What an emotional basket case I have been this morning. The first thing I laid eyes on this morning was a post by a woman I follow on Facebook and Instagram. She is very young and very beautiful and she has metastatic breast cancer. She is a single parent with three kids, ages ten and younger. Her older daughter’s face is engraved in my mind. I pray, and pray, and pray for this young girl, that she should not have to endure what the universe seems to have in store for her. So does her mother. In this particular facebook post, she is talking about how long she might have to live. She hopes, but her journey is a hard one. So, as she says, she writes birthday cards for her kids to open after she is gone. She writes graduation cards, wedding cards, buys a cookbook for her daughter when she has her first home, with a photo tucked inside of the two of them cooking together.
At the end of her post, she includes a quote from Motherless Daughters, by Hope Edelman:
“When a daughter loses a mother, the intervals between responses to grief lengthen over time, but the longing never disappears. It always hovers right at the edge of awareness, prepared to surface at any time, in an place, and in the least expected ways.
“I am fooling only myself when I say that my. mother exists now only in the photographs on my desk or in my albums, or in the outline of my hand, or in the armful of memories I still hold tight She lives on in everything I say and do. Her presence influences who I was and her absence influences who I am.
“There is an emptiness inside of me — a void that will never be filled. No one in my life will ever love me as my mother did. There is no love as pure, unconditional and strong as a mother’s love. And I will never be loved that way again.
“I truly believe that the death of my mother has made me the way I am today. I am a survivor, mentally strong, determined, strong willed, self-reliant, and independent. But I also keep most of my pain and anger inside, because I refuse to be vulnerable to anyone.”
I have spent a lot of time in cancer land lately. It’s not like I have a choice, really, because cancer land has moved into my home. In my own case, I am between treatments. I have been between treatments for a month now, since it was established that my first treatment had failed. I have a very unusual form of metastatic breast cancer. It is lobular carcinoma, which makes up only 10-15 percent of breast cancers. Lobular is far more difficult than the other kind of breast cancer, ductal, first because it grows in rows of cells rather than clumps of cells and is very difficult to find. The cancer I have does not show on ultrasounds, on CT scans, or PET scans. It has only shown on MRI and biopsy. The other thing about lobular is it is just not as susceptible to chemotherapy. The cancer I have already completely escaped the aggressive chemo I had in 2017. The saving grace is that lobular carcinoma is usually hormone receptor positive, and they can treat it with drugs that target those receptors. Mine, however, is rare among the already rare cancer, because it is not. It was originally. It was 99 percent estrogen receptor positive when I was first diagnosed. The first biopsy after metastasis was only 2 percent positive. As my previous oncologist said when he looked at my records, it is “acting like triple negative.” Prevailing wisdom is to start treatment with the targeted hormone therapy regardless of how few receptors there are, so that is what we did. And we checked the one tumor we knew to make sure it wasn’t growing, and it wasn’t. Still hasn’t as far as I know. But the cancer has escaped that one area now and has spread from my collarbone, up my neck to the base of my skull, and down across one side of my chest (not the side I had cancer on, by the way). Because it is lobular, it was hard to convince the doctor that it was spreading, because the CT scan couldn’t see it. Finally it made its existence obvious. I went in for an appointment after my CT and pulled down the shoulder of my shirt. From across the room, my oncologist saw it, and diagnosed it right there, although she also ordered a biopsy, which confirmed it.
Because it is such a rare and difficult cancer, however, it turned out that I would need another biopsy to get more tissue to check for all sorts of mutations to discover which of the treatments available might kill it. For various reasons, I have not yet had that. I had an appointment on Friday, but I have to go to the cancer center about an hour away to do it, and we had a blizzard here, so my appointment was re-set to next Friday. Meanwhile, I woke up yesterday morning with a bruised feeling at the base of my throat, and my first thought was cancer, and where is it going, and what is it planning?
Honestly, I can’t whine. One thing I have learned from hanging out in cancer land is that I AM BLESSED! First, I am not a young mother like so many of my metastatic sisters are. My children are all adults. They are strong. They are loved, and they love. They each and every one have difficulties and sorrows in their lives, and every single little one breaks my heart. I am a caretaker by nature. I want to fix everyone’s hurts. If you are at my house and you have a physical problem, a headache or an upset stomach, I will tell you, “I have a pill for that,” and will try to fix you. If you have non-physical problems I am likely to try to fix those as well. I have learned that this is not always a good thing to do, and I’m trying to be more discerning, but this is who I am. So I have to wonder, how on earth will all my family survive without me to offer them a cure for whatever ails them? It may not cure them. It might even irritate them. But, they will always know that they are loved.
The other reason I am blessed is that I have not reached the sick part of metastatic cancer. That is another thing I have recognized in wandering through cancer land. And it scares me. Where could it spread? And what would that be like? It’s kind of like having a missing child in that it leaves your mind open to all possibilities, most of which you don’t really want to think about.
One of the things I did this morning was start writing in a journal I bought to leave for a loved one. That was the first thing I tried to impart. I love you. I fell in love with you the first time I saw you, and I will never fall out of love with you. And love cannot die. Love is energy. The love in my heart is not dependent on presence, not yours and not mine. It is always there. It always exists. It’s the exact same thing I told Michaela. “If ever you are sad or lonely and I am not there, just touch your heart and you will find me there.” Yes, you will. And not only in your heart. My love is everywhere. It is in the warmth of the sun, in the chill of the breeze. It is like a butterfly that burst out of the cocoon of my heart and will follow you everywhere, all the days of your life. I just have to make sure you know it’s there. I have to make sure you can feel it.
So here is another thing that happened in this last month. I picked up the pillow from my bed, and I hugged it like I was hugging Michaela. I told her I was so sorry, and I am so sorry for so much, but in this case I was sorry for not having done that very thing before, sorry that wherever she had been I hadn’t tried to hold her. But I had not allowed myself to think of her anything but alive, and if she was alive in a body somewhere, how could she be present with me? But something else happened, as I came to feel her as being truly present there. To my surprise, she was very much like a nine year old girl. She even jumped on my bed. Then I felt my mother, and I have to apologize because my first reaction was to keep her away, because I was afraid she would judge me for all my failures. But then I realized, no, she is my mother, and she loves me. I was in such a difficult part of my journey, she just wanted to be there for me, just as I want to be there for those I love. I felt her slide in behind me on the other side from where Michaela was, and put her arm around me. It made me just a teeny weeny bit less afraid of the future, feeling that Michaela and my mother would be with me throughout whatever I had to go through, but only a teeny weeny bit. I have to admit, I informed them that I wasn’t ready to actually need their help for awhile. Nevertheless, they have hung around.
But it is a fact that I although I may not need help dying right now, but I absolutely do need help living. I have spent the last month in the wilderness of grief. So much grief, so many questions, so much doubt. I have spent more time in my bed that I would have thought possible. My brain doesn’t like to be idle. It likes to have information pouring into it. You want to know how I survived for 32 years not knowing what happened to my daughter? Distraction and denial, pure and simple. Fill my head with thoughts. No, don’t look in that black hole. Look over there! Look at that thought I haven’t examined, the book I haven’t read, a series I can binge watch. In fact, most of the time I try to do multiple things at the same time. I watch TV, but I have the internet handy for those slow moments when my mind starts to drift. But I’d had no idea that I was able to just lie still in my bed for so long. I was unaware that I could sleep on and off all day and then sleep all night.
I felt unmoored. I felt like I was floating. My feet could not touch the ground. Everything I had ever thought, everything I had ever believed, had FAILED ME COMPLETELY, and it had done so at the very worst time. It was a time when I really needed something, anything, to believe in, but I did not any longer believe in anything. I mean, in my heart and my head I have a deep and unshakeable belief in “God,” but it was not necessarily the God I had been pursuing, and I didn’t know how, anymore, to engage in that pursuit. Not only did I need something to lean on, but I was, I am, in desperate need of the ability to see the path ahead of me. There are so many things I need to learn, to do. There are earthly things, and maybe I can someday muster the wherewithal to do those things, but there are eternal things. Ultimately, I am not sure we can truly know those answers here in this life, but I feel a need to. That is where I am today.
I have a tentative plan to get back to living my life in February. I have pictures of what that looks like in my head, but I am just not ready to do it yet. I need a little while yet to hibernate within myself. I am fully open to the sweet life-giving love of my family, and messages from my friends have helped so much. But my powers of concentration are shot. My motivation is nonexistent. The double dose of antidepressants my doctor prescribed has yet to fully dissolve the wet cement that fills my limbs and my spine whenever I contemplate, say, cooking a meal. We have snow outside, and I still have that California girl’s fascination with it. But I cannot bring myself to pull my boots on.
This morning when I was looking through my photo library for something to pin to this blog, I saw photos from last Spring, photos of the table on my balcony, holding my coffee cup, my books, photos of the lush greenery in the back yard. I remembered all the incredible variety of nature sounds we have here, and the fireflies in the summer. Something to look forward to.
Awhile back I was watching an instagram video by Kate Bowler. If you are not familiar with Kate, she wrote the book Everything Happens for a Reason and Other Lies I’ve Loved. She also has cancer, stage 4 colon cancer. She wrote about it in her book, but hasn’t written a lot about it since then. She has instead veered off into the purity of inspiring others. In addition to social media, she has a podcast. When I was reading her book years ago, about how everything doesn’t happen for a reason, I kept thinking, “have you read your book?” It’s impossible to look at the trajectory of Kate’s life without seeing that there is a huge purpose even to her suffering. It may not be what she would want. It may be a road of suffering. But it is a road which lifts and blesses so many people! Her impact on eternity is huge! Of course, she is also a mother with a very young child, and I am absolutely positive that all those people and purposes are as nothing compared to her own life, her own loves.
At any rate, at the end of this short video, Kate quoted Dread Pirate Roberts, saying, “Life is pain, your highness. Anyone that says differently is selling something.” But Kate said it with a turn of her head, with such a beautiful, glorious smile, it just fell like a gossamer scarf over me, so sparkly and beautiful that it obscured the actual meaning of the words.
And that is the key. We flock to hear what she has to say because we already know that life is pain. What we want is to find someone who will tell us how to live with that fact.
I kind of put myself into that same category. As I’ve said before, my job in life is to wave my hands and say, look at me, I’m still alive! So after I dig myself out from under this avalanche that has fallen on my in the last couple of months, and get up and resume real life, I’ll be back. And ultimately, I will remind you that this pain is ultimately what makes life worthwhile, because it cannot exist apart from love, and love is the thing we all came here for.
Blessings on all our heads!
We are loved.