Rituxan Dose 1: Decadron Hijackery

I lived! I did not die of PML or any other of those other scary things related to Rituxan that have been weighing on my overly cautious brain for the last month.

My mom drove me to the heme/onc office for the first time because we didn’t know if I would be able to drive home after the treatment. I didn’t want her to come in with me because I didn’t want to have to entertain her and it takes like an entire hour for them to get anything set up anyway. The infusion was supposed to be 3 hours. What I did NOT factor in was the fact that they also had to give me IV Benadryl and Tylenol and IV Decadron (mo steroids, mo problems) prior and that obviously tacked on more time. So this whole IV fluids thing actually took 5 hours. Not including the hour in the beginning for them to take my blood, count my platelets, and hook a brother up.

Some amazing things happened.

1) I did NOT take my prednisone at home because I am SO SMART and therefore did not get double dosed with steroids yesterday (because that would have been absolutely horrible.) Good call on my part.

2) My platelets actually went up! I would say on their own, but that’s not just true. Probably related to the steroids, but it only took them 5 EFFING WEEKS to kick in. I went from 54k last week to 90k all of a sudden- which is amazing. Because of this I was finally allowed to taper my steroids from a hellish 40mg to 30 mg beginning today. We decided not to hold the Rituxan and just go through with it because it is assumed that my platelets will drop when I taper from steroids anyway. Rituxan is a potential cure, steroids are like a perpetual treatment and pain in the ass. Go, go rituxan go!

I was my regular old funny self during this whole thing. My mom met my hematologist and I showed her my rapidly expanding neck roll. I was like, “Yo, we need to get this shit over with. I used to be a very pretty person. The clock is ticking. I can’t be hideous like this forever. Less steroids, more Rituxan.” She laughed. Thank god I found a hematologist just as aggressive as I am.

First they gave me the IV Decadron and I swear 10 minutes in I started to get ravenously hungry which was terrible since I only brought one granola bar with me and was about to be there for 5 more hours. (They gave me extra steroids to try to counteract any kind of potential reaction.) They also gave me Tylenol to try and stave off any pain I might feel from it.

Then they gave me IV Benadryl (again, lets try to not let the patient have a bad reaction to this) and I got pretty much immediately sleepy, kicked my mom out, and slept with my teddy bear for a good hour. But then I kept myself awake (well, it wasn’t hard because the Decadron was going full force at this point and making me hyper) plus I wanted to be awake in case I started feeling funny. I didn’t come all this way to maybe die in my sleep here, ok?

Yeah, I did bring my teddy bear to the clinic. I think that’s completely understandable when you’re a little scared and planning on taking a nap, ok? Bite me.

About six other people next to me were getting Rituxan too, and I finished first. They slapped an awesome hot pink bandage wrap on my IV site and I felt like the Pink Power ranger. By the way- best IV site ever. Always go for the front of your forearm near the inside of your wrist. Way less annoying and painful than the top of the hand or elbow.

My dad picked me up and I only had a minor headache and some nausea… but what happened next is insane.

I was STARVING like I had never been starving before. I texted my mom to get me a log of pepperoni and a cannoli during the day. For breakfast I had had 1 cup of tea, 1 banana, and 2 slices of cinnamon toast with cream cheese because I wanted to fill up for the long sit in the chair.

The following is a list of everything I ate in the three or so hours after I returned home in addition to what I had already eaten for breakfast: (Trigger warning for any of you with eating disorders, sorry, should have mentioned that earlier.)

2 apples

2 oranges

1 six pack of peanut butter crackers

2/3 of a log of pepperoni. Literally almost the entire thing. Oh. My. God.

1 corn on the cob

1 cup of wheatberry salad

1 steak pinwheel with spinach and cheese

caprese salad

A hunk of cheddar cheese

1 greek yogurt

2 pizza hut breadsticks

1 large cannoli

1 neopolitan pastry (which I don’t even like!!)

I’m relatively sure there was more, but I can’t remember. I could not stop. It was like the hunger that you get when you are stuck at an amusement park in line for hours…. but it just would not quit. Even though I knew I was eating a massive amount, I couldn’t stop shoving it in. It was a never-ending hunger. It was the Decadron! I am not excited about future Mondays because I know this will happen again. And no one understands what steroids do to your brain unless you’ve been there. They affect the hunger/satiety part of your brain and it just tells you that you are still hungry, no matter what. My belly was visibly swollen and painful and I still kept eating. My family was yelling at me and it was like it did not matter. That is the most annoying thing. People telling you not to eat when you feel like that. Like LISTEN- I GET IT IM GAINING WEIGHT AND I DONT CARE. From someone who used to regularly starve herself and was 102lbs, seriously, shut the f*ck up. I get it. And I don’t care. This is only temporary. I can and will work this off. Just leave me alone while I am absolutely miserable on these effing steroids or I will not hesitate to literally rip your face off and eat it on my way back to the fridge.

In direct comparison- this is what I ate today-

1 Greek yogurt, 1 bowl of bran cereal, 1 cup of coffee, 1 banana, 1 orange, the rest of that pepperoni, and a hunk of cheese. That’s it. And I’m not hungry. (Nor should I be since I literally ate a week’s worth of food yesterday.) You just don’t get it, and that’s one of the hardest things about steroids. It is not negotiable. I call it grizzly bear hungry. I cannot stop myself when it gets like that (a higher or new dose). I’m just really happy that I won’t feel like that when the steroids are out of the picture, and I know my face and my body will go back to normal. It will. I swear.

But, in contrast- this is what my face is looking like today- THE BIGGEST AND PUFFIEST it has been, especially because of all of the IV fluids they shoved into me yesterday (steroids also knock down your kidney function- so I barely pee these days, I retain pretty much all the water I ingest, and you can tell.)

I think I’m still cute even if I’m lookin like a heifer today. The exterminators came to our house (don’t even ask…) and one of the guys asked me if I attend the local high school despite the fact that I was fully dressed (if you call that picture fully dressed) with makeup on. I was like, “I did…. ten years ago.” Hahaha. That’s an assumption I regularly get from the general public, that I look 18, but with the moonface I guess it’s even more out of control.

So then during my 10,000 errands today (4 of them involving prescriptions) I stopped at Ulta for some brow makeup- since my eyebrows are driving me nuts and I feel like if I start makeupping them maybe it will take some attention away from my hamster cheeks (ha!). While the girl was doing my brows with two different products so I could compare, I showed her a picture of my normal face. I was like “LOOK! I have a normal face, usually. This is not my real face! I have a real face under here somewhere!” As if it matters.

And then I went to Target, dropped of some prescriptions…. waited for them… and walked out and got in my car without picking them up. Because I have steroid-dementia.

But overall, I’m really happy with how the infusion went yesterday (minus the Decadron hijackery because that was highly unpleasant) and I’m really glad I decided to jump on it. I finally feel like I’m on the road to getting my life back and I really hope the Rituxan puts me in remission… and does it for A LONG ASS TIME. I haven’t even started living yet, I’ve been so preoccupied getting through school for the last three years. I feel a little bit more in control, which I like. I did not work my ASS off to get to this point in life and have it all fall apart, and I’m ready for it to put itself back together… and it think it’s finally happening. And in that respect, the weight and the face seem like very, very minor obstacles. Losing 25lbs when this is all said and done seems like the easiest thing ever in comparison to the mental, emotional, and physical f*ckery of the last 5 weeks. Oh, and I had a great response to the Rituxan in terms of side effects. I expected to have a fever and be in serious pain… because most people are… but really I only had a minor headache and nausea yesterday, and this morning I woke up with excruciating bone pain in my hips/femurs/knees but shockingly two Tylenol and some walking around did the job. So happy. So, so happy.

Things are lookin up!

Oh, and here’s a pic of my eyelid for shits and giggles. My new frankenstein scar, so I can always remember what a complete klutz I am. It’s cute how you can see Every. Single. Stitch. Mark. This will never go away, it’s just how I heal. (Another Ehlers Danlos Syndrome perk!) Just in time for Halloween!