August 1, 2018
I started getting my blood draws done at the Bellevue clinic to help with how long I’m sitting in the infusion center each week. There are probably 25 patients that are brought in and roomed each time I come in, and that means I’m anywhere from #1 to #25 on the list of patients to have blood work done every day. A lot of days they’re already behind because of other hospital lab work that needs to be done. That means that I’m there a lot longer and not able to move forward with the infusion until it gets done. This way, it’s already done and the results are back so that they can get me started on the fluids first thing.
This week was more or less like the last. I got my radiation treatment done at 7:30 am and headed downtown for the 6 hour infusion appointment. I was again able to work from the room, which was good.
Over the weekend, I went to the Bellevue Art Fair with a friend. We were originally going to go to an ice cream festival in Seattle, but what sounded awesome on Friday at 86 degrees, didn’t sound as awesome Saturday morning. Plus, I woke up tired. I figure it’s a combination of the chemo, not sleeping well due to the steroids I have to take for the chemo, and the radiation.
A friend and I had talked about going to an ice cream festival this past weekend. When it was 86 degrees at 9 pm on Friday, an ice cream festival on Saturday sounded like a great idea. At 9 am on Saturday, ice cream for brunch wasn’t that appetizing. When I got up on Saturday, I’d actually forgotten all about our plans. I hurried up and got ready and headed out. On the way, I realized that I was really tired and didn’t know if I could manage riding the bus downtown and back in the heat of the day being that tired. I decided to grab her at the transit center and try for Plan B, whatever that might be. When I got there, I explained that I had no idea what kind of energy I had in the tank for the day. This was the first time I’d woken up feeling exhausted since starting both the radiation and the chemo. Luckily, she had alternate ideas for plans. We decided to head over to the Bellevue Art Fair. It was held at the big mall – Bellevue Square. They put the exhibitors in the parking garage, where everybody’s out of the heat and the sun. For being in the upper 80s outside, it was actually pretty comfortable walking around. We saw some interesting stuff. There’s a new *thing* with kinetic motion machines. They were cool to watch. I saw a number of landscape photographers there. It’s not a life that I think I’d want if I couldn’t do what I’m doing now for a living. I needed to take some breaks during the day, and by the time we got back home, I was wiped out.
About halfway through, I realized I needed to sit down and rest a bit. I also needed to eat something. We finished looking at the artwork and went in the mall to sit in the AC. She found something to eat in the mall, and I had seen a Vietnamese place with a booth outside, so I got some satays and we walked around a bit more. We decided on the way home to check out a few things at Gilman Village in Issaquah. The restaurants were mostly open, and surprisingly, a lot of the shops were closed. We found a kitchen store, a recycle store and the quilt shop open. We checked them out, and then I suggested we find one of the restaurants with a patio in the shade and have a beverage before going home. We decided on Flat Iron Grill. Each of us had a cocktail. I nursed the crap out of mine. When we were done, I took her back home where we met up with her hubby and had a snack. I was so tired it wasn’t funny. I was able to make my way back home and flopped on the couch. I ended up taking about a 3 hour nap before slogging my way up to bed.
Some TMI to follow – skip this paragraph if you’re squeamish and don’t like poop talk: Sunday night and Monday were difficult. The Cisplatin causes both constipation and diarrhea. Sunday/Monday is when it flips. As time has gone on, it’s getting harder to control it. I spent several hours going back and forth to the bathroom, and once everything was “cleaned out,” I felt better. That said, it’s hard to get the fluid levels back up after losing so much so quickly. It made the blood draw on Tuesday a little difficult.
Between the neuropathy and the ringing in my ears, the Oncologist decided that we could and should drop the dose down by 20%. I’m good with that. The side effects pretty much suck, and this one has more lasting bad effects than some of the others.
Being on Cisplatin is a lot like being back on Taxol. The neuropathy is back. My nails are kind of shredded again. My skin is dry and gross. There’s some impact with chemo brain, but it’s not horrible. There is ringing in my ears, which we’re watching because Cisplatin can cause hearing loss. My energy level is dropping some. Eating is a challenge again due to the weird taste in my mouth. There are a few things that work well, so I’m sticking to them until this is done. Drinking is mostly okay. It’s hard to drink 4-5 quarts a day most days. I can usually do 2-3 for sure. The Real Lemon packets are helping.
I have 3 more weeks of this and radiation to go, and then I will have just the Herceptin and Perjeta maintenance chemo doses every 3 weeks. There will be a new PET scan 3 months after the end of radiation. Please say some prayers that this treatment did the trick.