Monthly Archives: August 2012

fuzz

I feel pretty happy.  In eight days, chemo will be over.  Things are going well.  The kids are well-adjusted and I have a lot of energy.  But sometimes, I feel angry.

Just sometimes.  At random moments.  And I can’t even really tell you what I’m angry about.  Being in the chemo chair makes me angry, and sometimes church makes me angry (that’s a story for later), but it never lasts long.  I didn’t quite know how to handle it, except to shut myself off from the world as best I could until it passed.

Music has always helped me work through stuff.  I’ve always found in stressful times that the right kind of music can smooth the rough edges and calm me down.  As I’ve been going through this journey, though, I hadn’t found that certain music to crank up whenever I’m cranky.  I found it when I was in the car and my iPod shuffled to “Disconnected” by Face to Face.  Listening to that loud, angry song was cathartic.  I needed more.

I’ve discovered this week that I love punk music.  I’ve listened to The Ramones and Minor Threat and Black Flag this week, and maybe not coincidentally, I’ve felt more positive than I have all year.  There was a time when I thought punk was just noise, and maybe it is, but it’s therapeutic noise.  I’ve come to appreciate any musician that can express rage and negativity in a creative way.  I wish I could do that.


There’s a layer of fine, white hair on my head now.  Just fuzz.  It’s especially noticeable around my temples.  I wonder if this is a precursor to hair, or if it’s going to come in white.

cacophany

Usually the chemo room is fairly quiet. There’s a low murmur of conversation, punctuated occasionally by beeps and alarms from the machines. Yesterday, however, it was not quiet.

Shortly after I sat down, as I was digging into “Game of Thrones” on my Kindle, two women came in. They were talking about yoga pants and tofu in what is referred to by those of us with kids as “outside voice.” They were SO LOUD. They were talking like two soldiers in the middle of a fire fight.

I put my book away, so suddenly and completely pissed off at the world that I launched Spotify on my phone and put it on the punk rock radio station. I briefly considered singing along to “Beat on the Brat” by the Ramones at the top of my voice, but decided I might scare people.

Then the snoring guy came in.

Two weeks ago, I watched snoring guy snore so loud that he made the kid beside me jump. Several nurses laughed. Yesterday, he came in, and he was even louder.

At first I thought the backhoes outside the window were making the racket, but I realized that the backhoe wasn’t moving at all. I heard snoring guy OVER the punk rock station. I realized too late that I could have recorded him. I know that’s not very nice, but it was honestly so funny. At a certain point, don’t snorers get so loud they wake themselves? He was still sawing logs when Princess arrived.

Princess is like a pop diva. She made another patient vacate her favorite chair, which is actually my favorite chair, so had I picked it yesterday, I would have been screwed. She was starting phase two of her chemo treatment with a new drug, which she didn’t understand, even after it was explained twice, petulantly declaring that it had better not make her sick or she was never coming back.

About a month ago, she insisted on maintaining a conversation with an elderly woman who was clearly hard of hearing. She responded to the lady’s continuous confused expression with escalating shouts.


A couple of Saturdays ago, Kaiser Permanente hosted an event called “Oncology on Canvas.” It was designed to be an artistic outlet for patients and their families. I knew I wanted to go, just as I’ve been going to a therapist and to support group meetings, as a way to connect with other people.

I was insecure, though. I’ve never been artistic. I lack perspective and I can barely draw stick figures. I worried for days about what to paint and if I’d even be able to put the vision in my head down on canvas. I was still staring blankly at my canvas when Ryan pulled out his phone and called up a photo of Hilo Bay. I had my inspiration.

It’s not Monet or anything, but it’s surprisingly good, for me. It’s hanging in Honolulu Hale right now, alongside Katie’s and Ryan’s. It’s kind of made me want to take up painting.

internet

The more I find out about Taxol on the internet, the more afraid I am.

I guess the solution is to stop reading about Taxol on the internet.  I can’t help it, though.  I need to know.  I wish I’d known half the things I know now when I started.  Knowing all about chemo and cancer treatment in general is one tiny way I can maintain some control over the situation.

Here’s a post I found on a cancer message board:

Taxol is given into a vein, but in order for the body to absorb the drug, it must first be dissolved in a solution. Taxol’s history began 43 years ago. It was found to be virtually insoluble in water. It had the solubility of a brick. The compound wouldn’t dissolve very much in any solution. Without a way to get it into a cancer patient, what good was it? It was discovered that something Taxol would dissove in that “might” work in a reasonably “safe” intravenous solution in humans. It was an elixir made of castor oil and marketed as Cremophor EL. It was the “only” answer (until synthetic compounds were introduced like Taxotere). However, this castor-oil carrier is suspected as the culprit behind the misery which includes nausea, vomiting, joint pain, appetite loss, brittle hair and tingling sensations in hands and feet (neuropathy). The much ballyhooed drug was no panacea.

The poster goes on to reveal that in order for the FDA to approve a drug, the drug needs only to be effective in 20 percent of patients.  When Taxol was approved, it had managed to work in 30 percent of patients during trials.

I found this info in an attempt to find out if my new joint pain is normal.  I’ve been taking two vicodin a day for about a week because my hands, knees, and elbows hurt so much.  I hate taking pain meds.  I want to hang on to them in case I really, really need them someday.  I’m terrified of continuously refilling my prescription only to have my doctor tell me I can’t refill anymore.


Us at Melissa Etheridge

I forgot to mention Melissa Etheridge.

Ryan somehow managed to win us tickets to Melissa’s show when she came to town in July.  I was excited to see her, because she is a fellow survivor.  I own a couple of Melissa’s CDs, but haven’t been following her career closely, so I wasn’t aware that she’d written a song about cancer and, more specifically, the race for the cure movement.

I was inspired by Melissa.  I was inspired by the handful of women I saw who appeared to be in the same boat as me.  Melissa sounded wonderful, and we had a great time.  We went for a fun evening out, but I walked away feeling uplifted.

August

My birthday was bittersweet.

It was my first (and hopefully only) birthday as a cancer patient.  I was looking forward to forty.  I viewed it as a chance to kick off another phase of my life.  After all, I was healthier than I’d ever been.  I was ready to train for a marathon or take up kickboxing.  I was scared of turning forty last year, but as the new year approached, I started to embrace it.  I’d become philosophical.

The day before my birthday, I read a statistic.  A third of us who are diagnosed with breast cancer will die from it.  That made me sad.  And scared.  Days later, that thought wakes me up at night.  I spent so much time in July, going insane, obsessing about everything but me, that I sort of forgot how uncertain the future is.  Cancer doesn’t spare moms; it doesn’t spare the young.

Things are getting better, though.  I have much more energy than I did a month ago.  I think I’m almost ready to tackle my old walking route.  Even better, I’m reading again.  I read a whole book in four days and I finished another book that had fallen by the wayside.  I was so convinced that I was suffering from chemo-induced mental fogginess, but now I’m not sure.  Maybe I got off easy.  I still search for words now and then, more often than I’d like, for sure.  I feel sharp again.  I’m almost ready for a sudoku book.

I’d like to think the big island trip helped me.  Ryan and I met there, so it’s special to our family, but I always believed the island was full of ancient healing power.  I got on the plane right after chemo and didn’t anticipate that we’d do much on Friday, but we drove across the island and made quite a few stops and walked quite a bit.  We visited the city of refuge, which I hadn’t seen for almost twenty years, and the painted church, which I had never visited.  The energy on the big island has always been energizing for me.  I dream of the day we can live there.

 

I have chemo down to a science.  There are only four treatments left, but just in time, I’ve made a playlist for maximum relaxation and I listen to it as I succumb to the haze from the benadryl I get to ward off any allergic reactions to the Taxol.  I manage to sleep through almost the whole thing.

The staff at Kaiser has been so wonderful.  I’ve made some friends.  I’m going to miss them.