(I should try and get a more complete blog post on the hospital visit out soon. Just things have been crazy and I haven't been able to write. So here is a drug-addled bullet point blog post to just quickly get something out there tonight.)
+I was discharged tonight. The doctors were able to get me off of IV drugs and on to just oral ones I can take at home. I'm on an embarrassingly high amount of pain killers. But they are working and I'm comfortable which is amazing. (Every day you wake up without pain thank Jesus for that- don't take it for granted)
+I've been overwhelmed with trying to figure out the next step for treatments. We have a ton of leads for trials (PD-1 and PD-L1 mostly). With being in so much pain this weekend and now being doped up on pain killers, my brain is not able to handle staying on top of all the phone calls and research and to-do's needed to figure out what to do next. So my amazing friend Julie (who happens to be a radiation-oncologist) booked a flight this afternoon and is coming in right now to be my captain and figure everything out for me. Thank you Jesus for Julie.
+Coming back home to the boys was very painful this evening. Every little cute, adorable, smart, fun thing they do just made me cry tonight thinking about leaving them so soon. Emotionally this is hard to deal with.
+My oncologist gave me two months left to live if we did nothing / if nothing ends up working with the trials (which have a low probability of working). I'm having so much fun and I'm not ready to leave the party yet. I'm doing my best to submit to God's will and know that his plans are always better than mine, but it still doesn't take away the sadness of leaving my family so soon.
+I feel so horrible about making so many people around me so sad. Brad losing his wife, the kids not growing up with their mom, my parents being crushed, my friends being heartbroken, even readers on the blog saying that I've made them cry- I'm so, so, so sorry everyone. I like making people laugh and be happy and have fun. Making everyone sad is the pits.
+I'm really trying to stay focused on keeping my eyes on Jesus. Even in the middle of the storm, if I'm reading my Bible and praying, my heart is full of peace and joy. I still have hope for a miracle. One of these drugs has a low probability of working, but if it does work it could change my situation dramatically, and for a very long time. I feel more loved and cared for than ever before. Thank you to everyone that has reached out and loved on me. (Don't forget Brad- he needs love too! Guys, make sure you ask him how HE is doing too.) :-) I'm thankful for all the many, many blessings in my life. Too bad just one little bummer thing could take it all away very, very soon.
+I've been overwhelmed with trying to figure out the next step for treatments. We have a ton of leads for trials (PD-1 and PD-L1 mostly). With being in so much pain this weekend and now being doped up on pain killers, my brain is not able to handle staying on top of all the phone calls and research and to-do's needed to figure out what to do next. So my amazing friend Julie (who happens to be a radiation-oncologist) booked a flight this afternoon and is coming in right now to be my captain and figure everything out for me. Thank you Jesus for Julie.
+Coming back home to the boys was very painful this evening. Every little cute, adorable, smart, fun thing they do just made me cry tonight thinking about leaving them so soon. Emotionally this is hard to deal with.
+My oncologist gave me two months left to live if we did nothing / if nothing ends up working with the trials (which have a low probability of working). I'm having so much fun and I'm not ready to leave the party yet. I'm doing my best to submit to God's will and know that his plans are always better than mine, but it still doesn't take away the sadness of leaving my family so soon.
+I feel so horrible about making so many people around me so sad. Brad losing his wife, the kids not growing up with their mom, my parents being crushed, my friends being heartbroken, even readers on the blog saying that I've made them cry- I'm so, so, so sorry everyone. I like making people laugh and be happy and have fun. Making everyone sad is the pits.
+I'm really trying to stay focused on keeping my eyes on Jesus. Even in the middle of the storm, if I'm reading my Bible and praying, my heart is full of peace and joy. I still have hope for a miracle. One of these drugs has a low probability of working, but if it does work it could change my situation dramatically, and for a very long time. I feel more loved and cared for than ever before. Thank you to everyone that has reached out and loved on me. (Don't forget Brad- he needs love too! Guys, make sure you ask him how HE is doing too.) :-) I'm thankful for all the many, many blessings in my life. Too bad just one little bummer thing could take it all away very, very soon.
Praying for you, Brad, your parents, family and friends, and most especially those two adorable boys.
ReplyDeleteJust found your blog and I am in tears. Praying for that miracle for you and crying with you. Hugs for strengthen as you accept HIS will
ReplyDeleteFound your blog from Momfessionals, my girls and I are putting you on our prayer list tonight...praying for a miracle, sweet mama!
ReplyDeletePrayers for you and your family Ashleigh! God is in control.
ReplyDeletePraying you find the right trial and it works. Melissa R
ReplyDeleteOur thoughts and prayers are with your family, we hope that you find a trial ASAP and that it stops or at least slows the cancer so you can have more time with your precious boys.
ReplyDeletePlease don't feel bad for making people sad. None of this is your fault. Focus on the fact that worse case scenario (which I hate to think about, still praying for your miracle!) your boys and Brad will always know that you fought as hard as you possibly could to stay with them as long as possible. You've given them a gift by not giving up.
ReplyDeleteBut none of that matters because you will get your miracle! :)
It has been our PRIVILEGE to cry with you and pray for you and your family! Praise God, He is not bound by odds or months to live; therefore, I am praying for a miracle, confident in His ability to answer that prayer. Thank you, Ashleigh, for always pointing us to Christ!
ReplyDeleteAshleigh - you are an inspirational woman of faith! Even in pain, in the midst of the highs and lows, you SING your praises to/of Jesus. I can "see" and "feel" him in every cell of your body. Hold tight to Him. Praying for you and your family, and your incredible support team.
ReplyDeletePraying, praying, praying. Many people beat those "months to live" odds with less of an INDOMITABLE spirit than yours. Even if you beat it by a month - that's one more month with your amazing husband and gorgeous, superb, precious little boys. But I am praying praying praying for the miracle. You have so many wonderful friends with just the skills needed to help you wade through SO MUCH CHAOS/complicated literature. I know we hardly know each other, but your fighting spirit sounds just about how I would tackle this myself. Right down to the goals list at the hospital. :) (I did that too - but for the birth of little Lukas... right on that white board... of course, that was way less scary.) Hugs to you.
ReplyDeletePraying for everyone. You and your amazing family have made such an impact on my life.
ReplyDeleteI am so very sorry for everything you have endured since being diagnosed with breast cancer. I'd like to let you know that reading your blog has changed my life and has made me realize how important the small things in life really are. You and your family are in mine and my families thoughts and prayers and we are all praying for a miracle.
ReplyDeleteHugs and white healing for you all.
ReplyDeleteThe Lord is good and he will hear your prayers Ashleigh.
ReplyDeleteI'm praying for you.
ReplyDeletePraying for you and your precious family...
ReplyDeleteYou are absolutely inspirational! We are praying for one of these trials to kick your cancer's butt.
ReplyDeleteOkay, you made me cry, but please don't apologize. God is using you in some very powerful ways, and your life - and the way you live it - is a blessing to many. You, Brad and the kids have our prayers.
ReplyDeleteHi Ashleigh, I'm another young breast cancer patient. Although I don't have triple negative or IBC, I am doing a clinical trial and have some experience researching them. While I'm sure there's nothing I can say that you and the team at MDA haven't discussed, I did a little bit of looking breastcancertrials.org. First off, have they biopsied a met to make sure the pathology is still TN? If it did change, you could do hormone and/or targeted therapy. Second, what about Halaven/Eribulin? There was a trial with it going on at my cancer center that I considered and my onc seemed very positive about it. From what I gather from your blog, I can't see anything that excludes you from this trial: http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=749056&version=healthprofessional. Unfortunately it seems to only have locations on the East Coast but I will seriously send you $$ for travel. Thirdly, maybe you are excluded from it because you have already had Xeloda, but I've heard of TNs having good responses to Gemzar. Fourthly, if you want someone else to help you with any research, I am completely willing. You can find me on my google profile if so. I'm sure I'm overreaching and I hope I don't come across as creepy here, but I see a lot of myself in the way you've handled having cancer and I just wanted to try and do something...anything...to help.
ReplyDeleteYou are so inspirational, and your entire family and support team and doctors are in my fervent prayers.
ReplyDeleteRemember the dream you had! It has to be realized! Praying fervently for your healing!
ReplyDeleteCancer is just a reminder of how we are not in control of our own lives. It's strange, but as someone from the outside looking in to this point, it seems like cancer pushes to the forefront the best of people's character. You're character, strength and faith should be studied, bottled and sold! Don't pay attention to the numbers, odds, statistics... They mean nothing, they are just numbers. You just keep fighting your fight one day at a time. It's an honor to cry with you! It's an honor to know you, and it's an honor to read your blog! You have no idea, but you have helped renew people's faith in God. One day's your boys will grow up and read your blog and say, mom was a bad ass! And you'll say, yes YES I am! As a daughter, words can't describe how grateful and appreciative I was that my mom fought so hard to fight her so called "terminal" cancer. She made it through on her clinical trial, but even if she hadn't, she taught me valuable lessons which are keep the faith, keep fighting, and appreciate every single day. When your boys are older, they'll see that too. I'm praying for you, and your beautiful family. Thanks so much for sharing your story, despite everything your going through.
ReplyDelete