I stopped in at the oncologist's office for my every 4 week follow up on Tarceva yesterday. There were two things on my mind leading up to this visit. First, I told the doctor that because I've been having weird right sided chest twitches and occasional left side pains and occasional back pain I'm pretty sure the cancer is progressing on Tarceva. This prompted my chemo nurse to roll her eyes and say, "You are such a cancer patient." The oncologist tried not to laugh at me. The typical cancer patient thing I'm doing is assuming the stupid thing is eating me because I don't have a scan yet after change in treatment to show me that it's not. There is absolutely no objective evidence that the Tarceva is not working. Even on the lower dose I still have a rash on my face, neck and chest. I'm in a great demographic group to get good results from Tarceva. It's just that until my scan on Election Day, I will have difficulty believing that its working. My chemo nurse called me with lab results today to reassure me that my liver function tests are still perfectly normal so I'm pretty sure I'll live until the scan, at least.
The second thing on my mind is that I'm starting to obsess about what next? and specifically that I really don't want to undergo third line treatment that's going to make me feel awful (when we find out the Tarceva isn't working on Election Day, right?). The doctor tried to convince me not to cross this bridge until we get to it but I was insistent. I told him I'm not even sure I'd go through whole brain radiation if I ever developed brain metastases (specifically, more than 3). He said, "Oh, yes you definitely would." And the chemo nurse was standing next to me laughing and saying, "Definitely."
The bottom line is that I guess I'm scared. My healthcare professionals are wonderful because they let me know when I'm being unreasonable but they also listen for the kernel of what matters at the heart of my craziness. They let me know that I'm off my rocker being worried about whole brain radiation, but they are very understanding about my wish not to undergo treatment that makes me feel awful by the time we get to third line treatment. And they gently remind me that it's likely we won't need to talk about those specifics for quite some time.
That's where things stand. I feel fine and dandy. My liver function tests are normal. Chest, abdomen and pelvis CT scans and a total body bone scan are scheduled for Election Day so I'm pretty sure my update is going to be lost in the uproar, but I'll send it anyway.
Hannah's volleyball season ends tonight. I leave for an educational program in NM the day after the scan. It is being a spectacular autumn in New England and we now have a functional zone control system on our HVAC system at home. Robert's recovering nicely. All is well in my world.
Lisa
Wednesday, October 22, 2008
Wednesday, October 8, 2008
What's Up With the Doc 27? - Back in the Saddle Again
It is with much relief that I can report how much better things are this week. I spoke to my oncologist on Thursday and we decided to drop the dose of Tarceva. I skipped Friday because the Pharmacy didn't have it in stock and started 100 mg/day on Saturday. It was the most amazing thing - the nausea and malaise just lifted magically at 3 pm on Friday. I had some mild nausea on Saturday but started getting up to eat exactly an hour after I take the Tarceva on Sunday and have had no nausea since. The diarrhea is now easily controlled with moderate doses of Imodium. I stopped the Minocycline on Thursday. The rash started to blossom again yesterday so I restarted the Minocin and so far so good.
On top of the good Tarceva news, I have nascent eyebrows and eyelashes! Really, all my hair is growing back everywhere to the point that I actually shaved yesterday. I had accommodated myself to the hairless look and so was mildly surprised at how giddy seeing the new hair made me. Silliness, but there it is.
Robert is slowly but surely moving forward. He spent his birthday (yesterday, for any of you slackers who missed it) mowing the lawn (!) and getting a haircut. I think mowing the lawn was overdoing it and he's a little under the weather with his headache now but there isn't much else that could make him feel more like he may eventually get himself back. He's cooking, cleaning and applying lotion in all the places I can't reach - so taking very good care of me even though he's not feeling too great yet.
My mother arrives tonight for a no special reason visit. Faith and Bruce get here Friday for the same purpose. I think we girls will plant bulbs this weekend - that will give me lots of color to look forward to in the spring and will help me through the dreary winter. Hopefully good scan results on election day will contribute to the positive wave.
The day after my scan I head to Albuquerque for a few days of CME. Ian, Resa and Macy will be joining us for Thanksgiving. More CME the 4th and 5th of December (Boston area) and then the trek to Albuquerque for Christmas and my mother's birthday. I'm not making travel or event plans for 2009 until we see what the scan shows next month but I'm thinking it's going to be good so I've started thinking about what to do with the kids' April break and summer. I'm sure I'll be driving all over the place with Hannah for volleyball during the club season.
Really, what a difference a week makes. Last week I was sick and demoralized. This week is all sunshine and tulips.
Party on!
Lisa
On top of the good Tarceva news, I have nascent eyebrows and eyelashes! Really, all my hair is growing back everywhere to the point that I actually shaved yesterday. I had accommodated myself to the hairless look and so was mildly surprised at how giddy seeing the new hair made me. Silliness, but there it is.
Robert is slowly but surely moving forward. He spent his birthday (yesterday, for any of you slackers who missed it) mowing the lawn (!) and getting a haircut. I think mowing the lawn was overdoing it and he's a little under the weather with his headache now but there isn't much else that could make him feel more like he may eventually get himself back. He's cooking, cleaning and applying lotion in all the places I can't reach - so taking very good care of me even though he's not feeling too great yet.
My mother arrives tonight for a no special reason visit. Faith and Bruce get here Friday for the same purpose. I think we girls will plant bulbs this weekend - that will give me lots of color to look forward to in the spring and will help me through the dreary winter. Hopefully good scan results on election day will contribute to the positive wave.
The day after my scan I head to Albuquerque for a few days of CME. Ian, Resa and Macy will be joining us for Thanksgiving. More CME the 4th and 5th of December (Boston area) and then the trek to Albuquerque for Christmas and my mother's birthday. I'm not making travel or event plans for 2009 until we see what the scan shows next month but I'm thinking it's going to be good so I've started thinking about what to do with the kids' April break and summer. I'm sure I'll be driving all over the place with Hannah for volleyball during the club season.
Really, what a difference a week makes. Last week I was sick and demoralized. This week is all sunshine and tulips.
Party on!
Lisa
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