Last week — like so many of the ones that came before it — was something of a disaster for me.
But between the rage-filled phone calls with angry nurses, the sleepless nights and the increasingly-high fevers, there were a few moments of unbridled optimism.
They eventually went away and proved hopeless, but they were there, and I basked in them.
After I got the results of last week’s colonoscopy and upper endoscopy, I told my doctor I no longer had any interest in joining a clinical trial. I was on board to begin the Humira injections and I was willing to start ASAP. (“Willing to start” translates exactly to “begging with every fiber of my decaying body to start.”)
So despite my decision being made, I couldn’t seem to get in with my doctor…until Thursday. Going “from a 4 to an 8” (like Ross on “Friends”) still doesn’t qualify you as an urgent case in this confusing medical world. I sent emails, I made phone calls and I remained as polite as possible, but I still couldn’t get in any sooner.
And I continued to get sicker, however possible.
I continued sweating through four outfits each night, I continued having fevers and the pain and discomfort in my stomach just wouldn’t let up. I was in the bathroom probably 30 times a day. I had also abandoned even going to sleep in the bed and instead went straight for the couch each night. You’re welcome, Brian.
Meanwhile, my will to “just keep fighting” was at an all-time low. I hadn’t been to work all week, my social life had completely dissipated and I dreaded being awake as much as I loathed trying to get through the nights.
Finally, on Tuesday, I got my doctor on the phone and said that if he couldn’t see me in his office, we needed to get everything done over the phone. He explained the multi-step Humira process to me:
- He had to write a letter to my insurance company asking them to approve the drug.
- When the insurance company felt like responding, it would.
- The nurse would get a call or a letter (who writes letters???) saying the Humira had been approved.
- The nurse would call in my “loading doses” for the initial injection of the drug directly to the Humira company.
- The drug would get shipped to my apartment.
- When I received the medicine, I would have to make an appointment to come into the doctor’s office to receive training on how to do the injection.
Speedy-sounding process, right? Oh yes, this perked me right up!
I dove back into meltdown and frustration mode, feeling so defeated because everything was taking so long. Each day has been a fight and a struggle, and each day that I had to continue waiting for something immediately became “the worst day of my life” (yes, I do hope I’ll look back on this someday and see it as dramatic, but for now it feels pretty darn accurate).
Fortunately, the process didn’t take quite as long as I had hoped, and I got a little visitor to keep me entertained in the meantime.
I received a call from the insurance company on Wednesday saying the drug had been approved, and then got a call Thursday around 3 PM that elicited my first happy tears in a long time: It was a nurse from Mount Sinai saying she had received my Humira.
I screeched into the phone, I was so excited. “Can I come get it now?!?!” I begged.
Apparently, no. I needed to come in for bloodwork first, to get tested for Tuberculosis and Hepatitis B.
Now, if the doctors and nurses knew I would need these tests, why hadn’t they asked me to come in for them earlier in the week so we’d be ready as soon as the Humira arrived?
Right. Because the medical world is smart and efficient and amazing and it makes total sense.
But the nurse insisted that if I came in right away, which I did, I could get the tests in the lab and they’d have my results by 6:30 Thursday night.
I did that, they took seven vials of my blood, and I was on my way home, finally feeling excited. I was going to get my Humira in a few hours! I was going to feel better within, as people insisted, a day or two! I was going to run on Saturday morning like everyone else! I was going to be able to leave the apartment without having a panic attack!
My change in mental state was astounding.
I tried telling myself not to get too excited, though. I let myself get excited about the antibiotics in February, and then the Remicade, neither of which had any positive effect on my disease. Then, in March, I got all hyper-positive about the steroids, which were a failure, and then I was even optimistic about going to the hospital for the double-dose of Remicade, which also failed me.
So I’ve had my letdowns, but I refused to believe this would lead to another one.
I practically pounced off the couch Friday morning. For the first time in…don’t worry about it…I showered and put makeup on. I called the doctor’s office right at 9 AM, expecting the nurse to tell me to come on down!
Instead, she said she still didn’t have my lab results.
The lab results that were “guaranteed” by 6:30 the night before.
She told me she’d call me when she got them.
By 12:30, I still hadn’t heard from her, so I called back.
She said she’d “check.”
At 2:30, I’d heard nothing from the nurse and I was losing my mind. I called her again. Maybe the lab lost all seven of my samples. Maybe there was a problem. I’d come back in if they needed me to!
The nurse said she still “hadn’t heard anything” and I finally blew up at her. I told her I felt like no one was fighting for me, and no one was telling me anything and I knew that as soon as it hit 4 PM, she’d be going home, with my drugs being held hostage, and I’d have to wait until Monday to finally get the injections. That was unacceptable.
She told me she “couldn’t talk to me while I was that upset.” That totally made me feel better. What a sweetheart.
So we hung up having resolved nothing, but an hour later she called and said I could come in.
It was finally time.
I was going to feel better.
Unsurprisingly, the nurse did not want to be my best friend when I arrived. I explained my frustration to her, but she gave me a lecture on how I ruined her day because all she does at her job is fight for me, but OK. Agree to disagree I guess. I don’t know what she does all day and I’m a bitch.
Then she explained Humira to me a bit more and we got started.
The initial dose — the “loading dose” — contains four shots.
I had watched a ton of YouTube videos of people giving themselves the injections to prepare myself. I’d heard that the shot itself doesn’t hurt (the needle is teeny tiny and it’s inside a pen, so you don’t even see it), but that the medicine burns as it goes into your body.
I’ll take a 10-second burn over everything else I’ve been dealing with. Bring it, Humira pen.
Pause: I should have named this post “Hit Me With Your Best Shot.” Hindsight…
The nurse did the first injection in my stomach with me standing up. She said some people prefer to be standing and it turns out, I am not one of those people. I immediately felt a bit sweaty and light headed. I asked for water, sat down for a bit and was ready to move on. She did the second injection with me comfortably seated.
Yes, the medicine burns. Yes, the shot is slightly uncomfortable. But it’s over fast, and I just kept telling myself, “This is how I’m going to feel better.”
I did the next two shots myself. The first one went well, and on the second one I managed to suck my skin up into the needle with a little suction action. My bad.
And then it was all done.
The first time I got Remicade, I felt better within a few hours, so I expected this to be the same way.
But by the time I went “to bed” Friday night, I felt no improvement. As I tossed and turned and ran for the bathroom all night, I still didn’t feel any change.
And on Saturday morning, as I sat in my fourth pair of pajamas instead of my shorts and sports bra, I again basked in my disappointment that my “miracle drug” might take a little longer than I’d hoped.
I did make it out of the apartment on Saturday, which is a pretty big deal. Brian and I got brunch and then sat in Central Park for a long time. My happy tears at this point had turned back to sad tears as I watched people run and bike by from my perch on Bernie’s Bench at Engineers’ Gate.
I made it through a movie without any drama — Brian wanted to see Jurassic Park in 3D and since he’s been so painfully nice to me throughout this ordeal I agreed to go. Also, he kind of demanded that I go because I had never seen Jurassic Park and therefore I had “been denied a childhood.” Admittedly I thought the movie was pretty good, albeit terrifying. WTF, Velociraptors?
Now it’s Sunday. Everyone is running a marathon or a half marathon. And I’m still on this damn couch.
I know I should be optimistic now more than ever. I have four shots of immunosuppressing juice flowing through me, and it’s going to work at some point, right?
And I shouldn’t be worried about this, right?
I’ll probably run again. I just have to work on making my way around the block first…
IF YOU’RE A HUMIRA-USER AND WANT TO TELL ME ABOUT HOW WONDERFULLY FAST IT KICKED IN FOR YOU, I’D LOVE TO HEAR IT! If you are someone who tried Humira and it didn’t work, best to keep quiet for a little while.