Thursday, April 21, 2011

Chemo Thoughts on a Fine Spring Day

I've been run over by the chemo truck. My body aches. If I didn't know better, I would think I had run the Boston Marathon with those 26,800 crazies amazing athletes last Monday, rather than sitting in a reclining chair being infused with a chemo cocktail. Even my face muscles ache. My brain is content to just wander through this tired body, sometimes sleeping and sometimes staring blankly into space. I feel like a bystander in life; as if I could watch 24 hours of back-to-back Wheel of Fortune episodes without flinching.

My Bible reading this morning included 2 Peter 1:13, which reminds us that our bodies are just tents -- nothing more than temporary and utilitarian shelters compared to the coming glory. Thank God for that: my tent is saggy and battered. It's nice to know this isn't my permanent home.

On the other hand, it's a beautiful, sunny April day. Even a hurting body can't completely turn my focus from the amazing gift of life right here, right now, springing everywhere in glorious color and variety. Life is incredible. It's not just something to only look beyond for the glories to come. I look out our front window and see the remains of a tree cut down this winter: even this left-for-dead stump has sprouted a glorious spray of blossoms. It's a well-timed reminder to hold on; that we don't need to participate 100% in life to appreciate its beauty and tenacity; that we can praise God in all circumstances, including right now.

Sunday, April 17, 2011

Round 2: Me versus Chemo

Today, I looked in the mirror at my bald head and thought, Man, I look pretty tough! So, as I prepare for Round 2 of chemotherapy in the morning, I picture myself as a fighter.

(Mental soundtrack: the theme song to Rocky and Pat Benatar's Hit Me with Your Best Shot)  [Help! I'm stuck in the '80's!]

Here's me, the tough fighter, "trash talking" chemotherapy:
Chemotherapy, I'm on to you. You aren't something to fear; you are just a cancer-fighting tool. Nothing more. You might steal my hair and my energy and you might take down my immune system, but all your effects are temporary. I'll be back. I'm SO on to you.

And I'm fighting your chemical warfare with chemical warfare: over the next three days, I'm taking THIRTY-SIX different pills to counter your negative effects. Now I know what to expect from you and I'm prepared. I've got a pill or two for every side effect you hit me with. And that's not all, I'm eating my veggies (organic ones. Take that!) and swallowing multivitamins and lifting weights and jogging -- three miles this morning (but no steps to the Philadelphia Museum of Art. Sorry, Rocky). You won't take me down again without a fight.

I even know ways to use you to my advantage: I shave my legs and they stay shaved. Ha! My week of quarantine? That's reading and writing time: a gift of two of my favorite activities. And all these headscarves? A fashion statement, that's what. Triple ha!!

Chemotherapy, you ain't da boss o' me.

On a separate note, Things to Ponder:
1. If my immune system has been laid low, how is it that I still have seasonal allergies? Despite my training as an immunologist, it's all a mystery to me. Something to think about.
2. Another thing, how much hair must one have to still require shampoo? Are the scalp-conditioning benefits listed on the bottle just a gimmick? At what point do I just soap my head?

Bald Truth

My hair was cut short (1/4-inch) last Friday. It began falling out the following Monday.  Despite all my preparations, the hair loss this past week was a difficult experience. My military-style haircut probably made it less traumatic than losing clumps of long hair would have been. I hardly recognize the falling pieces, since they are so dark and short. But the constant hair loss was/is still hard.

Losing short hair (as opposed to long hair) also has a serious disadvantage: all those little loose pieces on my scalp and falling onto my neck and into my clothes ITCH LIKE CRAZY. It's enough to drive me batty. I shower twice a day to relieve the itching and wash more hairs away. Tuesday, I could no longer stand it, so I shaved off most of my remaining hair with an electric razor. It's not pretty -- I left a ring around the edge to help me adjust the wig. I look like a tonsured monk. But it feels better. And, surprisingly, I'm more comfortable with baldness than I am with constant hair loss.

Funny: The remaining bristles on my scalp serve a very practical purpose. They act like Velcro to hold my beautiful silk scarves in place. I feel them poke through the top and know that this scarf is staying put, no matter how windy the weather.

I find myself wearing scarves more than a wig. Scarves are more comfortable (especially silk ones since loose hair doesn't cling to them) and feel more secure. The wig looks fine in the mirror, but I constantly worry that it's not on correctly. If anyone so much as looks at me in public, I'm positive my hair is on crooked and that everyone is staring at the lady in the wig...

In truth, the only funny looks I've gotten were from my kids. Although we discussed it for months beforehand and have a wonderful book about a bald mother going through chemotherapy (Nowhere Hair by Sue Glader), the kids still can't get over the fact that their mom is going bald and wears a wig. Every time they see me wearing my wig in public, like when I pick them up from school or an after-school activity, they look at my hair first and then give me this funny smirk. It's like we're co-conspirators in some great, secret joke.

My hair loss is also the first physical manifestation of cancer to my children. They have done very well so far with the surgeries and recovery and other chemotherapy effects. All along, I have educated them about what is happening to me and have answered their questions honestly and completely. But I could see in their faces, when they saw my shorn hair the first time this past week, a look of shock nearing horror. Since then, both have asked me if kids get cancer and how they would know if they had cancer. But they, like me, will come to accept it over time.


I'm including a photo of me in my wig. There were so many choices of style and color that it wasn't an easy decision. But I like that this one is a little messy ("tousled"??) -- like my natural hair.

I'm also including a picture that shows my inspiration for hair color choice. In my quest to raise a strong, confident daughter, what an honor to be able to say to her without words: if I could choose any hair color, I would choose yours.

Sunday, April 10, 2011

Hair and Care

On Friday, my two dear prayer buddies accompanied me to get my head shaved. I had scheduled an appointment with a woman who sells and fits wigs and regularly helps women in my situation. She was very compassionate and, instead of shaving, cut my hair very short so that less than a quarter-inch length remains. This was less traumatic than shaving, because it leaves something there. When I see my face in the mirror, I can imagine my hair is just slicked back, as it is after a shower. Having very short hair also took away the scalp pain and pulling I felt when my hair was long.

I am grateful to Jane and Carolyn for accompanying me and allowing me to jabber nervously from topic to topic as the hair fell in piles on the floor. They sat with me and prayed for me and listened to me through the cutting and then the wig fitting. I am grateful I could leave with a beautiful wig, carefully fit and styled -- a positive ending to the appointment.

It's still hard to look at my head (especially in the back) but not as hard as I expected and not as hard as it was to anticipate this change. As with the surgeries and even the diagnosis, the anxiety of anticipation was the most difficult part. Once again, I have been given the perfect measure of grace to cope with the change as soon as the change took place. Why is it such a challenge to accept the promise of peace in Philippians 4:6-7, when it has proven true in my life over and over again?
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Adding to my sense of peace are the kind compliments of friends at a school function last night and at church this morning. My wig was admired, even by someone who hadn't realized it wasn't my own hair. I am also helped by gifts of many beautiful head coverings. My mother, who is a cancer survivor and sews beautifully, gave me her head coverings and made new ones, including some from my sister's fabric collection. My friend Dolly gave a collection of gorgeous Indian silk scarves that even my children can't resist wrapping around their heads. It's humbling to be the recipient of such bounty and kindness. Thank you!

Friday, April 8, 2011

The Last Indignity

Today at 10am, I will get my head shaved.

Chemotherapy-related hair loss begins 10-14 days after starting certain drugs (taxotere, in my case) and continues for several weeks until all is gone. It is often described as the most difficult part, emotionally, of cancer treatment. Hair is crucial to many women's self image, and hair loss is noticeable to others, a public manifestation of illness.

There seem to be two schools of thought about dealing with this indignity.  Some women have their head shaved before most of their hair falls out. Others let it fall out naturally, even standing outside on a breezy day and letting their hair blow away. The second method is all very lovely and natural in theory, but I struggle with the thought of living for weeks with slow loss. I'm of the first school of thought: proactive, let's-get-this-over-with thinking.

For one thing, it's inevitable. Already last week, after the first round of chemotherapy, my scalp felt funny. It ached a little, and my hair felt too heavy. I'm glad, though, since this makes it more real. It was a first step in letting go.

All the same, even though I am choosing to lose my hair all at once, I struggle with the thought of getting my head shaved. It's an indignity. Head shaving is often a symbol of shame. Defeated armies and slaves have had their heads shaved. During World War II, Jewish prisoners had their heads shaved, ostensibly to prevent head lice but more as a form of humiliation. After World War II, thousands of European women who associated with German soldiers had their heads publicly shaved in front of cheering crowds to shame them. It reminds me of the scene that always made me cry in The Lion, The Witch, and The Wardrobe. Aslan, a lion and King of Narnia, has allowed himself to be captured and tied up by the White Witch as a ransom for Edmund's life. The Witch, finally having Aslan in her clutches, wants to humiliate him before she kills him.
"Stop!" said the Witch. "Let him first be shaved."
Another roar of mean laughter went up from her followers as an ogre with a pair of shears came forward and squatted down by Aslan's head. Snip-snip-snip went the shears and masses of curling gold began to fall to the ground. Then the ogre stood back and the children, watching from their hiding-place, could see the face of Aslan looking all small and different without its mane. The enemies also saw the difference. ... And they surged around poor Aslan, jeering at him...
As for me, I pray that I have the grace to cope with this one last indignity of breast cancer treatment. Even though I'm not a "hair person" who considers my hair an important part of my identity, this is hard.

I think of Proverbs 31, which describes many desirable traits for a woman. Verse 25: "She is clothed with strength and dignity; she can laugh at the days to come." That is what I desire physically and emotionally: strength and dignity and a sense of humor over the coming months.

Spiritually, I have described this whole cancer experience as a crash course in aging and mortality. I pray that I do not forget these lessons on the temporal nature of the body and that I focus on the eternal rather than getting distracted by the things the world considers important. Practically, this means minimizing exposure to fashion magazines, television, malls and anything else that might make me want the things women are supposed to desire. Fortunately, those aren't things I encounter daily.

Last night, I let the kids cut my hair (with the assistance of my dear husband who then tidied up their hacking). It's my way of making the head shave a little less dramatic, by first getting my hair short. In a few minutes, I leave for the head shave and, more uplifting, wig fitting and styling. I'll post pictures of me in my wig when I return.

Tuesday, April 5, 2011

No Side Effects!!

More than 24 hours have passed, and the Neulasta has not caused any noticeable side effects. This is wonderful blessing. I was so upset yesterday that my immune system had been decimated and that I faced another onslaught of side effects after finally feeling better after last week's side effects. However, even if I couldn't avoid Neulasta, I did avoid its side effects. That's just as good. How wonderful to be upheld in the palm of God's hand!

Psalm 73:21-26
 21 When my heart was grieved
   and my spirit embittered,
22 I was senseless and ignorant;
   I was a brute beast before you.
 23 Yet I am always with you;
   you hold me by my right hand.
24 You guide me with your counsel,
   and afterward you will take me into glory.
25 Whom have I in heaven but you?
   And earth has nothing I desire besides you.
26 My flesh and my heart may fail,
   but God is the strength of my heart
   and my portion forever.

Monday, April 4, 2011

Quarantine!

My neutrophil counts are very low: 800/mm3 (normal range: 1,500-8,000/mm3). Since my levels could continue to drop this week before recovering, Dr. Lee gave me an injection of Neulasta.

The good news: this injection will minimize the amount of time my body is especially susceptible to infection. I will be given the injection earlier in my next rounds of chemotherapy to prevent such low levels.

The bad news: I have only had a few days of feeling well again, and now I face possible flu-like side effects and bone pain. And I need to minimize human contact for the next three days. Quarantine!

Please pray that my side effects are minimal and that our family stays healthy this week. This is the any-low-fever-could-land-me-in-the-hospital time.

So now I'm cleaning and dousing myself in hand-sanitizer like an OCD hypochondriac, eating a big bag of gummy fruit (comfort food), and feeling guilty that I sneaked into church yesterday. How funny to feel guilty for going to church!

I am also feeling grateful for the return of my energy after last week, when I went to bed at 8pm and shuffled around the house like an old lady and gave a big sigh every time I had to gather my energy to do something productive. I was back to normal for the weekend, and -- believe me -- normal is something for which to be very, very grateful. I am grateful for the energy to get off the couch in the afternoon! I am grateful that I can walk around the block! I am grateful that I can clean the bathroom! And, anticipating the upcoming loss of hair, I am grateful for my hair, even though it's messy and shaggy. It's mine! It's attached to my head!

Friday, April 1, 2011

Okay Again

I am much better today. Yesterday's bad day may have been caused by a virus caught from the kids -- I ended up with a fever and chills on top of all the chemo side effects. Today I'm back to slow but okay.

Please pray that my blood tests on Monday indicate that the white blood cell counts haven't fallen far enough to require intervention. The drug that stimulates white blood cell growth comes with its own share of unpleasant side effects, namely bone pain.

Many thanks!