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.

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Cytoxan (Cyclophosphamide)

The Good in Bad News

Today was bad. Not just today, the last 10 days really. When they told me the Humira wasn’t working there was a lot of hope pushed onto Cimzia, so much that I think I may have even managed to placebo effect myself. My primary care doctor was more zealous about the Cimzia than my rheumatologist was, but I was sort of expecting the double injection to do something. Maybe it wouldn’t work for long, maybe it would just buy me a few months, but it would do something, and I could be normal-ish feeling for a while. Right?

Wrong.

It didn’t do anything. In fact, I’ve been sleeping nonstop since injecting last Thursday. I’ve dragged myself out of bed for work, and been pseudo-grateful the guy was out of town, because I’m just that tired. It’s the kind of tired that people who don’t have a chronic illness can’t fully grasp unless they’ve had to work a full day, with the flu, while walking uphill the entire time.

Yes, I’m that tired. 

So today I woke up, and my lip was numb. I thought, “That’s odd,” but I also was so damn tired I didn’t know how I was going to make it to work. My head was throbbing. “That’s odd,” I thought, again, because I hadn’t gotten the bad headaches since before starting Humira. As I sat in my shower, on a bench I bought, because I’ve been too tired to stand during a full shower, I worried I’d be late to work. Then I shoveled a donut in my mouth. Oh, did I not mention I was eating donuts in the shower? Yes. I was eating donuts in the shower. Can’t be late to work if you combine activities you should never combine.

Perhaps, at this point, while eating powdered donuts in the shower, I should have stopped to evaluate the efficacy of my current course of treatment, but I didn’t. I just ate my donuts, and dragged my tired ass to work, where I realized the numbness in my lip was a precursor to pain. I wasn’t just getting an ulcer, I was getting a mouthful of ulcers. And my head didn’t just hurt, it was pressure, because of inflammation. Oh, and I wasn’t just tired, I was exhausted, and dizzy. Full on flare mode engaged.

I called my rheumatologist before I even went to work but she never  called back. My primary was next on my list, and I called him at work. I made an appointment for tomorrow (today now I guess) but left a message explaining my symptoms and that I thought we should probably pump some steroids into me like, ASAP. He agreed because within an hour I had a call back saying I should come in ASAP and get the max dose if I was really flaring the way it sounded like I was.

Like a sign, my boss comes through and announces that it’s slow, and one of us can leave early if we want, before he himself skipped out. My coworker didn’t want me to go because she wanted help closing, so I offered to leave and come back. It would mean $30 out of my pocket to do it, and basically nullify the tips for the night, but if it meant I would stop feeling like death was coming, it would be $30 well spent.

My primary care doctor and the medical student found more oral ulcers than I’d noticed starting to crop up. In fact, they found a few that were already formed. Nice. As I showed them lesions on my legs, one on my hand, and the bumps on my face, along with the bruised legs, I could practically feel the needle full of steroids going into my ass. It’s fine though, I needed it. At that point however, the doctor said something I wasn’t expecting.

I probably wasn’t going to give Cimzia another chance in two weeks. We were going to start blood tests ASAP to clear my for Rituxan. 

Come again now?

I knew that Rituxan was the next step, but I guess denial was a wonderful thing while it lasted, because I thought I had a few more months with my B-cells. Now it might be a few more weeks. I’m contemplating a party, because why not? I’ll have to be a bit of a hermit after the infusions since I won’t have an immune defense left…but that’s kind of the point isn’t it.

The guy pointed out several studies though, in which Rituxan therapy, as shitty as it is in theory, is practically perfection. Diseases go into remission. You don’t have the whole body impact that other chemotherapy type drugs have, because Rituxan only hits B-cells. Sure, you’re wiping them off the planet, but I mean, they’re not really doing their job anyhow…so why bother keeping them around?

Still, I think I’m going to have a party. I like parties where you wouldn’t normally think celebrations would be in order. I fully intended to celebrate the finality of my divorce with a party, but if I’m going to be severely immune compromised, I probably won’t be out doing that.

The logistics worry me. What about work? What about classes? How immune compromised will I be?

Then there is the guy. This person who is casual, but somehow the biggest supporter I’ve got. Who insists he’ll be there with me through the infusion, watching shitty movies, and if if they keep me (as they should) overnight because of my allergic reactions and whatnot, he’ll stay as long as they let him. This wasn’t how I grew up. Getting sick was a bad thing, for everyone, it took time and resources away, so there was this huge stigma attached to it. Get better, or deal, don’t ask for help, and if you’re going to be sick, you better BE sick. Seriously. Don’t waste a parent or doctor’s time with a trip if you weren’t seriously in need.

I get that isn’t how the majority of the world works, but in my family, it was a thing.

So yeah…my shitty b-cells are getting evicted. I’m not sure how I feel other than conflicted. I wish they’d just do their job, but I guess that isn’t in the cards.

The Good in Bad News