Halloween

Happy Halloween. Wide awake. Can't sleep. Thinking about everything I haven't started and/or finished at the office, how little time there is to get it all done, and how much fun it would be to be young again, just for today.

I remember Halloweens from the 50s and 60s (I'm dating myself here). No fancy store-bought costumes. I'd pull on one of my dad's old shirts, smear my face with dirt or coal dust, and run through the neighborhood with a pillow case to carry home my treasures.

Without a doubt, Halloween is one of my favorite holidays. I work for a company that turns Halloween into an excuse to kick back, decorate office spaces, dress in costume, and be entertained by the children and grandchildren of coworkers as they parade up and down the halls and “trick or treat” for candy.

Today would be the day I’d wear my pumpkin hair band to work. It’s great accessory, just a hair band with an orange pumpkin lid glued to the top, the kind of lid you’d leave yourself if you were carving a pumpkin, complete with the brown “stem.” It’s all made of soft fabric, like felt, nice and light, easy to wear. It might look foolish but who really cares. It’s fun and it always makes people smile.

But there’s no sense wearing it this year—I have no hair to hold back, no hair to hold a hair band in place. In fact, the plastic teeth that grip into the hair to keep the hair band in place would dig into my scalp and probably hurt.

I’m no sulking, just stating fact. No “Pumpkin Head” for me this year.

Instead, perhaps I can be “Toxic Waste Woman” and put on PJ’s pink skull-and-crossbones bandana. No, it’s not out there enough, I’d have to explain the costume. I could put on my new wig and be “Normal.” Too subtle. Someone who didn’t know about the cancer would think I wasn’t into the spirit of the holiday.

We have a great mask that I can best describe it as “Death.” It’s a nasty skeleton of a face that wears a positively gruesome, bloody, toothy gasp. Worn with a long, black cape it’s so awful that it’s wonderful. I wore it to a party a handful of years ago and no one knew who I was. I cut a larger hole in the mouth and took in my big girl cocktails through a straw so I wouldn’t have to take off the mask and reveal myself.

No, “Death” wouldn’t even be amusing this year. You know I have a sense of humor, but I’m not going near that one.

Doesn’t leave much else to go on, not with what’s on hand. I think I’ll just pull on a knit hat to fend of the chill, sit on the porch with my bags of candy, greet my little guests, and hope that when all is said and done there will be some Tootsie Rolls left over—those are my favorites.

It’s always interesting to buy Halloween candy. Do you buy something you love and hope to have leftovers, or do you buy something you don’t like and thereby reduce the risk of eating it yourself?

What are you giving away tonight? Maybe I’ll stop by and see if you recognize me.

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Family resemblance

I look more like my brother these days. Click through to take a look.




Ted came to visit tonight, stayed long enough for a few photos and to drop off a gift (a wonderful t-shirt from the "Life is Crap" line, the LIC character tangled up in Christmas lights).

So, who's better looking, me or Ted?

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Getting back on my feet

It's been a long couple of days, and as each one passes, I feel more like myself. It's good to leave it behind me.

I know it's not gone, I know it's something I have to learn to understand and manage. I need to do a better job of listening to what's going on in my head and take the time to process it and deal with it. I have to learn how to say "No," or "Not now" when it's the right thing to say.

Got some extra special love today courtesy of my sister and my mother. Kelly decided I needed a special blanket to take away the chemo chills and she enlisted my mother to create a quilt. When you next see my mother, ask her to tell you the story of the quilt--it's wonderful.

I'll be on the couch shortly, wrapped up in my new quilt. It will be a good place to be and in the best of company.

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Blue Friday

Well, this serious case of the blues continues, although things feel a little less harsh today. I've done a lot of thinking, a fair amount of analyzing, and a good bit of talking about it with the two people who matter the most, and while all of that doesn't make it go away, it helps to put it in balance.

Being depressed about all of this is apparently something I've been fighting. I didn't think I was, but it's clear that I've expended a lot of energy trying to be normal, whatever normal is.

I think I need to fight the feelings less and allow myself to find a new normal. Not normal, but a new usual, a new median, and find a way to accept that every now and again I'll go to that place.

Maybe fighting so hard not to go there is what made these last few days so dramatically difficult.

It's not like I'm giving up, I'll never do that. I'm just giving myself permission to give in when I need to. I rarely do that. I worry too much about what everyone else needs. I need to listen to my head.

Give in sometimes and tell the world to go away for a while. Climb into bed and sleep away the afternoon. Wish it was almost June, not almost November, and imagine I could do this on the porch at the farm.

I haven't said this for a while... I'm so lucky. And I'm smart enough to know when I'm in trouble. Now I'll try to be wise enough to let the trouble in when it knocks and not wait until it gathers itself into an army. I can only really manage one sally at a time.

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“Treat it like a pair of earrings”

That was PJ’s response to my hesitation about my new wig. “Maybe you accessorize, maybe you don’t,” she said, trying to help me find a sliver of a reason to be optimistic about the new look. She was trying to be my cheerleader and it’s part of why I love her. But it wasn’t working.

Today’s wig shopping expedition turned into an extremely emotional experience. It came on suddenly and overwhelmed me. All I wanted to do was escape from what I was feeling and there wasn't anyplace I could go to get away. I really can't explain what happened because I don’t understand it myself.

I recently decided, what the hell, I'll look into getting a wig. No promises, just explore the possibility. After being repeatedly ignored by wig banks on a list provided by the American Cancer Society, I took my prescription to LeTourneau's Pharmacy in Andover (yes, a prescription for a wig, on the same square of paper that your doc might write you up for Prozac).

Actually, I’d called ahead and had an appointment with a wonderful woman named Cindy, who’d taken time on the phone to learn about my situation and what I might be looking for. She had a few styles ready for me to try. Some good color matches, some styles that weren’t to my liking, and one in particular that seemed like a good choice. I decided to go ahead and take it and when she left the room to do up the paperwork I burst into tears.

Where did all this come from? I felt like the bottom had fallen out of the safe world I’ve concocted for myself. I’d betrayed myself. I’ve spent so much time and energy convincing myself that I didn’t want or need a wig, that I’m beautiful as I’m balding, strong, loaded with courage, wearing my diagnosis and treatment plan like a badge of honor and with tremendous pride. And I ruined when I said, “I’ll take this one, the short, brown one.”

But there was more to it than that. The bald me is a constant reminder of my condition. The wigged me looks normal. Real me versus normal me. That’s what I’m really struggling with, and I can’t resolve it.

I don’t have the right to look normal. The real me is the way like is. I convinced myself it was right to pass on a wig and that in doing so, made a commitment to the real me that I broke by taking the wig. I’m struggling with the feeling that I quit on myself and took the easy way out.

The wig is a pass, like the “Easy” button the Staples commercials. The wig is something to hide behind, a mask for weakness. Real is right and strong, normal is wrong and weak.

I’m in such a difficult place and it’s going to take some time to figure it all out.

Part of what makes this so painful is how quickly the whole thing went to hell. That made me wonder whether I’ve given myself the appropriate opportunities to grieve. Mourn the fact that I developed breast cancer in the first place, had to go through two surgeries, now through chemotherapy, later through radiation, years of drug therapy, will be scared to death every time I go in for a mammogram from now until the day I die. What if I get a call back? What if I have to have a biopsy? What if the breast cancer comes back?

I know most of the answers. I’ll go, get tested, be brave, fight like hell, and on and on. In the mean time, I’m busy feeling scared, overwhelmed, and sorry for myself. And I’m going to wallow in it for a while.

I’ll get over it. I always do. We can talk later about accessorizing.

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Tired on Tuesday

Started the day with plenty of energy and ran out of gas at lunch time. It's to be expected, I think. I'm at the mid-point between treatments, when my blood count should be approaching a low point. Time for good meals, and good sleep at night.

That's tough these days, since the Boston Red Sox have clawed their way in to the World Series. Games in the recent championship series started after 8 p.m., and it looks like the trend will continue with this final series against the Colorado Rockies. I may have to call in sick to work!

I have heard raves for my new look (with a single exception). Apparently y'all think the new look is a winner! I wonder if the rest of my hair will fall out in the next week or so. If you remember, it started coming out on a Friday at two weeks after my first chemo treatment. This Friday is two weeks since the second treatment, and this morning there was quite a bit of hair (now short little pieces) in the bathroom sink. Time will tell.

Today's head covering of choice is a bright orange bandana printed with purple and yellow owls and moons. Quite stunning.

I'll have to line up PJ and her camera some one of these days and do a hat fashion parade for you. Then we can have a dramatic reading from P.D. Eastman's classic "Go Dog, Go!"

• "Hello!"
• "Hello!"
• "Do you like my hat?"
• "I do not."
• "Good-by!"
• "Good-by!"

~~~~~~~~~~~~~

• "Hello again. And now do you like my hat?"
• "I do. What a hat! I like it! I like that party hat!"
• "Good-by!"
• "Good-by."

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New Day, New Me!

Hair's all gone, folks! If you can't stand the thought of seeing a photo, don't click through.

This is PJ's handiwork and I have to tell you, I love it. I feel liberated.

What do YOU think??

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Monica's Bad Hair Day

My boss Monica just called out to me from her office across the hall. "Penny, I'm having SUCH a bad hair day."

So I lifted my baseball cap and called back, "Hey, you can do what I do!"

Poor Monica, it stopped her dead in her tracks. It was rather amusing. She's very sensitive to my situation and extremely supportive. Except when her hair isn't "on."

It started the day on a light, high note. I hope the mood continues.

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"Was That My Life?"

I heard a great song today, by Jo Dee Messina. You should check it out.

Here are the lyrics:

Was That My Life?

I don't want to be the one who's old before their time,
And lose the wonder that I felt as a child.
I can't run this race believing I might lose;
There's still so much to see, and so much left to do.
Yes, I'll fall before I fly,
But no one can say I never tried.

Oh, we just get one ride around the sun,
In this dream of time.
It goes so fast that one day we look back,
And we ask: was that my life?

I close my eyes and think how lucky I have been,
To hold the ones I love and share my dreams with them.
All those sunny days and all those starry skies:
Good morning kisses and sweet goodnights.
Oh, I can't tell them enough,
Just how much that they are loved.

Oh, you just get one ride around the sun,
In this dream of time.
It goes so fast that one day we look back,
And we ask: was that my life?

We just get one ride around the sun,
In this dream of time.
It goes so fast that one day we look back,
And we ask: oh, was that my life?
Ooh, was that my life rollin' on by?

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Turning the corner

Tried to go to work yesterday (third day after treatment #2). Got a few miles from home and had to turn back. It was another pretty miserable day, but I keep reminding myself--it could be worse.

I motored between the computer (to manage office business) and the couch and had to force food and fluids. I managed an English muffin for breakfast, an apple for lunch, a banana at mid-afternoon, and then a package of Ramen Noodles for dinner. I know, I know, sodium overload and bad-bad-bad for my body in every way, but it was about the only thing I could entertain keeping in my stomach.

Today started slowly; I made it to the office and planned to give it half the day. But by lunch time I'd managed to eat half a banana--and in no time felt remarkably better. I lasted until 4 p.m. (thanks to the second half of the banana... must be my miracle food).

Dave and I kept our traditional Tuesday Night Date Night. There was only one thing I wanted, and he found it for me--a cheese omelet with toast at a not-so-fancy-but-wonderful place in Wakefield. I'm such a cheap date.

I think I've turned the corner. If this time goes as the last, I should be on the upswing again. Appetite has a way to go, but at least the constant low-grade nausea is gone.

This whole experience gives me daily reminders to take a moment and give thanks for things large and small.

I receive regular greetings and blessings from my many friends at the Wilmington United Methodist Church, and each one lifts my spirits. Thank you, dear friends.

I receive lovely gifts from friends (including pocket planets, a "Born to be Wild!" t-shirt, a painted and decorated sea shell, river rocks, a small religious statue, scarves and hats, too many to mention them all). Thank you for thinking of me in these ways.

I receive e-mails and messages to these posts, and thank each of you for taking the time to reply.

All of these things mean the world to me, and remind me how important our personal connections are--not just to surviving, but thriving, no matter what obstacles try to block the path.

And Dave and PJ continue to be amazing at every moment. Some one of these days this will behind us... I'm counting the days until we can celebrate like we need to.

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Treatment #2, the second day

Oh my Lord, I feel just awful today. My face is flushed and feels like it's on fire and the rest of me is so chilled--I can't seem to get warm.

I'm not running a fever so there isn't really anything to fret about. It's just awful to feel so miserable.

Once again my appetite is gone--replaced by nausea--and I'm struggling to get in the 80 ounces of non-caffeinated fluid that my dear nurse Kristi tells me I have to drink very day. I've learned that the earlier in the day I can get the fluid in, the fewer times I'm up in the middle of the night meandering down the hall to the bathroom. It seems easier not to drink it at all but I know that's a mistake.

I have work I can do for the office, a chapter and a quiz to take for an course I'm taking online, and a stack of magazines and the first Harry Potter book are calling my name, but so is the couch, my pillows and a warm green blanket. Guess what will win my attention?

More next time.

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Treatment #2, the next day

As I already told you, yesterday was tough. Last night was tougher.

We had in invitation join my cousin Kathy and her family for a birthday-fest for her son but elected to pass because the day had been tough. So we opted instead to celebrate Chemo #2 with a Sicilian pizza from a favorite place in Wakefield and dispatched PJ to pick up. I was so hungry by the time she arrived and had such a headache (which I assumed I could feed and make it go away) that I chewed through two pieces and a slice of and Italian calzone. Big mistake on all counts.

I was nauseous all evening and had that slightly spacey feeling (like I shouldn't drive the car; I felt this way the last time too). Nothing alarming, I just wanted to sleep but the Red Sox were winning and that held my attention.

I woke up this morning feeling rested and strong, and headed off to the health center for my $2500 Neulasta shot (isn’t that a crime???). Then I did a Wal-Mart run for, among other things, funky bandanas (one black with a traditional paisley print, orange with purple and yellow owls and a Halloween pattern, and a royal blue with owls—typing this made me notice the owl trend).

Now it’s time to fold some laundry and think about food shopping. I’ve got a peppercorn and garlic pork tenderloin marinating in the refrigerator, something special for my cheering section. We need potatoes and asparagus to make it a complete meal.

That’s all for the moment. I’m curious to know who is out there reading my ramblings. Would you please hit the comment button and send me a note? I won’t post it as a comment if you don’t want me to.

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Chemo Treatment #2

Treatment #2 is history. Nothing special to report, went smoothly as before.

Actually this one came wrapped in an emotional package. I was very anxious as we were driving to the appointment and had a round of tears when my nurse (once again, the wonderful and gentle Kristi) pulled the plug on the Cytoxan and reconnected me to the saline. I can't explain the tears.

Chemo is scary. Even knowing what to expect (from the last time), it's an overwhelming experience. I try to throw some humor at it and I try not to think of what's really happening--nasty, toxic chemicals going into my bloodstream. But that's what's happening, there is no doubt. Dave was there from beginning to end and that makes it easier to handle. I hope it's not terribly hard on him--but I suspect it is. In spades.

So it's done. If it goes the way the last round did I'll be asleep before the Red Sox get their first "ups" again Cleveland tonight in the American League Division Series.

Go Sox. Go Penny.

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My continuing obsession with your hair

“Your” in the headline is the editorial “your,” meaning anyone other than me. Hair is the first thing I notice on people these days as I ponder my rapid hair loss.

I notice the color, texture, cut, style, the way it moves when you walk, the unconscious way you play with it as you talk. I envy that you can run you hands through your hair without consequence, tug on it without having to think about where you’ll throw what you pull out.

This was the first morning I didn’t lose handfuls of it in the shower. That’s because here isn’t much left to lose. I feel like I look sick, and that bothers the hell out of me. I don’t feel sick---why look that way?

Anyway, today is Day #2 in Hats. I’m officially bothered enough by my extreme hair loss that I don’t want to be seen in public without a hat. Yesterday I wore the blue “Life is Good” baseball cap; today’s it’s the brick red "LIG" cap.

It’s hard enough coordinating shoes with my daily wardrobe (I have too many shoes), now I have to coordinate my head gear.

Tomorrow is Chemo Day, Treatment #2. Four hours of toxic fun. At least I don’t have to worry about it making my hair fall out.

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Good God, it's all over the place

I cleaned out the file cabinet at my office today and came across a folder from my previous life as a newspaper reporter. It contained all my notes and story clips about a young man named Jared, who died of brain cancer almost eight years ago to the day.

I remember being in such awe of him, had so much respect for everything he was doing to beat his cancer and make it to his wedding day, which was to take place just two short weeks after he died. His fiancé Maureen kept her hope burning until moment before Jared died. It was all so sad.

As we were putting dinner on the table this evening, the phone rang, a friend from Wisconsin who called my mother earlier today and heard my news. Kathy has battled cancer twice herself and continues to fight to get it all behind her.

Two reminders in one day. Cancer is everywhere. There probably isn’t a person out there who can say it hasn’t knocked on the door of a loved one or friend. I don’t know what to do about it globally, I only know how to fight it locally. Fight it in me and do everything I can to make sure it never knocks on this door again.

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Thoughts while standing in the deli line

I had some time to people-watch this morning as I waited my turn in the deli line at the market. I become obsessed with the hair of other women.

There was the 40-something woman with an unattractive mane of black and grey long, curly hair that went half-way down her back. There was an older woman with thinning, straight hair and a teenager with her hair held back in a headband. There was the woman with hair pulled back in a pony-tail, who idly scratched her scalp. Her action made my head itch and I ran my fingers to the offending if imaginary spot and gave a rub. I came away with countless strands caught between my fingers.

Rapid hair loss is a very strange sensation. I’ll never forget what it feels like. I’m really trying not to encourage the process, but it’s not easy. It’s second nature to react to the awareness that something is happening to your skin.

If I had to guess I’d say that I’ve lost a quarter to a third of my hair in the last 48 hours. If I run my hand through my hand through my hair I come away with many multiple of strands. It was all over the pillow case this morning, and it’s all over my shoulders now.

When I showered yesterday and washed my hair, it came out easily as I tried to rinse out the shampoo. Maybe washing speeds up the loss process, but I have to wash it--right ladies? Dirty hair feels miserable, although when the loss process is complete maybe I’ll yearn for those kinds of “bad hair” days.

My scalp feels irritated. The shafts of hair are tingly, and I swear I can feel each one. That tingling sensation is distracting, to the point that I have to make an extremely conscious effort NOT to touch my head.

I can feel individual hairs as they come loose—it’s as if a tension is broken and now relaxed, that hair is free to fall. They come out onto my face—I sweep them away and in doing so take more for the ride. They fall down the collar of my shirt and I feel them suddenly on my skin. Proud trees falling in the forest that has been my head of hair all these years.

It’s all just so strange.

Hat tomorrow, no question.

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My second new look in a week

My hair is falling out. Seriously falling out. It’s so strange. My head feels warm, almost like it’s sunburned or like I’m running a fever. I can feel individual hairs just standing right up at attention. If I run my hands through it I come away with lots of strands, and if I reach in and simply told hair between my fingers and draw my hand out, the hair comes with it. I don’t even have to tug at it at all.

Looks like it’s time for a date with PJ and her hair clippers. She volunteered to do the job when the time came. We talked about how to do it, how short to go. At the moment my thought is to just do it and get it over with. Shave it off in stripes, then a bowl, then a Mohawk (did I say all this once before?) Make a party out of it. Ask Dave to help. Make my final moments with my hair a family affair.

We’ll take pictures.

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End of a long year

Today marks the end of a long year, one of the tougher ones in memory. It’s my birthday and I’m looking ahead to the next year being better than this one.

I’ve been thinking about this for a while and wondering whether there’s really anything cosmic about passing from one year to another. If so, which was difficult, being 53 or it being 2007? Which year do I need to have pass to the next?

Let’s try being 54 and see how that goes. Sure, there will be some rocky times ahead—completing chemotherapy and getting into radiation (which some people say is harder than chemo, I’ll let you know). Maybe it’s premature of me to think that throwing away 53 will be the turning point, but it’s worth a shot, right?

So far the day has been fantabulous. I took the day off from work, slept in, drove to Kittery to have lunch with my sister and mother (Warren’s Seafood Restaurant, salad bar and a Coke with lemon, slice of birthday chocolate mousse cake delivered by the “Happy Birthday” serenading staff), and now Dave and I are heading out to meet our friends Chuck and Gail at the Topsfield Fair. Next to my birthday, the fair is my favorite thing about October.

So, I’m off to look at chickens, the giant pumpkin, BK’s dahlias, piglets, baby chickens, walk the midway and have no trouble resisting the temptation to throw darts at balloons or rings at bottle necks in a useless attempt to win a stuffed animal, maybe ride the ferris wheel, watch Dave enjoy a sausage-pepper-onion sandwich, and try to decide between a plate of tempura or a baked potato with broccoli and cheese.

Life is good.

UPDATE: Had corn chowder in a bread bowl and bought a wicked cool "Betty Boop" skull cap.

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Here's that pic I promised

Here's photo evidence of my new albeit temporary look...


Not the the best photo and the 'do isn't styled. The best part of the photo is that absolutely beautiful smiling face to my right (your left). She's the Number One reason I'm doing this, because I plan to be around for a very long time. I have WAY too many stories about her to tell to my someday grandchildren.

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