We’ve set up this blog to help family and friends learn about, and keep up with, Jen’s fight with breast cancer. We also wanted a space to document and track everything for ourselves. If this is the first time you’ve visited this site, we know it might be overwhelming. We’re overwhelmed, too! But most of all, we’re grateful that you’re interested in learning more, and might join us on this journey. Read more about this blog.
After some consideration and a couple of trips to various offices, we have determined that testing for the BRCA+ gene is not practical, at this point.
It’s wildly expensive. At one of the meetings, I was shown a paper that said the average person who opts for this testing pays about a hundred dollars. At the second meeting with out HMO, they estimated a figure much higher than that. We simply can’t afford it. It doesn’t help that Katie will undergo oral surgery in two weeks.
I also learned something surprising during those meetings: the BRCA gene is expressed in men as prostate cancer. My dad went through a round of radiation for prostate cancer a couple years ago. So maybe it is genetic. It probably isn’t, but it might be, That’s not good.
I know what this testing will tell me, but I don’t necessarily know what I would do with the information. There’s nothing I can do about it. I want Katie to be able to make decisions about her health, but is she chooses, she can get the testing later in life.
It’s been a year since my first day of chemotherapy.
So much has changed. I can see the changes most plainly in my kids. Before my eyes, they’re becoming bright, wonderful, creative people. Last year, at this time, I wasn’t sure I would live to see them grow up. They haven’t fully grown yet, but I can sometimes see tiny pieces of the adults they’ll be.
Zac has become quite protective of me. Of the three of them, I think he was most frightened of my diagnosis. Now Zac is always looking for ways to help me, asking if I need water or tasks done. He surprises me all the time.
I still think about the day of my diagnosis sometimes, and often the memory leads me down a rabbit hole, to the memory of a Sunday almost eleven years ago. On that day, we celebrated Zachary’s baptism. It was also the day before the reconstructive surgery on his head. He was four months old.
This past Sunday was a bit of a rough day. Ryan and I had had a fight, and I was feeling moody and impatient. The closing hymn was “How Great Thou Art”, which I remembered from that Sunday over a decade ago. Suddenly, I remembered a thousand little details about that day. For a while, it made me feel even worse, and I had a hard time keeping it together.
Then, after church, Zac squeezed my hand and said he loves me.
I realized then that sometimes I haven’t been as strong for my kids as I need to be. I take for granted that they’re here, that they can handle everything. And I sometimes forget how precious they all are.
I’m terrified to go to the doctor.
Twice, I have made appointments to see my gynecologist, as I have been asked to do, and twice I’ve “forgotten” to go. I am required to see my doctor, because now that I am taking Tamoxifen, I am at greater risk for developing uterine cancer.
I’ve managed to forget these appointments, but I fear that if I keep them, I will hear news I don’t want to hear right now.
I’m getting on with my life. I don’t even like talking about cancer anymore. I’m emotionally spent and looking for ways to create and excited to find new things. I’ve stopped writing about it altogether, opting to treat you to some of my fiction writing instead.
When I was diagnosed, I was in denial about the whole thing. I think I’ve gone back to that place, where I can just pretend all the treatment and doctor’s visits were some kind of crazy passing phase. Sometimes I have to be reminded that I was ill.
For instance, I carried around a letter in my bag for months, which stated that I had been referred to the genetic counseling department at Queens and could go for a blood test to determine if I have the BRCA gene. I made the appointment, after a long time. This test not only determine what’ll go on for me in the near future, but also my daughter.
I look at myself, and I see how I’m handling the aftermath of my illness and treatment, and I wonder if I’m crazy.
Monday was a strange day.
Ryan had fly to Hilo for work. He was to take the first plane out, leaving at 5:30 in the morning. He would only be there for a few hours, just long enough to attend a meeting, and then fly home in time to celebrate our anniversary. I would drop him off, handle the usual daytime routine, pick him up at the airport, and head to the restaurant. We turned in early, careful to set the alarm for 4:30.
We both woke up at 5:00.
It might have been act of some minor god that got him onto the plane in time. It’s Merrie Monarch time here in the islands, so his flight, and presumably every other flight to Hilo, was packed solid and lines were long.
Katie came along with me on the frantic pre-dawn ride. Ryan texted her when we were on the road to let us know that he was on board, and, oh yeah, by the way, he had taken my phone by accident.
We went home and I picked up the book I’d been reading. I have been a Stephen King fan since I was a kid, but I had never made it through the Dark Tower series until recently. I managed to finish book five, “The Wolves of the Calla” yesterday.
Steve and I are tight. We go way back. My mom read his first novel, “Carrie” when I was in kindergarten. Steve’s second novel, “‘Salem’s Lot”, takes place in a town that appears to be not very far from Yarmouth, Maine, where my family lived at the time. I read “Carrie” when I was eleven, “Pet Sematary” a year after that, and I picked up various other books by Steve throughout my teens.
I came to find that I am comforted by his work. He writes about scary, disturbing things, but with love. Everything King writes shines with good humor. He may frighten you, but then he’ll give you a hug and make you laugh. Reading King is the literary equivalent to macaroni and cheese, to me.
It makes me weird. I know it’s weird. I guess it’s some kind of kinship borne of Maine and weirdness. See, our house in Yarmouth was haunted. Maybe.
Down the road from us lived Caroline. She was in her mid-teens, I think, and she babysat my brother and me. My parents went out a lot at that stage, so we saw Caroline maybe twice a month. She would come over after dinner and stay after our bedtimes.
One night, Caroline saw something. She wouldn’t tell my parents what she saw, but it must have been something awful, because she vowed that night to never come back. And she didn’t. This incident was only part of a weird history that involved my brother and an imaginary child named Charlie. My mom may have mentioned at one time or another that there was a death in the house but I might be confused about that. Anyway, the place was weird. It was down at the end of a dirt road at the edge of a forest.
In other words, it’s sort of the thing Stephen King might write about.
I’m enjoying the Dark Tower series. It’s his most complete work, thematically, and I love how he’s built an entire universe around it that flows through much of his other work. Plus, “Calla” is kind of silly, in the most entertaining way. I was delighted to find Harry Potter and Star Wars references within a page of each other. I love how the inhabitants of Calla Bryn Sturgis are clearly from some alterno-Maine. And with the emphasis on the number nineteen, one can feel a certain similarity to my all-time favorite TV show, “LOST”.
Nineteen. King talks about the significance of the number nineteen to his life in the introduction to the third book in the series, “The Waste Lands”. The number nineteen is symbolic of many things in the series. It comes to be a kind of shorthand for a couple of the characters, for things both good and bad. In the latter part of “Calla”, it carries ominous connotations.
As the book came to a close, I felt a bit wrung out. It’s not a fast read, and so much of the novel is build-up to an excruciating battle scene. I finished it, in fact, in just enough time to dash out the door to pick up Ryan, returning from Hilo the same day.
I’m still thinking about the novel as I’m driving back to the airport (at a much more reasonable speed). I’m thinking about how King is going to sort out a certain odd plot-twist at the end of the novel in the next book. I’m thinking about how there’s often this strange thing that happens where whatever I read at a certain time mirrors something else that I’m reading at the same time. When BAM!
I hit a pothole bigger than Texas. Then: clunkwobblewobblewobble. A flat tire.
I had no phone. I was stuck.
It was much too far to the airport to walk. I opened the hood, turned on my hazard lights, and tried to look helpless, in the hopes someone would pull over. No dice. I had one choice, and it would be very dangerous, but without a phone, all I could do was finish the drive to the airport.
I drove as slowly as I could manage, feeling the death rays of hate shooting from the eyes of my fellow drivers.
I limped into the post office parking lot, which is adjacent to the baggage claim where Ryan would be waiting. Then I headed over to meet him on foot. I dreaded telling him what had happened.
He took it in stride, and almost found it amusing. Almost. We just walked back to the parking lot and, after some “Christmas Story”-esque hijinks, replaced the shredded tire and fancy wheels with the ugly spare. And while we had to cancel our original fancy dinner reservation, we still had time on the slow, careful drive home for a nice sushi dinner.
No biggie. Until I remembered which anniversary it was for us.
Nobody heard from or saw Henry again after June 4, 1990. He dropped off the face of the planet, it seemed, and nobody doubted that he would do what he said he would do. He had only become more devout as the school year went on; when we were assigned to write biographies of poets, Henry’s was about Gerard Manley Hopkins. His ex-cohorts in his sports teams snickered about him behind his back, but the rest of us thought something special had happened and we all guessed that this next chapter of his life would be far more fulfilling than many of ours.
When Carol Ann died, I was shaken. I hadn’t been to church in ten years. I hadn’t even spoken to anyone resembling a churchgoer in that time. I had been surrounded by lackeys and enablers and the terminally greedy and slimy for almost a decade. I had once found peace and solace in my faith, and I desperately hoped I could find it again. One afternoon, a month after Carol Ann passed away, I ducked into the church in Summerfield where I had gotten my first communion.
I was hoping I could sneak into the church and into the confessional undetected. I didn’t want anyone to recognize me. I looked much different in jeans and a T-shirt than I did on MTV. When people saw me in Circus magazine, I usually had teased, bleached hair, but I thought my face was somewhat memorable. I didn’t want anyone to know I was back. Being caught back in my hometown would be admitting I’d failed.
I opened the door to the church and was greeted by Henry’s face.
Carol Ann was born in Minneapolis and raised in Texas. When she was fifteen, her parents divorced. Their split was acrimonious, to say the least; so much so that her older sister hired a lawyer who managed to get all four minor kids emancipated from their parents. The eldest child, Andrew, already had a home in Summerfield and took Carol Ann in.
Carol Ann played the piano, the mandolin, the guitar, and the drums. She heard Weird Al Yankovic on the radio one day when she was twelve and set out to write her own musical parody songs. She had a keen ear and could mimic the style of other artists fluently. She was also a great friend. The day after she moved to Summerfield, she met Deanne. The two were best friends for the rest of Carol Ann’s life. I know she loved us all, but those two had a bond that transcended the drama and chaos they endured.
Henry was a sadist. He once stuffed one of his wrestling teammates, a kid under five feet tall, into a locker. He tripped people, he hid things from us, he openly mocked the smart kids, he put tacks in chairs. He knew how to cheat on tests, so most of the teachers kissed his ass, the way they do with athletes.
Read the rest of chapter one here.
My hair has grown in quite curly. If I leave it as it is, it may just keep growing outward, into Ronald McDonald proportions. I’m actually considering cutting it and wearing it in a short buzz all the time. If I do that, I’ll miss out on the wonderful possibility of having big, long, springy curls. I wonder if it’ll just stop being curly at some point and continue to grow as it was.
It’s so strange that chemotherapy messes with something like hair when everything else remains the same. What process is that? If it changes my hair, why can’t it flatten my belly? Or give me nice eyebrows?
Xeni Jardin is a world-famous blogger and internet personality. She was also diagnosed with breast cancer shortly before I was. She’s kind of become my cancer guru. She’s written all about her journey on boingboing.net. Her writing helped me to anticipate what would happen before it happened, and assured me that it was okay to be pissed off and scared sometimes.
She’s vacationing here in Honolulu right now, and Ryan and I were lucky enough to have lunch with her a couple of weeks ago. I’m so glad I got to meet her. She’s lived such a colorful life. I learned so much from our conversation and I actually feel a little humbled now.