RELAPSE. It’s a word ‘we’ cancer “survivors” never want to hear. But it happens to many people again and again and again and we will never know why or understand it. Cancer relapse can happen in so many ways and forms I’ve never even heard of.
Relapse sounds like the most frightening thing to me right now. I worry about it, though there is nothing I can do about. So, I TRY really f*cking hard to focus on the things I can control–my life, my actions right now–and let’s just say that’s not going too well.
I had one cancer relapse scare before. Not sure if you remember or if you are a newbie around here, you may not have read it. You can read the post here; it’s titled “Leukemia In The Brain.”
What I’ve learned throughout this “cancer Journey” from hell is there is so much we, regular folks and even doctors, don’t know about cancer yet. I mean leukemia in the brain thing totally threw me for a loop, but we did two rounds of chemo via a spinal tap. The chemo went in and around my brain to make sure there weren’t any leukemia cells hiding up there.
Cancer Relapse Bomb Dropping In 5…4…3…2…1
“Leukemia in the eyes? I didn’t know there was such a thing,” I responded to my doctor who was staring at both my eyes intensely.
You see, it was sometime in June, and I was dealing a mess of things. From unexpected insurance changes and running completely out of my anxiety meds for days (which made me a blubbering, shaky, crazy ass bitch, like 5150-Amanda Bynes batshit cray) to waiting for a CT scan of the chest to see if my SVC Syndrome (blood clot had stayed clean). And on top of that, I wanted to figure out what was wrong with my saggy f*&king eyelid that had me looking drunk, tired, or hungover all the time. Want to know what SVC syndrome is? Click here.
I’d been going to my oncologist for every week trying to deal with these issues and figure out the next steps with my GVHD of muscles. Meanwhile, my eye was getting worse and not too much attention from the docs because they were so focused on my GVHD of my muscles.
Originally it was thought, this “droopy lid” could be caused by the GVHD. I could be developing GVHD of the eye; Yes, there is GVHD for about every part of your body, apparently even your lady goods (more on that later).
Anyway, let’s flashback to the day I was at the hospital.
I was already at the hospital doing a CT of my chest while having the freak out of the century without my anxiety drugs. It was really freaking bad. I was hysterically crying and I couldn’t calm down. My girl, Narissa, who always does my bloodwork and I adore her, was walking by the pharmacy at the oncology office and saw me sitting alone waiting for my meds.
“Cassidy! What’s wrong?” she asked.
I don’t know what I said to her or if it made any sense at all but she sat and waited with me until those anxiety meds were ready and later walked me downstairs to my Mom and Bex. This is BEFORE I saw my oncologist.
I forgot in all of my crazy rambling to tell the nurses (who saw me about the anxiety meds) about me seeing spots.
I told my mom that last time I was seeing spots Dr. B kept me in the hospital and figured out I had SVC Syndrome. So, I needed to tell him–it may be nothing important–but you never when it comes to cancer or your health.
I went back and told the nurses at the oncology office that I was seeing spots and lines and having trouble reading as things were getting blurrier and blurrier.
And, just like that Dr. B wanted to see me ASAP. Uh-oh.
I enter the patient room and wait for him. I was definitely worried about the outcome since the last time I mentioned seeing spots, I had a serious blockage near my heart, and that kinda tipped him off and made him want to see me in person. So, I’m concerned and alone in there.
Dr. B and his, PA-C Katie, enter the room and immediately notice my eye. Both looked at it intensely.
Then, the questions were coming:
- Are you seeing double of anything?
- Do you experience pain behind the eye?
- Do your eyes feel dry?
- Does it stay this droopy all day?
- Is it better or worse in the morning?
I wasn’t seeing double at the time, but I had pain in my eye where it was so bad it was forcing it to close. Of course, my eye would also feel like it was on fire. It burned so bad a few times, I had to put an ice pack on it.
Dr. B started talking again his eyes still examining mine. “Well, you may have an atrophy of the optic nerve behind your eye or a blood clot on a nerve that could be causing the problem. This could also be GVHD of the eye, but I don’t think it is.
“It could also be leukemia in the eye. Sometimes leukemia likes to hide in the nooks and crannies of the brain and behind the eyes, which is why you received chemo via spinal tap to go up your spine and around your brain to hopefully eliminate any blasts if there were any up there,” Dr. B, continued.
“I’m not worried as much that it’s leukemia because you’re not seeing double, and that’s a major symptom for that. But we need to do an MRI of your head to make sure there isn’t anything neurological going on either.”
And just like that, things changed.
The awful ‘L’ word was now a possibly infecting my eye or already had. I could have an aneurysm on a nerve behind my eye or even neurological problems or something completely different.
Leukemia in the Eyes! A cancer relapse? Neurological problems? Seriously? CAN I CATCH A F*CKING BREAK?
So I was to get an MRI, referred to an eye doctor to review the MRI, run tests, and see if I need a BIOPSY from my eye.
HOLD THE FFFFFFFFFFFFFF UP.
“A BIOPSY!? How does that work?”
Apparently, they said, he somehow go through the eyelid back into the muscles back there or something like that.
I can barely make it through someone putting eyeliner on my eyes without them watering and shaking. There is no way in hell I could ever do that procedure awake. NO WAY. You don’t mess with my eyes, hell no.
When I was headed home, Mom (was driving), I started messing with my eyes. I would close one eye and look, and then close the other eye and look… and that’s when I saw it. FULL-BLOWN double vision on signs, cars in front of us, billboards, but especially anything with words. No, no, no!
I immediately contacted Katie to let her know what I discovered with one eye closed. She was going to inform Dr. B and then we were going to move forward with the MRI and eye doc appointment soon.
I couldn’t believe it. Leukemia in the eye?
And what if that wasn’t even it? What if it was a brain tumor and pressure being placed on the eye forcing it to sag or look droopy. What if it was something worse? Another disease? Would I lose my eyesight? I was being told things I didn’t want to hear. It was happening all over again.
That’s why I couldn’t share this with you–my committed readers– yet. I wanted to get the MRI done and learn more about what this was. I needed to know, before scaring people, especially if it turned out to be nothing.
NOW, we were shifting our focus from my miserable aching body with a limited range of motion (due to GVHD) to the possibility of a cancer relapse or something worse. Of course, planning these appointments and getting the results looked at take time, so this took about two and a half weeks to figure out.
Once the MRI was completed and looked at my the specialist, they saw a tiny thickening or infiltrate of the medial rectus muscle behind my eye (see image below).
The oncology docs weren’t sure what this meant so I went to the specialist.
The eye doctor pulled up the MRI and showed Klay and I what it looks like in the mind and behind the eyes of me–there are some strange thoughts that go on up there.
“This is not leukemia,” Mr. Eye Doc stated.
“Leukemia would be very noticeable on here. And although you have a little thickening here—very, very minimal thickening like 1.1mm—this is really an unimpressive MRI,” he scoffed.
Of course, he meant that in terms of what he was looking for there wasn’t much to see. NO LEUKEMIA!!! YAY!
We asked what it could be, and he gave a BS answer like if you’ve always had a saggy lid then normally it stays that way. Hey, dickhead, I haven’t always had a saggy eyelid. Why the F do you think I’m coming to see your ass for?
That’s what I thought, but I said something, lame like: “I haven’t always had a saggy eyelid.”
He proceeded to show us some white stuff right up behind my tear duct and upper part of my nose. He pointed to the white stuff, “This here is, well, it’s snot. You have some mucus stuck up there that could be putting pressure on your eye muscles,” he said.
I hope this means I don’t have to get sinus surgery again. We all know how the first one went. (If you don’t know, click here to find out).
So, after talking with him and my oncologist, it all came back fine–no official cancer relapse. However, I do still have pain and trouble with my eye, and I’m supposed to see the eye doc next week. And, I’d like to go to an ENT to see if they suck out the snot. I know, I paint some lovely imagery.
The Cancer Relapse Outcome
But Dr. B seems to think right now it’s all related to the weakness of my muscles from GVHD. My left side is definitely weaker than my right and the eye that droops is, in fact, on the left.
The good thing is the eye doc said we could fix the lid later if things don’t improve via plastic surgery. As long as you give me them drugs to sleep, you can try to fix my lid. I meant to mention, if I got a boob job it might help out with my balance, and a facelift would definitely help me with my neck pain. Can I get a cancer discount? I mean body’s been through some shit. Let’s make it look better! Not too much to ask.
I don’t think they are going to buy that though.
Now we are back to focusing on GVHD of the muscles…and no cancer relapse in my body!
I guess you could say “EYE am thankful for that,”
PS. Double vision and computers are always fun, so if none of this makes sense, then you really know how bad my eyes are! Please share this cancer relapse story with your friends or on Facebook, Twitter, or wherever. Just share, please!
Learn more about Graft Versus Host Disease here.