This week was a bit of a roller coaster. I love roller coasters. Usually. Most of the time. If it involves Disney World. Not if it involves my emotions, or my family.
We went into the week really excited about our family photoshoot with Captured Love Photography. We had tried to plan a shoot before Brandon went into the hospital the first time this fall, but our plans were a little derailed and then after that, with surgery looming, we decided to put it on the back burner, because it wasn’t a priority financially. I’ll write more about this later but, for now, just know that we were able to schedule a date for a shoot, and the fabulous Erica was able to capture these beautiful moments of our family.
These two boys are our world.
I love that almost 10 years later, we still giggle together.
This baby makes my soul happy…
Oh, only the heartbeat of this girl each day…
I’ll share more of these gems in another post (they’re really all so good that I am restraining myself from Delk Family Photo Overload for you!) but wanted to share more of our roller coaster week with you.
Tuesday, Brandon went for his follow up GI Surgery appointment and was cleared to begin working again, with the very strong caution to remember that he was only barely 3 weeks post major abdominal surgery. Wednesday, my brave and handsome husband woke to his early alarm, got dressed, and hustled out the door to work. He was exhausted by the end of the day, but managed to make it the full work day.
Thursday, he got up and went back to work again, and ended up having to work late. I was really worried he was overdoing it, so soon after returning to work. During the day, he called UNC and was trying to figure out when to begin his Humira injections, as well as his other injection (the low-dose chemo medication). They arranged for him to come in for a follow up appointment the next day and suggested that his treatment plan would be changing.
Friday,during my lunch break, I drove to Target and Brandon called as he was getting out of his doctor’s appointment. He sounded so discouraged. I knew immediately that his appointment had gone in a different direction than we were hoping. He then proceeded to tell me that his GI doctor wants him to begin Remicade infusions, a drug called 6-MP, and another drug. The Remicade infusions would take the place of the Humira injections, and the 6-MP is another type of low-dose chemotherapy, and the other medication he wants to put Brandon on is for the visceral pain, which is basically like phantom pain, the pain that an amputee might feel on a limb they no longer have. Brandon has been worried over the last 2 weeks because he has felt pain, and thought that he may have another obstruction. Honestly, he was almost panicked over having this pain, and his doctor explained it this way: Brandon’s nerves in his intestines have only felt pain for so long, that that is the only thing his nerves know how to feel. This third medication is supposed to “reset” his nerves, so that they learn how to feel normally again.
Allow me to interject for a moment here… my husband has been in such intense pain for so long, that all his nerves know how to feel… is pain?! Even after the problem is gone, all his body knows is that it has been fighting itself. This thought alone is enough to make me weep. And weep I did. I put myself on mute, listening to my sweet husband recount his doctor’s appointment and then his feelings about it all, during my lunch break, sitting in the Target parking lot.
I listened to him tell me that the Remicade infusions take about 4 hours to infuse, and that he would have to take a half day off of work each time in order to go to the hospital to sit for these infusions. I wept – you know, the big ugly-cry kind of weeping – watching happy people go in and out of Target, and thinking about how sad I was at the thought that my strong, brave, handsome husband would have to strap himself into a hospital chair every other month to sit, weak and tired and defeated, to have a drug infused, on the off chance that it might work. Of course I couldn’t let him know how upset I was, and I had already used 7 Chick fil a napkins to blow my nose and wipe what was left of my makeup off my face. He asked me what I thought, and all I could get out was that I didn’t think I wanted to go into Target. I put the car in reverse, and drove back to work.
We are so discouraged. I’m discouraged for several reasons…
When Brandon was first put on Humira we were told that these types of medications were “use it or lose it” drugs. Meaning, once you get off of one of the medications, your body begins to build up antibodies to it and you can no longer use it because your body will reject it. The surgeon told us after his surgery 3 weeks ago that he was encouraged because it looks like the Humira was working.
So, let’s pause for a minute and talk about this…
Brandon has surgery in August of 2014. Was put on medication for long-term treatment in December of 2014. In January of 2014 Brandon couldn’t take that medication any longer because it made him feel so bad (extreme fatigue and nausea so bad it would wake him up in the middle of the night, and driving for work was absolutely miserable). Fast forward to the beginning of May when Brandon had to go to UNC for another scan (almost ending up in surgery then!) and was immediately put on Humira, and methotrexate was introduced at the end of July. The way we see it, Brandon was not on medication to manage the active Crohn’s for 9 months post his first bowel resection, and therefore the disease had time to manifest and cause another obstruction, then when he was put on Humira (and another round of steroids at the same time, too) it was able to control the obstruction until September. Since his surgeon saw no other places of active crohn’s while he was in surgery, we think the Humira WAS WORKING.
What we can’t figure out is why his GI doc wants to switch medications, and have us potentially lose that medication forever (remember, the antibodies? ^Read above again if you aren’t following). Plus, giving himself injections every Friday night isn’t the most fun thing in the world to do, but it sure beats having to take a half day off of work each time, to go and sit for 4 hours at a hospital, find a parking spot in the crazy parking deck (which he will have to pay for each time), AND pay hospital bills each time in addition to the new cost of this drug, which we were told could be anywhere from $6k-20k per infusion. Let that sink in for just a second. Yep, she told us it could cost up to TWENTY THOUSAND DOLLARS per infusion. C-R-A-Z-Y. Seriously.Crazy.
At this point I’m not even worried about the financial aspect of it all (the nurse is working on insurance and assistance programs yada yada yada, but our God can do anything and $20k is child’s play to him). I’m more concerned about switching medications and the lifestyle change (read: INCONVENIENCE), and how he’ll feel afterwards. Everything I’ve read so far indicates that he will be extremely fatigued the day he has an infusion, and lots of patients have said they get feverish/chills and some have to take Benedryl or other allergy medication to combat the side effects. UGH.
This is such a long post, and I’m sorry if I’m boring you, but I’m writing it for a purpose. I’d love for you to help us share this post in hopes that we get some feedback from patients with Crohn’s Disease that may have been through a similar experience. If you want to help us, please share this post with your friends to see if anyone can give us any advice. Our preference is for him to stay on the Humira and methotrexate and start the medication for the visceral pain.
I’m afraid that if we switch to Remicade and it doesn’t work, then we will have lost two of the biggest/best drugs out there for Crohns because he won’t be able to go back to Humira either.
I want his physician to see him not as just a small intestine that he has to control inflammation in, but as someone’s husband, someone’s son, someone’s father. My heart breaks at how discouraged he has been since his appointment, and I am trying not to show how anxious I am over it all. Tensions are running high and on the way home Friday night, Brandon was going to go to CVS to pick up 2 of the new medications, but I kind of panicked and suggested that we wait to talk with his physician again on Monday, because I just feel so unsettled about this course of treatment.
Maybe we’re all just a little tired, and ready to put this all behind us, but we really need some real life advice. If you can help us spread the word and get some advice from people who have experience with Remicade infusions, Humira injections, or Crohns in general, we would really appreciate it.