It’s time for a medical update! Buckle up because this last month has been a roller coaster. 

Some of you may remember my ER visit on September 1st, where I had severe left sided pain and was fairly vague in my Facebook update after (P.S. we still don’t know what’s causing the pain and it hasn’t gone away). The reason I was being vague was because on the CT scan the radiologist found multiple lesions all over my pelvis (I knew about 2 of them and those had doubled and tripled in size and several new ones showed up), along with a few spots on my liver that were not there the month prior. The CT result said the lesions looked metastatic, so they were concerned it was cancer. I saw an oncologist two days later who scheduled me for a PET scan, and also scheduled me to meet with the oncology surgeon to discuss biopsy of the liver spots. 

My PET scan thankfully came back clear showing no areas of concern. I met with the liver surgeon yesterday who wants to do an MRI of my liver to get a better look at the lesions and then decide if he wants to do a biopsy or just watch them. I followed back up with the oncologist today who was happy about the PET scan, but he wants to go ahead and do a biopsy of one of the lesions on my pelvis just to make sure it isn’t cancerous. That way if it comes back benign we can know definitively it isn’t cancer.

The oncologist also wanted to go ahead and do genetic testing on me to find out my cancer risks since we have various cancers in my family, so I got that bloodwork done today and will follow up at the end of October to get those results. 

My oncologist has said “off the record” from the get-go that he doesn’t think it is cancer. He thinks that I may have systemic mastocytosis, because it can cause these lesions and is sometimes misdiagnosed as MCAS because they’re very similar and both cause issues with elevated mast cells. So that will be where we look for answers once the biopsy and genetic testing come back! 

And finally, I will be having surgery Monday to get my port placed! I will be getting a Life Port and the oncology surgeon will be the one to place it. I am so excited to finally be able to get hydrated again! My cardiologist has already set up for home health to come twice a week to give me fluids as soon as I’m ready with the port. The first 3-4 days after surgery I’ll be very sore and will not be able to lift anything or raise my arms, so please pray for my sweet older children who will be taking care of the brunt of things next week, and for my sweet toddler children who are going to be very confused as to why they can’t climb all over me. 

Overall, this last month has been filled with a lot of prayer, waiting and trusting the Lord. Regardless of the path the Lord has placed me on, I pray that I continually suffer well and bring glory to His name through it all. The oncology waiting rooms are always filled with the sweetest, most positive people who aren’t afraid to talk about the goodness of the Lord, and there is definitely a lesson or two to be learned there! 

Please join me in praying for my procedure Monday. While this is a fairly routine procedure there are always risks associated with any surgery and especially when they’re accessing one of the large veins going into my heart. Apparently one of them is something called a “dropped lung” which I refuse to Google because it already sounds scary enough 😂. My EDS also adds to the risks of not only surgery, but the possibility of infection and issues with maintaining the port as well. Please pray the surgeon can successfully place the port with no issue or substantial bleeding, that my pain can be easily controlled after the surgery, and that ultimately the port is able to be the gateway to adequately hydrate my body again with no infections or issues. I greatly cherish all of your prayers and will keep everyone updated as things progress. ❤️