We just got back from all my follow up and next step appointments at MD Anderson in Houston. Here are the things we learned:
-The tumor had started to grow into the bone at the skull base.
-While the MRI and original tissue samples indicated the tumor was completely removed, one of the samples that was tested further was found to have a minute amount of cancer (they called it a speck) so that margin was not clear.
-My tumor was grade 3 (out of 4) which is more aggressive, faster growing cancer.
-They had to remove my olfactory nerve so I will never smell again.
Because of these things, they are recommending both radiation of my sinus area and lymph nodes and chemo, as well. The chemo is radiosensitive and supposed to help the radiation work better.
The radiation will be 5 days a week for 6 weeks. I will most likely develop burns to the skin receiving the radiation, though it may show up in the later weeks. My throat and mouth could also have side effects including loss of taste, sores/redness in the mouth or throat, dry mouth or problems with my teeth.
The chemo will be 2 cycles but each one is 3 days each. I have to decide if I want to get a picc line. I have to have 2 types of chemo. One of them, cisplatin, is known for severe nausea, possible hearing loss and kidney damage. The other, etoposide, I will have to have 3 days in a row for each cycle and a couple of the side affects are hair loss and fatigue. They are pretty strong drugs and I'm not gonna lie, I am so scared about taking them. But I am more afraid of the cancer returning. I do not want to have to do another surgery like I just had. I'm still healing from it and it has been so much harder than I anticipated.
Radiation and chemo are set to begin on Monday, November 9th. I will be moving down to Houston for the 6 weeks of treatment on November 7th. Thankfully, my sister will be staying with me for most of the time. As of right now, my last scheduled appointment is December 23rd. So, I am hoping to be home just in time for Christmas. The process of finding a place to stay was extremely stressful. The Hope Lodge which is a free option will not let me know if they even have availability until 1 week before my treatment so we had to secure an apartment, which thankfully we have done. Unfortunately, it is extremely expensive. The way they profit off of vulnerable people who have no choice is actually sickening when I think about it.
We will have to travel to Houston one more time before I move down there. I have to go back next week for another 3 days to get a mouthpiece made and do all the scans to get the radiation mask made. I also have to see an audiologist to get a baseline for my hearing due to the chemo.
Originally, I was feeling ok with moving down there, thinking the treatment would only be radiation of my sinus and wouldn't be too bad. With all the information we've learned through the week, I am overwhelmed, exhausted and not in the greatest state of mind. I am mourning the loss of smell, as silly as that may sound to some people. I can't believe I will never smell coffee or garlic or my scentsy bars again. I am also still not 100% healed from the surgery so that is annoying, as well. Even though I know Jesus is and will be with me, the next two months are going to be rough and I could use all the prayers I can get. I will need to rely on Him more than ever to get through it all.
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