Treatment #11 Update

Sorry for the delay in posting but you will see from this post, a lot has gone on so this will be a long post.

Treatment Update: As we were getting ready to leave for Mayo, the sky opened up and the phones/TV started going off with a tornado warning. I told my mom we would just wait it out and I called to Mayo to tell them we would be late. They understood. So we waited thirty minutes and the rain let up. We loaded up the car and left. As soon as we hit the highway, there was a wall of rain. Unfortunately, since we were traveling the same speed as the storm, we were in it for the entire trip. Two hours into the trip, an 18-wheeler came barreling down in the lane next to us, came right up on a car carrier trip, and jumped into our lane. Mom slammed on her breaks and fortunately the car behind us was far enough back. It was so scary. The trip to Jax took us four hours (normally this would be two and half to three hours). We have never been in that kind of rain for an entire trip before, it was so scary and stressful.

 We got to Mayo and they did my bloodwork, which all came back in the acceptable ranges for treatment. When the nurse took my vitals, she was shocked by my pulse. She looked at us and said, "Wow, your pulse is really high." We said, "Yes." She asked, "What are they doing about it?" We said, "Nothing." She was shocked. I met with the doctor the next morning. He continues to be proud of my fight. He asked if I was up for this based on how rough the last treatment was, I said yes as long as what we are doing is working. At the end, he did tell me to complain more. In other words, in between treatments let him know what is happening to keep in the loop and do not think of it as complaining. This is a new treatment so he is very interested in all aspects. I thought we were going to be able to start having treatment locally but he wants to do two more treatments in Jax, including scans in six weeks to see how everything is going. 

Then Mom and I had three hours to spend waiting for treatment. She had a surprise for me....new bracelets for both her and I to help fight this fight. I should start wearing all my jewelry for weigh in to keep my weight up. 

       

This treatment was only one drug, so it was quick and our car ride home was uneventful. Post treatment was much better this time. My fatigue continues to grow but I know that is because my body is fighting hard so it needs to rest. My cats are helping me rest!

      

Cardiologist Update: I had a echocardiogram last week. My local doctor wanted to get a baseline. The plan was to do the echo on Wednesday and then meet with him on the 26th. I went to the echo and then came home and felt horrible. I have figured out that when I have to get up and going out of the recliner too fast and too early, it really upsets my stomach. I also do not think it helped having to take a lot of deep breaths and hold them because my breathing is so compromised, especially in a mask. When I got home, I got sick. Then Thursday, I got a call from the office that said my doctor needed to meet with me to talk about my test. I saw him Friday morning. My heart function has declined some since October. He wanted to talk to my oncologist and put me on some different meds to see if we can improve my heart function. Not the news we were hoping for but it is what it is so just one more thing to stay on top of.

Warning Rant About to Begin

Vaccine Update: Mayo has told me at the beginning of January it would be 2-3 months before they will get to patients like me. I can accept this because everyone at Mayo is super sick and many are older. We are all in the same in the boat....unfortunately, it is more like the Titanic than a Disney Cruise ship. My local health department is not taking any more people on their wait list. My local general doctor is not putting any more people on their wait list, although I can call each week to see if this changes. I called my local autoimmune doctor who told me to contact the health department or my GP to which I responded, "They are not putting anyone on their wait list so I guess I will just die of COVID or never leave my house. Have a nice day!" I know, a bit dramatic but seriously!!!!! The new statewide waiting list has no place to identify why you should be a priority so I know they will look at my age and prioritize me at the bottom of the list. It astonishes me how poorly our country and state have handled this public health crisis. Clearly, politics is more important to the people making decisions then keeping people alive. I realize that I am not the target audience to re-elect those making these decisions but should I be sentenced to death over that. I do not think so. It is very clear as I watch those around me get vaccinated that it is the luck of the draw to get through the waiting lists, get on a list, and more importantly get a shot (or two) in the arm. I am not upset with those who have been fortunate enough to get vaccinated, everyone should be vaccinated regardless of age, race, or health conditions. I am upset with the politics behind all of this and how it is playing out. I pray everyday that it turns around and the vaccines become plentiful for everyone to get one.

For tonight . . . I'm just sayin' XOXO