I’ve got people. Most can’t physically be here, but I know they would if they could. I did cry because I have lost a lot of friends being sick. I was talking about it with the guy, and I told him I felt lonely, a lot, like my illness drives people away, and then on top of it, it prevents me from making new friends. Being introverted just magnifies the effects.

My shitty insurance, while it covers things financially, often only offers me shitty providers, and in terms of mental health providers that’s majorly clear. I liked my counselor, but the doctors regulating my psychiatric meds have no clue what they’re doing. It’s scary when you’re looking into black market ways to keep yourself plugged into society because your doctors have gone crazy themselves. (I’m talking getting backup meds from a friend, not street meds, though there are a lot of drug deals going down as of late.)

Who would I talk to about this stuff besides other sick people though? The guy asked if I thought about looking for support groups, and while it’s a good idea, I also had to chuckle because any support group for the chronically ill, is bound to have a lot of absenteeism. I know I’ve folded under pressure lately, feeling like crap, and wanting to just sleep a little longer. I force myself to wear actual pants to the guy’s place, but the truth is, I’m in pajamas so often ,buying a few more pairs seems like a good investment. (Note: long legs = buying mens pajama bottoms to be cost effective. Victoria’s Secret works, but is the cost worth it, really?)

So chemo. Legitimate chemo. My mother oh-so-kindly pointed out that it’s not real chemo, like cancer chemo…even though it’s the same drug. True, my schedule is less rigorous and involves less drugs, but the side effects, and dosages, still make it a shitty thing to look forward to. As the guy has said, though, I can think about it and prepare for it, but I also need to think about and plan for the end of it. Remission. Vacations. FUN. I had to postpone my trip to Mexico, sad, but I didn’t she the funds anyhow. I’m determined to get to a nice hot tub, somewhere it snows, at some point during the treatment, maybe around New Year’s. I can take a real vacation once it’s all over. I’m also kind of hoping my hair just falls out at this point. Post Cell Cept and steroids, it’s just falling out and breaking constantly. I don’t know how I have any left except that I had super thick hair before hand. My scalp has hurt lately, and more hair has been coming out, so I’m thinking with chemo, it’s bound to just abandon ship.

Cytoxan (Cyclophosphamide)

Just Say (YES) to Drugs

So I’ve spent the last several weeks convinced I was going insane. Not just a little nuts, like anyone with a new job, and on campus classes, who happens to also be in the middle of a potentially contentious divorce, would be, but honestly insane. Last week I met with my mental health doctor who prescribes my sleeping pills and anxiety medications,and she agreed that I was majorly depressed. Again, not a shock as I was sobbing over literally nothing as I sat in her office. We ran through all the potential drugs, drugs I’ve tried, drugs I’ve liked, drugs I couldn’t take because of the Behcet’s and my history of seizures. The most effective drug being the one most likely to cause seizures, and therefore thoroughly on my “never EVER take this” list.

I sat there, and I felt more broken than I’ve felt in a while. There is something about becoming emotionally broken that takes a harder toll on you than the physical breaking does. When someone sees you’re covered in bruises, or ulcers, or your eyes are super red, they see that you’re sick. When you’re mentally shattered, and good at pretending to be fine, it takes longer for those around you to realize you’re not okay. We settled on a drug, but she wanted my neurologist’s okay before starting. When he hadn’t gotten back to us in 24 hours, she said to go ahead and start it because she was concerned waiting longer was going to be detrimental. I needed this drug in my system, my depression was severe.

Then my neurologist called…

Did you know that Keppra can cause major depression? I didn’t.

I have this rule, I don’t read all the side effects because I take too many pills to really  spend my time worrying about the various things that could happen to me. I know what to look out for with the major side effects, and that suits me just fine. No need to worry about tornadoes in Texas if you’re standing on a shaking fault line in California. Point is, I didn’t know. They’d been steadily increasing my Keppra dosage, as my depression got worse, and then had the audacity to suggest psychogenic seizures even though my mood issues seemed to only become a problem after the dose had been increased.

The answer right now is halving my Keppra, and adding in Lamictal, something I was allergic to before, but the doctor is hoping I’m not allergic to this time around. I still have to start the antidepressant along with the sleeping pills, but I will say this: weed works wonders.

There was a time when I swore, even though it was legal for medical reasons, I wouldn’t do it. Now, I’m grateful that I have the option. In terms of my depression, anxiety, and sleep issues, it’s perfection. The same goes for my issues with nausea and appetite. I’ve given up on the idea of, “just in case of emergency,” because I’m sick of living in a body on the brink of giving out. Why should I wait till I’m in the flare of the century to use my vape pen or vaporizer? Why should I juggle a dozen pills that make it all worse, when I can alleviate the need for several with just one plant?

Look, I’m not saying marijuana is the answer to every ailment out there, but it’s definitely got some major pharmaceutical potential in it’s raw state. Why would I forgo the obviously beneficial plant, for the synthetic Marinol pills (that are federally legal) when they’ve been proven not to be as effective?

A friend told me to make a list of things I want out of life, and that I want out of a partner. (This stemmed from a talk regarding my woe over turning 30, mid-divorce, and feeling like I’d never have a husband and family.) I realized that a lot of what I wanted, were things I needed to be healthier to obtain. My exes scathing words, “nobody is going to love someone who is sick like you,” rung in my ears, but I heard them differently this time.

I need to love myself, illnesses and all, before I expect anyone to commit and love me.

I am a good person, I do good things, and I care about people, but I don’t have much in the way of self-esteem. My issue is that I feel defective and disposable, and having an illness doesn’t help with any of that. When you pull out your medication back, and stare at the bottles and bottles of pills, it’s hard to separate yourself from the illness It’s hard to figure out what parts of me are lovable.

So yes, I smoke medical marijuana, and I think it’s het only thing keeping me from having a physical and emotional breakdown at this point. My nausea is easing, my depression is lightened, and even my anxiety is more manageable. I’m still taking all my regular medications, but I was able to hang out with the guy (who is naturally just soothing to begin with) without being to overtly awkward. When you live most of your life in pain, alone, and uncomfortable, you start reaching for whatever makes it better. For me the only gateway Marijuana opens up, is the gateway to a better future.

Just Say (YES) to Drugs