Hanging by a Thread
I remember watching the man that cut our eucalyptus tree – 60 feet high in the air just him, a chain saw, and couple of ropes tied around the tree. I thought how scary it must be just hanging there – the only thing keep him in the air are his four little ropes tied around the tree. Now imagine one of his ropes gets cut. Snip. Now there he is, Eljedro, hanging by three ropes starting to feel unstable with that big chain saw in his hands. Snip. Another rope gets cut. Now he drops his chain saw because he can give two shits about the tree, he just wants to stay safe. Snip. There he is all alone. Eljedro and his one attached rope. No one hears his calls of help. No one can save him. All he can do is hold on to that rope for his dear life. Except this is not a story about our very nice gardener Eljedro and how he cut our eucalyptus trees. This is a story about me – mommy – and the one thin thread I am hanging from.
Let me take you back in time. So it’s the Friday before Mother’s Day. I go see my oncologist for my routine visit. He says all is great and gives me the green card for pregnancy to try to give you a sibling – a dream that has been destroyed long ago. On Monday he calls me and put everything on hold – including the last reconstructive surgery I was supposed to have that Friday. Go get scans. Got scans – tumors everywhere. You know how this story goes. The interesting thing to focus on is I have two tumors in my brain, 15 in my lungs, 7 in my liver, and in my bones.
I get a lung biopsy because it is easier to get to than the liver. It shows that my estrogen positive cancer became triple negative. It was smart enough to change itself and grow around the estrogen blocker I had been on. So they put me on a PARP – a drug that targets triple negative BRCA positive stage 4 breast cancer. Perfect fit. I get my brain radiated.
New scans. The spots in my brain shrunk and have remained stable to this day. 14 out of 15 of my lung tumors shrunk, but my liver is growing. We regroup and add an immunotherapy to the medication I’m taking and add in some radiation for good measure because we are being as aggressive as my body can tolerate and we go big or we go home. Immunotherapy is also used for tripe negative breast cancer.
Scan. My lungs shrink down even more but my liver is growing and it’s growing fast. New plan. I get put on two chemos that I have never been on that target triple negative BRCA positive breast cancer. I am on it for two cycles – 6 weeks.
Scan. Lungs still stable. My liver tumors doubled in six weeks. I am starting to lose my normal liver function. The cancer is taking over. This is where we left off last time. I am given my “Hail Mary” chemo. My last shot before both doctors I spoke with told me after this there is just hospice. You’re liver tumors are growing too fast and just won’t respond to treatment.
During the four weeks I am waiting for scans from my “Hail Mary” chemo. I start to feel excruciating pain from my liver spreading up my back and was put on a pain plan. I started running “tumor” fevers at first every once and a while and then almost every day. Those “tumor” fevers are early liver failure. Most nights I am too tired to even put you to bed anymore. I do not care that I can’t go out to dinners and go drink wine. I care the my cancer is now stealing the special moments I get with you. So I grieve sweet Adeline the loss of putting you to bed every night. And I am angry Sweet Adeline that cancer is stealing that from me. And I am scared - a person like me with such extreme insomnia her whole life can fall asleep at 7:30 while waiting to get scan results the next day and after napping three hours. Something is really wrong. Something has really changed, and I know it.
So I go meet with a lawyer and write my will and my advanced directors, and I am left with this sheet to fill out. This stupid fucking sheet that breaks my heart. This sheet that makes me see reality in the harshest of ways. The sheet where I have to write down what I want to give you and how old you will be. I have not written anything down yet, but the thoughts I have about it torment me.
I think about these gold earrings I always wore when I was a little girl. They were yellow gold and oblong. They had hearts at the bottom and in their hearts was a sapphire - both of our birthstones. And in my head I decide I am going to give it to you when your five. But every time I have that thought and I am ready to write on that stupid fucking sheet – I think – No!!! I want to scream it. I want to scream at the thought that I will not be here when you’re five. When you walk in the door from Grammie and Poppies and greet me with that smile that reaches your eyes, I walk away and sob because I won’t be able to give you those earings when you are five. I will have Grammie give you them because she gave them to me. I’ll give you my little gold A ring when you’re ten. I got it from Grammie when I was ten. Because I won’t be there then either.
I think of every moment and every accomplishment of your life and what superficial thing I want there to represent me, and I feel so broken. Like my heart exploded. I’ve spent months fighting, battling, bettering myself, trying to better others, try to teach you a lifetime of lessons through blog posts and an interview. And I won’t be there to watch you graduate college and hand over my watch or my Louis Vuitton because I haven’t decide which is better for that occasion. Ironically, I would have neither of those items if it weren’t for cancer. Daddy bought me the watch I dreamed of wearing since I was sixteen for my thirtieth birthday after I fought my first battle with cancer. It was the first piece of jewelry he ever bought me because my wedding and engagement rings I inherited from my grandma and those are on the list too. Of course I got my watch in August because a little trick of mine is never actually wait for your birthday.
My Louis Vuitton came from dear friends of ours. It was bought for me after being told I have weeks to live. I asked her why would you use your money on this when I don’t even have long enough to live to use it. She told me it’s a joint gift to both me and you. She wanted me and you to have it. When do I give you that when I won’t even know you?
So back on track. During that four weeks, I also had a biopsy. This time it was from my liver. The liver that’s going to kill me. While we won’t get the complete results back for two more weeks, low and behold my liver has 60 percent estrogen in it. What does that mean? I have two different bodies of cancer. One body of cancer in my lungs that is BRCA positive and triple negative and responsive to all treatment targeted at it. One body of cancer in my liver that is NOT triple negative but estrogen positive and has responded to nothing because my treatments were not targeted to it. My doctor also thinks the BRCA repaired itself, in my liver, by becoming a new mutation. My cancer is so fucking smart. Once again – stubborn and relentless just like me. We won’t know about that until the rest of the results come back.
So daddy and I walk into the doctor’s office yesterday, I knew the news was bad, I can tell Daddy knew too. We sit down. My liver has grown 35% in four weeks. Instead of having the hospice conversation as I should. Wait! There is estrogen in your cancer. Let’s put you on an antiestrogen (which didn’t work for me the first time) and an inhibitor and see if the liver responds. It takes a long time to tell if it responds though. Worse off, it needs to get preapproved by my shitty shitty insurance. What does that mean? That my insurance can play hard ball with my doctor and deny it. Want more proof. Deny it. Want more proof. Only to have to approve it in the end. What happens during that time? I sit with no treatment as my liver continues to grow waiting for the doctor’s office to call with the green light. The insurance finally agreed that I a person with stage 4 estrogen positive metastatic breast cancer need a drug made for stage 4 estrogen positive metastatic breast cancer. And I think to myself – well if it takes 2 weeks for insurance to approve it, and I am on no treatment, in theory my liver cancer should grow 17.5% during that time. It feels like the insurance company gets to steal part of my life. Play G-d. But that my little girl is called politics and we won’t get into that now.
So here I am, Addie, hanging by a thread from the 60 foot tall eucalyptus tree. When will my medicine get approved? When will I start it? Do I even have enough time to see if it will work or will I be too delayed by the start date? What if it doesn’t work? What if nothing works? I wish I stopped having these fevers. I wish I didn’t feel the effects of my cancer like before. I wish I could just drop you off at daycare, go to the classroom and teach, pick you up. Have dinner as a family. Give you a bath and put you to bed like a normal fucking mom. But as we know I am not normal. Therefore your life will not be normal. Everybody’s lens on what is normal is different anyways. So there is no normal.
I am hanging by a thread. I am holding on so tight. I will never let go. I will never let go. But all I can do is keep doing what I am doing. I need to stop wanting to be normal because I cannot ever get to be and it is causing me to suffer wanting what I will never get. I need to stop feeling like the victim because when you make yourself the victim your living in misery. It shouldn’t be me. Life’s not fair. Blah Blah Well it’s not fucking fair, so I just have to deal with that fact. I need to stop trying to monitor and measure time. How long I will live. When I will die. Because when I am predicting my own death, I am not enjoying my time here.
I will keep fucking fighting. I will keep trying to leave things behind for you, so I can imprint on you as much as I can. What happened is by trying to imprint on you, I have ended up imprinting myself on so many others. Even strangers. I am so glad people are still learning from me because my passion to teach will always live on. But don’t be a teacher in Arizona. You’ll be too poor. Chicago will give you double the salary. Just really don’t be a teacher at all. So sad to say, but these days not a very good profession.
Know Adeline that it might be a thread that is holding me up, but I WILL NOT LET GO. My gloves are up, my head is up, we went to library class today smiling. I am cooking dinner even through my fever, and I will not miss dinner as a family. I have woven that thread between every finger and every fucking last toe. I do not know that I will be there when you are five to give you my gold earrings, but I know I will be here as long as I fucking can. I will not let go.
When I am gone, know I never let go, but the thread broke. It broke and I fell from the tree. Just like I always tell you, when I am gone - know just like the wind the rustles the leave, I am here even though you cannot see me. I am proud of you Adeline. I know that you will be a wonderful girl that I will have so much to be proud of.
Be authentically you. If you have to change yourself for your friends, they’re not real friends. There is no normal, so don’t try to fit in that box. Just hold your head high and smile. “Love begets love,” Grammie told me my whole life. I must have put a lot of love out there in my 31 one years because I could never imagine receiving so much of it, but that just reveals the truth in that lesson. Be tolerant towards everyone and of course be kind. We are not better than anyone and no one is better than us. Life is not about measuring and ranking, at least it shouldn’t be. Life needs to be about tolerance and kindness. No matter what position someone works in a facility – they deserve the same hello and thank you than the next person. I say hello and smile at the janitor and know their name. I saw hello and smile at the principal and know their name. There is not one that is more important than the other, if you are truly living a life of kindness.
I’ll check back in soon my sweet girl, but think about that for now. Until next time – be the best person you can be.
I will always love you near or far.