Chemotherapy Isn't Just For Cancer Patients

One week ago today I found out that my immune system is literally trying to destroy my body. When my doctor called and told me that I am suffering from Ankylosing Spondylitis, I asked her to please spell it. I had never heard those words before and had no idea what she was even saying. Since then I have read article after article, watched tons of videos, and joined several groups where I am able to interact with other people that struggle with this disease. At this point, I feel like an expert on AS, even though I know I've only hit the tip of the iceberg of this incredibly rare, complicated and inconsistent auto-immune disease. 

Now that I know so much about AS, it is evident that I have been dealing with this foe for many, many years. I think some of my first symptoms started in high school or college. My back injury in 2009 was probably the trauma that got my immune system going full speed and it never has stopped.  The past 3 months or so, my immune system has really started wreaking havoc on my body. 

I feel so blessed to finally know what is happening in my body and to have a doctor that is validating all my symptoms. My doctor and I decided on a treatment plan yesterday that will hopefully get my pain under control and slow the progression of this nasty disease. She said several times that this isn't an opponent we want to play around with. The treatment is a little intimidating for me but it has to be aggressive to work. 

I had no idea that chemotherapy was used for anything other than cancer. Apparently, it was discovered that chemotherapy was beneficial for AS because of a patient that also had cancer. The chemotherapy used to fight the cancer was also helpful against the auto-immune disease. So now, chemo in pill form is given to AS patients. I will be taking the pills on Wednesday nights and recovering on Thursdays and Fridays. Hopefully, Saturday-Wednesday will be pretty "normal" for my family. (Please pray that things will be as normal for my little ones as possible. I don't want them to be worried about their Mommy or to feel burdened by my illness. My momma-heart is more worried about them than anything else. Please also pray for Bryan. As the sole provider for our family, he has enough on his plate. Please pray that everything we need will be provided and that he would be able to enjoy being home with me and the kids even when I'm not able to help him much. Please also pray for peace and joy to fill our home and that things will go smoothly as we get adjusted to all of this.)

I will also be starting infusion therapy in a few weeks, once my insurance approves it. This will mean going to Duke every 2 weeks to start the loading doses of a drug that will slow the progression of the disease within my body. After the drug is introduced into my body I will start going every 6 weeks for the infusions. The chemo pills and the infusions could potentially be life-long treatments. Sometimes the immune system gets smart and starts to recognize the drugs and attacks those as well. If that happens, the treatment will have to change.

I'm going to answer the questions I know you're asking in your head right now---Yes, the symptoms will be the same as they are with cancer patients, just not quite as severe, hopefully. I may get very nauseous and sick, very tired and achy, and yes, I will probably lose hair but hopefully, the loss won't be too significant. After a while of being on the chemo my body will start to adjust to it and the symptoms will be less. For some people that takes a few weeks and for others it takes a year or longer. (Please join me in praying that it happens fast for me!)

I'm a little nervous about starting these treatments but I believe God lead me to this doctor and gave her the wisdom to recommend what is best for me. It could take up to 6 months to feel the full effects of the treatment but I'm much closer to feeling better than I have ever been before so I'm ready to tackle this! AS often fights back and is hard to get under control. I have met several people from around the world who have been struggling to find a treatment that works for them. My heart aches for them and I pray they will find relief soon. (Please pray that this treatment plan is successful for me---these specific drugs have pretty good track records!)

I've suspected for a long time that something terrible was happening in my body but this treatment really puts that into perspective for me. I wish now that I had shown myself a little more grace all those days that I felt terrible. I wish now I had stopped pushing myself so hard and spent more time resting. It wouldn't have changed the fact that I have the HLA-B27 gene in my body but it would have helped me cope with the day to day struggles of my body attacking itself. I see this journey as a chance to start truly start listening to my body and making self-care a priority. (Please pray that I will be to rest and relax. I have four kids which makes that difficult but I'm also a busy-body and have a hard time sitting still---just being honest!)

Today I am grateful that I can begin this treatment plan standing on God's truth.  He is fighting for me.  He is in control. He is using each and every difficulty for good in my life and for my family. I am also thankful for friends and family that are praying for me, planning to bring meals on Thursdays and Fridays, and those offering to help my family in any way they can. Those simple gestures mean so much right now. (Please pray that I will ask for help when I need it. I love to serve others and don't often ask for help for myself so it doesn't come naturally for me.)

Tomorrow I start chemotherapy. 
I never, ever thought I would be typing those words. Fear tempts me but my God is bigger. He reminds me over and over that He built me for this battle. It might not be easy but I've already been given victory because of the One who loves me. (Please pray for steadfast faith and unwavering hope.)

Thank you so much for your prayers💗💗💗