Happy 2025! I was hoping to put the bad luck of 2024 in the past and have a fabulous 2025. 13 days in to 2025, and I can already tell you that is NOT going to happen! Let me go back and tell you how 2024 ended first!
I had my first immunotherapy treatment on December 11th. I went in for bloodwork, an appointment, and then two infusions. It went pretty uneventful and of course Nick was by my side. The following week I began my 10 treatments of radiation in my right humerus. I had treatments everyday except Christmas Day and New Years Day. My last radiation treatment was on January3rd. The boys went with me to celebrate my ringing the bell to signal the end of my radiation treatments.
|  |
I had my 2nd immunotherapy infusion schedule for Monday, January 6th. I had been not feeling well between Christmas and NYE’s. I was experiencing nausea, vomiting, fatigue, weakness, etc. I contacted my Dr and her office sent me in zofran. That helped a little. I knew something thyroid-wise was going on. I decided to be stubborn and try and make it to my Dr.'s appointment on the 6th to be seen. They draw blood before I see the Dr. so I knew they could straighten me out then. I may have been a bit naive on how bad I was actually feeling. Nick told me I wasn't making any sense when I was talking and he was begging me to go to the hospital. I could not walk up the stairs at this point because I was so weak. My appointment was at 7;15am so I told him I could just make it. We drove the next morning about 40 minutes away to my cancer center. He dropped me off out front so I could check in and head to the lab. The normal “would you like a wheelchair?” that would annoy me so….got a resounding YES! They took my blood work and vitals. Blood pressure was NOT good. Low blood pressure? Really low, like 70/40 low BP.
The lab had already spoken with the doctor by the time we got up there for that appointment. Now, if you know me as well as you think you do…what was the blood work?? Good? Bad? Normal? Mix? My blood tests were worse than my blood pressure. Sodium at 122, Cortisol untraceable, etc.
The Dr’s office and lab talked and sent Nick and I on a one way trip to the E.R. They were waiting for us and we went through Triage. I immediately got an ER bed and room. I was there for about 18 hours until they moved me to an ICU step side room. I was seen by everyone over the next 4 days. Was this caused by the Dec 11th infusion? Bingo! The medicine that was supposed to save me from cancer ended up attacking my endocrine system. Adrenal Glands…gone…..burnt to a crisp. Which now means my body does not produce cortisol on its own. I now have an autoimmune disease known as Addison's Disease. (Click here for more info)
I will say they solved this mystery fairly quickly. Luckily we chose the hospital that would know how to figure it out. On Tuesday, I had severe brain fog and was twisting my words, letters, etc. it was the worst stay. I could not communicate. Scared me to death. Woke up on Wednesday morning and it completely resolved. They decided to keep me until Thursday to wean me over to pill steroids. I was getting them intravenous the whole time I was in there. I asked that they release me as early on Thursday as they could because I wanted to make it to Jackson's basketball game that night. I felt bad that I had already missed his Tuesday night one.
Not going to sugar coat this one. I scared my family bad on that one. I owe them for that. My final diagnosis was acute adrenal crisis (Addison disease) and acute kidney injury. My bloodwork bounced back really well and I am in much better shape than I was!
I have a ton of steroids I am taking now. I have added an endocrinologist to my every growing team of physicians. I will see her the end of this week. She is going to work to get my steroids down to a minimum dosage. I have added two new prescriptions to my arsenal, fludrocortisone and hydrocortisone. I'm am not too happy with these meds. I am so swollen. I can't get my pants buttoned, my rings on, my legs are twice their size, and my prosthetic doesn't fit!!! My regina is too swollen so my socket is too tight. It's not big enough for me to comfortably wear an older one. So I'm trying to figure something out. I keep hoping the swelling will go down but no such luck yet.
My oncologist and endocrinologist are going to get together and come up with a new plan for me. We aren't sure if I am going to return to immunotherapy, bypass that and start the chemo pill, or go in another direction. So the plan is still in the air and they are going to see what direction we should go next. I will take all your thoughts, prayers, good luck, good vibes, etc. When I get updates about what is happening next, I will let you know!
Love,
Cort
Comments