“Chemo, Cold Capping, and Other Adventures”
(A long update, grab a cup of coffee!)
In early August I started Ixempra, an infusion chemo for Stage IV breast cancer. My prior treatment of oral chemo, Xeloda, that I was on For six months was no longer as effective as seen on my PET scan in July. Since 2015 this is my third time on infusion chemo. Yesterday was my second cycle, and I’m pleased to say that Ixempra is going really well. The side effects are mostly fatigue, muscle/bone pain, some nausea. My infusion is every 3 weeks. It works out that I have usually one week of feeling sick, and two of feeling pretty well. Even the “sick” week, God has allowed me to fulfill my mommy tasks, make it to church and work and function pretty well. I attribute this to God’s grace, but also many people who love our family so well and help out in big and small ways (our parents, close friends, our church Body). We are grateful to be surrounded by people who love us very well.
I frequently get asked when the end date of this chemo is. The answer is tough- I don’t know. In this stage of the disease the plan is not as clear as earlier stage cancer when I had a clear beginning and end point of treatment. We will take decisions one scan at a time. I completely trust my medical team and feel confident in their care.
My next PET scan is scheduled in Houston on October 18, and I will meet with my MD Anderson oncologist- Dr Layman- with results October 19. In the meantime I’ll have a CT scan here in Columbia September 7.
This cycle of infusion chemo, we’ve been led to try out a newly FDA approved treatment called “cold capping” which reduces the chance of chemo hair loss by freezing the scalp during the infusion, restricting scalp capillaries, preventing the chemo to get to the hair follicles. I had heard of this before but never seriously considered it until I met women at MD Anderson last summer from around the world who had kept most of their hair during chemo. The primary reason i was compelled to explore this was for the sake of my children. They are very negatively impacted by my hair loss. I’ve completely lost my hair twice and it is a constant reminder to them that Mommy is sick. Especially Samuel, my tender hearted boy, is affected with anxiety and worry when I don’t have hair. The treatment is done with a machine called “Digni-Cap” which is a tight cap that pulses below freezing water over the scalp during the infusion. It’s painful for 30 minutes and then my scalp goes numb and it’s just more irritating than anything. If it works it will be worth it and I look forward to getting the word out about this cutting edge opportunity that few people know about. So far I haven’t had any hair loss, but most hair releases after 2nd treatment usually so the next three weeks will determine if it is working. If not, I’ll be disappointed but I trust God will help us navigate that with the children again as we have in the past.
As far as other adventures, I’m so grateful that the Lord allowed me to feel very good all summer, making special memories with my children. We bookended our summer with a vacation to Litchfield Beach thanks to some very generous people, and a family trip to NYC- showing my children the city I love to much (this was a dream trip I’d looked forward to for so long). Making memories is very important to us in these days and we are grateful for opportunities like this.
This children are settled into school and thriving at their new school, Ben Lippen, making new friends and I’ve enjoyed attending chapel with them and getting to know and pray with other moms with children attending school at this very special place. There are many reasons for the school change, but none because we were unhappy at all in their previous magnet school, CFK. That school and the family loved us so well the three years we were there and established a solid foundation and love of learning for Sam, Selah and Hannah.
Thank you for your continued prayers for me and our family. We are grateful beyond what words can express! (… and cheers to you for making it to the end of this long update!)