Hello.

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.

my shoes

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.

Tripler

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.

 

blob

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.

 

 

routine

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.

screening

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.

Zachary

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

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.

next phase

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.