Hey y’all! It’s Friday! I’m 7 weeks into my treatment phase although it feels weird to say that because the past two weeks I have not been taking any treatments. I’m still on Keppra to keep seizures at bay, but not much else is happening. Today I went to see my Medical Oncologist who I love because she’s very upfront about what’s happening and she doesn’t play. She hears what I’m saying and things start going into action. So this is where we are for the Medical side of things. Chemo will resume when I start the Optune cap treatment. I will take it for 5 days once a month at a higher dose. I’m assuming as they monitor treatment this will probably change. But for now, this is what is happening.
The Optune will start after CyberKnife so it probably won’t begin for a few more weeks. I mentioned that no one’s contacted me to get another MRI so Dr. A sprung into action and said she would coordinate with the Radiology team. I also told her I would check with them regarding my MRI. She’s also going to follow up with me in two weeks for bloodwork etc. I told her about some of the symptoms I’ve been experiencing lately. Some more the usual short-term memory loss, lots of indigestion especially with acidic or spicy foods. Problems with finding the right words for things off and on. She said that normally happens later. I told her it isn’t happening at an alarming rate, but enough that I notice it.
Like the other day I did a presentation in class and I struggled to find the words which I knew earlier to say what I had to say. It’s as if I forgot how to speak English. Recently I was trying to speak Spanish and although I’m not smooth I do consider myself pretty fluent. I stumble when I speak, but this day I really struggled to find the words. Even at the doctor’s office, I handed the nurse some forms and then a few minutes later drove myself crazy looking for them. Then my daughter reminded me that I already gave them to the nurse. Oy! My memory wasn’t great before we started now it’s just like a sieve. I even neglected this blog a bit because I had a few ideas for posts and then “poof”! Just like that the feeling was gone.
So before I left the Cancer Center, I got a follow up appointment scheduled and the imaging department was notified to make an appointment for my MRI. I’m expecting them to call me early next week so we can get things moving again. I feel like I’m in this hellish limbo and nothing’s happening. I don’t want to stop fighting. I’m not liking this hiatus from treatment. Doctors don’t like to make long term promises, I get that. I just would feel better knowing the timeline even if it’s tentative. Which is what I got today.
Sometimes I think they are telling me in a subtle way but it’s such disjointed information because we’re talking about symptoms, procedures, medications and then I have to ask about FMLA forms that need to be filled out…. then we go off the rails. Today I feel better that things will get back on track. I brought an index card with questions and symptoms written down. We’ll get that MRI, do the cyberknife and then see how we go. I wonder if other cancer patients go through this too. A little frustration coordinating different doctors and the different treatment plans that have to be choreographed.
Just got a call from the nurse who works with my Medical Oncologist. I love her! She was following up about those crappy FMLA forms and had to ask me a couple of questions. I’m just happy that she’s already working on it. I feel lucky and blessed. Little miracles. They come into my life everyday even it means pushing papers so I can take the time off that I need from work. The other little miracle was my boss being okay with me staying home this afternoon. I’m pretty tired from this week. We worked hard as a department and I definitely took on more than usual. Time for the weekend to start! I think I have some paint by number to work on…. hee hee!