This isn’t a blog post, an essay, or a funny story. I feel the need to say this because I have a lot of followers for a lot of different reasons. This started out as a way for friends and family to follow my crazy stories and somehow it snowballed into this big awesome thing. In fact most of you follow me simply because that one time I rubbed a urinal cake all over my face before I realized what it was (and I’m glad to have you all here). But if you don’t know me and aren’t invested in my story or my family feel free to dip out of this post. All this post is going to be is an update on my husband’s recent health. I want you all to still read and to still follow but I also want you to know that the intended audience is family and friends (even those who I’ve only become friends with as a result of the blog). I promise to post another hilarious mishap just as soon as it happens. And so with that here’s what’s going on…
I have posted several things on FB recently that have many of you asking a lot of questions and stirring up a lot of concerns. So I want to take a minute to fill everyone in.
As you know the hubs’ melanoma returned in July and he had surgery in August to remove the tumor (in his right upper chest about 2 inches from the primary tumor). We have begun seeing an immunotherapy specialist in Charlotte, NC (nearly 2 hours from our home) to ensure that he has the best care possible.
Last month he started a new course of treatment called Yervoy. The intended regimen is to get an infusion every 3 weeks for the first 4 doses (so 12 weeks). After the initial phase the infusions are stretched out to once every 3 months for “up to 3 years”. The major side effect of this drug is colitis. If a patient develops colitis they could end up with a colostomy bag or worse die. In fact 5 patients died during the clinical trials. But the benefits of this treatment are proven and we (and our doctors) felt that we could keep close tabs and monitor to prevent anything from getting out of control.
He had his first dose and it was fairly uneventful. However, when we returned last week to get his second dose the lab work came back a little funky. All that means is that he had a “robust response” to the first dose. His thyroid levels were off the chart and the doctors felt certain that we would blow out his thyroid during the course of this treatment. This is also a known side effect of the drug but it is easily treatable with medications so it is not a reason to discontinue treatment. That being said because his levels were SO high they decided to hold his dose for another week.
Over the weekend he began showing symptoms of colitis. I will spare you the gory details but will tell you that on Sunday night we called into our specialist to report the symptoms and he sent us to the emergency room to make sure he didn’t have a perforated bowel. At the ER they did blood work and an abdominal CT which all came back relatively clear.
I called into the specialist yesterday morning to discuss our next actions and they requested us to return to Charlotte. We again made the drive up for more blood work and assessment. They ordered a round of steroids (which will counteract the drug and stop it from working) and set us up for an emergency colonoscopy. They gave us the option to either return today or let him be admitted and spend the night in the hospital. Obviously we chose to come home last night and return today for the procedure.
The colonoscopy came back all clear today and it looks like everything is fine. We were instructed to stop the steroids- which we never even got yesterday but that’s another story. We have another appointment on Tuesday in Charlotte and our assumption is that he will resume treatment but possibly at a lower dose. The good news is that all of these things mean the medicine is doing what it’s supposed to and is working properly albeit robustly. The goal of the immunotherapy is to boost his immune system into hyperdrive and turn on the T-cells (the cancer fighting cells) to the highest level so that they can more efficiently fight the cancer. The side effects come from when the T cells have been too activated and begin attacking his body and his vital organs. It’s a delicate balancing act and one that we must monitor very very closely to make sure we stay out of trouble.
We have the utmost faith in our physicians and feel positive moving forward. We don’t know what the future holds and we are learning to let go of our perceived control in this world and put everything in God’s hands and simply go with the flow. We take things day by day at this point never sure what our lives will look like from minute to minute. As hubs put it “at this point I just get taken to different places and have different things done to my body- I just go where I’m told.”
I appreciate all the concern and prayers that have been offered up and want to assure you we have a wonderful support system in our families, our church family, and the infamous Ms Betty (our children’s caregiver). We are okay and we are muddling through the best we can. I will do my best to keep everyone informed of our ever-changing situation. Just know that our course of action changes from day to day and sometime minute to minute. Love to you all.