I am so sorry that this treatment didn’t work for you. Not sorry as in, I think it’s my fault, or your fault or anyone’s fault. I’m just sorry. I know that in part, it was me that led you down the rabbit hole desperately pursuing Ibrance. I have watched friends and acquaintances do really well on this drug. Two, three even five years of stability and non progression of the disease and I wanted that so badly for you. I know you did too. But that stability wasn’t in the cards for you and the drug failed you so quickly that I almost couldn’t wrap my brain around it. Even though we knew it was a possibility that it wouldn’t work for you and we talked about that. Even though we managed other people’s expectations about that, I never really believed that. I believed it would work for you. I am devastated that it didn’t. It’s not that the drug failed that is so hard , they will all fail you at some point. It is that we had so much hope tied up in this one particular drug because of the many times we’ve seen it work for others. It’s that we had so many expectations and so much riding on it. It’s that it was seemingly impossible to get for you and we overcame so much to get it.
I can’t promise you that I won’t chase something else for you. A new trial or the next new drug is coming down the pipeline as we speak. I need to try to get you access to the best options possible, not just what is currently available to you through our troubled health care system. You deserve more, you deserve the best. What I can promise you is that I will understand if you can’t go down the rabbit hole with me again. If you can’t put all that hope into another new treatment or trial.
Lately I’ve been noticing how my boys look at me, particularly at bedtime, or when they are hurt or scared. They look at me how any child should look at their Mom; like I’m their whole world and like nothing could ever happen to me, like they know I will always be there to protect them. That is how it should be but sometimes I’m jealous of their innocence; of what they don’t know.
I can’t remember how it felt to not be scared, wondering when you are going to be taken from me. I can’t remember what it’s like to not know that something can and is happening to you. Something bad, something scary. When it comes down to it I am six years old, the same as my littlest baby. When it comes to our Moms, aren’t we all?! I just want my Mom with me, always. And now that I am a Mom myself, I can’t imagine doing this parenting gig without you. I don’t know how to be a Mom without you. In addition to all that I want my boys to have you by their side as long as possible. Who is a better cheerleader, confidant, friend and supporter than, Gramma?
I am a realist but I choose to live with hope. Not hope for a miracle cure but hope to find treatments to keep you here with us as long as we can. Hope that we can get them for you before it’s too late. Not just now but throughout my life, you have shown me over and over how to choose hope over sorrow, perseverance over collapse and grace over bitterness. But I will understand if you can’t hope the same way after this.
Hope is my drug of choice. It numbs the pain of the reality of losing you far too soon just enough for me to live with intention, to feel the joy in all that we still have, and to continue to take action to help you and others living with metastatic breast cancer.
The opposite of hope is despair. I know that much sooner than I want to, I will feel despair on a level I can’t imagine. So I’m going to do whatever it takes to get my fix and keep living life with you by my side, while I still can.
Let’s navigate these next steps together, like we always have. Let’s find joy and love and happiness in all the moments in between and let’s give each other permission to do it all, any way that works. I love you, Mom. Thanks for showing me the way.
Love, Your Daughter
Oh, honey, I too am sorry. Sorry that my body didn’t respond to Ibrance the way we hoped it would. Of all the times not to respond, just when we were pinning our hopes on a nice long period of no progression; a period of almost normalcy for us. I am grateful for having had the chance to try Ibrance, and refuse to waste any energy on wondering if the outcome would have been different had we been able to access the drug sooner. We all did the best we could to obtain access. The result is what it is, and we move forward.
What I am feeling is extremely sad, because I have had to tell you, your sisters, and your Dad, that things have not gone as we had hoped. This is where I get angry. No one and I mean no one should have to tell their family over and over, that the disease has progressed yet again! It is like marching down the road to your own execution, with little hope for a reprieve. Ibrance was going to be our reprieve, and now even that has been taken away.
I have often reflected on where I would be if it weren’t for the strength and support of my family. Each of you offer your own areas of knowledge and skills, and I am so very grateful. That being said, I also worry about the responsibility this places on each of your shoulders. I want you to know that you are not alone, we make decisions as a family, and although you may make certain recommendations now and in the future, we all decide together.
I too think of those looks that you described. The look of an innocent child believing their Mom will always be there and will always be able to protect them. The loss of that look is one of the things that makes me saddest about this disease. At way too early a time in your lives, you lost that innocence. We did have a period of time between the end of my early stage treatment and the return of the disease when I saw that look and that light in your eyes again. It was only there though because we were not told that the cancer could return as stage 4 and what the repercussions of that would be. Ever since the day we found out the cancer was back and had metastasized to my bones and
beyond, no matter what we are doing, or how much fun we are having, when I look into your eyes, and the eyes of your sisters, I see that shadow of awareness there. I have never again been seen as a healthy, happy Mom, who will always be there for you.
In the dark of the night, I am often sad and I am often afraid. Afraid of the beast that lurks, just waiting to seize control. Each time a treatment fails, I struggle until I find a way to emerge filled with renewed hope and determination. I recognize if I let this disease take my hope, then it wins, and I am determined to never let that happen. Cancer cannot overcome love and hope. To have hope, is to live! So bring on those new trials, and new drugs, and more hope! We will continue to live with intention, grasping those moments and making memories that last, savoring the joy and supporting each other in our sorrow. For in the end and there will be an end, if we have given hope to each other, and to other families facing a reality like ours, if progress is being made, if treatment options and access are improving, then the beast will never win.
Together, we will work to find our reprieves, to slow or halt the progressions and while we are at it, we will commit to hope, our drug of choice to get us through.
I love you more than there are stars in the sky.
** While Ibrance was not an effective treatment for Jody, she has already started an IV chemo and her medical team will monitor her response and make adjustments if neccessary **