I didn’t get bad news yesterday but it was disheartening. Feels a bit heavy today, little frustrating. I’ve wondered if the chemo pills were working. I even told my doctor, when he asked, that I didn’t feel they were. He’s not 100% sure, thinks they may be working to prevent new occurrences of the inflammation but they aren’t doing everything he wanted them to do. His hope is to get me off the ocular injections and that would eliminate my need for the pressure drops that I unaffectionately call ‘the little drops of fire’. They burns me!
I thought something was going on with my good eye back in early December but it wasn’t yet at a stage where they could see it. I knew I had to wait. Waiting is hard, though. I questioned myself constantly, wondering if I was just imaging “it”, paranoid because it was that time of year again. The last two or three birthdays I’ve spent in and out of my doctor’s office because my eye disease rears its ugly head and attacks my vision. I was hoping that’s all it was, that he’d tell me I need to chill out and stop stressing over nothing. I’d much rather hear ‘you’re nuts’ than ‘it’s back’.
It’s back, however, and as much as you’d think knowing that I’m not …. (this is horrible) … seeing things would make me feel better, it doesn’t. He said he thinks the chemo pills, low dose Methotrexate, may be working to prevent new occurrences but not on the old ones. That’s the part that’s weighing so heavy on me right now. I’d assumed it would work on both. Actually, I hadn’t thought to distinguish one from the other. Plan of action is to go back to getting the Avastin injections in my good eye every four weeks for the foreseeable future. Next month I go in to have retina pictures taken with a different, more in-depth, camera. Supposed to show my entire retina in better detail and, hopefully, help him to see what’s going on back there.
Those scans will let him know whether to leave things alone in terms of the chemo pills, up the dosage (which means bye-bye weekly pills, hello weekly injections) or put me on a stronger chemo medicine. His concern is that I have reacted to the low-dose Methotrexate (zaps my energy a TON, growing nausea with each dose) when, according to my Rheumatologist, I shouldn’t be having reactions. He (Rheumatologist) said reactions are rare and flat out made me feel like a freak. Whatever.
For now I’m still on the little drops of fire, back on monthly injections, still taking the weekly chemo pills and waiting on pins and needles to have those new camera scans done. Oh, and the cataract that’s forming in (on?) my bad eye due to the trauma of all these injections has grown. It may be why my loss of vision in that eye has doubled. I’m told it’s a super simple procedure to have it removed and my doctor has told me they’ll take care of that when it’s time. Still. Sometimes, on days like today, one more thing just feels so … it’s dramatic to put it this way but I feel a little deflated.
Here’s to hoping the weekend is light, bright and like a sweet balm to my soured mood.