It is 232 am, MY time.
Yesterday, I had my second loading dose of Remicade. For those of you who don't know what Remicade is:
It is a type of chemotherapy that is infused via IV into your body over a period of time, in my case, four hours.
It is called a TNF-blocker. TNF is a protein made by the brain. In Crohn's Disease and Rheumatoid Arthritis patients, our bodies make too much of this protein. This excess protein then attacks our bodies - with RA patients, it attacks the joints, sending the body into an inflammatory state. With Crohn's patients, it attacks the digestive system, mainly the intestines, sending the body into an inflammatory state.
For 9 years, I have been a Remicade patient. The only time I ever went off the drug was to attempt to get pregnant and have children. Giving all the praise to God, it worked, and we were able to produce two of the most beautiful, brilliant, HEALTHY babies EVER. And then, last year, a decision was made by the trinity (me, Billy Two Swords, and Dr. Hank), for me to stop taking the Remicade.
Here is why:
My immune system is fucked up. Hence, I have Crohn's Disease. For whatever reason, genetic, viral, environmental factors, who freaking knows, my immune system is on a mission to DESTROY my digestive system. No one knows why, it just is. The Remicade is an immunsuppressive. Meaning, it tells my immune system to stop working. Therefore, I am susceptible to a whole host of germs, infections, some I had never heard of before I got them: MRSA, pancreatitis, gastroenterities, pneumonia, strep infections on my FINGERS. Yeah, Heather Fallon doesn't a cold. She gets pneumonia. I had contracted too many secondary infections as a result of my suppressed immune system, that the trinity made the decision to stop the Remicade. After I stopped, I had surgery to correct a perianal fistula (which the Remicade was helping to heal, as well as settling my intestines into a milder state of disease). This seemed like a brilliant decision at the time. The surgery was a success (with the exception that I no longer have full bowel control, but whatever, I'm living with it. Most importantly, I'm still living.) And I then entered a symptom-free state of remission that I had not known in nine years. I was so healthy! I was a new person. And then in January. It was back. And it had moved. To my duodenum. And I was told that Remicade was my ONLY 'hope'.
In addition to having an already misbehaving immune system, my body REJECTS Remicade. The one time that I need my immune system to NOT work, to just shut up and be quiet and don't fight......it decides to attack the Remicade with a vengeance as it is being infused into my body.
Let me describe for you the vengeance that occurs EVERY SINGLE TIME I have a Remicade infusion.
Yesterday, I was pre-medicated with the following meds and doses (this might not mean much to some of you, but trust me, it is an ABSURD amount of medication):
50mg of Benadryl
100mg of Solumedrol
The nurse began to infuse the Remicade. I fell asleep.
EXACTLY one hour and 15 minutes later (like clockwork, happens EVERY F'in TIME),
the reaction started. It wakes me from a dead sleep. It begins in my toes. Like iodine dye that is injected into your body for imaging tests, it's that kind of feeling, that it goes through every vein in your body, except this isn't just a warm funny feeling. I've never had electroshock therapy before, but I think this might be pretty close. It is as if electric currents have been injected via my toes, then crawl up my legs, into every part of my body. By the time the current gets to my chest, my lungs feel like an elephant is sitting on them. Then I start to turn beet red. My face turns the color of a cooked lobster. I started screaming for help. Sometimes I break out into hives. Sometimes my arms and legs start to flail. Always I am sobbing and moaning. My blood pressure starts to bottom out, and my pulse goes through the roof. And then I start to scream, "MAKE IT STOP! MAKE IT STOP" "HELP ME" "HELP ME" "Dear God, PLEASE make it stop". This all takes place over a period of SECONDS. And it is the most terrifying experience. The feeling that something is taking over your body, and you have absolutely NO control.
The nurses were wonderfully quick, attentive, and ready. They immediately stopped the Remicade and increased my fluids. I got re-dosed with the following:
50 more MG of Benadryl
I did not go back to sleep, as most would have expected (including myself)
In the past, at this juncture of the treatment, the reaction usually stops and the infusion proceeds as if nothing happens. Not yesterday.
They re-started the Remicade.
Not more than 15 minutes later, I was in terrifying agony once again. They stopped it, increased the fluids and gave me:
Versid usually sends me into twilight la-la land.
Nope. Not this time. Still wide awake.
They re-started the Remicade.
The palms of my hands broke out into hives. Oh, I have gotten hives before, but never in the palms of my hands.
They gave me more Versid.
My throat started to close up.
They gave me another 100 mg of Solumedrol.
At least I was able to swallow again.
Still having the electrical current raging through me. Still having hives on my palms. Still crying and sobbing and saying, "I hate this, I hate this, I hate this, I am NEVER doing this again."
We are now three hours into an infusion which would ulitmately take six hours on this given day.
Even though they said they had given me the maximum of Benadryl, they went ahead and gave me one more 50mg dose of Benadryl. That is a grand total of 150 mg of Benadryl. I think most people would sleep for a week if they were given that much Benadryl. Oh how I wish I could have. Or just have slept through the remainingly anagonizing three hours.
It didn't have much effect.
I told them to FUCK it. Crank that damn Remicade up as high as it would go, and get me the Fuck out of there. In true Heather Fallon one-day-at-a-time fashion, I analyzed my situation. Yes I was in misery. But I knew, as soon as that drug was in me, and the infusion was OVER, I would feel fine. I just had to get through two more hours of absolute hell on earth. I looked at the bag of Remicade and calculated the two hours on my own. I started counting the drips. I knew I wasn't going to die, it was merely an issue of suffering. I wiped my tears and breathed deeply. I gave it up to God. Then it became 90 minutes. Then it became 60 minutes. I asked the nurse to call Billy Two Swords to let him know what was going on, and why I was running so late (it was kinda hard to talk with a swollen tongue and throat). I asked her to call my ride, my BFF K, and let her know what was going on, so she would know what time to pick me up.
And I prayed that God would get me through the next 60 minutes, because there was no one else or thing that could.
I got through it.
And here I am at 230 in the morning writing about it.
A drug that may save my life.
A drug that may kill me.
A drug that may give me lymphoma.
A drug that costs $15,000 per dose.
Why, you ask.
Why, do you do this?
It sucks big, hairy, buffalo balls, but dammit, it works.
I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT
But dammit it works.
"Suffering produces endurance and endurance produces character and character produces hope" - Romans 5:3-4
God is good. All the time. All the time. God is good.
Four more weeks til the next one.
And not going to think about it until I get there with an IV in my arm.
That's how I roll.
One day at a time.
I have a little girl's birthday party to plan.
I have no-school summer activities to figure out.
I have a lengthy vacation road trip to coordinate.
I have cookies and cupcakes to bake.
I have church volunteering to do.
I have a God who needs to be glorified.
I have a bedroom renovation that will require my assistance.
I have a household to run.
I have a husband to snuggle with.
I have a dog who recently became blind in one eye who needs me.
I have lots and lots of hugs and kisses to give.
I have people who are counting on me for love and laughter and friendship and fellowship.
I have an example to provide, to all those who are suffering.
I have a life to live.
"There but by the grace of God, go I." - John Bradford