Monthly Archives: March 2012

the future

I didn’t hear what I wanted to hear today. I wanted to hear that the breast surgery was the end of my struggle. But that was not meant to be.

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I will need to undergo chemotherapy and radiation treatments. It wasn’t a surprise. Those words have been spoken more than a few times since my diagnosis, but when they’re used in terms that are hypothetical and alongside “if” and “maybe,” they’re still safe and harmless. Now, they sting. It seems even more real now. This cancer is very real, and it’s going to be a long, long time before I can count it as a memory.

I’m scared.

My oncologist, Dr. Huy Nguyen, described chemo, and thinks that given my age and relative good health, it won’t leave me sick and weak. He told me about all the various precautions against nausea and secondary infections that come along with the chemo. He said to expect a treatment every two weeks for about two months.

He also told me that radiation treatments take only a few minutes, and that I’ll spend more time on the road on the way to the appointments than in the office itself. Apart from it being done every weekday for a few weeks, he made it sound pretty manageable; definitely not as hellish as I’d pictured, for sure. He described the fatigue I’d experience, but assured me that I won’t be helpless or bedridden.

That made me feel hopeful. Maybe this really will be just another story to tell; another anecdote. And on top of my normal course of chemo drugs, I might even be participating in a clinical trial.

After my meeting with Dr. Nguyen, I had my post-op appointment with Dr. Yee, my surgeon. She removed my drains. That certainly improved my mood. Having the drains wasn’t awful, but they were always in the way and awkward. It was hard to sleep with them and definitely hard to shower with them. I thought I was facing another week with them, but I’m healing quickly enough, I guess, to warrant early removal. I’m grateful for that.

I’m grateful for a lot of things, actually. I’m grateful that I don’t have liver cancer. I’m grateful it’s not one of my kids who is ill. I believe an important step in facing adversity is to find gratitude even in the smallest things, and I’m trying very hard to do that. But the fear is also still there.

But I took an important step in eliminating the fear today, too. I talked to Hubert Hayakawa, a psychiatrist at Kaiser. It was good to talk to somebody outside the situation for a few minutes; someone who doesn’t know me or my family, and if I get nothing else from him, I think I have some relaxation tips. I’m going to join a support group, too. The first meeting is in late April, around the time I start chemotherapy.

I know I have a happy, healthy future. But it’s further away than I thought.

six days post

I’m healing much faster than I thought I would.  Luckily, I’ve been able to sleep like a newborn, which helps.  I feared crippling pain and much more limited mobility.  Six days after the procedure, I feel that the anticipation I experienced was much worse than the actual surgery and aftermath.  Today, especially, I feel like I’ve turned a corner.  I’ve needed less and less painkiller and have increasing energy.  I realize now that there was nothing to fear from this.  The wounds are draining faster today, somehow.

Mentally, though, I’m definitely not there yet.  Mentally, I feel like an old woman.  The process in my current state to get ready to take a shower is endless and comical.  Ryan still has to wash my hair for me.  Here’s another fun secret:  pain medication makes you constipated.  I’m obsessed with fiber and water.  I’m dressing only in pajama tops because I can’t pull anything over my head yet.  My trips outside are still fewer than I’d like, and that, combined with my wardrobe, makes me feel like a shut-in.   I felt this diagnosis would sentence me to a prolonged life as an old woman.  I should fear dying much more than getting old.

I know the physical changes are only temporary.  I just hope I can shake this feeling that somehow, I’m broken.  That strangers will find me less worthy of friendship or respect because they’ll figure out my secret.  I fear that I’ll look normal on the outside, but still like an old, sick woman inside.

It took me three days to finally take off the giant dressing that the doctor said I could remove in two, and when I did, I knew I was going to be okay.  It looked as ghastly as I imagined, but there was no infection, no swelling.  Everything looked clean.  There weren’t even bruises of any kind.  I look lopsided, but honestly, it’s okay.  I was so terrified of what might have been lurking under the dressing that it felt like a weight from my shoulders to take it off.  It looks better and better every day.  It’s certainly not shocking to take off my top anymore.  Dr. Yee did excellent work.

Friday is going to be a busy day.  I hope my energy level stays on its upward trajectory.

home

It’s Sunday, three days after the surgery. I am home. I didn’t think it was possible, but I actually got out the next day, as predicted.  I’ve managed to take short excursions out of the house and I feel like I’m operating at about 50% power.  I’d love to take my regular three mile walk and I think I’d give it a try, if not for the drains.  It’s warm today, and breezy.  After church today, we spent a few minutes at Ala Moana beach park.

I would kill for a proper shower and I’m still loopy much of the time, but I think considering everything, I’m doing well.

Going in I was wondering how I’d ask to stay an extra night. But if I’d been told to stay in the hospital on Friday night, I don’t know how well I’d be doing. Hospitals are places of healing and rest, except when they’re not.  I wonder if in some cases, hospitals actually make people sicker.  The constant comings and goings of nurses isn’t conducive to rest on the best day, and in my case, my ward was populated by a lot of angry, loud people.  One man shouted at the top of his voice from dawn until the time we checked out, stopping only briefly while he catnapped. I was angry. There was no way I was going to stay another night, and was ready to yell and make demands at the mere suggestion.

Being here with my family makes anything seem possible.  I still have to meet with my oncologist this week and learn if I’ll need further treatment, but the change of scenery has improved my outlook.  Ryan has been ordering me upstairs twice a day to sleep, so I’m not doing much at all, but still, things feel closer to normal than they have in a long time.

I don’t remember much of the big day.

It started off like any other day, I suppose.  I woke up with Ryan in time to get the boys to school.  I was getting them dressed and feeding them, not wanting to acknowledge the giant white elephant in the room.  I was not going to be there when they got out, and we all knew it.  I was starving.  I had to fast since dinnertime on Wednesday.  Katie was going to the midnight premiere of “The Hunger Games” with her friend that evening.  She was planning on going with me, and I know she was disappointed that she couldn’t. My surgery wasn’t until early afternoon, so I had plenty of time to spend with her and Ryan.

It’s strange how time can both pass extremely quickly and crawl, simultaneously.  I wanted to be able to remember every minute at home; to enjoy the last few hours of being me as I knew me, but I also wanted it to be over.  I wanted to get on with my life.  Even now, I want to be speaking with my doctor, figuring out where we’re going.  I didn’t feel the utter dread and terror I’d anticipated.  I felt oddly at peace.  I figured I’d burst into tears as we approached the hospital, but I didn’t.  I was calm.  I was going to get healthy again.

Surgery feels like a momentous, life-changing thing to the patient.  It feels immense, like something that requires some kind of ceremony.  At least it did to me.  As I arrived, and filled out more paperwork and talked to hospital staff, though, I noticed a complete lack of ceremony.  I wasn’t the first person to have a mastectomy, I realized, and I wasn’t the last.  I wasn’t even the first mastectomy my surgeon had done that day.  This was part of an endless cycle of people coming and going.  The people helping me prepare for my surgery wouldn’t even remember my name.  I would recover from this, I realized, just as women before me had.

I was told to undress and wipe myself down with disposable cloths.  My gown was bulky and had warmer vents and I felt like I was preparing for a space launch.  There was still time to kill, as Dr. Yee was still with a patient, I was told, so I found myself playing the brand-new Angry Birds Space.  I was hoping against hope that Ryan would neglect to photograph me in the act, but he’s managed to develop some serious stealth photo skills.

I voiced concern to my anesthesiologist that I would wake up in the middle of the procedure.  I realize now that she must hear that fifty times a day.

And that’s the last clear memory I have of Thursday. Everything else is just a haze.

Zero Day


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grateful

I know people have my back, and it means so much.

I have so much love in my life.  It’s crazy, but I don’t think I really understood what love is until now.  I know I’ll have friends no matter what, and that knowledge in the face of all this scariness is uplifting and overwhelming at the same time.  Every message or email means so much and I know that I will heal and be well and strong again because of them.  I don’t think I can ever properly thank everyone who has sent me well wishes, and I’m afraid of any kind words going unacknowledged.

I have to thank my parents, and Ryan, and everyone who listens to me ramble every week, and everyone who knew me when I was a kid and endured my weirdness and still likes me anyway.  I don’t know how people lived through cancer before communication technology.  If I had to face this alone, I don’t think I could survive.

I go into surgery tomorrow.  I don’t think I’ve ever been more scared, but I am so hopeful.

two days and counting

I wonder how many women are walking around with this disease and don’t even know.  I’ve been reading and hearing stories of women who go in for mammograms in their forties, when they’re told to, and find full-blown cancer.  How many of us, though, don’t go in for mammograms?  How many of us find out we have it before we’re even old enough for mammograms?  How many of us simply can’t afford to get help when we’re diagnosed?

It took my husband’s urging to get me into the doctor’s office in the first place.  What if I hadn’t? I’m endlessly surprised how this could be happening to me when I feel so good, and I know that I’m not alone.  And it scares me.  It makes me sad.

We spent a good part of yesterday at the hospital.  We had five different offices to visit; we brought home reams of paper and signed our names many times.  Everything went smoothly, though.  Kaiser is the model of efficiency.  I now know what to expect, I think.  I will probably be allowed to go home on Friday, which, right now, seems highly unlikely.  I think I’m scared to ask for more time, should I need it, because Kaiser is so efficient and businesslike that I’m afraid of being kicked out before I’m ready.  Dr. Yee described the procedure and the pain level thereafter and everything that happens when I get home, but I still feel unprepared, somehow.  I feel like I’m getting a final exam on the first day of class.  Am I missing something?

I think I’m most especially daunted by the whole concept of the drains coming out of my wounds.  Frankly, when they showed us the video on how to care for these things, I wanted to faint.  I started to cry, and I could tell that the nurse who came in later could sense my fear. She said she’s had them and said they really aren’t that bad, but the notion of bodily fluids in a bulb scares me.

When I’m not scared lately, though, I feel the need to laugh at totally inappropriate times.  Ryan and I were having a serious conversation about bras and reconstruction, when I saw in my head a tweet:  “RIP Jen’s boob, 1972-2012.”.  Suddenly, I was laughing, and I wonder what Ryan was thinking.  I’m caught at such odd times with the urge to laugh.  I want to crack jokes sometimes, too, but when I’m in polite company, I’m afraid of them thinking I’m being weird.  Or worse.

We did get to have a little fun recently, though.  Ryan got the idea to commemorate my body as we now know it with a photo shoot.  He heard stories of women sitting for boudoir photos before their mastectomies, and he asked me about it, and I thought it was a great idea.  He asked friends of ours in the photography world and our friend Lisa pointed us to Rita Coury.

On Friday afternoon, we went to Lisa’s home, which she graciously lent to us for a few hours, and Sarah Pacheco, of Sarah la GLAM, spent her birthday working on my makeup. We had a great time.  Rita is a true professional and a great person. After a sometimes scary week, I’m really glad we did it.

I hope Rita and Sarah know how much it meant to me.  A little dirty, guilty part of my brain has always wondered what it would be like to be a Playmate, and for a couple of hours, I got to be one. Sort of.

For a bit, I wasn’t facing surgery or bandages, and it was just fun and exciting.  In a weird way, by being a pretend sexy 50’s movie star, I felt courageous.

thursday

I think what I fear most is not the surgery.  I do fear it, as I think anyone fears it, but mostly, I fear what comes after.

I fear waking up after the procedure, knowing a part of my body is gone.  I fear looking in the mirror for the first time.  I fear some kind of crazy hormonal imbalance and early menopause and losing my womanhood.  I’ve never felt sexy; I’ve never loved being in my own skin, and I fear feeling even less comfortable in it afterward.

I fear that when I wake up, I’ll think part of me is dead.

I’ve heard so many positive stories about reconstruction and being free of cancer and women going on to accomplish so much after surgery.  What if something happens?  What if there are complications?

Sometimes I’m not afraid of anything.  Sometimes I feel like Xena the warrior princess.  Like I could go give lectures and organize charity runs.  Other times, I want to cry.  I feel paralyzed.  Like somehow, I’m facing the end of something.

I go for my pre-surgery meeting on Monday morning.  They will do a complete set of genetic lab work to determine if I have the BRCA gene.  I meet with my oncologist after the surgery.  In the meantime, between all of these things that are sometimes very intimidating, life is the same as it’s always been, but with the boys asking questions, and sometimes not sure how to behave.  They have a cursory knowledge of my condition; that it could be life-threatening if not treated; that things might get weird at home, but I think at their age they still lack the…what is the word?  Empathy?  They lack the empathy, I guess, to see very far beyond the things that immediately concern them.  So I don’t know how to explain the whole thing to them.  All I hear myself saying is “things are gonna be weird for a while.  I’ll hang out on the sofa a lot”.  I know I’m missing something, but I don’t know how to approach it.