Xolair Round One: Complete (And the Story of How I Was Once Spider-Man)

Four months ago, I started this treatment called Xolair, that in theory will help mitigate my allergies. You can catch up on the first time here. But the short version is, I get an injection once a month and after four months, I challenge something I know I’m allergic to and see if I survive. Since one of the risks of Xolair is anaphylaxis, my doctor also has me taking steroids for a week out of the month to prevent anaphylaxis on the day of.

If you’ve noticed that this blog hasn’t been updated much in the last few months, it’s because I haven’t really known what to say. This treatment has put my normal food challenges on semi-hold (finding time between steroids and travel to challenge a food properly has been interesting, and yielded only one challenge: a fourth tsp of peanut butter which went perfectly well). It’s also put my feelings about food allergies into this weird state of confusion. Like, this might be the end of them. THIS MIGHT BE THE END OF THEM. What does that even mean? What does that even look like?  I can’t fathom it, and every time I think too much about it, I get scared that THIS MIGHT NOT BE THE END OF THEM. And I know what that looks like, and I can handle what that looks like, but damn, what a let down that’d be.

However, on this, the day of my last shot before the big challenge, I feel compelled to write. If only to organize my thoughts. Though, with the steroids fucking with me the way they are, I’m not promising much organization.

1. I LOVE how many movies I’ve seen in the doctor’s office. Good Will Hunting, Stand By Me, Mystic River, Dazed and Confused, and Pulp Fiction. I saw Pulp Fiction today and I just never want to do anything else. Movies are good! I want the Xolair to work so that I’m forced to see the rest of the amazing movies I’ve somehow missed (somehow = being too much of a “too cool for school” indie kid who preferred TV and things no one ever heard of, with a soft spot for romcoms).

2. Steroids are fucking weird. My reactions to them are wholly inconsistent. Sometimes I’m awake for days. Sometimes I fall asleep crazy early and wake up every hour exhausted. Sometimes I sleep just fine but have so many thoughts I don’t know which are real and which aren’t. Sometimes my legs hurt so badly I can’t sit normally. Sometimes (today) I giggle so hard I cry at literally nothing. Sometimes I yell at everyone around me about things that are irrelevant. Sometimes, all of the above. Sometimes, none of the above. Every day is different, and especially every month is different. Imagine PMS but more unpredictable. So maybe pregnancy? But the end result isn’t a baby, it’s just sobriety. Anyway, I’m extremely grateful to my family and friends who put up with all of the yoyo-ing, and especially who tell me which of my reactions are me and which are Steroid Cindy. Steroid Cindy is fun in doses (ha, doses!) but she isn’t real Cindy, and thanks to everyone who gets that and helps me get that.

3. I’m eating spinach on July 9. SPINACH. Here’s my relationship with spinach thus far in my life:

As a child, I knew spinach was something Popeye ate but I didn’t.

I would often pick up spinach calzones for my sisters from the local pizza store. Sometimes, they’d give us broccoli ones instead and those were not good. I was never particularly good at picking up the calzones because I couldn’t tell the difference between spinach and broccoli. Both were green things I didn’t eat that smelled funny.

I tried spinach at some point in my preteen years. I ate it cooked, but never raw. I HATED it. I hated it because it would make everything dark and angry, and I’d always feel the need to fall asleep, sometimes clutching my stomach. I assumed that this was a perfectly normal reaction to spinach so I never said anything. I’d read in books that spinach was a food kids didn’t like, so I assumed the reason was because it was dark, angry, narcolepsy-inducing, and hurtful to stomachs. Why should I have been different from all other kids? So I ate my spinach like I was told, and secretly took naps, and that was that. Until one day I threw a temper tantrum about not wanting to fall asleep, and my mother, who knew that spinach isn’t supposed to just knock you out, told me I was describing allergic reactions and that I should not eat it again.

I started experiencing airborne symptoms to all leafy greens around the time I was 15. I believe (and there’s some research on this) that the stench of 9/11 and the pollution that followed increased my allergic symptoms. I am grateful that of all the losses I could have experienced that day, I only lost the ability to be in the same room as salad.

During my sophomore year of college (so 2006 I think?) I had a doctor’s appointment to check out a sprained ankle. I took the train into Boston, got an aircast at the doctor, ate lunch at this great little restaurant downtown while reading a book — god I miss dining out alone sometimes — and noticed that my eggplant sandwich had a spinach leaf in it. Having not had spinach for years, I figured, no time like the present for an impromptu food challenge! (Though I didn’t know the term then). Anyway, after a few minutes, I realized I was getting sick. I was naive and didn’t carry Benedryl on me, so I did what anyone would do — I left the restaurant and got on the train heading to my next destination. The Park Street station never seemed so big. I remember stumbling through the station, gasping for air, and finally making it on the train, completely exhausted from walking and breathing simultaneously. I hopped out of the train at Copley, and called my best friend T from a CVS. I figured she should know I was sick, because you know, calling the person who’s in Ithaca and not Boston is totally logical in an emergency. But really, T is super smart, and encouraged me to buy the Benedryl even though I had to take an escalator up to the second floor of the CVS to buy it, and to buy a bottle of water, too. She told me to take the pill in line before I paid, and not think about stealing. The line was SO LONG. She said that no one wanted me to die in line and that it’s not like I wasn’t eventually going to pay when it was my turn. So, anyway, I took the pills and went to the commuter rail station, where I found the train pulling away as I approached the platform. With a sprained ankle and high on the Benedryl — not to mention woozy from the reaction — I grabbed hold of the conductor’s outstretched arm and jumped onto a moving train. I WAS SPIDER-MAN! Then, I slept on the train. That was the last time I ate spinach. So you can see why I’m scared to eat some now…

The good news is (okay, I’m starting to think I needed to have blogged in these interim months!) is that I’ve noticed a change. I was thisclose to horseradish while grocery shopping after round two and NOTHING happened. In fact, the reason I was so close was because I was able to get close to horseradish without noticing, whereas I usually get dizzy as soon as it’s nearby and then locate it to confirm the dizziness. I wasn’t dizzy, looked for the horseradish and it wasn’t in my eyeline, and wound up leaning over the bin like a regular person while picking out a suitable eggplant. I also was around salad and fish numerous times — sometimes even while eating — and was fine. So this drug might be worth it’s salt. (Literally. The steroids make me crave salt like the opposite of an open wound [A closed wound? This metaphor makes no sense..]).

As a closing thought: the song of the day, per my coworker who heard I’d finished my first round of shots:

 

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2 responses

  1. I can’t say this enough: thank you for sharing your experiences! It is so, so helpful for me to understand what Jacob is going through, will go through, and what the possibilities are in the future.

    Good luck!!

  2. I hope it goes well!! I’m on Xolair- I get it every two weeks. I’m allergic to EVERYTHING! Anaphylaxis to airborne stuff, the full deal. For me, it is not an all or nothing thing. It definitely helps. A lot. But, I still have anaphylactic reactions and partial ana reactions all the time. I have a lot fewer that require epi, and my dermatographia is almost gone. So, try not to get discouraged if you still have a positive reaction tomorrow. It may be that your worst allergies are still a problem, but that some of the other ones have improved. In any case, I’ll be thinking of you!
    Karen

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