I recently learned that around the time I was beginning chemo, an old friend died of brain cancer.  We met in high school and kept in touch on and off.  I knew he was sick but I was hopeful that he would get better.

I didn’t believe at the time things could be worse for me.  Even though the outlook for my health was good, it didn’t even occur to me that someone I knew and liked could be worse off than me.

I’ve been thinking about that lately; about how none of us ever really know what’s going on with other people.  I’m guilty at sneering at people for getting elective surgery and now I know that I was misguided.

I went in for a second consultation with my plastic surgeon, Dr. Paul Faringer, and scheduled my reconstruction for September 25.

I’ve spent the last few months being angry at my dad.

When he and my mom planned to come to visit in December, and he elected to stay home, it hurt me.  I was convinced he was being selfish and he didn’t care about me.

He made it to Hawaii last week, with my mom, and for his troubles, he spent the week at Tripler hospital.  He experienced some sort of illness on the flight over and was admitted the next day.  I was only able to visit him once.

I’m angry at myself for wasting so much time being mad at him.  I knew flying was difficult for him.  Now, I don’t know if he can ever make the trip out here again.  I feel guilty.  I miss him and I’d do anything for just a few more minutes with him.  

I’m hoping we can visit Florida in the next year or so.  It’s probably the only way I can see him. I used to get so homesick.  For years, all I wanted to do was move back to Florida so I could be close to my folks.  It wore off quickly.  Now I anticipate a trip back there with something next door to dread.  Florida is a reminder of things past, not all of them good.  I still have friends there, though, and just to see them again could make it worthwhile.  

———————-

I had my annual echocardiogram today.  Everything looks fine.

 

I found myself in a plastic surgeon’s office on Thursday.  I’ve decided to get reconstruction.

Radiation has limited my reconstruction options.  That’s the bad news.  One of the few options available to me is to have fat and muscle sucked out of my belly and put into my breast.  In other words, I get liposuction and a boob job.

It’s going to be painful.  It’s going to require a long hospital stay.  It’s the only thing I can do, though, if I want to go this route.  Patients who haven’t gotten radiation can opt for gradual reconstruction, using skin stretchers and implants of steadily increasing size.  Radiation is still affecting my skin and it still may affect it for another year or so.

I found out that our insurance covers reconstruction.  Meanwhile, our dental insurance only barely covers the oral surgery that Katie needs, which, oddly, I learned on the same day.  We’ll pay nothing for a new breast, but we’ll pay a small fortune to have teeth taken out of her cute little face.

At the same time I get the surgery, they will lift the right breast so that it matches my new one.

I’m ashamed, honestly.  I think I’m actually looking forward to this.  I’m hopeful, and it’s all because I get new body parts.  I must be shallow.

 

 

I have a mammogram on Tuesday.  I’m scared.

It’s routine.  I have to have one every year now.   It’s something I’ve been planning for in the back of my mind since the diagnosis.  Somehow, it’s only occurred to me now that they could find something.

I don’t think about the cancer that often anymore.  I’m only reminded of it when I shower at night.  I don’t feel the danger like I did before.  It’s something that happened.  It’s in the past.

I’m afraid that now that I’ve gotten on with my life, it’ll come back.  I don’t even know what I’d do if it did.  I’ve decided to get reconstruction, but that’ll have to wait if they find something.  I don’t know if I can handle another round of treatment.

My missing breast hasn’t changed what I am inside.  It’s a superficial change.  Still, I want it back.  I want to be complete and healthy and it finally feels like those things are within reach again.  I don’t want to lose that.

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.

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.

Nineteen.

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.

My cancerversary is on Friday.  It’s been a year since my diagnosis, and it feels both much longer and much shorter than that.

I was sure when I started chemo that it would never end.  I went into one session sure I had at least three more, and when a nurse told me I had only one more, I was surprised.  Radiation went by so quickly that I can barely remember it now.  Mostly I remember one of my radiation techs, Deedee, and Leilani, a fellow patient, who made everyone in the clinic laugh.

When I think of how much time I’ve spent worrying about the future, though, that year seems like a decade.  It hasn’t been until recently that I’ve truly come to understand that if I have a recurrence, there’s nothing I can do about it.  I can try to prevent it by eating healthy and taking care of myself, but that’s all I can do.  It’s both frightening and liberating to come to that conclusion.

I know I’ve said it before, but it’s still true: cancer has taught me what love is.  It’s taught me that love is not flowers and a ring and a church; it’s my husband changing my bandages.  Love is being near my kids; cherishing all the little moments.  Maybe it’s no coincidence that the cancer happened the same year Katie started high school.  In only a few years she’ll be starting her own life away from us.  Every day with her is more precious.

Spiritually, though, I don’t know where I am.  We’ve continued to go to church as a family all through my treatment, as we always have, but instead of feeling closer to my higher power, I don’t feel its presence like I used to.  It feels like I’ve been dropped off in the wilderness with only a map and pocket change, left to sort out my survival on my own.  I might get eaten by something, but I might not.  This uncertainty has led me to seek out help in my church, which has helped, I guess.

In a month or so, I’ll be able to talk to a plastic surgeon about reconstruction.  I didn’t think I wanted to go through another surgery, but I think it’ll help me a lot, mentally.