Thursday, November 4, 2010

A Hairy Tale

So here it is. I absolutely, unequivocally do not want to lose my hair. (photo on left from 2005)

Call it my one vanity.

I am not one to wear much adornment. I have little jewelry in my possession. In fact, I was 40 before finally getting my ears pierced, and in the two years since then have found wearing earrings somewhat of a nuisance, dealing with ongoing infections in my left ear lobe.

Nor am I one to wear much make-up. I prefer the natural look, wearing a bit of foundation and some powder. Also a bit of eyeliner. Never wear lipstick, excepting the rarest of occasions.

And then there's my hair. Long, thick and straight. It's become somewhat wavy over the years, and that is noticeable when I let it air-dry.

I love my hair.

Some history. One of my earliest memories of childhood. I don't even know how old I was, possibly first or second grade. My family was eating out in a restaurant. The waiter came to the table and asked my parents "What would HE like." I was mortified at being mistaken for a boy. Indignant at the comparison. How could he not know I was a girl? I reasoned it was because my hair was too short. So I let it grow.

Except for a few years in high school, when stuffing hair under a marching band hat was a nuisance, I have kept my hair long. In college, I really let it go, and by my mid 20's my hair was past waist length. I cut it perhaps twice a year, each time taking off about 6 inches each time, yet even that was barely noticeable. When I graduated from seminary, I had to wear my hair in a long braid down my back because it was covering the red master's degree hood I had worked so hard to earn.

The past few years I have worn it shorter. A little below shoulder length, but still long.

And now I face chemotherapy. My hair will not be short. It will be gone altogether. Compared to my childhood self, I am not so worried about being labeled a boy. (though I will hold the label of "cancer patient") Well-meaning people say things like "it will grow back" - "it's worth it in the long run" - "what is hair compared to saving your life" - "you can wear a wig" - or I love this one "you might be one of the rare few who doesn't lose their hair." Maybe...but not counting on THAT. Please don't give me that one. Those odds just don't interest me.

Folks, let me just put it out there, I am not stupid. I know these things. And unless you've gone through it yourself, don't even try to understand. And even if you HAVE gone through it, for goodness sake, don't be patronizing. Empathy, yes. Patronizing, no.

Don't try to offer rationalizations. Don't try to offer fixes or substitutes. These things are not helpful when I am feeling very strong emotions. I may ask for suggestions about what I could do. THEN, you can offer your suggestions. Otherwise just say "I'm sorry."

My hair is one of my most recognizable features. I love my hair. It is an integral part of my identity. A year after my mom finished her treatment, her hair is still extremely short. Maybe I will look fine in short hair...but let's get through the 24 weeks of baldness first.

24 weeks. 168 days of looking in the mirror. (numbers are obviously approximate here) Being reminded each and every day that cancer cells have invaded your body. Never mind the other side effects...

I am pissed. So very pissed. And not just about the hair. But everything. I didn't ask to have cancer. Nobody does.

Cancer sucks. It really, really sucks.

Thoughts From a Dream

I just awoke from a troubling dream. In it I was walking across a bridge, and in the distance saw what appeared to be a lighting storm. The clouds obscured my view, yet the lightning seemed to be concentrated in one cluster, and it was drawing closer to me. I started to hurry. After I got over the bridge I was in a large open area, and suddenly what seemed to be lightning was actually a column of fire - sort of looked like a waterspout that you'd find over a body of water.

It was coming toward me, and I began running away from it. But it kept coming. I tried to judge its direction, but every time I went the opposite way, it seemed to follow me, getting closer and closer. I began to tire. The fatigue was incredible, but I kept dodging the fire. I felt myself panicking, wondering how I could keep the energy to save myself from being consumed by the fire. The fear was intense, and hopelessness was started to seep in. I finally was able to drag myself into a friend's home, and then that part of the dream was over.

When I awoke, it was not hard to see the correlation with my current circumstances. With everything that has been going on in my life the past several years, I had no trouble with the metaphor. I do feel relentlessly pursued by some destructive force. It seems no matter what direction I try to turn, it follows me anyway, getting closer and closer. I feel enormous fatigue. I am weary, and I wonder how I will get through this.

My friends, colleagues, and family have been wonderfully supportive throughout this. I know I have people to whom I can turn. Yet in the recesses of my own mind, I know that this is my battle. I have to go through it. I know I am not really alone, but I am tired - from everything that has gone on before - and I just don't know how I am going to get through this next year.

Sunday, October 17, 2010

Joining the C Club - Part One

Okay. Most women know that every month they should be performing a breast self-exam. I never thought much about it, but did take some time every so often to poke around to make sure everything was normal. I mean, really, at 42 years old I never expected to actually find anything. I started getting mammograms at age 37 when my gynecologist lectured me on the need to establish a baseline. Fine. I went and got scrunched in the machine that was obviously designed by sadistic men. And a week later they called me back because of something shadowy. Turned out to be nothing. I learned that getting called back was relatively normal.

At age 40, the mammo's became an annual experience. Walk in to the little room and wonder aloud to the technician, "has it really been a year since this torture?" And this year I faithfully went in at the end of March. Exam by the doc, and then off to be squeezed in the machine. A few weeks later I got the form letter that stated my mammogram was fine and see you next year.

I had an appointment with my GP on August 5th. Just a routine wellness exam, to check all my blood levels and make sure my high blood pressure hadn't gotten any higher. The night before the exam I was sitting on the couch watching TV. I hadn't done a breast self exam in awhile, so I began to push and prod, not thinking much about it.

But then I stopped.

Something was there, right below the skin. It was hard and felt about the size of a grape. I poked around some more, and it hurt a bit. I checked the other breast in the same spot. Nothing there. Hmmmm.

I turned off the TV and turned to Google. You try typing in "lump in the breast" and see what kind of scary stuff pops up! But the thing I kept seeing was that most lumps are benign, nothing to worry about. Yet something kept nagging at me. I wanted it to be benign, but somehow already knew otherwise.

I went to Dr. R and told him about the lump. He did a breast exam and said that the wise thing to do would to get it checked out, but to try not to worry too much in the meantime.

Next step was to schedule a diagnostic mammogram and an ultrasound test. The diagnostic m'gram was not much different than the normal one except that they put a little bb type thing right above where the lump is and take pictures from different angles. The bb shows the radiologist where to look.

I went into the exam room for the ultrasound, and got up on the table. The tech was getting me ready as we waited for the radiologist. Dr. T came in, and said basically that there was nothing showing on the mammogram. I can't remember exactly what I said, but it sounded like he was not too concerned. I said, come over here and I'll point it out to you.

I watched as the ultrasound picked up the mass. A blob of black surrounded by wispy white tissue. It looked huge on the screen, but of course it was magnified. To my eyes it appeared smooth on top, with tendrils extending downward - it reminded me of a jellyfish. Dr. T was quiet as he took different images and recorded them. He supplied no answers to my unspoken questions. I was still under the impression that this could be a cyst, like all my friends told me it probably was. He also did an ultrasound under my arm. I guess I should have realized he was checking out the lymph nodes. But I didn't. He said that the tech would schedule me for a biopsy.

Now that was an experience. Dr. W was a very nice woman, but when she said I would only feel a bit of pressure I believed her. Pressure that felt like a very sharp pointy thing stabbing into my body, I guess is what she meant. Even with extra anesthetic, it hurt. Bad. I had asked her that if it were a cyst, could she just extract the fluid while she was in there. She looked at me with confusion and said, if this were a cyst, you wouldn't be here. I guess Dr. T forgot to inform me of that...she did say that some masses you can tell by looking that it is cancer. Mine was not one of those types, so there was still some hope.

Because it was Friday I would not hear anything until the following Tuesday. I told Dr. W that I would be out of town on a church staff retreat at a camp but to just call my cell phone.

At this point I had not really told anyone what was going on. My mom and a few friends and a colleague at church who dealt with breast cancer a few years before. Somehow I made it through Monday of the retreat, but Tuesday morning I was a bit jittery. It was August 24, 2010. During our morning break time, I grabbed my cell and saw that I had missed a call. It was the doc, and she gave the call back number. I called back and then had to wait for a return call as she was with a patient.

I walked down to the lake at the camp and sat out on the pier. One of my colleagues was already out there and I told her what was going on and asked if she would mind sitting with me as I awaited the call. I waited about fifteen minutes. I watched the calm water, the dragonflies flitting above the lily pads. The sun was still low in the eastern sky. The air was calm, the trees quiet. A beautiful late summer day. At approximately 11:20 a.m. my phone rang. I looked up at B and said to her, this is it. I answered the phone and in ten seconds my life changed.

Perhaps we all know that at some point in our lives we will eventually receive a diagnosis of cancer. After all, one in three women and one in two men will get cancer. But it's always some point in the future, after our bodies have worn down. You don't expect it at midlife. You hear of others getting it. I had just spent the past year and a half walking alongside my mother in her journey with lung cancer. Chemo, radiation, hair loss, more radiation on the brain, and bone loss that resulted in two broken hips. A long, scary journey. But hers, not mine.

Yet when Dr W said the words - I am sorry to have to tell you, you have breast cancer - my life turned a corner. And I was embarking on a journey that all at once seemed very frightening. No longer a bystander, I was now a member of the cancer club.

Beginning again's been over two years since I wrote a real post. When I first signed up for this blog, I really had the intention to keep up to date. But then, over the past few years, things got pretty rough. Maybe by not posting about them, I felt like they weren't real. Or maybe I didn't want the world to have access to my business! Of course, the likelihood of anyone actually reading this is probably pretty slim, so why not write about it?

I guess what prompted me to start back today is that I had to have Mulder euthanized on Thursday. When Scully died two years ago, I expected her brothers to outlive her by a decade. But in July, Mulder developed a coordination problem, that led the vet to believe he had some type of neurological disorder. Steroids helped at first, and we decided that once he started going downhill, I would show him mercy. On Wednesday he exhibited difficulty even moving, so the decision was an easy one (relatively speaking.)

Now, this loss of Mulder falls quickly on the heals of my surgery for breast cancer. Yep. You heard me. I was diagnosed with breast cancer on August 27 after having discovered the lump on August 4. More on all that in another post.

This diagnosis of cancer for me falls after a year and a half of walking alongside my mother in her fight against small cell lung cancer, two broken hips, and having to euthanize her dog while she was still in rehab following hip surgery.

Crazy couple of years. Much more than I could have ever anticipated.

My 30's were rough. Going through a divorce, losing my father, and the death of several childhood pets. Also some poor relationship choices. Then I got ordained, which was really good, and I figured that after surviving my tumultuous 30's, my 40's had to be better. Not so much.

So we'll see. Perhaps this blog will be helpful to get some of this stuff out of my head. I just spoke with my friend Dianne last week and she asked if I were writing. I said no. She wondered why not. And so with that, I ask myself. Why not?