I grew up in a family of eight, and when my youngest sister was born, I was old enough to experience the bliss that babies can bring. I was delighted by her toddling existence and saw the joy she gave my mother.
After high school, almost every girl I knew started a family, some right after graduating. I got married at 21. It only lasted about two years and I left before we had any children. After the divorce, I told myself I'd never marry again. I didn't want children unless I found a lasting relationship. But my relationships weren't lasting into my late twenties, so I moved to Washington state for a fresh start.
After high school, almost every girl I knew started a family, some right after graduating. I got married at 21. It only lasted about two years and I left before we had any children. After the divorce, I told myself I'd never marry again. I didn't want children unless I found a lasting relationship. But my relationships weren't lasting into my late twenties, so I moved to Washington state for a fresh start.
A few years later, my life was still not where I wanted it to be. All of my siblings were now married, and my relationship issues remained. My career wasn't fulfilling. In the meantime, I saw countless pregnancy announcements and baby pictures on social media.
In my mid-thirties, a customer from the post office set me up with Matt. On our first date, he said that he would take care of me. It seemed funny at the time, but the sincerity of those words became apparent very quickly. We moved in together about a year later.
At a doctor's visit, my PCP asked about my living situation. I told her that I had moved in with my boyfriend, and she asked if we wanted children.
"Maybe," I said.
She said that if so, I should try to conceive within the next year or two, because my risk of miscarriage would increase after turning 35.
As our relationship progressed, Matt and I agreed that we wanted children, but felt that we had some time. We got engaged and eloped about six months later, in March 2021.
You can read about my initial symptoms in the third section of this post.
After my scans, my neurologist referred me to a neurosurgeon. Her name was Dr. Srinivasan. She said that she wouldn't usually suggest a biopsy based on my symptoms, but that it was "something to consider" if we wanted to conceive. It involved creating a small hole in my skull in order to access the brain tissue with a specialized tool.
Dr. Srinivasan also explained that the mass was causing something called a Chiari Malformation. My brain stem was extending abnormally below my spinal column and crowding the space through which spinal fluid flows. The pinching of this space caused my pain and visual symptoms, but I could have a relatively simple procedure to ease them. They would shave down a small section of bone from just underneath my skull, creating more space for my spinal fluid to flow.
Dr. Srinivasan referred me to Dr. Graber, my oncologist at UW. This was confusing and a bit terrifying to me, because so far they were still insisting that they didn't know what it was. I remember how surreal it felt to enter an area of the hospital called the "Alvord Brain Tumor Center." Dr. Graber said that although it was clearly our choice, we may want to get the biopsy so that we knew "what we were dealing with" before conceiving. So we decided to have the surgery and biopsy at the same time.
To read more about my diagnosis, please read the bottom section of this post, or the article I wrote for Cancer.net. Then come back and finish this one!
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When asked about a prognosis, Dr. Graber said that out of a sampling of 100 people with my grade of astrocytoma, people lived an average of 5-8 years after their diagnosis. "That's such a short amount of time," I thought as I choked back the tears. "I can't have children now."
Dr. Graber was also honest about the risks of conceiving. He said that my migraines could get worse, and if the tumor started to grow during pregnancy, I may have to make a "heartbreaking" decision. Since overall swelling happens during pregnancy, I could experience more pain in the back of my neck and/or headaches.
This type of c-word may be slow-growing, but it is terminal. If I am lucky enough to successfully have a child and live eight years, wouldn't it be difficult for that 8-year-old child to lose their mother? When, and how, would Matt and I tell them about my condition? How would we explain that we purposely conceived after my diagnosis?
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A few weeks ago, Matt and I saw a chickadee flying into the aqua-colored birdhouse on our porch. I had used it as a decoration for years, and we were surprised by the thought of having a nest. So we decided to look. Matt carefully pulled the back open, and there Mom was, lying in a small nest of green moss, brown twigs, and bits of white fur. She seemed surprised to see us, but didn't fly away. Matt quickly but gently replaced the door.
I decided to name her Venus, and we called the father Mars. Venus would be laying eggs soon if she hadn't already. A few days later, I checked the house when I knew both parents were gone. Venus had lain five tiny white eggs with brown speckles.
Matt and I had planned a trip to Canada, so we left knowing that the eggs might hatch while we were gone. A couple of days after our return, we saw that one baby had hatched. He already had feathers and a mouth almost as wide as his head. I named him Cupid and smiled whenever I heard his tiny baby chirps.
The birdhouse was on the ledge of our porch, facing West. The afternoon sun shines hot there, and there was a heat wave coming, so Matt became concerned about Cupid and the remaining eggs. We found a sail-style shade at our local hardware store and installed it in front of our porch. Temperatures rose into the upper 90s, so we decided to also provide some water in a small birdbath. Cupid eventually fledged, but we don't think the other eggs hatched.
I shared this story because it seems symbolic. Caring for living things comes naturally to both of us. I enjoy fostering animals, and Matt helps me. But there is an existential element to my desire to have children. I want, as Shelby from Steel Magnolias says, "a little piece of immortality" to leave behind when I am gone. This desire became even more poignant after my diagnosis.
When asked about a prognosis, Dr. Graber said that out of a sampling of 100 people with my grade of astrocytoma, people lived an average of 5-8 years after their diagnosis. "That's such a short amount of time," I thought as I choked back the tears. "I can't have children now."
Dr. Graber was also honest about the risks of conceiving. He said that my migraines could get worse, and if the tumor started to grow during pregnancy, I may have to make a "heartbreaking" decision. Since overall swelling happens during pregnancy, I could experience more pain in the back of my neck and/or headaches.
This type of c-word may be slow-growing, but it is terminal. If I am lucky enough to successfully have a child and live eight years, wouldn't it be difficult for that 8-year-old child to lose their mother? When, and how, would Matt and I tell them about my condition? How would we explain that we purposely conceived after my diagnosis?
......................................
A few weeks ago, Matt and I saw a chickadee flying into the aqua-colored birdhouse on our porch. I had used it as a decoration for years, and we were surprised by the thought of having a nest. So we decided to look. Matt carefully pulled the back open, and there Mom was, lying in a small nest of green moss, brown twigs, and bits of white fur. She seemed surprised to see us, but didn't fly away. Matt quickly but gently replaced the door.
I decided to name her Venus, and we called the father Mars. Venus would be laying eggs soon if she hadn't already. A few days later, I checked the house when I knew both parents were gone. Venus had lain five tiny white eggs with brown speckles.
Matt and I had planned a trip to Canada, so we left knowing that the eggs might hatch while we were gone. A couple of days after our return, we saw that one baby had hatched. He already had feathers and a mouth almost as wide as his head. I named him Cupid and smiled whenever I heard his tiny baby chirps.
The birdhouse was on the ledge of our porch, facing West. The afternoon sun shines hot there, and there was a heat wave coming, so Matt became concerned about Cupid and the remaining eggs. We found a sail-style shade at our local hardware store and installed it in front of our porch. Temperatures rose into the upper 90s, so we decided to also provide some water in a small birdbath. Cupid eventually fledged, but we don't think the other eggs hatched.
I shared this story because it seems symbolic. Caring for living things comes naturally to both of us. I enjoy fostering animals, and Matt helps me. But there is an existential element to my desire to have children. I want, as Shelby from Steel Magnolias says, "a little piece of immortality" to leave behind when I am gone. This desire became even more poignant after my diagnosis.
I am a member of a Facebook group called "Astrocytoma Adults." I recently posted the link to my blog, and two mothers with the same diagnosis as my own reached out. One of them, named Jamie, also has a t-word that can't be operated on. She told me that she had two children after finding out about it. It seemed that Jamie also battled with the decision at first, discussing it with her husband and neurologist. "You just have to live your life," her neurologist said. Even though Jamie had similar qualms about the future, she didn't want to have regrets. And she doesn't. Her tumor hasn't grown, and she has gone eight years without having any treatment.
It was a relief to speak with other women who understood what I was going through and find the hope that I was looking for.
We may not know how long I will live, but no one really does. What if I choose not to have a child, and in eight years I regret the decision because my t-word never grew? Some astrocytoma patients live to old age, or even miraculously heal from glioblastoma (a very aggressive form of brain c-word.) "You never know," Matt and I have started saying.
So I told myself before my last scan that if it was stable, I would go off birth control. It was, and I did. Other than my parents, I was surprised that my PCP was the first to give her blessing. I hadn't been to her in a couple of years, so I was extremely nervous to deliver the news of my diagnosis and then declare that I wanted to conceive. But she didn't bat an eye. "I think it's great, and that you'll quickly succeed."
But then something else threw a wrench in the plans I had finally made.
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