So much time has gone by since my last post, so many highs and lows, so many tears and moments of hope and joy. In a nutshell, Matt and I left for Lourdes on May 1 and had the most intensely beautiful week of our lives. It was full of prayer, grace, hope and love. It filled us up with this immense sense of love for our faith and our fellow man. Words truly can't describe what we experienced. I cherish these moments because they were shared with Matt, my guy, my rock. He truly gets everything I am going through and we can just cry and be together with no words necessary.
I'm not going to lie. I didn't expect there to be some outrageous miracle waiting for me when we left Lourdes, but I also didn't expect everything to kind of fall apart either. While in Lourdes, I was in contact with my oncologist at UCSF to get into a clinical trial immediately upon my return. We flew in Weds night and Friday morning I was up in the City getting bloodwork, EKG and Echos done. Something was off though. I just didn't feel right. I couldn't calm down, I couldn't sit still, it was a nightmare. After much longer than it should have taken, I finally struggled through it all. Only to be told a few hours later that my blood work wasn't good enough. My liver enzymes were way way way over board. The plan was to hydrate all weekend, revise some meds, and retest the liver on Monday. Monday was also a no go. So was Wednesday. And Friday. By Friday they wanted me to have an ultrasound to see if my liver needed a stent or anything funky like that. The first bit of good news came with that ultrasound showing everything was just fine with the ol' liver.
So after countless hours spent in labs and waiting rooms, the official verdict on the clinical trial is a NO.
This news was met with a lot of disappointment and anger on my part. I see commercials all the time with these women who are just living their glorious lives on meds like iBrance and whatnot....you know, the meds that stopped working for me almost immediately. I feel lost and forgotten. I feel like there are all these amazing drugs out there for everyone BUT me.
I met with Dr. Adler last Monday, (Happy Birthday to me!), and we decided to go back to step 1 - the Abraxane. It never failed me, we just thought something else may be easier. So today was my first step back into the ring with the chemo. I knew going into it that it wasn't going to be good. I felt discombobulated and antsy. I didn't want to be there. But I knew I had to suck it up.
So I spent a good part of the afternoon in tears today at chemo. Tears for so many reasons.... first and foremost for my situation, but a close second for my husband. He didn't sign up for this. He does every single thing for me without complaining. All he wants to do is make this easier on me and I can't even give him any of my cross. I see him in pain just wanting to take away my pain. It's a vicious cycle.... yet he never fails to make me laugh, bring me a treat I didn't even know I wanted, he cooks and cleans and takes the best care of our girls. I no longer worry that he will forget me someday, what I worry is that my girls will never know a love so true and pure.
I don't want to die. God, I really don't want to die....but it's impossible to live and not see the glory all around me. Even when all I want to do is cry.
I'm not going to lie. I didn't expect there to be some outrageous miracle waiting for me when we left Lourdes, but I also didn't expect everything to kind of fall apart either. While in Lourdes, I was in contact with my oncologist at UCSF to get into a clinical trial immediately upon my return. We flew in Weds night and Friday morning I was up in the City getting bloodwork, EKG and Echos done. Something was off though. I just didn't feel right. I couldn't calm down, I couldn't sit still, it was a nightmare. After much longer than it should have taken, I finally struggled through it all. Only to be told a few hours later that my blood work wasn't good enough. My liver enzymes were way way way over board. The plan was to hydrate all weekend, revise some meds, and retest the liver on Monday. Monday was also a no go. So was Wednesday. And Friday. By Friday they wanted me to have an ultrasound to see if my liver needed a stent or anything funky like that. The first bit of good news came with that ultrasound showing everything was just fine with the ol' liver.
So after countless hours spent in labs and waiting rooms, the official verdict on the clinical trial is a NO.
This news was met with a lot of disappointment and anger on my part. I see commercials all the time with these women who are just living their glorious lives on meds like iBrance and whatnot....you know, the meds that stopped working for me almost immediately. I feel lost and forgotten. I feel like there are all these amazing drugs out there for everyone BUT me.
I met with Dr. Adler last Monday, (Happy Birthday to me!), and we decided to go back to step 1 - the Abraxane. It never failed me, we just thought something else may be easier. So today was my first step back into the ring with the chemo. I knew going into it that it wasn't going to be good. I felt discombobulated and antsy. I didn't want to be there. But I knew I had to suck it up.
So I spent a good part of the afternoon in tears today at chemo. Tears for so many reasons.... first and foremost for my situation, but a close second for my husband. He didn't sign up for this. He does every single thing for me without complaining. All he wants to do is make this easier on me and I can't even give him any of my cross. I see him in pain just wanting to take away my pain. It's a vicious cycle.... yet he never fails to make me laugh, bring me a treat I didn't even know I wanted, he cooks and cleans and takes the best care of our girls. I no longer worry that he will forget me someday, what I worry is that my girls will never know a love so true and pure.
I don't want to die. God, I really don't want to die....but it's impossible to live and not see the glory all around me. Even when all I want to do is cry.
You are experiencing a love that not many people have. The girls are seeing first-hand what love really is about. They will find love comparable to yours. We usually find a mate similar to our fathers. You found yours and the girls will find theirs. Matt has been a wonderful example of a mate and a father.
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ReplyDeleteIt is challenging to hold the tears at bay as I read of your journey. The anger is real! The sadness is real! The fears are real! The faith is so, so real!
I venture to bet that any of us who love you and hold you so dear would give anything to find the cure that is just right for you. And though our anger (at this miserable disease), our sadness (for your suffering), our fears (of not knowing how this will turn out), and our faith (that God is Good and will provide what we need; not necessarily the same as what we want) is not comparable to what you are feeling, it is also real. You are sooo loved. You are sooo admired. You are sooo valued. And you are sooo deeply in our hearts... ALL the time.