I dread Sundays now!

syringe and methotrexate vialsI’ve had a couple of doses of this stuff now and can say taking systemic methotrexate IS different from the pill form. And for the better, overall. I don’t take as many naps but I do fatigue SO easily, I’m tired and feel ‘sickish’ (not to be confused with feeling straight-out sick) most of the week. It’s easier on my system, not having to go through my GI track. There’s nausea that follows everything I eat for two or three days. I’ll take that over the constant burning stomach thing as the nausea isn’t nearly as severe as the other. Annoying, and can make me feel a little weak, but far easier to deal with!

It doesn’t take much to fatigue me. Chopping veg for supper does it. Loading the washing machine and or folding a load from the dryer does it. Sitting on a heating pad for loads of time (that’s been my week this past week) does it. I think just being awake does it, really, but I’m not feeling hopeless in trying to fight naps. Not caving to naps at all, really, save for one or two a week. Far better than TONS of naps, daily, on the pill form.

I have a slight increase in joint pain but I wonder if it’s stemming from my back? I do have a little more hair falling out but it’s not much more than normal. I have a TON of hair so it’s not even noticeable to anyone but me.

What I have a HUGE problem with is the delivery system, the needle.

I’m terrified of needles in the biggest and most babiest way possible. Or, maybe, I defy imagination with the fits I throw when presented with a needle. Dunno. Anyway, I’ve been getting injections in my eyeballs for over three years now, darn near monthly, and I sit there and let them do it. People think I’m super okay with needles because of this but they’re SO wrong! If I don’t get those injections I’ll be completely blind within months. They’re like a carrot over my head that I’ll chase as long as allowed! Plus, they numb my eye before starting the injection process and as long as it goes well, I don’t feel much more than pressure.

Shots in the gut? That’s different!

That said, the first one I didn’t feel outside of a little prick. It stung quite a bit afterwards for a good ten minutes or so, but wasn’t so bad. That didn’t stop me from crying (a LOT), however, as the experience goes against my constitution seven ways from Sunday! The second week, UGH. That one hurt! I lie down on the couch so I’m relaxed and so I won’t be as likely to see the needle or attack when it gets close (I’m being a tad facetious there). Boo saw me on the couch and decided to lie down beside me, on her back, and this made Mike nervous. He thought she’d try and touch the needle so he paid more attention to her than to giving me the injection. When he was done she patted her tummy and said, “Me next!” and, because she’s an odd duck, was upset when he wouldn’t give her a shot in her stomach.

Silly and odd duck.

I’m writing this on Sunday afternoon so by the time you read this, I’ll have had a third. Here’s to hoping it’s more like the first time!

My doctor told me, when he decided to switch me to this type and dosage, that it’s very probable this chemo won’t work. He said we’ll do this for about twelve weeks and if it appears to be working then he’ll up the dosage from 20mg to 25mg weekly. If it’s not working then they’ll have to switch me to a stronger type of chemo that, most likely, will be harsher on my system and cost $300-$500 a month. Methotrexate is cheap, about $10 a month. I hate hate HATE taking it but I can’t tell you how badly I hope it works so I can keep taking it for however long. (Originally was to be weekly for two years, not sure what they think now.)

My head is filled with angst over the whole thing. I don’t want to go blind so I’m going to take whatever they tell me to, however they tell me to. I want to feel hopeful, that this time it might work, but I can’t get the doctor’s words out of my head. They taunt me when I’m feeling bad. I’m glad he was honest with me, don’t get me wrong. It just … sucks.

Cross your fingers with me and hope this works!


Posted on August 17, 2015, in Blog, Personal and tagged , , , , . Bookmark the permalink. 8 Comments.

  1. Fingers crossed for you, stay strong.

  2. I certainly hope that this medication works the way you need it to. Sending good vibes your way.

  3. Doing my own version of crossing fingers for you. You are brave.

  4. I didn’t realize you were doing the injections at home. I still can’t imagine taking a needle to the eye considering how combative I used to be just for eyes drops but that was also when I was a kid and I wasn’t faced with something worse happening if I didn’t get the drops (that I know of, anyway. I did have uveitis for a while). Anyway, here’s hoping this works so you don’t have to use the stronger, more expensive stuff but mainly so that you don’t lose more sight.

    • This is Mike’s first time giving injections so we’re both learning how this works together. Last night he forgot to pinch … heh. Kinda hurt!

      There’s a trick to getting eye drops and shots. Look away from it. You’re not as likely to squint/close your eyes if you can’t see them coming. It’s hard to get drops in Mike’s eyes (he closes them super tight before you can) but if he looks away we sometimes get drops in them.

      One of my eye diseases is multifocal choridopothy with panuveitis (if I spelled all of that correctly). If the chemo meds work and supress/reboot my immune system so my IS will stop attacking my eye sight, I won’t need the pressure drops or any of the injections. Really hope that becomes a reality!

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