I am a planner; I love planning. I have even been known to make a plan to make a plan. Borrowing a phrase from George Peppard’s “Hannibal” on the television show “The A Team,”
“I love it when a plan comes together.”
Conversely, I hate it when a plan falls apart, especially when the plan is thwarted by forces beyond my control.
In March I left the rig and animals in the care of a friend in Houston and flew to Seattle for four days. I had not seen my Gastroenterologist for a few months, and state law requires a face-to-face appointment at regular intervals so the doctor can continue prescribing medications.
My doc and I had already planned to perform my next colonoscopy in September; therefore, I thought it would be a quick in-and-out visit in March. Of course not. Nothing is ever simple when it comes to Crohn’s disease. The doctor wanted a repeat colonoscopy right away; he was concerned about my trip to the emergency room in Tampa in January, worried that Entyvio was losing its effectiveness. I was worried about that, too. In my past experience, the “wonder drugs” that lessen my symptoms for a while eventually stop working altogether. I was especially concerned because last year the doctor allowed me to stop taking Methotrexate, a chemotherapy drug that is supposed to prolong the potency of the drug, but it was making me very sick and my hair was falling out.
Colonoscopies require prescriptions, prep time, and transportation – time I did not have on that short trip. I had no choice – I flew back to Houston and drove Nellie to Seattle.
The colonoscopy was performed a few days after I returned, and it revealed continuing inflammation. (Good news: No polyps this year!) Given my ongoing frequent, urgent trips to the bathroom and the colonoscopy results, the doctor recommended an increase of Entyvio to every four weeks instead of every eight weeks.
I was willing to follow his advice, although I had some misgivings. First, it has been challenging enough to find infusion centers around the country every two months that will honor my doctor’s order. Second, since COBRA coverage expired and I switched to The Affordable Care Act in October 2016, my out-of-pocket expenses have exponentially increased; each infusion costs me over $500 out-of-pocket. Spreading that sum out over two months has been terrible enough for the budget, but incurring that amount every month was going to be financially challenging. Third, and most important, starting with the infusion in December, I feel like I’ve been run over by a Mack truck afterward, and I am greatly fatigued for a day or two thereafter. Feeling that way every four weeks was not a prospect I relished.
As it turned out, the choice was not up to me. The insurance company made the decision. Entyvio has been on the market for two years, which in the scientific world is very little time to accumulate data. The insurance company denied my doctor’s request for infusion every four weeks as “experimental.”
He and I conferred about my options. He could file an appeal with the insurance company, which he recommended. My only other option was to switch to the drug Stelara, which has been on the market for Psoriasis for years but only recently approved for Crohn’s disease. Stelara is administered first via induction infusion, then self-administered by injection in the abdomen every eight weeks.
I was frustrated by my insurance company’s unwillingness to approve the Entyvio infusion every four weeks, but I understood it. That appointment costs between $11,000 and $15,000! I daydreamed about the prospect of a new drug that I could administer myself, which meant no longer searching (sometimes in vain) for infusion centers around the country. Imagine, no more planning my life around an infusion schedule!
But, I was extremely trepidatious about changing drugs. If we abandoned Entyvio, there would be no going back to it sometime later – it loses its effectiveness if not maintained at a therapeutic dose. And, I had prior experience with self injections in the abdomen when I took Humira, and it never worked. Not a single day.
Did I mention Stelara is the last drug approved by the FDA to treat Crohn’s disease, and there are no other drugs left to try after that one?
It took the insurance company two days to reject the doctor’s request to increase Entyvio. His office told me it can take weeks and up to a month for a decision on appeal. If the appeal was granted, it was prudent to get the first additional infusion in Seattle before leaving for the East Coast for the summer. If the appeal was denied and we switched to Stelara, I would need the induction infusion in Seattle before hitting the road.
But, the plan! I was due in Louisville, Kentucky for Kentucky Oaks on May 5 and the Kentucky Derby on May 6.
Boy, was I feeling sorry for myself. I couldn’t believe that, once again, my plans were derailed by my Benedict Arnold of a body and my incurable chronic disease. I just wanted to cry, and I did, a couple of times. It wasn’t so much about the potential of missing Derby; it was the recognition and realization that, as much as I try not to let Crohn’s be the star of my movie, it makes pretty Oscar-worthy cameo appearances on a regular basis.
There was no way a decision would be made on the appeal until after the Kentucky Derby. So, never say die, I set about plotting Plan B, with the help of my friend Rick from Wisconsin, who was meeting me at Derby. God bless him, to save money on flights he picked me up in Lexington where I landed and dropped me off in Indianapolis for the flight home. I was able to cancel my campground reservation without penalty, and Rick’s friends Jed and Heath offered up their extra bedroom, where Rick and his husband Christian were staying in town. No longer driving my hats to Derby in Nellie, concerned about crushing them in-flight, I shipped them to one of Rick’s friends, Pif, in Louisville. A new plan, yes, but in my mind Plan B was a lesser plan. I was pouty about it, to put it mildly.
If your eyes glazed over from all the medical information above and you’re skimming at this point, read this:
Plan B was way better than Plan A!
I had my first proper “vacation” away from Nellie and the animals since moving into the rig almost two years ago. I relied on Rick and Christian, who used to live in Louisville, and their friends, for transportation, and it was so relaxing not to think about directions or GPS or how to get hither and yon. Staying in town at the same house with Rick and his friends, we had time to commune over coffee in the morning and wine at night; if the rig had been in Louisville it would’ve been a half-hour drive each way from the RV park. To top it off, on the flight home the airline asked for volunteers to take a later flight, and I received a $1,500 travel voucher. Given my limited income every bit helps, especially if I continue to fly back to Seattle for additional healthcare when the rig is all the way across the country.
As if the universe was winking, hinting that all things work out as they should, while I was in Louisville I received the happy news that Healthline.com has again named this blog as one of the best Crohn’s blogs of the year!
Two days after I returned from Derby, the insurance company denied the appeal. Faced with the prospect that Stelara might not ever work, and I would not be able to return to Entyvio, which has provided imperfect improvement, the doctor and I agreed that I will remain on Entyvio every eight weeks. The good news is, nurses in every state I am visiting in New England will honor the Seattle order.
As Shakespeare said, “All’s well that ends well.” What a vivid example of John Lennon’s lyric, “Life is what happens while you’re busy making other plans.” While Entyvio has not put me in remission, I am thankful for the improvement it has provided. We will never know if administration every four weeks would have made up the difference. Given the circumstances, there’s no use sitting around pondering it now. And, if somewhere down the line Entyvio stops working entirely, at least we have Stelara in the quiver.
Postscript: Thank you to those of you who wrote such lovely words of encouragement, both in comments and in private messages. It means more to me than you know. A shared burden feels lighter, and I know I’m not in this alone.