The rollercoaster continues.
Tom had the correct PET MRI on Monday and the radiologist report on Tuesday came back and said the area of concern appears to be treatment effect and not new tumor growth. So very good news.
On Wednesday morning I was working at my desk in our shared office and Tom walked in and then I heard him breathing funny and rapid and turnes around and he was standing there jerking in place back and forth. I was able to talk to him and make eye contact but when I asked him to respond his mouth opened and no words came out. I timed it and made sure he stayed upright. After 30 seconds it stopped and he sat down and started talking normally. He remembers everything I said and even me trying to check my watch to time it. He’a been wearing a glucose monitor and his blood sugar was normal. He had no warning. It was so terrifying and upsetting and we are definitely frustrated because there is no obvious cause. His doctors increased the dose on his anti-seizure meds. He started chemo again last night. Today we met with his doctor and he now thinks it could possibly be a focal seizure from the swelling but can’t be sure. He thinks since we increased the dose the chance of another event is low. We are both less confident. We all decided driving and biking should not happen for awhile and while his doctor said the chance of a large seizure is even lower I am having a really hard time letting him out of my sight. He’s already annoyed by his new shadow and hates my driving. His doctor thinks the area will continue to improve and the swelling WILL go down. We will check him again in mid July.
I had a really hard time holding my breath at my radiation appointment a few hours later after his seizure and it took a long time to do treatment. Today was even worse and I started crying and they decided to not treat me today. They said we could try again tomorrow with the snorkel apparatus. I asked if we could still try today with it and they were able to work me back into the rotation and after some practice we were able to do treatment with the snorkel. I absolutely felt like a weak failure but my team was so compassionate and patient with me, my radiation oncologist brought me a donut and Tom and I met with a social worker after and chatted. My entire team since my tumor was first found has been nothing short of amazing they have worked so hard to make sure I finish treatment in time to go to Zincon. I had already reached out to my counselor earlier today because I am starting to feel the physical manifestation of all this stress on my body. The talk with the social worker helped and hopefully I can connect with my counselor soon. I am 1/4 done with my radiation now. One cool thing is each of the five days I have been there someone has finished their treatment. Looking forward to it being my turn!
If I am being honest it feels like we were thrown into a pit in August when Tom’s tumor came back. It feels like every single time we have made a little progress and got a hand or foothold to climb out someone has come and kicked us back into the pit again. Tom keeps getting back up and I feel like I struggle more to do the same. I have to keep believing things will get better but everytime I feel that way it is snatched away shortly after. So it’s hard but we are still climbing. My brain knows Tom will be okay but my heart needs to catch up. I know we are not alone in the pit so thankful for that too.