I remember thinking, decades ago, that if I ever got cancer, I wouldn’t want to know. At the time, I considered it a death sentence, and I did not think I had it in me to have to spend an extended amount of time knowing I was going to die. I imagined shaking in the dark of night at the thought of facing death, weeping all day at the thought of leaving all I those I love here in the world.
It was many, many years later when I was diagnosed with cancer for the first time. In the interim, my father had been diagnosed with lung cancer, and had died of something else first. My mother had been diagnosed with breast cancer and had survived, dying of emphysema many years later. She’d had very early stage breast cancer, Stage 1 at the most, possibly Stage 0. She had a lumpectomy and a few weeks of very localized radiation treatments, and that was it. So when I was told the results of that biopsy, I thought of my mother. She had kind of made it look like a walk in the park, so I wasn’t terribly afraid of the diagnosis.
Nevertheless, my first visit to the oncology clinic was a heavy experience. My assumptions about cancer had not really changed. To me, an oncology center was where people went with a death sentence. I expected it to be draped in black crepe paper or something. I had not yet learned that it is not a place to go to die. It is a place to go to be healed. Eventually I learned this, as I spent many hours in the chemotherapy chair with this picture hanging on the wall within my view.
What I was terrified of was the treatments. I remember walking past the surgical hall on my way to my mastectomy, and I literally almost passed out at the thought of what they did to people in there. I was afraid of the notion of cutting. I was afraid of anesthesia. I was afraid of the pain. Over the next two years, I had a total of six surgeries, a couple of which were lengthy and extensive. I learned not to be afraid of them. I discovered that general anesthesia is a beautiful escape. One minute you are here. Next minute you are completely gone. I had a great surgeon, who was quite on top of pain control and always used a long acting local as well as general anesthesia, and I had very little post operative pain in any of the surgeries. I had a Diep Flap reconstruction, a lengthy and extensive surgery, and afterwards my husband kept telling me that the pain pump had activated, so I could push it and get some medication, and I kept telling him I didn’t need it. When I went home from that surgery, I told the doctor I had no need for the prescription for pain pills.
I was terrified on my first day of chemotherapy, too. I remember as we were getting in the car, my husband told me he wished he could take it for me, so I wouldn’t have to. But it turned out to be not nearly as bad as I had thought it would be. I had food aversions. I even had to give up coffee because the taste of it became so awful, and the vegan foods I was used to eating made me feel nauseous just thinking of them. But I did not actually vomit even once. I was tired. I was so weak I couldn’t hold a towel up to fold it. But it was bearable.
I wasn’t actually that worried about radiation, but it turned out to be the worst of the treatments. Being strapped into a poorly fitted mold every day ended up giving me the most excruciating shoulder pain. It was a 10+. The level of the pain made me nauseous. I could not sit back on a chair or couch, because my back resting against anything set off horrible pain. I could not sleep for two weeks. I put a table next to my bed, sat on the edge of my bed, and leaned over to rest on the table, like if you were taking a nap at your desk, and dozed briefly. At the end of the radiation therapy my skin was burned black with really painful burns. It definitely was the worst of my treatments.
My cancer had been estimated at Stage 2 after an MRI, which showed it was quite a bit larger than originally thought. When I had my mastectomy, they removed eleven lymph nodes, most of which they considered to be healthy. But they were not. Cancer was found in every single lymph node. That moved me to Stage 3C, the worst it can get before it is considered incurable. The PET scan showed no further metastases, though, so I went through all the treatments and was pronounced “cancer free” at the end. Except for the fact that my oncologist told me he wanted me to keep the chemo port for a year, because “your cancer is very bad, and I don’t know when it will come back.”
A year later, before the port’s removal, I felt a lump on my clavicle. My family doctor in California had an ultrasound done. They didn’t see anything. It didn’t go away, so a year later, my oncologist had another ultrasound done. They mentioned four lymph nodes, and suggested a CT scan. The CT scan said the lymph nodes were not big enough to worry about. My doctor said he would check it every three months, and that if it got bigger, he would have further CT scans done to check on the nodes. When I got to Iowa and found a physician, she immediately ordered an MRI. It was the MRI that clearly identified it as an unfriendly tumor. If I had never had the MRI, it might never have been found.
Take that to heart, people. If there is a lump, and you can feel it and your doctor can feel it and ultrasound can’t see it, and CT is looking at something else, demand an MRI. Don’t accept, “oh, it’s probably only a fatty tumor.” I have had this new thing for a year and a half. Imaging has confirmed that during that time, it has spread beyond the immediate area, from my clavicle to the base of my skull.
Believe me, I am pretty upset by this. I sent a message to my previous oncologist. I sent my MRI report to him, and I told him in the future he should go that extra step and have an MRI done. He said he was sorry, and that yes, he would consider doing an MRI in the future in cases like this. Here is perhaps my consolation, if my experience may help save other people in the future. The cancer is still invisible to ultrasound. The biopsy had to be done by CT, with direction from the MRI.
At this point, the biopsy has confirmed that it is metastatic cancer. We are waiting for the rest of the pathology report to determine its genetic makeup, to know what drugs will best target it, but I will be doing chemo. I will have a PET scan next week to determine whether it is localized or whether it has spread, to determine whether surgery and radiation will be considered as therapy.
The thing is, people, metastatic cancer is Stage 4. It is considered incurable. You can think of it like a dandelion. Once it turns to fluff and blows away in the wind, it will reseed and take root where it lands. Therapy for Stage 4 cancer is like steps you might take against dandelions. You can dig them out (surgery). You can apply local weed killer (radiation). And those things will kill that particular dandelion. But if it has turned to fluff and blown away, it will take seed and grow wherever it has landed. So you spray your entire yard with weed killer (chemotherapy). And it does a pretty good job. But what if a seed has hidden somewhere? What if it is hiding under a deck, or a leaf? Or what if it is an area that the weed killer didn’t quite reach. Perhaps it might take root there. Or perhaps it will take flight, and find another place to land, and will grow there. Perhaps that particular dandelion will have mutated in some way so that it is immune to weed killer.
My daughter loves dandelions We have some growing it our yard, and I keep wanting to dig them out, and she wants me to leave them. “They are wishes,” she says. And that they are, too. There is nothing that is all good or all bad. In at least one stage, dandelions are pretty yellow flowers, that children like to pick for their parents. Then they are fluffy flowers, only really unattractive because their legs tower so far above the grass. Then children of all ages pick them and blow on them, and send their wishes into the wind.
Haha, I just realized that I have a breast cancer shirt, which has a dandelion on it, whose seeds are blowing away as little pink ribbons. Ironic.
At this time I am waiting for the PET scan, which will allow the doctors to give me a prognosis. But the bottom line is that metastatic cancer is terminal. You can live for years after diagnosis, or you can not. The five year survival rate is 22 percent.
This fact settled over my family like a blanket. I sent a text hime from the doctor’s office when I got the results. “Metastatic breast cancer.” By the time I got there, my daughter and my son had both googled it. There were some tears. There were some courageous conversations. Of all my children, the one I worry most about is my youngest daughter, but she showed such courage. “I don’t want you to worry about me, mom. I just want you to worry about yourself.”
But the fact is I’m not at all worried about myself. I’m not afraid of dying. What I am afraid of is the grief it will cause to my family. What I am afraid of are those times when they will feel that they need me, to comfort them in their sorrows, to strengthen them when they are afraid, to rejoice with them when they are celebrating, and I won’t be there. And I really want to see their stories unwind. For my children and my grandchildren. I want to see where they travel to on their journeys, who they become, what they do and don’t do. Whatever else I may tell you, and I will tell you many times that I am brave, that I am okay, and it will be true, but the fact of the matter is that I am sitting here sobbing as I write this. Oh God, I do want to experience the great adventure of the life after this one, but I am needed here. Please let me stay for many years. Let me see all my children settled with people who love them. Let me meet all my grandchildren and watch them grow.
The first few days after diagnosis, I was just tired. I love my new house, and I love to take care of it, but for a few days I just let everything fall apart around me. Washing dishes was about as much as I could handle. I have been filled with joy lately. I’ve been filled with laughter and dancing and peace. And that joy and peace actually did not go away. I just didn’t have the energy to dance. Finally I got my butt up. My daughter has been into plants lately. We have a yard here, and we are fortunate to have many perennials that are growing. I know we could add more, but my daughter has injured her knee, and my knees and back don’t like being on ground level, so we are just enjoying what we do have. But one of my favorite places in the world is my deck, and we have been indulging in planter gardening. Speaking of dandelions, I’m pretty sure we have a number of those sprouting in our pots, but we are taking the (actually Biblical) advice of letting everything grow up together and then sorting them out. We have planted green onions and cucumber seeds, and strawberries, which don’t seem to be growing. We planted basil and cilantro seeds. We have a lilac bush, and a Japanese maple, and I hope to grow them on my deck for as long as possible. My heaven on earth is to go out and sit there surrounded by the beauty of nature, grass, trees in abundance, perennials with huge curly leaves, and my potted plants. The weather here hasn’t really settled. Winter is still battling with spring, so there has been cold, there has been rain. I understand that in the summer there is some pretty awful heat. Don’t tell my husband, but I have ordered a larger umbrella to go over the table and chairs, and I have a little fan I can take out there too! But that is where I want to sit, and read, and write, and pray.
I hate that this is happening in the time of covid. I hate it because I will be at huge risk while going through chemotherapy. I hate it that this is happening not only at the time of covid, but also at the time when society has decided they are tired of protecting themselves and each other, and they are going back to living as though nothing really happened. I can stay home. I would like to be able to go out, but I also love being home, so I’m okay with that. But everyone in my family can’t. They have to go out in the world, because they have to work, and they have to get the things we need. I hate it because I don’t want to burden those I love. I don’t want them to have to have a greater fear or have to take greater measures, because of me.
I hate that this is happening in the time of covid, because I want to have company. I want all my family from the west coast to come to visit and enjoy this beautiful place with me. I want my daughter’s friends to be able to come and visit, because I know it would be helpful for her to have their support. Society shut down soon after we arrived in Iowa, so we have not had a chance to establish ourselves much outside our home. We have pretty much relied on each other for company and support.
I hate that this is happening in the time of covid, because for me, hugs are the very best medicine in the world. I have been getting lots of them from my daughter and my husband. But when I was originally diagnosed with cancer in California, my doctor hugged me. My surgeon hugged me. My oncologist hugged me. When I met with my PCP and she gave me the biopsy results, I could feel that impulse to hug me coming from her, and I felt it too. I probably would have done it, too, but she is a medical professional and knows better.
This is one of the worst things about covid, living in a touchless society. I understand why people don’t want to do this anymore. I don’t want to either. But I want to stay here in this life for as long as I possibly can. People have asked what they can do for me. I have only one answer. Stay healthy. Take precautions and stay healthy.
I will post an update when I know what is going on. Meanwhile, I would appreciate your prayers. I can feel them. I know God is real because when people are praying for me, I can feel God tapping on my shoulder.
Michaela, I know I will see you again one day. If you are not alive in this world, however, I’d rather put that off, if it’s all the same to you. And if you are here in this world, well, this would be a good time to come home.
I love you forever, baby girl.
And to all who read this, I love you too.