Those were the summary words from my PET scan results today. I can barely believe it. It feels like a horrible nightmare where I just can't seem to wake up. Lord, please let me wake up from this nightmare.
Simply put, I have THE most aggressive, fastest growing breast cancer possible - inflammatory, triple negative, metastatic, with 90%+ of my cells actively replicating. I went from a completely clear bone scan three weeks ago to too many bone lesions to count. The biggest being 4cm on my sacrum (most likely contributing to the back pain that has been keeping me up at night).
My cancer was also found in my lungs - in the pleural space. This is called pleural effusion. If this is how I end up dying it feels like you are drowning and you die by finally not being able to get in a breath - pleasant isn't it? This is the side of breast cancer no one ever tells you about.
The doctor wouldn't give me a timetable on how long it would take me to die if we did nothing, but told me essentially to do the math given what I know about how agressive it is: it would be very, very soon.
And speaking of doing nothing, the second blow was this: there are no promising/standard of care options left for me. So we very well may do more chemos and trials and have none of them work. None of them are even particularly likely to work. In the past I would half-jokingly say that if and when I became metastatic I would die quickly because good tools to fight this stage simply don't exist. When I used to say that, I (1) honestly didn't think this day would come and (2) thought something magical would happen before now - that there would be some option I just didn't know about or some new treatment coming out that would be able to extend my life. When the clinical trials group at the top IBC clinic in the nation says they have nothing for you, you know you are pretty much screwed.
I have a friend coming over tonight to help me evaluate and prioritize the handful of trials we have found that are in stage 1. A stage 1 trial means they are testing a specific protocol to see if it is safe in humans, unsure if it will actually help or not, and may even be potentially dangerous. We are looking at trials all over the country. Please pray that we would have wisdom to pick the right trials to pursue and that there would be drugs out there that would be that "magic bullet" every cancer patient dreams of. And that we could find and get in the right trial very, very quickly. My cancer is spreading before our eyes.
Tonight (May 28th) my church is holding a prayer vigil at First Baptist Allen (on Main/McDermott & 75) from 6:45-7:45pm. We are still in Houston but will try to facetime/skype in. Anyone is welcome to attend.
Thank you for your prayers and support. We will need them greatly in the coming weeks for as long as I have left on this earth. <3
Simply put, I have THE most aggressive, fastest growing breast cancer possible - inflammatory, triple negative, metastatic, with 90%+ of my cells actively replicating. I went from a completely clear bone scan three weeks ago to too many bone lesions to count. The biggest being 4cm on my sacrum (most likely contributing to the back pain that has been keeping me up at night).
My cancer was also found in my lungs - in the pleural space. This is called pleural effusion. If this is how I end up dying it feels like you are drowning and you die by finally not being able to get in a breath - pleasant isn't it? This is the side of breast cancer no one ever tells you about.
The doctor wouldn't give me a timetable on how long it would take me to die if we did nothing, but told me essentially to do the math given what I know about how agressive it is: it would be very, very soon.
And speaking of doing nothing, the second blow was this: there are no promising/standard of care options left for me. So we very well may do more chemos and trials and have none of them work. None of them are even particularly likely to work. In the past I would half-jokingly say that if and when I became metastatic I would die quickly because good tools to fight this stage simply don't exist. When I used to say that, I (1) honestly didn't think this day would come and (2) thought something magical would happen before now - that there would be some option I just didn't know about or some new treatment coming out that would be able to extend my life. When the clinical trials group at the top IBC clinic in the nation says they have nothing for you, you know you are pretty much screwed.
I have a friend coming over tonight to help me evaluate and prioritize the handful of trials we have found that are in stage 1. A stage 1 trial means they are testing a specific protocol to see if it is safe in humans, unsure if it will actually help or not, and may even be potentially dangerous. We are looking at trials all over the country. Please pray that we would have wisdom to pick the right trials to pursue and that there would be drugs out there that would be that "magic bullet" every cancer patient dreams of. And that we could find and get in the right trial very, very quickly. My cancer is spreading before our eyes.
Tonight (May 28th) my church is holding a prayer vigil at First Baptist Allen (on Main/McDermott & 75) from 6:45-7:45pm. We are still in Houston but will try to facetime/skype in. Anyone is welcome to attend.
Thank you for your prayers and support. We will need them greatly in the coming weeks for as long as I have left on this earth. <3
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