Prison Hair Series 1

Department of Corrections for Hair

I've decided to document my growing hair in a series of mug shots that I will call my Prison Hair Series.  Here is the first installment. Notice the Jane Fonda fist of power in the front shot.

If you all could help me, and let me know your vote on the important issue of hair color.

Stance 1:  Leave hair the color it currently is and see just what grey might do to my face.

Stance 2: Buy that box of semi permanent auburn and get thee to a red color hence.

What say ye?

Take Me Away From All This Death

I don't even know how to talk about the sorrow I feel. It sits like a cold, jagged space in the middle of my chest.  This Friday I fly back to Wisconsin to finally bury my sister Melissa, the sister who died of a combination of pneumonia and heart attack just before Valentines Day 2011. Her death was so close to the holiday that when I returned to my home after the funeral, I was greeted by a Valentines Day card she likely mailed to me the day she died.

I received the call telling me my sister died while I was talking to a tattoo artist about adding to a piece I'd had done in memory of my mother who had died in August 2008.  That tattoo is a heart with the words "I love you forever" curved around the bottom.  My mother always signed every card, letter, and email this way, and I wanted a permanent imprint on my body to remind me that my mother still loved me forever.  The tattoo artist and I were discussing flowers when my nephew Josh called.  I didn't realize what he was calling about, so I asked if I could call him back.  Once I left the studio and returned his call, hearing the news, I wandered the streets near the studio, not remembering where I had parked my car.  I was stunned and I was in shock.  I walked in that confusion for an hour until I finally found my car. I flew home to Wisconsin the next day to attend my sister's funeral.  My beloved, beloved sister.

Funerals are occasions to get things done. Talk to the funeral home. Order the programs. Create a picture board in memory of.  You're so busy, you don't have time to feel the full brunt of the grief. But when I walked into the room to view my sister's body, that is when I broke down. And when I say broke down, I mean sobbing. Deep, deep sobbing that weakened my body and drew me down to the ground.  My sister was dead. The sister who sent me care packages. The sister who called to make sure I was okay. The sister who sat up all night with me, as my mother died, sitting vigil with me, each of us helping the other through the deadening pain. My sister.

So Friday I fly home to finally bury my sister's ashes a year and a half after she died--my brother-in-law seemed to not be emotionally able to deal with a burial, and only my diagnosis of cancer pushed him towards letting us bury her at all.  Now I sit with the pain freshened up in my soul, reminding me that neither my sister nor my mother are here to help, to call me, to comfort me, to hold my hand through this horrible cancer journey.  Yes, I'm selfish. I want them here to comfort me.  I feel lonely in the world without them. I want them back. Just like my brother-in-law, I don't want to bury my sister either, if it meant I could have my sister Melissa here with me again.

But Melissa is dead, and she left burial instructions.  So no matter how painful the task, I will help to ensure her burial instructions are honored.  Melissa will be buried on a rolling hill, overlooking the Wisconsin farmland she lived on for many years.  It is what she wanted.

Years ago, on my way home, I'd take a short cut through a small cemetery.  Towards the edge of that cemetery was a small grave, a lamb sculpted into the top of the headstone. The toddler buried there died in 1935. And over fifty years later, every week someone was leaving fresh flowers near the stone. I used to wonder about that grave. Was the mother of that barely two-year old child still leaving those flowers? Or was it maybe the sister of that child, the mother leaving an indelible mark of sisterly duty, compelling the living child to continue to leave flowers, even after the mother had died.  Either way, those flowers represented over fifty years of dwelling on death and loss, and that struck me as very sad.

In a similar way, my life has become about death and loss, whether the deaths are those of my sister and mother along with two close friends, or my own possible death due to breast cancer. Whatever the death or loss, I'm tired of it.  As Winona Ryder's character desperately whispered to Gary Oldman's Dracula in the 1992 movie Dracula, "Take me away from all this death."  Her breathy whisper always struck me as Winona Ryder's morbid call for Calgon to take her away.

Like that death-whelmed character in Dracula, I want Calgon to take me away too.  I don't want to lay flowers on anyone else's grave. I don't want to help anyone else die.  I don't want to think about death and dying anymore. Screw Elisabeth Kubler-Ross and her death and dying.  I want to live.

Anyone else want join me in being alive? Let's not talk about funerals anymore.  How about we skip the imaginings of end of days and burial plots? Let's focus on babies and puppies and sprouting fields of wheat. Let's wallow in new car smell, freshly planted mint, scrumptious meals, movies that won't be out for years to come. That's the kind of life I want to live. A life focused on life rather than death.  Because frankly, I'm just plain sick and tired of death. So let's all get back to the business of living and be done with it. Damnit.  I'm off to Kmart to buy some new car smell in a can. I'll drive. Wanna join me? Hop on in.

What'd You Call Me?

There are lots of ways to refer to what I have.  Stage IV cancer. Metastatic breast cancer. Advanced breast cancer.  Frankly, I don't like any of these labels.  I'd rather say, "I'm just a touch under the weather. Give me a sec, will you?"

But still, these are the official names of "oh, crap, it's bad" cancer.  Does it matter how I refer to my disease?  A study I read recently says, yes.  In the study, the group referring to themselves as having metastatic breast cancer had slightly higher survival rates than the group referring to themselves as having Stage IV breast cancer.  I know for me that the term Stage IV has always meant imminent and fast-approaching death, so I tend not to use that label.  If asked, I'll say I have metastatic breast cancer. It's the label I prefer.

Lately though I treat my disease as if it is an unpronounceable name; like the Judaic Yahweh, so beyond any human's understanding, that even a label couldn't begin to capture the essence of God.  But instead of this disease being so grand in my mind, it is so frightening, the words sticking in my throat in an attempt to not talk about it at all.  If I don't say the label, but merely motion toward it, I don't give it the chance to terrify me yet again.

It took me a long time to realize that several people assume I am going to die soon.  A look in someone's eyes, a sudden changed experience with that individual and it dawned on me, "Oh, they think I'm going to die."  Luckily I hadn't been thinking that way at all.  I still think of myself turning 70 or even 80. I continue to look down the road to what life will be like when I am old.  It just never really struck me that I was shooting down a path of death. I do think of dying here and there. But that stuck in the craw thought of, "you're going to die real soon" just wasn't happening for me, thank God.

Recently I watched an interview with Michael J. Fox. He was describing what it was like to live with Parkinson's Disease, comparing it to freezing in the middle of the road as a bus hurtles toward you. That is a perfect image for this disease. Frozen with a bus coming down on me.

Here's the challenge. How do I live with that bus on the horizon? Lately, I've been staring at that bus, looking for some sign, some clue. Will the bus hit me hard now? Or will it clip me and leave me disabled and dragging through the rest of my life?

I've talked to people who, although they've survived for years with metastatic cancer, talk only about what they can't do or what they can't have. I've gotten a taste of how hard this journey is going to be. I'm scared of what comes next. But, frankly, the bus may never hit me. I know the odds are low, but I might die many, many years from now of a standard heart attack. So I may live for years with this disease, and I don't want those years to be me focusing on what I can't do or what I can't have.

Yeah, my feet and fingers continue to be neuropathy numb. Yeah, I get up in the morning, or push myself off the couch, and I'm waddling sore. I admit I'm chemo fatigued.  But you know what? I keep pushing myself off that couch. When I see something on the floor that needs to be picked up, I make myself bend over to pick it up because I don't want to live in a littered house, and bending over will give my legs and hips a stretch.  At night, when I lift Pearl, the miniature schnauzer, onto the bed, I pause and lift her above my head several times to strengthen my arms. It might sound stupid, but it's my way of taking it slow, and I figure if I do little things along the way, I'll build up to bigger things down the road.

I remember when I was in Barbados years ago, there were two types of public buses.  One was a government-owned bus, plain blue, simple, gets you around.  The other was a privately-owned bus, tricked out with decorations, raucous, packed with riders, leaving only standing room in the aisles.  The bus I chose to ride was the 50 Cent bus, decorated with oversize images of the rapper, his music blaring loudly from speakers above the riders' heads.  Ice cream in hand, I rode that bus standing, hanging on to the overhead railings, leaning into the curves as the bus careened around the island's twisting roads. That was an alarmingly fun ride.

So maybe that's the bus coming toward me. Loud, glittery, careening around the curves.  At least then when I stare at the bus, I can listen to the music, see the sparkling decorations, and enjoy the raucous crowd taking the ride. It's better than thinking of death.

Also published on CureToday

A Girl and Her Tiara

Her highness of fuzzy, new hair growth.

Well, not so much a tiara as a sparkly head thing.  As long as the sparkles set off my hair, that's all I care about.  I want it to showcase the hair I get to keep. 

That's right, kids, my oncologist tells me that I don't need chemotherapy for a while, until we see a progression, which will hopefully be never. So my beautiful, fuzzy hair gets to grow and grow and grow.  And in honor of that news, I wear a sparkly headband.  I certainly don't need a headband, there's no hair to hold back.  But the sparkles say this virgin hair of grey and brown get to stay. Yippee!!!

The news about chemotherapy, along with the seven point drop in my CA2729 tumor marker from 33 to 26, and an x-ray and  scan that show no gaping holes in my bones, makes me a happy, happy woman. 

In the world of metastatic cancer, there are no guarantees.  But in spite of that fact, I am going to take this joyful, good news and relax.  I will wear my sparkly head band, watch bad movies, and order take out Chinese food every night, if I want to.  I am just so grateful to get positive news.

And frankly, it's about damn time I got some good news.  About damn time.

I Used to Have Such Nice Hair

Ze baby ostrich look

And nails. I had nice nails. Oh, and let's not forget eyebrows and eyelashes. I liked those too. But thankfully, now that I am on chemo break from Taxol, I'm starting to get those things back, hair and nails. It's slow and I look like a baby ostrich, but things are growing back.  You need evidence?  Here I am in the baby ostrich mode.  I call this photo "Baldie". Can you see the slight outline of tiny wisps of eyebrow growing in? Notice the grayish tinge of the scalp hair peeking through? I hear from past chemo folks that the hair tends to come in gray at first, but then reverts to your original color.  We'll see.  Either way, I will be grateful to have hair, I don't care what color it is.  At this point I make jokes about using hair gel to slick things up into an Alfalfa impersonation.  The look may not be ideal, but with temperatures in Washington, DC reaching 105, I am sans scarf, hat or wig. No need to send myself into heat stroke.

And now the nails. There are so many wonderful side effects that come with chemotherapy. Taxol, my assigned drug for 20 weeks, is supposedly kinder to the body than many other chemotherapy drugs. However, the steroids I took to avoid allergic reactions, and Taxol, have left me with:

• No hair, eyelashes, or eyebrows;
• Neuropathy in the hands and feet (hopefully, this will fade);
• Deadened nails, partially lifting off the nail beds, creating that coveted swamp thing look;
• Acne scars from the encroyable amounts of steroid-induced acne that spread across my chest, sides, and face; and,
• Swollen ankles I have affectionately dubbed my old Polish lady ankles, bringing questions from friends like, "Do you speak Polish or do only your ankles speak Polish" -- such clever friends.

While I hate these lingering gifts and hope they fade over time, I am certainly not stupid enough to not feel incredible gratitude toward Taxol. Taxol saved my life, knocking the cancer in my breast and liver back by over 90%.   I can deal with a little neuropathy, and suck it up when it comes to my ankles and slow-growing hair.

Still, the nails are gross looking, and the now disabled nails, combined with neuropathy of my fingers, makes it very hard for me to perform basic tasks such as opening a can of soda, pulling a credit card from a wallet, or taking out a pair of post earrings.  So I bring you a picture of the lovely little items, my lifting nails.

Was there a way to save the nails and hair, you say? Why, yes, there was. Some folks choose to wear what is called a cold cap and ice their nails during chemo, both uncomfortable procedures involving application of very cold ice to head and hands.

Here's the reason I chose not to do either of these things.  The goal of chemo is to kill fast growing cells, cancer being one of the fastest forms of those cells.  Unfortunately, other fast-growing cells, such as hair and nails, are hit by chemo too.  The theory of icing is to keep the chemo away from the fast-growing nail and hair cells. But what if cancer cells have moved towards the scalp or into the hands? What if while protecting your hair and nails, you protect some cancer too?  
 
Considering that I already had cancer on my liver when it should have damn well stayed in the breast, I didn't even want to accidentally let any cancer cells live while I was trying to save my hair and nails. So no icing for me.  I wanted Taxol to cover every millimeter of my body. I wanted it to bomb the hell out of cancer cells that might be hiding in my scalp, near my nails, or even, God forbid, on my butt.

So I knew what I was in for. I'd seen the pictures other chemo friends had posted. That doesn't make the nail, hair, neuropathy moments any easier. But it does put them into perspective.  Just call me Nuclear Meltdown Woman.  I practically shine in my decrepitude.  Hair be damned. Nails be damned. Ankles be damned. And most especially, cancer be damned. Because killing the cancer was my goal. The hair and nails were only collateral damage.

Progress Not Perfection

That's my new approach. I saw my oncologist today to go over the results of my bone and CT scans.  Here's the interesting part.  My oncologist was so concerned that the cancer had grown in size, she was thrilled the scans showed a decrease in size of the tumors. I, on the other hand, had been hoping that all the tumors were gone.  So I was slightly disappointed. Same result, different expectations, and, therefore, different reactions. My doctor has seen patients like me show increase in tumor size at this point, and I have no experience so figured I'd be at zero tumors by now.

Certainly, my oncologist's experience and reaction had an impact on me.  I am now grateful that the tumors have decreased even a little and that the chemo and Herceptin are still working. I learn quickly.

But here is what I am really thrilled about.  I get a two month break from chemo. Thank God. I need this break. The chemo has been kicking my butt to the point where I feel ground into the floor.  I am exhausted, my hands and feet are plagued with neuropathy, and now my nails are falling off.  My body feels very weakened and I would like some time to get my strength back.

So for two months I'll be receiving Herceptin every three weeks (the Herceptin will keep the cancer from growing) and I will be closely monitored to make sure nothing starts up again.

Plus, during this period, my oncologist wants to take a closer look at the metastatic area on my femur and consider using radiation on the spot. Based on the bone scan, the area is less active but the oncologist still wants to asses it. Compared to chemo, this all sounds like a breeze.

What struck me the most though is my oncologist's overall reaction. She's very relaxed about it all. There's no urgency, no air of "we need to deal with this now or you'll die." She views the cancer as something we can contain for a period of time and then go back to attacking.  This air of relaxation means I can relax too and enjoy my break, although I am fully aware that if the tumor markers go up, I will be back on chemo lickety split. My oncologist is demonstrating a progress not perfection approach, and that is a healthy view.

Even a Weeble has more hair than I do

I'm looking forward to the next social occasion I'll actually be able to attend since I won't be knocked out by chemo. And I'm looking forward to seeing the tiniest bit of hair growing back, even if it is immediately thrown off my head by the next round of chemo. I've become a person who is grateful for the very small things.  Hair growing back, the tiny bit of healthy nail showing at the base of my nail bed, the ability to even get up and attend a movie, any feeling coming back to my hands and feet. 

Progress not perfection. It's not a bad idea. And frankly, when you look like a Weeble, but with no hair, eyebrows, and eyelashes, progress sounds like a really fine thing.

Is This What Hell Looks Like?

I've seen the inside of Hell a few times. There was the stunningly abusive boyfriend of my early 20's who I was sadly head over heels in love with. After finally escaping from him, in spite of his stalking me, that one took years to crawl back from. When  I described the experience to people, they likened it to a stint in a Southeast Asian POW camp.  That was Hell.

Then there was the death of my beloved mother and sister within too short a period of time, deaths that could have been prevented had my mother not been affected by the after effects of food addiction and my sister not lived so deep in her food addiction, she chose death instead of recovery. Those losses were Hell.

Now I have metastatic breast cancer and this is a new version of Hell.  No one is yelling at me or berating me. The grief of death and loss is not rolling over me like a wall studded with sharp, poisoned knives. Instead I am being beaten by constant chemo and constant fear that comes speeding in like a roller coaster. And I don't even like roller coasters.

I keep reaching for bits of hope.  Let's be honest. My situation is hopeful compared to many.  Metastatic folks come in three varieties: one group will get the cancer and die soon after; another group will get the cancer, be treated, and go into remission for a while and then the cancer will come back and take them; the third group will get the cancer, be treated, and go into remission and live a long, long time.  We all want to be in that third group.  I sure as hell do.

At this point it's clear I'm not part of group one, since I'm responding so well to chemo, but instead a contender for groups two or three.  But meanwhile the chemo continues and with it goes my spirit, beaten down by constant exhaustion, neuropathy and other side effects.  I reach for any bit of hope to keep me floating above the constant hum of impending despair.  I just want to find out which group I'm in, two or three. So I ask my doctor about more scans, blood tests, anything to get a read on this.

Here's the deal though. Every effort I've made toward finding out more have slapped back at me, from seeing the CT scan and realizing this is real, really real, and then dropping into yet another depression fed by fear; to having the ultrasound technician scanning my liver tell me she measured a mass of 4.2 cm in my liver.  4.2 cm is what we started out as the largest tumor before chemo, and that tumor had astoundingly shrunk to 1.7 cm. Had it grown back?  This remark was made just before the weekend, leaving me in yet another weekend of terror, only ended the following Monday with a visit to my my oncologist who told me that this was not a cancerous mass but something benign.  Geez and cripes. What a waste of terror.

After this I decided I no longer cared.  Not about living. I do care about that. But I don't care about the scans or the results, at least not from the mouth of the technician doing the scan.  And I no longer care what group I'm in. Fact is I can't do a damn thing about any of these things. I can only show up, be scanned, hear the results, and then talk about the next steps in my treatment.

Here's what I want.  A break from chemo so I can experience a normal life, even for a little bit, and so I can fly back to Wisconsin and bury my sister (Melissa died in February 2011 and was cremated, but my brother in law is not doing well in his grief so seems to have avoided the actual burial in an effort to forget about all of this).  There are other things I want, like my hair back, my eyelashes to regrow (when you lose your eyelashes, you realize they actually do something like protect your eyes), to be able to walk my dogs, a social life, and on and on.  But those things will have to wait until I'm completely done with chemo. For now, I'll focus on a break from chemo and my sister's burial.  Small but at least it's something.

I've  also realized I can't look very far forward into the future, mainly due to chemo. So I've got no choice but to focus on immediate pluses and hopes.  Today is my last treatment with Taxol and my oncologist is already talking about using a new chemo formula for the next round (the Taxol has been giving me a heck of a case of neuropathy and my oncologist wants to avoid that becoming permanent). At the end of this round of Taxol, I'll have had 20 weeks of Taxol chemo. That's a lot.

Monday I go back to the hospital for a new CT and bone scan. Then the following Monday, 6/25, I'll meet with my oncologist to go over the results and talk about what to do next.  I do not believe in a God who does things, saves some, takes others.  But at this point I am a foxhole atheist, openly praying that this cancer goes away, that it won't be seen on this next set of scans. Even if it's shrunk further, that would be wonderful.  But nothing showing on the scan, that would be miraculous and wonderful.  So I'm in this foxhole praying, praying desperately.

And I'm focusing on the week break I get from chemo while we scan and talk, the one week I'll have of being awake.  I'm not quite sure what I'll do with that time. Walk a dog? Go out with friends? It's boundless. See what I mean? It's the little things that count and help.

And by the way, I wanted to thank all of you for your cards, emails, calls, assistance during chemo, going with me to doctor appointments, helping me with grocery shopping, helping me around the house.  I am deeply grateful to you all and every little thing, and I mean little thing, helps.  You all have been keeping me afloat and I cannot begin to repay you.  If I had an in with the kind of God who did things, I'd get you all straight into Heaven, or at least buy you a Slurpee. Wait a minute, the Slurpee I can do.  Slurpees on me, everyone!  Right now I'd really appreciate you all joining me in my foxhole for a prayer. Come on down. It's clean and dry and I got boxes to sit in.  Just do me a favor and pray for a miracle.  That would really help.