This morning I stepped outside, and I noticed that some of the early blooming trees have started sprouting leaf buds, and it took me back to last year. It was Springtime when I was diagnosed with metastatic breast cancer last year, and I had also just moved to my little corner of rural Iowa a few months before. I was so completely in love with this place, with my open yard that was filled in the mornings with the sounds of birds and wildlife so I might have thought I was at a zoo instead of on my deck. And it was so beautiful. A few days ago my neighbor was talking about Spring here, and he commented that it looks like Ireland — an apt description.
Metastatic Breast Cancer, for those unfamiliar with the term, is cancer that has spread to other parts of the body. It is treatable, but it is not curable. I remember googling it before I even got home, and seeing a pretty grim prognosis. I immediately turned into a complete basket case. There were a whole lot of things in that messy basket, but one of them was this place. I was so afraid that I would never see another beautiful springtime here. I began to obsess about having my ashes buried in the back yard, with a tree planted on them. I wanted the house never to be sold, never to leave the family, so that all my children and grandchildren could come here and enjoy it as much as I did. I wanted my grandchildren to play in the yard above where my ashes were buried.
This was not a small thing. I was completely nuts. I’d sit and cry and cry, and I’d tell my husband these things, and that was all a bit much for him. When I was diagnosed, his response had been, “It’s okay, honey. We beat it before and we will beat it again.” Sometimes I think I should have just left it at that, instead of telling him that this was not to be beat.
Then I had a PET scan. If you have read books or blogs or facebook posts by people with cancer, or if you have watched movies, you might have heard people referring to a scan lighting up like a Christmas tree. That is what the PET scan is. They inject radioactive glucose into you and it gets sucked into the cancer cells and they light up. I was braced for the Christmas tree line, but as the doctor read the results to me on a Telehealth appointment, he said, “abdomen, nothing, chest nothing,” basically went through my body saying “nothing, nothing, nothing,” which was really comforting until he got to the place where my actual tumor was, diagnosed by MRI and biopsy, and he said, “… nothing.” I am unlucky enough to have lobular breast cancer, which grows in rows of cells instead of clumps of cells, and for that and possibly other reasons, it does not always show up on scans. So who knows?
My next visit was with a nurse practitioner, since my oncologist was on maternity leave. I asked her for her opinion of my prognosis, and she said, “Oh, I expect to see you here in ten years.” I was quite happy with that. Ten years was a long time. I came home and informed my dogs that I was going to outlive them, something that is actually really important to me. Since then I figured out that her estimate was based on some incorrect assumptions, including that the cancer was not in any place besides the tumor we knew, and also that it would respond to treatment. Even among the medical establishment, lobular breast cancer is not always taken into account. It makes up 10-15 percent of breast cancers, and it behaves very differently from ductal cancer. It does not respond as readily to chemotherapy, for example. Usually it is hormone receptor positive, so the treatments used for it attack those receptors. Only 10 percent of lobular cancers are not hormone receptor positive, and mine effectively falls into that category, since my HR is only 2 percent. Because of that, the usual first line of treatment, ibrance and faslodex, failed miserably, with my cancer spreading visibly and palpably in great leaps and bounds from its original metastasis. In fact, it’s funny, because I remember it used to be that when I would feel something and think fearfully, “could it be cancer?” Now I’m just, “Oh, another tumor.” Or a bigger tumor. I have tumors that you can feel but not see that are like rocks, and tumors that are like ropes, and other lovely tumors that look like purple-red welts. I will not be wearing tank tops this year, and I am so glad I didn’t get that chest tattoo I wanted!
Now I do worry about other things, about pains and twinges and other parts of my body misbehaving. But what to do? If they don’t show on any regularly performed scans, and there is no real evidence that they are anything other than the results of having lived on this earth for a fair number of decades and perhaps not always taking the best care of myself, do I pester my doctor for more invasive tests? I have decided no. I have tumors I can see or feel. The same treatment would be used for other tumors as for the ones I can see, so I at least have a way to gauge whether the treatments are working.
I never thought I would have such a blasé attitude towards cancer, but what else can I do? And this really is the perfect type of cancer for me. If there is one thing I have lacked in life, it is the patience to wait for answers. As you can imagine, having a missing child for 32 years really gnawed at that. So now here I am again. I have characterized the type of cancer I have is a call to faith. I can’t know all the answers. I can’t know what is going on. I can’t know if it is in a part of my body that will threaten my life. I really just have to live by faith, one day at a time.
Not that this is ultimately different from any other type of cancer. I know two people in the last year who have gone in for chemo, and have had a reaction to it. They have been hospitalized and never left the hospital. Once had only just been diagnosed.
I actually find I have a ridiculously positive attitude about all this. I belong to a lot of cancer groups, and most people have all sorts of bad words they use for their cancer. When my metastatic breast cancer was first found on an MRI, it was described as “wispy strands embedded in fat.” From this description, I got some wacky idea that my cancer was actually beautiful. I visualized it as sparkly strands, or fiber optics. I actually talk nicely to it. I put my hand on it, and I tell it that I know it’s a part of me, and that I love it, but that it really needs to go. So far, that hasn’t worked!
Tomorrow I am starting a new chemotherapy. Honestly, none of the treatments I have had for cancer have been nearly as bad as I had feared. The surgery was not that painful, and chemo did not make me vomit. I have already done a full course of adriamycin, which is the strongest chemotherapy agent created, so why worry about Halaven? But I do. Whatsmore, I am having my second moderna Covid vaccine the day after my first chemo treatment, and I know a lot of people who have had a hard time after that! So today I am cleaning, changing my bedding, doing my laundry, and going to the store to stock up on things, because I’m thinking I might be spending a few days in bed! But I’m okay, still.
This is the essence of my okayness at this point. I have no control over any of this. What will be will be, regardless of my fretting and fears. And here is the other thing: everything will be okay. Oh yes, there are those who will miss me, but ultimately they will be okay. It is interesting because in the last year I have seen the deepest needs of my children being met in completely unexpected ways. When one of these unexpected things happened, I would have sworn I could hear God saying, “You don’t think I would have left anything so important undone, do you?” They have become strong, these children of mine. They will be okay. And seeing that, seeing that my concerns about my family are not my concerns alone, I have faith that everyone and everything will be taken care of if I should leave.
And the same goes for me. I spent some weeks lying in my bed day after day, after I found out that my daughter’s killer had been apprehended. I thought about Michaela, I thought about death, I thought about all my still unanswered questions. Had I really learned what I needed to learn? Had I done the things I needed to do? Was I in a place where I could walk into death with confidence? I hadn’t. I didn’t. I wasn’t. I was not sure who I was even, or what I believed about anything.
Then in February, things shifted. When we moved to Iowa, two of my adult children (and their children) had moved with me. My son came to me first and told me that they were moving. His job in Iowa had a transfer available to Oregon, which is where he and his wife had always wanted to live, and they were going. I was actually pretty heartbroken, but I understood. It was good for him, to have his dream come true. It was even good for him not to have to be here if things went bad. Then, just as suddenly, my daughter noticed a house for sale, which she had passed dozens of times on her walks around the neighborhood. But this time it grabbed her attention. Within a week or so she and her partner had made an offer on it, and they will be moving into it at the end of the month.
Here also, it was as though a plan was being executed. My daughter will be only five houses away from me, close enough to visit, close enough for my grandson to come over, close enough that she will be there if I ever need help, but for the first time since Michaela was born, I will not have any children in my house. My husband will be here, but he works and does his own thing. I will have time to myself. I will have my own thoughts, unfettered by the thoughts of others. Perhaps I can find the answers to some of those unanswered questions. One of the things that haunted me when my son left was that I was worried I would never see him again. I opened my hand and opened my heart and began what felt like a process of letting go.
I really hope this doesn’t sound too maudlin, but this is where I live right now. My faith resides in that neverland between hope and acceptance. Nobody lives forever, right? Did I teach my children how to live, or did they teach me? I don’t know. In the end, I guess I will teach them how to die, how to open their hands, have faith, and let go.
But I’m going to fight for as many days on this earth as I can, and I am going to rejoice at seeing the beautiful Iowa spring that I was so afraid I would never see. I am going to try to listen, and learn, and serve. And love.