I used up all my creativity for the night on my previous post. But I’m still awake. Wide awake. So I have nothing but time.
And the purpose of this blog is for me to document my experiences both for you and for me. To help me keep it all straight in my head. In case you’ve never met me, details are important to me. Even the ones that aren’t important to anyone else. So, I feel the need for my blog to reflect the time missing between my post on 2/27 until my posts tonight. Hence the bonus blog post tonight (er, this morning).
So here’s what you missed…
I was able to better enjoy Bullseye Bash because my treatment on 2/27 was a no go. More time to recover from the poison of the previous week. I felt pretty good all of the week following, so I felt very confident about getting my treatment on 3/6. It had been two weeks since my last dose. I don’t want to give cancer any leg up on me, so I was ready to go back to battle.
Today was the day I met with the radiation oncologist. It was a preliminary meeting for him to learn about my case and me to learn about radiation. And most significantly, for him to make a recommendation about radiation. The short version is that he does recommend it (when forced to respond to my “what would you tell me if I were your wife or daughter” question). But he also acknowledges it needs to be a team decision and we need to see what my final pathology report says. So, no final decisions were made, but it’s looking like radiation will be in my future. If so, it will follow 4-6 weeks after my first surgery. It will be daily M-F for six consecutive weeks. Six months later, reconstruction. That’s where we left it.
Much to my surprise, my NP walked in the exam room with my labs only to tell me that they didn’t really look any better than they had the week before. Huh? I was supposed to get my big combo dose that day–Carboplatin and Taxol. Not going to happen. My onc was in a meeting out of town, so she was trying to catch her to consult her what to do. She felt like I wouldn’t get a treatment at all that day, but wanted to confirm. My heart sank. Right when they were about to remove the tube from my port, she came back in with slightly better news. Apparently, I’m not an anomaly. The study that brought me to Carboplatin in the first place included many others who had the similar occurrences with low counts, missed doses, etc. So, I was going to receive a treatment after all, but no Carbo and only half Taxol. Disappointing but better than nothing. They put me on antibiotics, restricted me from fresh fruits/veggies and sick people.
Becca was in town all weekend with me, and I was prepared to feel really good with so few chemicals flowing through my body. We set out to breathe some life into my guest room that has become her second home. We were limited by my low counts, but still fit in some shopping (with lots of hand sanitizer). We were really busy and active all day, even though I was starting to feel some weird side effects I hadn’t yet felt on Taxol. Much less on a half dose of Taxol. Much less on a week following no Taxol. What I thought was going to be a non-event turned out to oddly be the most side effects I’d had to date on Taxol (soon to lose this ranking by the following weekend). I had lots of soreness, reminiscent of Neulasta days but not quite as severe, shortness of breath, muscle exhaustion and just in general a hard time moving much. Even still, we stayed very active all day (even though Becca did the lion’s share of the labor) and had a very productive day. She now has a super cute, mostly complete guest room to stay in, instead of a storage/wrapping/nothing room that just happens to have a bed in it.
When she left Sunday night, we were both drained. I woke up Monday in a terrible fog with a wild headache. I blamed it on overdoing it and the stupid time change. I went to the office that day but the fog never lifted. I barely made it til 5, an hour which normally means I’m just getting into the thick of my day. I came straight home and went straight to bed. Tuesday was much better, which was a good thing because Wednesday was a travel day in preparation for an almost full week of travel coming up the next week for an acquisition at work. Acquisitions equal back-to-back meetings and long days. Wednesday I felt great, and I made it to my treatment on Thursday with improved lab results and a new chemo schedule.
Five treatments left. Only one of those will include Carbo (I previously incorrectly thought I had two more Carbo). My next (and last) Carbo is scheduled on 3/27 and chemo is scheduled to end on 4/10. I met the sweetest lady who was there for her first AC treatment that day. She was so anxious but so positive. Very talkative. So I stayed awake through the Benedryl and talked to her about dogs, the missing Malaysian airlines flight, Journalism (we both share degrees in it) and anything else to distract her from the red poison entering her veins. She paid me the best compliment by telling me she couldn’t believe someone so young as dealing with this, that I had to be somewhere between 22 and 25. Gulp. She was shocked to hear I’m less than 3 months away from the big 4-0.
Ugh. Not a good weekend. Very, extremely fatigued and light headed. Never left my bed. Literally, I went to bed Friday night and other than using the restroom or getting food/drink from the kitchen, I never left my bed. If I tried, I became dizzy and an extreme exhaustion took over my body. Monday was worse. I assumed I’d be fine. I was planning to leave town for 3 days of acquisition meetings. I needed to pack, get ready for work and get out the door. I woke up and walked outside to check the temperature before I dressed to walk my dogs (which I require myself to do if I feel good enough to go into the office). I stepped on my back deck and was immediately overcome with nausea. That led to exactly what you think it did. Only the third time in this process that’s happened, still a good stat as far as I’m concerned. I immediately got back in bed, set my alarm for an hour, praying I’d snap to it. That led to another hour and another hour. Finally I forced myself to take a shower. That went fine til I was drying off. Everything went black and fortunately I was able to get to my bed to lay down. I knew then I needed to call my doctor. I left them a message, then left my boss a message (still convinced I would travel two hours to these meetings later that afternoon). My doctor called back and asked me to come in for labs and fluids. Reality set in and I knew I likely wouldn’t be running these meetings I’d been working on. Thank God for awesome coworkers and a supportive boss. I was off the hook thanks to them, and further forbidden to attend even if I thought I was feeling better. The fluids did make me feel better.
I was able to work from home Tuesday at my kitchen table (not my bed) and felt more human every hour. Wednesday I worked in the office. Which leads me to today, Thursday (technically it’s Friday but being that I haven’t gone to sleep yet, it’s still Thursday to me).
Treatment day! Labs were improved so I got my Taxol. I was able to work when I got home, then mom and I ran errands. She went to bed and I’ve been typing my blog posts for the last four hours waiting for sleep. I’m scheduled for fluids tomorrow morning so I’m praying for a better weekend. I so want to feel good and not waste away my weekend in the bed. But we’ll see! It was really sad in the lab today. The gentleman next to me was very sick the whole time he was getting treatment. I don’t know about you, but throwing up is not something I want anyone to see or hear, much less in an open room slap full of 30ish people. He was so sick he didn’t care, but it was an awful feeling to not be able to help him. He was given fluids and taken great care of by the nurses, but I felt so, so sorry for him. It put my bad weekend into perspective.
That leads me to today. It’s 4:29am and I’m still wide awake. Think it’s time to try to go to sleep and prepare for a busy day tomorrow (today). Ok, goodnight.