On to the next Step

Well,

It is very difficult to know where the best place to start this post is so I apologize if it jumps around a lot. I was not sure how to put the words together correctly to allow for even flow as so many thoughts and emotions have been running through my mind over the past 24 hours. Today has been very physically and emotionally draining for me. The past few weeks I have flown low on the radar because I have had an increasingly difficult time with the radiation. The Thursday of Thanksgiving, I began to experience headaches and transient ischemic attack-like symptoms that ended up having me placed on a steroid medication. I was able to complete another week of treatment and then Wednesday I had a TIA event during radiation and had to have my steroid dose upped to 3 times a day. Things were going well until about Sunday, when I began having more frequent TIA episodes (and a slight histamine reaction to the decadron). Monday the decision was made to hold off on radiation and up my dose to four times a day with the steroid and I had to be monitored for increased intra-cranial pressure.

Monday I sat down with my mom and my husband and spoke about "how we were going to finish the last couple of radiation visits". As the conversation continued, I came to the conclusion that I was most likely going to have to forego the last couple of treatments because it was getting to the point where I couldn't get out of bed and function like a person anymore and I felt like if I were to receive anymore radiation, it might just kill me. This decision was not made lightly, but I felt very at peace with it. I know my body better than the doctor's and I feel like sometimes radiation oncologists get caught up in the numbers and forget about the patient.

I literally spent all day today at the doctor's office and had to have a repeat MRI to see about increased ICP. I spoke with my nurse about my "reaction" to decadron and she mentioned I was likely having a histamine response and that taking claritin or benadryll may help to reduce the reaction. So far, so good. I have not experienced the reaction after taking the dexamethasone near to the extent I was before. I hope this trend continues.

I am still convinced that I am having ICP issues because the TIAs are happening on the right side of my body instead of the left (where we would expect to have issues). I spoke in depth with my radiation oncologist and hema-oncologist and staff of nurses and despite the fact that my radiation oncologist wants me to finish out the last two sessions, I have decided not to continue with it. The hems-oncologist argued a great point that there are no studies out there that show any significant difference in not doing the last few treatments. I have had the equivalent of 4800 cGys/48 Gys(radiation units) and all the research I am seeing online shows that for my type of tumor, it is typical to have treatment ranges between 4000-4500cGys or 40-45Gys, which makes me even more confident in my decision to discontinue.

The thing we have to remember about radiation is that is based on "guidelines" from case studies and not everyone fits into the same box when it comes to treatment. I'd like to make it very clear that I am not stopping treatment completely, I am simply ending my course of radiation a few treatments early. I still have a very long road to recovery ahead of me, but I am confident that I will not be able to recover without further issue. It will likely take me a few weeks to normalize as radiation side effects can last 3-4 weeks after treatment, but I fully anticipate that I will be feeling better in a few weeks and be able to get back to a more regular schedule.

There were a lot of tears shed today, but they were mostly tears of relief as I feel I am headed in the right direction and things will soon start looking up. Thank you for your continued prayers and support and I am so glad to put this chapter behind me.