June 22, 2018
Another busy week.
The Radiation Oncologist (RO) last week suggested that I go back to work for a while because radiation fatigue wouldn’t be noticeable for about a month. So… I did. I’m not mentally ready to go back to work. Any illusions anyone has that post-surgery recovery time is spent relaxing need to be exorcised. I’ve had more medical appointments in the past 6 weeks than I’ve had in the last 6 years. I’m not joking. There was something almost every day and usually multiple things going on on one day. Having to go to radiation every day for 6 weeks is enough of a mind fuck. Adding all these other appointments to that is getting overwhelming.
Fortunately, I had the weekend to get out and away and not think too hard about any of the upcoming radiation treatments. I took my sister and her friend out to see Seattle. We went to Pike Market, over to the Peninsula and up to Mt. Rainier. I haven’t really been able to get out and do much road tripping like I used to since probably last May or June. I know that by August, I was so anemic I couldn’t drive an hour and a half without stopping for a nap. So getting out this past weekend was a little bit of a test of my stamina. I was happy with the results.
After a full weekend of touristing, I had a crown replacement scheduled on Monday afternoon. It was scheduled for 2-hours but became a 3-1/2 hour adventure. It took the dentist a full 2 hours just to drill the old crown off. Apparently it was made of zirconium, which is a really hard material. After that, she cleaned up the cavity that was starting to form and got the tooth ready for a new temporary crown. When I left her office, I looked like I had a stroke. My sister amusingly gave me the test for stroke on our way to dinner. I’m not sure I passed.
I took my sister and her friend back to the airport Tuesday morning and went back home to work. I was able to stop by the office on Wednesday to let some folks know I was coming back for about a month, and that if I felt good at the end of July, I’d skip the leave. On Thursday I was able to rebuild a part of my home computer lab – something I’d been trying to do for a while and hadn’t been successful. I think it was just because I had the time to dedicate to it this time that it worked.
Friday was the Radiation Dry Run. I brought a bunch of questions with me to the appointment. I’d been trying to find unscented soap with no alcohol or oils in it and had been so far unsuccessful. When I told her I’d found that unscented Ivory and Aveeno both still had perfume and botanical oils in them, she was surprised. The search goes on.
When I was there for the planning sessions last week, they told me that I need to stop taking anti-oxidants during the treatment. So I brought my current vitamins with me and we sorted out which ones I could still take and which I needed to put on hold. Next week I need to ask about diet – lots of fruits and veggies are high in antioxidants and if I can’t take supplements, I need to know how much I need to alter my current diet.
Next week is the PET scan. I have to go full protein diet for that. I’m really not a fan of diets where I can’t eat normal food. I end up craving all the stuff I can’t eat. It sucks.
We also talked about the various things I can put on my skin after treatment – like Aquaphor, clear aloe vera and calendula cream. She let me in on a secret – there is a cream that really works, but it’s a little expensive – it’s called My Girls cream. I may have to give that a try. I have Aquaphor and use it for a lot of things. I haven’t been able to find aloe vera that doesn’t contain alcohol yet. There was a less expensive version of calendula cream at Rite Aid that I might try.
I’m also now down about 12 pounds from last month. My jeans are starting to feel baggy again. I wasn’t too worried about it until I saw something about the radiation plan being set up for my current weight and body type. Crap. I’m getting really tired of things I see as being good being turned negative. So next week I’ll be asking for a nutritionist again.
In the post-chemo realm, there wasn’t much change from last week other than dropping another 2-ish pounds in the last week. The neuropathy is still there. I still get tired faster than I used to, but it’s getting better. My chemo brain is still there, and about the same this week.
What did change this week was in the realm of treatment plans. I put together an email for all 3 of my doctors last week regarding the Level 3 node under my pec. After consulting more with the medical oncologist, I decided to add the Perjeta back to my maintenance chemo. I don’t know if or how much it will help with the cells running around my body, but I want to do all I can now to stop this disease because I don’t want to go through all of this ever again.