My apologies for taking so long to get this update out there after our last visit to MDA. I know many folks from my church were taking the day on March 12th to pray and fast for us- thank you to everyone that made sacrifices to keep lifting us up to the Lord in prayer. Surely we've gotten annoying enough by now for God to just say- "Okay, okay, enough already, I'll go ahead and heal her!" (See: The Parable of the Persistent Widow from Luke 18:1-8)
The day at MDA on March 12th was difficult. We go into these days with so much energy, heart, and hope and always leave empty, broken, and defeated. It was another gruelling day filled with reminders of my reality. We hopped from appointment to appointment with no breaks in between - not even enough time to grab a water bottle or food; so by the end of the day, I could barely walk to our car. I was tired from sleeping poorly the night before, hungry from not eating all day, dehydrated from not drinking any water, and in pain because I was out of my pain medications. So if you add even a little bit of bad news to that equation, of course you are going to get an emotional Ashleigh.
The first part of bad news was the pathology report. The "path report" is a summary of what the pathologist found when he or she looked through a microscope at the tissue removed during surgery. Here is the good news: my excellent (and aggressive/conservative) surgeon completely removed all of the tumor(s). They call this getting "clear margins". It means that where they found active cancer cells in the tissue, there was more than 1-2 mm of healthy tissue beyond that. In my case there were "wide margins", meaning even greater than just a few millimeters of space. This means that after the surgery there was no left-over tumor material.
The bad news of the path report concerned my lymph nodes. They removed all the lymph nodes they could find in my armpit (called the axilla). Out of the 34 lymph nodes they removed, TWENTY-SIX of them were positive for cancer. The most I've heard of anecdotally from other IBC patients is maybe 16 or so. So the 26 number just blew my mind.
The number of positive nodes is the best predictor of likelihood of recurrence, and if you have a recurrence (the cancer comes back after treatment), then you are pretty much dead meat. The number of positive lymph nodes is a proxy for how much cancer is still floating around in your bloodstream/lymph system. Those "circulating tumor cells" or CTCs are looking for a place to land - like your lungs, liver, etc.
SO, all that to say, because 26 of lymph nodes were positive, I have a boat-load of cancerous cells still floating around in my system looking for a place to land.
When I got this news, I whined to my doctor, "So this means I have 100% chance of recurrence and am going to die in 2-3 months from now!" He said, "No, in 5% of cases, the CTCs have trouble landing in a place they didn't originate from." You heard it here first folks- I've got a 5% chance of not dying in a few months- woohoo!!!
The second piece of bad news was about the drains. If you've ever had a drain, then you know what I'm talking about. If you've never had a drain, you don't want me to talk about it. Because drains are disgusting. I leave it at this: I was expecting them to be removed, then they weren't removed after all, and I was sad.
I did a quick visit with my radiation-oncologist (uneventful) and then to psychiatry. Going to psychiatry and not just the psychologist makes you feel especially crazy. You know, more than the normal, "haha-crazy", but the "maybe-you-should-be-somewhere-with-padded-walls, crazy". I'm fairly certain it is just a technicality that the MDA pysch people are called one thing and the UT Southwestern pysch people are called another. The difference just makes me slightly uncomfortable (please, Brad, don't send me to a home!).
As I mentioned, by the end of the day I was utterly exhausted. And then we drove home to Dallas. I'm so thankful that a) Brad was driving and b) he stayed awake, because Lord knows I sure didn't. Every half hour or so I would awake and yell, "BRAD, YOU OKAY?" Finally, he said,"Why don't you just go to sleep honey."
Today's appointment at MDA was MUCH happier than my first post-surgical visit. It was everything I hoped my first appointment would be. Essentially the highlights are: I got my drains out (praiseyouJesusinHeaven!) and I my radiation simulation is scheduled for two days from now. I have no idea what all that entails, but woohooo!!!!
The day at MDA on March 12th was difficult. We go into these days with so much energy, heart, and hope and always leave empty, broken, and defeated. It was another gruelling day filled with reminders of my reality. We hopped from appointment to appointment with no breaks in between - not even enough time to grab a water bottle or food; so by the end of the day, I could barely walk to our car. I was tired from sleeping poorly the night before, hungry from not eating all day, dehydrated from not drinking any water, and in pain because I was out of my pain medications. So if you add even a little bit of bad news to that equation, of course you are going to get an emotional Ashleigh.
The first part of bad news was the pathology report. The "path report" is a summary of what the pathologist found when he or she looked through a microscope at the tissue removed during surgery. Here is the good news: my excellent (and aggressive/conservative) surgeon completely removed all of the tumor(s). They call this getting "clear margins". It means that where they found active cancer cells in the tissue, there was more than 1-2 mm of healthy tissue beyond that. In my case there were "wide margins", meaning even greater than just a few millimeters of space. This means that after the surgery there was no left-over tumor material.
The bad news of the path report concerned my lymph nodes. They removed all the lymph nodes they could find in my armpit (called the axilla). Out of the 34 lymph nodes they removed, TWENTY-SIX of them were positive for cancer. The most I've heard of anecdotally from other IBC patients is maybe 16 or so. So the 26 number just blew my mind.
The number of positive nodes is the best predictor of likelihood of recurrence, and if you have a recurrence (the cancer comes back after treatment), then you are pretty much dead meat. The number of positive lymph nodes is a proxy for how much cancer is still floating around in your bloodstream/lymph system. Those "circulating tumor cells" or CTCs are looking for a place to land - like your lungs, liver, etc.
SO, all that to say, because 26 of lymph nodes were positive, I have a boat-load of cancerous cells still floating around in my system looking for a place to land.
When I got this news, I whined to my doctor, "So this means I have 100% chance of recurrence and am going to die in 2-3 months from now!" He said, "No, in 5% of cases, the CTCs have trouble landing in a place they didn't originate from." You heard it here first folks- I've got a 5% chance of not dying in a few months- woohoo!!!
The second piece of bad news was about the drains. If you've ever had a drain, then you know what I'm talking about. If you've never had a drain, you don't want me to talk about it. Because drains are disgusting. I leave it at this: I was expecting them to be removed, then they weren't removed after all, and I was sad.
I did a quick visit with my radiation-oncologist (uneventful) and then to psychiatry. Going to psychiatry and not just the psychologist makes you feel especially crazy. You know, more than the normal, "haha-crazy", but the "maybe-you-should-be-somewhere-with-padded-walls, crazy". I'm fairly certain it is just a technicality that the MDA pysch people are called one thing and the UT Southwestern pysch people are called another. The difference just makes me slightly uncomfortable (please, Brad, don't send me to a home!).
As I mentioned, by the end of the day I was utterly exhausted. And then we drove home to Dallas. I'm so thankful that a) Brad was driving and b) he stayed awake, because Lord knows I sure didn't. Every half hour or so I would awake and yell, "BRAD, YOU OKAY?" Finally, he said,"Why don't you just go to sleep honey."
Today's appointment at MDA was MUCH happier than my first post-surgical visit. It was everything I hoped my first appointment would be. Essentially the highlights are: I got my drains out (praiseyouJesusinHeaven!) and I my radiation simulation is scheduled for two days from now. I have no idea what all that entails, but woohooo!!!!
Thank you for sharing. Always ups and downs - we will continue to pray! I'm so pleased to here they got wide margins.
ReplyDeleteit's possible you're gonna get some sweet tats. First yellow hair, next tattos, SPRING BREAK WOOOO
ReplyDeleteI'm so sorry to hear that you got disappointing news on your first MD trip. I had to pull up one of your first posts, though, and re-read about the survivor you spoke to who also had 20+ positive lymph nodes and did not have clean margins and was 6 years out. I pray that will be you, too!
ReplyDeleteI will continue praying. Thanks for the update.
ReplyDeleteAshleigh, God is the ultimate healer and I am sure He has a plan for you. Focus on Him and He will fulfill His plan for you.
ReplyDeleteOur Father in Heaven, The Creator of the Universe,
ReplyDeleteI humbly come to you and ask that you heal Sweet, adorable, kind, smart and loving Ashleigh! Do not let those wondering Cancer cells find another place to stop and grow. Shrivel them every one up and cause them to cease to exist. I ask for this healing on your Sabbath in your sons name Yeshua. I ask in his name so that you may be glorified. You told us in John 14:
12 Verily, verily, I say unto you, He that believeth on me, the works that I do shall he do also; and greater works than these shall he do; because I go unto my Father.
13 And whatsoever ye shall ask in my name, that will I do, that the Father may be glorified in the Son.
14 If ye shall ask any thing in my name, I will do it.
I believe in your son and I know Ashleigh does too! We know your power has already allowed Ashleigh to have her surgery and for that we are thankful! Continue to lay your blessing upon her and may we always glorify the Father through the Son!
Thank you for hearing this prayer!
In Yeshua's name, Amen and Amen
Praying for you this morning in southern illinois! Thank you for the privilege of walking this journey with you in prayer!
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteI'm writing you from Portugal, southern Europe. I look at your pictures, with your family, and I see hope. For me, for you, for all IBC'ers. Keep on fighting, we will beat the odds and raise our children.
ReplyDeleteI m writing you from VA fighting stage 3 Breast cancer n going thru chemo n raising 6 yr n 8 mon . It's tough sometimes unbearable pain but I have promised I m going to be their to raise my kids n b part of their life . Hang in there n remember this shall pass too
ReplyDelete