Trying Out New Medications Doesn't Always Have a 'Disney Ending'


Today I was approved for a new medication and I’m elated…and terrified. After too many years, too many meds and too many hopes, I’m trying to go into this with a sense of “cautious optimism.” Will this work? How many doses will it take? Will this be the “magic bullet” to finally throw the lupus beast into the word I only whisper…remission?

Five years ago the decision was made that my lupus was progressing to a point where we needed to treat things more aggressively, and a more heavy duty chemotherapy agent would be needed. My beloved rheumatologists sent me to the most cutting-edge lupus research center where they would have access to the most up-to-date dosing treatment plans.

As I met with the kindest, most human doctor, he laid out all of the risks of this new medicine, Cytoxan. Words like “increased risks for bladder and other cancers,” “hair loss” and “nausea” flowed but I signed all papers, shocking the new doctor with my usual dark humor in these situations – cracking jokes to dispel my fear and discomfort. But a desperate woman will cling to any piece of driftwood when she is drowning and if this meant there was a chance of beating the lupus, I would take the risks.

Once a month for sixth months, my husband and I would wake up early, drop our children at my dear friend’s house, drive over an hour into Philly and prepare for the six hours at the hospital infusion center. Cytoxan is such a toxic drug (it says it right there in the name) that there are bags upon bags, hours upon hours of fluids and other medications that must be administered before and after the actual drug to protect you.

I had been given good advice to get a chair “near the bathroom” (best advice ever) since all of that fluid means lots of trips to the bathroom. Remember that dark sense of humor? Well, every time I needed to use the facilities I would entertain the nurses and others with my rendition of “pole dancing,” a.k.a. boogying with my IV pole as I always had some music playing.

For the actual Cytoxan administration, I had to give it a “theme song” (I’m a musician – occupational hazard). Since we were in Philadelphia, I decided to use the “Theme from Rocky.” Each month when it was time to start the actual Cytoxan portion of the infusion, I would play the music and positively imagine the meds punching out the lupus. Each time we’ve added a new lupus med it’s received it’s own theme song. It’s just something I do. We all have coping mechanisms. Dark humor and theme songs help me.

EJ, my husband, and I had a ritual where he would get us lunch from one of the food trucks outside of the hospital. We knew I’d be nauseated for the next few days and it would be my last good meal for a while. We read, watched movies, talked, laughed and passed the time together. Together, as a team, we faced this battle, praying this would keep the monster at bay, since there is no lupus cure.

The nausea usually hit about 45 minutes into the return trip. The next few days involved a fatigue unlike any I’d felt before. Each month, the effects were worse, the impact greater. In August I went to set up my classroom. After a short period of time there ended up putting me in the hospital, the decision was made that for the first time since I’d started teaching, I would not be in the classroom in September.

My hair thinned dramatically so I cut it short. I put on a lot of weight, making me quite angry. Exhausted, physically distorted and miserable, I soldiered on because I believed this would help me. This new med would be the one to return me to some semblance of the life I used to know. My children needed their mother back. My husband deserved a wife who was a functioning partner. I missed my students, my classroom and teaching!

If this was a Disney story, this is the part where everything comes together. The meds work – the lupus goes into remission. There’s a fabulous montage set to some up-tempo 80s hit of me going back to work, rejoining my life, losing the weight, growing back the hair and running a 5K for lupus research. Throw in furry woodland creatures to make me a fabulous dress for the ball scene with my husband and I’m in!

But life isn’t a Disney movie. It was a slow return. Returning to work was exhausting. I would get home and fall asleep on the couch at 4:00 p.m. It took four years to lose most of the weight I’d put on, only to play “Taper Tango” with the Prednisone and gain some back when the doctors had to raise my dosage. Some of the hair grew back but the top remains quite thin and those damn squirrels do nothing but dig in my trash. Worst of all, remission was not in my cards. After all of that, I had about four “good” months and things went back to the new normal.

So here we are again. About to embark on a new adventure, a new medicine, a new chance. Benlysta, the first official lupus drug, has proven to be a “wonder drug” for so many in the lupus community. I’ve done my research, I’m part of the online support community. I’ve signed the scary paperwork about all of the risks with my usual barrage of dark humor jokes. I’ve given it its theme song. I have to have hope – you can never give up hope. But I’m a little more cautious, not pinning all of my hopes on “Benny” as we’ve dubbed the med.

If I’ve learned anything from the fairytales and Disney movies of my youth, it’s that sometimes you have to kiss some frogs to get your prince.  So…Benny…are you my prince or just another frog? I guess we’ll just have to wait and see.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via BrianAJackson.

TOPICS
JOIN THE CONVERSATION

Related to Lupus

Woman holding a puzzle piece above nearly completed puzzle.

The Missing Piece of the Puzzle That Lupus Has Stolen From My Life

Living with lupus is a bit like having a puzzle with a missing piece. You may not notice initially, but when you start to put it together, you realize it’s not quite right. Maybe you push the thought of the missing piece out of your mind for a while, but as you near the end [...]
seven-inch scar down a woman's knee

Holding Onto Hope Through the Battle With Chronic Pain

When I close my eyes I envision a vibrant, fair-skinned 26-year-old woman. A woman with blonde hair, sparkly bright blue eyes and an unforgettable, warm, beaming smile. She is dressed in a colorful dress. She is loved by all, always smiling and has this tremendous ability to fight adversity. When I open my eyes I [...]

I'm No Longer Keeping My Feelings About Lupus Bottled Up

Hold, hold on, hold onto me ‘Cause I’m a little unsteady A little unsteady – “Unsteady” by X Ambassadors How much physical pain can one person handle? How much is too much?When does the brain decide to open up the flood gates and let out all that pain bottled up inside? How do you stop [...]
woman sitting in an office chair holding coffee and looking out the window

6 Ways I'm Taking Ownership of My Lupus

What helps me to approach my disease more positively is accepting it as just another part of me – as valid as my messy hair, my legendary clumsiness or my unconditional love for pizza. It deserves to be addressed and given its own space, and these are some of the ways I’m getting to that. 1. Learning about lupus. While [...]