Sitting on a patio in SF, waiting for my next appointment. The pin on the jacket is for Metavivor, a non-profit who puts 100% of their donated funds to metastatic breast cancer research.
Whenever there is disease progression, you can be guaranteed there will be a flurry of activity as a new plan is put into place. While we expected my latest scans to show progression, we didn't really expect it where it showed up! Therefore, most of what was discussed before the scans as possible treatments were set aside in order to react to what was reality.
First of all, God is good! The fact that this disease is moving throughout my body doesn't change his goodness. I don't pretend to understand what's happening and I have tons of questions, but I do, to the core of my being, believe in the saving grace of my loving Savior.
Next, I'm grateful that the disease progression was in the bones. Yes, it's painful and irritating, but it's not life threatening. This isn't to dismiss others who are dealing with organ mets ... but simply an acknowledgement on my part that things could be a whole lot worse at this point in time in my life, but they aren't. Lots of thanks for that.
Thirdly, while I am happy with the response I had during the 13 months of Xeloda, I'm not going to miss that drug at all! It will take a month or more for my hands to return to normal. I won't miss the peeling, cracking, blistering side effects at all.
Moving on to what's next. I am back on a hormone treatment (Femara/Letrozole (most drugs have two names) ) which is an easily tolerated oral drug. One tiny pill every day, day in and day out. I was also approved by the insurance company for the new drug Ibrance/palbociclib. Big thanks to my medical team at UCSF for going to bat to get approval after the insurance company gave its immediate rejection without reading any of the documentation submitted with the request. Ibrance is also an oral drug, taken three weeks on/one week off. I will start it tomorrow. The most common side effects are neutropenia (low white cell counts) and hair thinning. Just in time for summer! Letrozole alone has a average progression free efficacy of about nine months, but when combined with Ibrance, jumps to 21 - 24 months. I'm hoping and praying that I will, once again, be an outstanding responder and get those 21 - 24 months or more.
The tumor in my hip socket takes up 60% of the transverse diameter of the femoral head, placing me at high risk for fracture. While I am classified a high risk, this does not mean I'm at imminent risk. However, we're going to zap that bugger with radiation, just like we did with the neck tumors two-and-a-half years ago. I will have 20 radiation sessions beginning July 13. In the meantime, I have to use a crutch to reduce the weight placed on the hip. I'm getting better at using it ... and my hand is toughening up. I got a blister on the palm of my hand after one day, but it's already calming down.
The reason for the delay in starting radiation is because we are taking a family vacation July 1 - 12. While we could have tried to reschedule everything, the entire medical team didn't think there was a serious problem with my taking the trip as planned. (There's more than one family involved in the trip.) However, for the first time, my travel wheelchair will actually travel with me! We purchased it three years ago to help with Art's mother when she came to visit and since that time, it's been loaned out for several other people to use. It's been to southern California (twice!) and to France and now it's going to Mississippi and Florida! Woo hoo! I should keep a mileage log for it.
I've been to San Francisco four times in ten days -- I've seen three oncologists and spoken to two others on the phone; spent hours on the phone gathering information and pulling things together; arranged for radiation to happen only one mile from my house and got copies of all my scans and reports to that location. That's the big flurry of activity, but now it's done and everything has settled down. My next appointment is June 30 for radiation simulation (where they map out exactly how they want the rays to go).
Rachel is in Mexico with the church youth group and Michael is hacking his lungs out as he started his summer vacation with a cold. Today is the first day he got out of his pajamas. Poor guy. He is doing better now. Art continues to work hard to provide for us and it's always a joy to see him at the end of a day.
I'm now getting ready to make some granola. Yes, you wish you had some! :D After that, I'll write out some more of Judges ... I'm up to Samson now.
Thank you again for your ongoing support. It means a lot.
"So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever." (2 Corinthians 4:16-18, The Message)
First of all, God is good! The fact that this disease is moving throughout my body doesn't change his goodness. I don't pretend to understand what's happening and I have tons of questions, but I do, to the core of my being, believe in the saving grace of my loving Savior.
Next, I'm grateful that the disease progression was in the bones. Yes, it's painful and irritating, but it's not life threatening. This isn't to dismiss others who are dealing with organ mets ... but simply an acknowledgement on my part that things could be a whole lot worse at this point in time in my life, but they aren't. Lots of thanks for that.
Thirdly, while I am happy with the response I had during the 13 months of Xeloda, I'm not going to miss that drug at all! It will take a month or more for my hands to return to normal. I won't miss the peeling, cracking, blistering side effects at all.
Moving on to what's next. I am back on a hormone treatment (Femara/Letrozole (most drugs have two names) ) which is an easily tolerated oral drug. One tiny pill every day, day in and day out. I was also approved by the insurance company for the new drug Ibrance/palbociclib. Big thanks to my medical team at UCSF for going to bat to get approval after the insurance company gave its immediate rejection without reading any of the documentation submitted with the request. Ibrance is also an oral drug, taken three weeks on/one week off. I will start it tomorrow. The most common side effects are neutropenia (low white cell counts) and hair thinning. Just in time for summer! Letrozole alone has a average progression free efficacy of about nine months, but when combined with Ibrance, jumps to 21 - 24 months. I'm hoping and praying that I will, once again, be an outstanding responder and get those 21 - 24 months or more.
The tumor in my hip socket takes up 60% of the transverse diameter of the femoral head, placing me at high risk for fracture. While I am classified a high risk, this does not mean I'm at imminent risk. However, we're going to zap that bugger with radiation, just like we did with the neck tumors two-and-a-half years ago. I will have 20 radiation sessions beginning July 13. In the meantime, I have to use a crutch to reduce the weight placed on the hip. I'm getting better at using it ... and my hand is toughening up. I got a blister on the palm of my hand after one day, but it's already calming down.
The reason for the delay in starting radiation is because we are taking a family vacation July 1 - 12. While we could have tried to reschedule everything, the entire medical team didn't think there was a serious problem with my taking the trip as planned. (There's more than one family involved in the trip.) However, for the first time, my travel wheelchair will actually travel with me! We purchased it three years ago to help with Art's mother when she came to visit and since that time, it's been loaned out for several other people to use. It's been to southern California (twice!) and to France and now it's going to Mississippi and Florida! Woo hoo! I should keep a mileage log for it.
I've been to San Francisco four times in ten days -- I've seen three oncologists and spoken to two others on the phone; spent hours on the phone gathering information and pulling things together; arranged for radiation to happen only one mile from my house and got copies of all my scans and reports to that location. That's the big flurry of activity, but now it's done and everything has settled down. My next appointment is June 30 for radiation simulation (where they map out exactly how they want the rays to go).
Rachel is in Mexico with the church youth group and Michael is hacking his lungs out as he started his summer vacation with a cold. Today is the first day he got out of his pajamas. Poor guy. He is doing better now. Art continues to work hard to provide for us and it's always a joy to see him at the end of a day.
I'm now getting ready to make some granola. Yes, you wish you had some! :D After that, I'll write out some more of Judges ... I'm up to Samson now.
Thank you again for your ongoing support. It means a lot.
"So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever." (2 Corinthians 4:16-18, The Message)
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