In His Palm

[Part of this post was later adapted into a chapter for a Chicken Soup of the Soul book. The book chapter uses a pseudonym for Reagan.]

It's been a rough fall. I started tamoxifen on August 1, with much dread. Nonetheless, the first weeks were a breeze; my worries seemed unfounded.

But soon I began experiencing hot flashes. Even though they were more frequent and more severe than the typical patient experiences, I soldiered on. I told my doctor that I could certainly handle that after going though chemotherapy. Many fellow survivors assured me that things improve after a period of adjustment.

However, as the weeks went by, I developed additional health problems that were likely related to tamoxifen's effects but were far more severely uncomfortable than hot flashes. Things seemed to get worse and worse rather than improving. After two months of seeing specialist after specialist and trying treatment after treatment, I was disheartened and upset. I returned to my oncologist, and he took me off tamoxifen. It was a relief to me, even if it increases my risk of recurrence. I am at peace with the decision and am slowly recovering my health.

During the month of October, in the midst of my discomfort, my prayer buddies began to pray that God would bless me with a wonderful November. They remembered that I was diagnosed with cancer last November and that I dreaded that anniversary, November 30.

November 1 came. I was still on tamoxifen and miserable.
Mid-November, my doctor took me off tamoxifen, but the side effects were unrelenting.
Late-November, I resigned myself to an unanswered prayer for a wonderful month. Oh, well, it's not big deal, I told myself. I blamed myself for not insisting weeks earlier on being taken off the medication. And it was my own decision to accept some work projects, which always add another layer of stress onto our busy household and didn't help improve the month.

But the second-to-last day of November, God made my month wonderful. I ran into a neighbor with whom I once served on the local church's council. "I need to tell you something," he said with an air of mystery. "Do you remember Reagan?" I knew he wasn't talking about the former President, but I didn't know anyone else by that name. Seeing my blank look, my friend continued, "He was that homeless man sleeping in the church garage five years ago."

Then I remembered. I hadn't known his name that Sunday afternoon five years ago when we, the church council, had learned that a homeless man was sleeping in our garage. He wasn't a nameless, faceless stranger; he was born and raised in our little town. His mother still lived here, and many older residents remembered him as a boy. But now he was back, but as a broken man,addicted to alcohol and homeless. These are overwhelmingly complex issues, and we -- the church council -- felt inadequate in choosing the best course of action regarding the man sleeping in our garage. We wanted to be compassionate but not enabling. We wanted to protect him but also address the fears of neighborhood parents. We had no idea what to do.

"Remember how you left him your sleeping bag?" Jim asked me. I did. I remember, after our council meeting that Sunday, going home and then returning to church with a sleeping bag from our camping gear. It was winter, and the weather forecast predicted a low of 19 degrees that night. I remember stepping fearfully into that cold, dark garage. I remember seeing no evidence that anyone had been sleeping on that oil-stained cement floor, under that roof so decrepit that it seemed only moss was holding it together. I remember leaving my sleeping bag with a note saying that it was from the congregation, so that -- if he did show up -- he would not feel guilty taking the sleeping bag. At the time, my act seemed shamefully inadequate, like a bandaid on an amputation.

I was shy about following up on my meager offering. But after several weeks, I peeked into the garage and saw that the sleeping bag was gone. There was no way of knowing if it had reached its desired recipient or had simply been removed by a zealous tidier.

I had completely forgotten about the sleeping bag until Jim mentioned it last week. "Reagan came to church this Sunday," Jim told me. "He gave his testimony." Reagan is now sober and has a job and a home. He came to thank the church and the AA group he attends there on weekdays for all their encouragement and support, for helping him turn his life around. "Reagan remembered the sleeping bag," Jim said. "He mentioned how much it meant to him and he thanked the congregation for it."

And that is God's gift. On November 30, my "cancer-versary," I was not dwelling on how harsh my life has been over the past year or how much I've lost. Rather, it was a day of rejoicing about how much has been gained. What a joy and privilege to minister to a child of God on His behalf! How wonderful that a tiny, forgotten act of kindness could have made a difference in someone's life. It's one, small, behind-the-scenes glimpse of how God is bringing about His kingdom on this earth.

When I consider what it means to be held in the palm of God's hand, I have always dwelt on His palm as a source of refuge and strength to people like me and Reagan. It is! But God's palm is even more than that: now I see that it's also where He holds His tools. The people in His palm are those God can use to accomplish all He sets out to do. I was God's tool in encouraging Reagan, and now he has been God's tool in encouraging me. And all without us ever even meeting! Knowing that God works this way in our fallen world, can you IMAGINE how amazing heaven will be?

The Pray and Play

I wrote the below reflection in response to a sermon at my church last week about how Christians are called to profound and meaningful fellowship with each other. The sermon was based on Hebrews 10:24-25,

And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another—and all the more as you see the Day approaching.

The Pray and Play

It was Carolyn’s idea.

No wait, she would never agree with that. Carolyn would be the first to say it was the Holy Spirit’s idea. But, as a willing vessel of the Holy Spirit, Carolyn invited Jane and me into her home for prayer starting one and a half years ago. We live close enough together that we could walk to each other’s houses. Jane would probably be the first to point that out. One of her gifts is seeing the big picture of God’s provision in our lives, how He meets our needs again and again, even needs we didn’t know we had, like the need for a close-knit, close-by circle of praying friends.

We aren’t an official church group. We are just three women who worship at the same church on Sundays and pray at each other’s homes on Fridays. At the beginning, we were three-fifths devoted to praying and two-fifths devoted to playing. That’s because two of the five people meeting each week were preschoolers. The background music of our prayer was the chatter and laughter of two little girls. So we named our gathering The Pray and Play. Sometimes the Players would creep into the room where the Prayers were praying. They called it spying, but we called it a joy that our daughters could spy us in prayer. We want to raise children who see prayer and friendship and prayerful friendship as integral to life. And how beautiful that two generations of female friendships could meet under one roof to enjoy closeness with each other and with God.

Praying together gives our friendship extraordinary intimacy and authenticity. We share our raw emotions and inner battles. What a blessing to come before God together; to be held accountable, encouraged, and upheld; to share our burdens and our joys. What a privilege to be a prayer guardian of each other’s children and husbands, siblings and parents, of our church and the people of our church whose names God puts on our hearts. What a blessing to see evidence of God’s care unfolding over the days and months and years in each other’s lives. By checking in each week, we see the delightful ways God answers our prayers, and we rejoice to have been witnesses of His mighty works and constant care.

Many times these prayer friends have been used by God in my life – their arms were God’s arms when I needed a hug and their words were God’s words, often straight off the pages of the Bible, when I needed guidance or comfort. This was most evident during my experience this past year with cancer. By God’s grace, the surgeon’s phone call with the biopsy results came on a Friday afternoon at 1pm, just as we were about to pray. God’s timing is perfect. His beautiful servants provided the arms to hug me and then prostrated themselves before Him to plead on my behalf.

Jane sat beside me during my chemotherapy infusion. If you know Jane, you know that the very air around her is infused with a sense of peace. What better person to have at my side as the needles delivered cancer-killing toxins to my veins? Carolyn organized meals and childcare after my surgeries and during chemotherapy. She is one of those lovely people who never draws attention to herself as she performs quiet acts of kindness. I am blessed to be the recipient of their friendship and kindness! I am reminded of how much more God does for us.

I always leave our weekly prayer time with feelings of peace and strength that last for hours. If only I could discipline my flighty heart to such focused prayer each day! If only I could share this blessing with my Christian brothers and sisters. And that is why I wrote this. This prayer group is one of many ways to fulfill God’s call to radical and profound Christian fellowship. I pray that my fellow Christians will have the courage to invite others into their lives in this manner and that those they invite will have the courage to say yes.

Going Public

I haven't posted for weeks. I've been laying low, still in shock that I had the courage to "go public" with my fight against breast cancer and the spiritual/emotional journey it has been.

Here are the two ways I told my story publicly:

1. I wrote an article for Intervarsity's website The Well, a resource for women in graduate studies or professional careers. It was an honor to write this article, available at here. It was also a huge leap of faith to write for a public forum about my medical and spiritual struggles. It was especially public in my little world, because I shared the link on Facebook with many acquaintances who were not aware that I had cancer and with whom I have not shared deeply about my faith.

The best part about writing that article was not what I expected: the thrill of completing an assignment or being published. Rather, it was the moving responses I received by email. The article proved to be:

• an opportunity to address faith questions with one friend
• a journey shared with other Christian women dealing with their own anxieties
• a "call to faith", as one acquaintance wrote
• a chance to reconnect with people from my past on a deeper level

It was hard to air my vulnerabilities, but I was blessed by the experience!

Any Christian knows that God uses our vulnerabilities to draw us closer to Him. It's a lesson straight out of Christian Living 101. No one gets through life without a thorn in the flesh of some sort, conditions beyond our control such as medical problems, disability, emotional challenges, abuse, or poverty. When Paul pleaded with God to remove his unnamed thorn, God answered "My grace is sufficient for you, for my power is made perfect in weakness." (2 Corinthians 12:9). Our thorns remind us that we humans rely completely on our loving Heavenly Father every breath of the day, every step of the way.

But here I learned a equally beautiful lesson that builds on the first. We'll call in Christian Living 201. When I make myself vulnerable, God can use me to bless others and build my relationships with them. Airing my struggles publicly connected me to others in ways I could not have foreseen. How humbling to learn that my experience spoke to theirs.

2. That was the heavy-weight stuff; now for the light-weight story of sharing my experience publicly. I took part in a clinical trial for a post surgical product and was asked to submit a testimonial about my experience with the product. The company's photographer took my picture and *presto* I'm a spokesmodel. 
:)
They might use my photo, first name, age, and words in advertising material. Here's one of the photos:

Teeth & Hair: A Joyful Update

As follow up to my post last month about anticipation, here's a photo of my intrepid 6-year-old daughter who got what she has been waiting for. See that gap? Her loose tooth is finally out! Needless to say, she is ecstatic (and very brave for allowing her former kindergarten teacher to pull it out with a piece of dental floss today. Eww.).

I'm ecstatic too, not only because my daughter's wait is over but because mine is, too. I HAVE HAIR!

Now, before we all get too crazy, let me just say that it's just a tiny, fuzzy bit of new growth. But it's really, truly there! My husband even confirmed it. (He is one of those extremely honest people, so he said, "Of course, there are still some bare patches in the back..." The bald truth, n'est pas?)

No pictures yet, because it's hard to see without the right fuzz-friendly lighting.

I'm so happy! And this is another instance of God's great timing: I started taking the dreaded tamoxifen pills last Monday and noticed the new hair growth on Wednesday. Not only did I not immediately experience every documented tamoxifen side effect upon swallowing the pill but got good news (hair!) while expecting bad (menopause symptoms).

Lessons, Tamoxifen, and Hair (Oh My!)

Last Wednesday, something I’ve been dreading finally happened:  my tamoxifen prescription arrived in the mail. Here’s the play-by-play:

1:00pm, my son brings in the mail and tells me there’s a package with my name on it. 

1:03, I pick up the package, realize what it was (that suspicious pill noise), and nearly drop it. My heart drops, too, about an inch in my chest. I’ve been dreading the arrival of my menopause-in-a-bottle for months.

1:04-3:04, I leave the unopened package on the countertop. Over the next two hours, I glance at it suspiciously every time I pass it. 

3:04, I realize I need to get a grip and stop obsessing about the package. I tear it open to break its hold on me. 

3:05, I decide I don’t need to start taking the pills today just because they happened to arrive today. After all, my oncologist didn’t make it sound like a hurry (though he didn’t approve of my idea about waiting until September). I decide that reading the paperwork qualifies as progress toward taking the pills.

3:08, I realize that reading the paperwork was a mistake. “Hair loss” is listed as a common side effect of tamoxifen. Oh no! My heart drops into my stomach. I’ve been doing well at not obsessing about hair regrowth (despite two months and still nothing but glaring baldness). But now I wonder: will tamoxifen compromise my already questionable hair-growing ability? I wish I didn't care about this so much. It's downright embarrassing to start obsessing about hair again (and this long after my junior high years!).

3:09-3:35, Even bigger mistake: I do an internet search to determine just how common this common side effect is. Or whether it's beneficial to wait for hair growth before starting tamoxifen. These sounded like reasonable, perhaps even scientific, queries at the time. Search yields no answers, just chat groups in which people wonder if their hair loss is related to tamoxifen use. I feel worse instead of better.

3:36, Fervent prayer. I need hope! I need answers! I need hair!!! (Okay, want hair)

3:45, Calmer now. Once again, I have to accept that this is beyond my control. It’s in God’s hands, and I trust Him to help me cope with whatever my future holds.

7:30pm, Support group with the local YWCA and Young Survivors Coalition. Other women my age who have been taking tamoxifen for months or years put my fears to rest. They have beautiful heads of hair and beautiful words of hope. 

Hooray! Thank you, Lord!!

Apparently, I'm a slow learner. I can see that my Tamoxifen/Hair Loss Freak-Out serves as a test or progress report, reminding to me that I still have a long way to go toward trusting God with control over my whole life (ie, there's still lots to burnish on this Starry Sheen.) I'm grateful that, although I didn't pass the test with flying colors, comfort mercifully arrived the same day as the pills. God's timing is always great timing.

Teeth & Hair That Just Aren't There (Yet): A Lesson In Waiting

My daughter and I share many traits: we're built alike (okay, I'm taller), we have similar coloring, and we have the same smile. (We even have matching skirts. Thanks, Mom!) We both like animals and laughing and reading.

Lately, we've shared something else: impatience. But let's put a positive spin on it by calling it "eager anticipation".

Here are our similar situations:

My daughter is eagerly anticipating the loss of a baby tooth.
It's an important rite of passage among 6-year-olds, a sign you are growing up.
She has a barely-loose tooth.
She wiggles it several times a day.
Sometimes she asks me to check if it's any looser than it was yesterday.
Sometimes she wiggles it hard, hoping to loosen it manually.

I am eagerly anticipating the regrowth of my hair.
It's an important sign of healing, visual proof of restored health after chemotherapy.
My head is still sparsely covered with stubble that I never managed to completely shave during the trauma of my initial hair loss.
I check my head several times a day for evidence of new growth.
Sometimes I ask my husband to check if there's any new hair there that I just can't see myself.
Sometimes I even pull a stubbly piece hard, hoping to encourage its growth manually.

(I know, I know. It all sounds cute in a 6-year-old but obsessive in a grown-up.)

In both our cases, the process can't be rushed, no matter how badly we want it. We need to wait for the natural course to run. (Groan!) But, in both our cases, we have every reason to expect our desired outcome. I assure her that everyone loses their baby teeth eventually. It will happen.
I assure myself the same way. I only need to be patient. It really will happen.

But I know the truth: it probably really will happen. Teeth and hair are not sure things. My daughter's dentist and my oncologist want us to assume these eagerly anticipated events will happen because they are the expected outcomes. But anyone who has taken Biology 101 is aware that, when it comes to living creatures, there's an exception to almost every rule.

• For example, you learn that mammals, by definition, give birth to live young... and then you learn that the platypus is an egg-laying mammal. 
• The human heart is on the left side of the body... except in the 1/10,000 of the population who have situs inversus (mirror image arrangement of the internal organs). 

Likewise, if you prodded our dentist, he would probably slap you with a lawsuit for assault and battery but -- more to my point -- he would probably admit that, in rare instances, a person never loses their baby teeth. (Don't tell the 6-year-olds!) You know where this is going: I'm only one ill-advised google search away confirming my fear that some people never get their hair back after chemotherapy.

Even if there were a 99.5% chance that I will get my hair back, that wouldn't be not enough to completely reassure me. There would still that niggling little fear in the back of my mind, shaking its head tragically and whispering that I might be among those unfortunate 0.5%.  After all, I've beaten the odds (that is, been beaten by the odds) before: the risk of developing breast cancer at my age a mere 0.43%.

Isn't it funny that 99.5% assurance still wouldn't be enough? That we can feel overwhelmed by doubt and fear even when the odds are in our favor? It's sadly human to worry about the exceptions and rarities.

It reminds me, though, of what I can and should know with 100% certainty (Here it comes! If you've read this blog long enough, you know a spiritual lesson is about to be delivered...). I know with 100% certainty that God cares for me and will provide for me now and eternally.

Jesus' own words in Matthew 10:29-31,  

"Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father’s care. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows."

These days I just love the imagery of God knowing how many hairs are on my head. I may not see them, but He sees those microscopic hairs forming (or not forming?!) deep in my follicles. I imagine Him smiling every time another one breaks the surface, knowing how pleased I'll be when I finally see a nice crop sprouting. Hairy or not, I can have 100% confidence of God's care for me, even though I can't see how He will provide for me or when He will provide or what He will provide. I can't even see God! So where does this assurance come from? It's called faith, and it's a gift rather than something you need to conjure on your own.

Hebrews 11:1, Now faith is confidence in what we hope for and assurance about what we do not see.

Faith is confidence in what we hope for. And don't diss hope! Christian hope isn't just wispy wistfulness, like hoping you'll get a pony for Christmas or hoping it won't rain on Saturday. It's absolute 100% confidence. After all, these promises were made by God. And, if you can't believe God's promises, what can you believe? Seriously. Every creature and concept and chemical in this universe is temporal and finite, therefore, not 100% eternally reliable. Your body, the person you love most, the pursuit of happiness, Social Security, the United Nations, the ozone layer, our sun, nitrogen atoms -- they ultimately all fail. But God? He is, was, and always will be. And His love for us is, was, and always will be!

Psalm 117:2, For great is His love toward us, and the faithfulness of the LORD endures forever.

I John 3:1, See what great love the Father has lavished on us, that we should be called children of God! And that is what we are!

 100% assurance. It's better than hair.




P.S. Here are a few more irrational hair fears so you can laugh with me:

• Irrational fear #37: As infants, my children wore off sizable swathes of their fine baby hair by constantly turning their heads from side to side while lying on their backs. Of course, I think about this as I toss and turn at night, forced to sleep on my back while recovering from reconstructive surgery.
• Irrational fear #64: While inspecting my stubbly leftover hairs, I notice that mainly gray ones survived the chemo (tenacious little fiends!). Will natural selection (survival of the fittest) play out on my scalp, leaving me prematurely gray? Or could the gray stubble have such a strong head start that they will choke out regular hairs, like weeds in a vegetable garden? Does worrying about gray hairs cause gray hair?

Reconstruction and Tamoxifen-Induced Super Powers

Over the next few days as I recover from the reconstructive surgery, I won't be able to drive or lift more than 5 lbs. I also can't raise my arms over my head, which has caused a few funny situations. Case in point: I was literally trapped in a sports bra this morning after my walk. A sports bra, of all things! It may as well have been a straightjacket for all my helpless struggling. Can you imagine the phone conversation if I had needed to call 911?

Despite some pain and inconvenience, it's a relief to have another big step behind me. Next week begins yet another big step: a 5-year stint of tamoxifen. The good news is that tamoxifen is formulated as a pill to be taken daily. Hooray for no more needles! More good news is that tamoxifen has been prescribed for decades, so its benefits and side effects are well-known. The benefits far outweigh the side effects in most patients. The not-so-good news is that this anti-estrogen drug is associated with several rare but potentially serious side effects (higher risk of uterine cancer, blood clots, and cataracts) and -- sigh -- causes menopause-like symptoms in most women.

Yes, menopause. So I'm going to be ushered a decade early into the womanly joys of hot flashes, among other physiological phenomena associated with estrogen loss.

Hot flashes. Let's think about this. The name sounds exciting. Hot flashes! Doesn't it sound like a powerful natural phenomenon, like dry lightning? Or a razzle-dazzle chemical reaction, like the explosive flash bulbs used in the 1930s by newspapermen photographing fabulous movie stars on the red carpet?


Actually, "hot flash" sounds to me like a nifty super power for middle-aged Wonder Woman. It would make a great addition to her line-up of superhuman abilities and amazing tools, like tremendous strength, ability to communicate with animals, invisible jet, Projectile Bracelets, and the Lasso of Truth. These are no match for ice-wielding super-villains like Mr. Freeze (pictured below).
But one hot flash (ZAP!), and he's thawed for good.


[Here's an illustration of Wonder Woman. Perhaps the sparkles represent a hot flash she is mustering to thaw the dastardly deeds of some arch-enemy? 
Hmm, Wonder Woman also appears to have undergone some reconstruction of her own, though her plastic surgeon had more, um, grandiose aspirations than mine. Or does the gold lamé bustiere have some superpowers of its own?] 

Meanwhile, back to our story...

 Mr. Freeze: Your powers are no match for me, Wonder Woman! My cold gun will freeze the entire city once and for all. Bwa-ha-ha!

Wonder Woman: [coolly] You underestimate me, Mr. Freeze. You haven't yet witnessed the power of my... Hot Flash!

[ZAP!]

Mr. Freeze: I'm melting! NOOooooo.... [voice fades away as he evaporates into a fine mist]

Wonder Woman: [muttering to herself as she wipes her forehead on a Projectile Bracelet] Man, it's hot in here. If only I were wearing more clothing. Then I'd have something to take off until this hot flash passes. 

See what I mean? Now that's the kind of hero a girl needs when she's stuck in a sports bra.
Hey, maybe middle-aged Wonder Woman could also fight evil with some other "tools" in her menopausal arsenal, like mood swings and irritability:

Mr. Freeze: Your powers are no match for me, Wonder Woman! My cold gun will freeze the entire city once and for all. Bwa-ha-ha!

Wonder Woman: [pulling off her Projectile Bracelets and throwing them down in irritation] That does it. I can't stand this any longer. I'm retiring my Bracelets and getting on with my life. [sobbing] Why do I put up with you bozos? You've totally ruined my life. All I ever wanted was to lead a marching band in my smart little sparkly leotard and boots, and now I'm too old to be picked as a drum majorette. It's so unfair! [pauses, then laughs] Actually, Mr. Freeze, would you mind freezing the city, just a teeny bit? This little number would make a great figure-skating costume!

Mr. Freeze: [confusedly scratching the helmet of his cryogenic suit with his cryogenic glove] I don't know what you are up to, Wonder Woman, but I'm not falling for it. I'm getting out of here before I fall into whatever emotional trap you appear to be laying for me.

And there you have it: hot flashes as a secret super power. Now I can hardly wait!

Under Reconstruction

My reconstructive surgery took place this past Monday. All went well. The surgery was short, and the bulkiest of the bandages came off today. Recovery is well underway, thanks to pain meds and lots of assistance from my husband, my sister visiting from NYC, and friends Genna and Carolyn. It worked out beautifully that my sister and her daughter could visit and that their visit coincided with Vacation Bible School, which is 9am to 5pm at our church. With the surgery at the beginning of the week, I've had lots of recovery time and my sister has had lots of work time, while our kids are happily occupied during the day and worn out at night.

It's interesting to realize that, after 40 years of good health, I've had three surgeries in seven months. This time, I knew what to expect and had little fear, which is remarkable when I remember my dread before the other two surgeries. Third time's a charm? Or we could attribute my lack of dread to my now vast experience in the surgical ward and to the more positive nature of this procedure: reconstruction rather than deconstruction. Either way, I'm just glad to be one step farther along on the road to recovery.
 

What a Trip!

Here's a picture of me (and my wig!) on vacation in Grand Teton National Park last month. Now if that inappropriately-named mountain range isn't an appropriate photo opp location for a breast cancer survivor, I don't know what is! (If you don't know what I'm talking about, do a quick internet search on the Tetons to learn how they were named.)

Our trip to Mexico in February and our trip to Wyoming in June were perfect bookends to the most difficult part of my treatment: the surgery and chemotherapy. That "bookending" was an unexpected blessing, since we planned both vacations before my diagnosis. The sunny, beachy Mexico trip helped our family relax between diagnosis and treatment. It was a much needed break from all the difficult decisions and endless doctor appointments. The Wyoming trip was much more than something to anticipate on bad chemo days. It helped put the worst behind us with a new location, a little adventure, and a chance to try out my returning energy on the hiking trails.

This winter, the mountains around Jackson Hole, Wyoming (which includes the Tetons), had a record snowfall: more than 700 inches. Can you imagine? That's more than 58 feet of snow! During our visit, there was still plenty of snow. This made some of the hikes challenging but had advantages too. I think we saw more animals, including newborn baby animals, than most people see during park visits. Perhaps more animals came down to feed in the Jackson Hole valley, since the higher elevations are still under many feet of snow, while the valley was uncharacteristically lush and green. The rivers, lakes, and mountain waterfalls were also filled to capacity from the melting snow, which added to their beauty.

I mention this because I can relate to the lavish springtime experienced by the valley this year. I feel as if I've been through a harsh winter and am now ready for a massive spring thaw and a new lease on life. (Hey, it's a cheap and cheesy analogy, but it works!) I am blessed with a chance to go on with my life, unlike many other cancer patients before me. As I've written previously, this experience has given me a renewed appreciation for normal, everyday life and its gentle pleasures and comforts. So I won't just go on with life; I'll cherish it. In some respects, this is also a new beginning, because I am changed. Some physical changes were deleterious, but I also emerge emotionally and spiritually stronger. I have passed through a challenge I could not have imagined enduring.

A valley is also an ideal place to admire the grandeur of mountains. As we hiked and drove through Jackson Hole, our eyes were drawn to the beauty and majesty of the Tetons. I lifted up my eyes to these hills and remembered where my help comes from (Psalm 121.) It was a reminder that I did not endure this cancer experience on my own, even for one moment over the past eight months. Rather, this experience has given me certain proof of the power and presence of my source of refuge and strength (Psalm 46). I know exactly where to turn when I feel scared or powerless.

How about you?

Done! (Done?)

I've had my last chemotherapy treatment. I've re-gained my energy and gotten past the worst of the side effects (still have low immunity, a sore mouth, and a racing heartbeat that keeps me awake -- a galloping 90 beats per minute compared to my usual 70).

My question is: when do I celebrate?

• The day of my last chemo? (oops, missed it; wasn't feeling well)
• Today, when I'm finally starting to feel better after my last round?
• In two weeks when I would be due for another round, if I weren't finished? 
• After my final surgery? 
• When I get my hair back? 
• When I'm finished with the 5 years of tamoxifen treatment that still lie ahead? 
• When I'm ten years cancer-free? (God willing!)

In my last post, I joked about having a Final Exam week. In truth, that's a bad analogy. After a final exam, you are done. You get your grade and move on to something new. But, with cancer, there's no graduation ceremony or cap to throw in the air (though it might be fun to throw a big handful of colorful scarves and a really nice wig in the air...). Ironically, I am scheduled for a mammogram tomorrow -- the first in perhaps a lifetime of 6-month check-ups. It's a reminder that I'll never really be done and that cancer recurrence is a possibility I'll face for the rest of my life.

At first thought, it's enough to damper any celebration.

But, on second thought, there's plenty to celebrate. One of my key lessons through all this has been the beauty of "normal". Now I celebrate the normal day: a day when I have the energy and health to go about a daily routine. I can accomplish my work and enjoy my children and husband. I am content. This may sound dull and unambitious (What?! Am I not, after all, going to cure cancer and write the Great American novel? Shocking change of plans). Nevertheless, this attitude concurs with the wisdom of Ecclesiastes. The author, an old man (possibly King Solomon), takes stock of his varied life experiences -- pursuing wisdom and pleasure and riches and advancement -- and realizes that "...there is nothing better for men than to be happy and do good while they live. That everyone may eat and drink, and find satisfaction in all his toil -- this is the gift of God." (Ec.3:12-13)
We are to be grateful for the life -- the normal, everyday life -- we have been given. [There now, I'm "only" 40 years old and have discovered the wisdom of Solomon. Tee hee! (Oops, Solomon would never say "tee hee". There's probably some Proverb about the folly of tee-heeing.)]

Part of living a life of celebrating normal is not worrying. Again, this is Biblical. God tells us over and over again not to be anxious. Some famous examples:

• I Peter 5:7, Cast all your anxiety on Him because He cares for you.
• Philippians 4:6, Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 
• Matthew 6: 25-27, Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?  Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life?

Easier said than done? You bet! Worrying has always been part of my normal. But I am working hard to throw off my anxiety and make trust an important part of my normal.

Anxiety is a funny thing. We hoard up worries the way we hoard money and (in my case) canned goods. In some eras and cultures, people live hand-to-mouth and rely on each growing season to make it another year. I'm grateful not to live in a culture like that, yet I realize we've lost their perspective  -- our eyes no longer look to God to provide. We've lost our ability to trust Him for daily needs and instead borrow trouble ahead of schedule, focusing on the adequacies and inadequacies of our insurance policies and savings accounts. We have so much less to worry about but worry about so much more! Instead of our eyes looking to God for daily bread, our eyes look to Fox News for new and interesting anxieties beyond our daily bread: kidnappings, random violence, obscure medical anomalies, aberrant weather patterns, alleged alien abductions. Suddenly, we're a mess, worrying about our health and safety. How can we possibly feel safe?

The answer is simple and yet one of the hardest things you'll ever do. We can do exactly what people in hand-to-mouth situations do: trust in the Lord with all your heart. Why does God tell us again and again in the Bible not to worry? Because, if you believe in Him, nothing bad will happen? No, the world is fallen; bad does and will happen. Trust in the Lord because He will give you the grace to cope with this fallen world, no matter what happens. Do not worry about what the future holds -- that's borrowing trouble. You don't know what lies there, and worrying about it will not do any good. You can only know that God, in His loving care, will hold you in the palm of His hand and will give you the perfect amount of grace in every situation.

I am proof of this.

At tomorrow's mammogram, I might be flooded by bad memories of my last experience with cancer diagnostics. But I will also remember that God gave me sufficient grace to get through my cancer ordeal, and He will give me the grace to face whatever lies ahead.  This is something to celebrate. My daily prayer will be for grace and for the faith to put my trust completely in God, whether my day will be a beautiful normal or will hold something unexpected.

I Didn't Know There'd Be A Test...

My last infusion was this past Wednesday. Hallelujah! I don't feel done though, since I'm still recovering from the ill effects. But more on that later. My objective today is to report on last week. Apparently, it was Finals Week. I was sorely tested.  And I'm not kidding about the "sorely".

Background: If you who know me well, you know that I'm a fainter. I don't deal well with injury, especially if it involves blood. The sight, or even thought, makes me light-headed and, before you know it, I've passed out. It's been a source of tremendous shame and humiliation since junior high. I've managed to faint when injured (I'm leary of contact sports), when hearing of someone else getting injured (I'm leary of many topics of conversation), when seeing a movie in which someone is injured (I'm leary of anything rated R for violence), when reading about someone getting injured (and that was a work of fiction!), when experimenting with animals or hearing about experiments involving animals in science class (aren't you glad you didn't sit next to me in high school or college labs?), and when hearing a lecture involving blood or injury (aren't you glad you didn't sit next to me in medical school??). You can imagine how much I feared the surgeries I've had this year. And you can imagine the trepidation with which I face my children's screams. As I run to identify the screamer and the reason for the scream (usually sibling frustrations), my first thought is always, "Oh no, what if someone's bleeding?" Fortunately, we've only had one bleeding incident, and a guest in our house at the time took control.

All that to explain why last week felt like Finals Week: I had two bloody injury incidents.

Episode #1. Camping with friends in Middle-of-Nowhere, Pennsylvania, over Memorial Day weekend. We're on a hike, and the kids stop to play in a slippery, rushing stream two miles from any roads. I wisely sit on a rock and watch. But then -- oh no! -- a kid starts bleeding! She's got a bloody knee and she needs to reach her parents. Do I wisely call her parents? No, there is blood, so I panic. I trek through the slippery, rushing stream to her aid and, in my rush to guide her footing, I stop paying attention to my own footing and fall and split my chin open on a slippery rock. Now I'm sitting in the stream in a daze, trying not to faint. Fortunately, the water is very cold, which helps. Double fortunately, my husband has his wits about him and tells me to hold my chin tight. This gives me something to do and stops the blood. (Whew!) We hike two miles over rough terrain, then drive 45 minutes to Middle-of-Nowhere, PA, hospital. The whole time I'm aware that I'll need stitches. I'm terrified -- even the thought of stitches is enough to make me pass out.
But I made it! Thank God, I did not pass out, even during the stitching.
Maybe this cancer stuff is making a Tough Cookie of me? But my final exam week isn't over...

Episode #2. Infusion day arrives, and the nurse can't seem to hit the vein right. This has always been a big fear of mine. But my fears have seemed ill-founded, since the nurses have always got it right the first time, after which I sigh with relief, cover the site of entry so I can't see it, and all is well.
Not this time. After the first one, which hurts like billy-o (whatever that means), she says, "Oh no. Don't look. It's blowing up." Seriously, NEVER say that to a fainter. The hurting was bad enough; the commentary was one hundred times worse. But, through grace, I don't faint. Even though I know she needs to try again.
The second time (now I'm very tense), she choses a strange place mid-arm. I don't like strange places. It makes me feel faint. But she's doing her best, so I try to relax. She's a professional. My job is just to sit still and be a good patient. The second try doesn't "blow up", but it hurts again (not quite billy-o this time; maybe billy-h?). She sighs and says she had better try again.
"Are you sure?" I ask. "I really don't mind if it hurts, as long as it's working and doesn't--" (I can't get myself to say "blow up"; might pass out).
No, she insists that this shouldn't hurt and so she had better try again. ("ARGH! Trying again hurts!" I want to yell. But I'm trying to be a good patient so that, if I faint, she'll bring me juice and call my husband.)
Third try is back up near first try. I make the mistake of looking at my arm. It's black and blue and really gross. I start praying like billy-o. Or maybe like billy-g: Billy Graham. Not sure I can make that claim, though I suppose one could argue that my prayers are as valid as his.
Whew! Third time's a charm. It works, and I didn't faint.

So there you have it: I passed my Finals. And that's a big deal to me. I've never had stitches before and have fainted from much less traumatic blood draws. I know this doesn't mean I'm cured of fainting, but it gives me a big boost of confidence.
:)

Camping Thoughts

As we prepare for our annual Memorial Day camping trip, I’ve been trying to think of good things about camping as a cancer patient. There are not-so-good things to think about, like my wig being flammable (now that would make a memorable Memorial Day campfire experience) and mastectomy swimwear (definitely not cute). And, with hot weather expected, I’m wondering what one (one being bald) wears on one’s head when one is swimming. Maybe I’ll get an awesome swimming cap with big plastic flowers on it:  

(Yes! You really can own one of these! Just $14.99 at http://www.headcovers.com/1063/multi-colored-petal-swim-cap-in-brights/. Buy them for your friends and start your own synchronized swimming club!)

(Retro swim caps! My fave is the one that looks as if it were covered with dryer lint.)

Anyway, here are some good things I thought of (not including awesome swim caps):

Top 5 Good Things about Camping As a Cancer Patient

5. Far, far away from the infusion room

4. License to claim the comfiest camp chair (if there is such a thing)

3. Campground shower costs 25 cents per 5 minutes hot water. Without hair to shampoo and condition or shave off my legs, it will be the first time I can complete a shower in one quarter’s worth of hot water

2. No hair = no places for ticks to hide

1. Cancer survivors can eat as many s’mores as they want

Sew LOVED!

I hardly know where to start with this post, except to say that I am blessed with overwhelmingly wonderful friends and family! Genna, a dear friend and talented quilter, held a quilting bee for me last Saturday. She had been working for months selecting the fabrics and design, organizing the sewing of the quilt squares by different people (including my mom, sisters, and grandmother in different states), and piecing together the final product as the squares were returned to her.

This weekend, my sister Liesl and friends from church and school and the neighborhood came together to stitch on the nearly completed quilt. It was a joyful time, with good food (cookies! cupcakes! chocolate cake! chocolate peanut butter cups!!), good conversation, good laughs, and good sewing (and some not-so-good sewing I contributed to keep my hands off the rest of the cupcakes). Here's a photo of the bee participants holding the almost-final product:

Such wonderful people! Such a wonderful quilt!

The quilting bee and the quilt itself are beautiful visual reminders of the good that has been manifested in this whole cancer experience. Yes, you heard me right: good can come from cancer. (But don't ask me to explain this again a few days after my next chemo infusion when I'm feeling awful and will tell you there's nothing good about anything. Ever.)

The vibrant and beautiful fabrics and unique squares remind me of the many different people in my life -- whether or not they participated in this project -- who love me and have demonstrated their care. These vibrant and beautiful people are as unique as the fabrics and squares on the quilt. They differ in personality, in how they know me, in how they show their love (hugs, childcare, letters, phone calls, meals, rides, emails, errands, book and movie loans, support, encouragement, prayers). Each person is special to me on their own, just as each fabric or square on the quilt is wonderful on its own.

But then you see the quilt in its entirety, the result of stitching together all those fabrics and squares. And it's breathtaking! All those people and all those ways of showing love form a great, new representation: a blanket of comfort and peace. All those beautiful colors and patterns positioned beside one another become something even more vibrant: a palette of pure joyfulness.

And that, dear friends, is the good that has come from this experience. Never before have I been the recipient of such an outpouring of love. Never before have I experienced the comfort of having so many people rally around me to form a seamless blanketing of support and encouragement. It's humbling and awe-inspiring and an experience I will never forget. That's how God works. Our arms give His hugs, our mouths speak His words, our hands give His care; all together we and our actions form something greater than any one of us on our own, something closer to the wholeness of God we will know in heaven. I begin to see why the Bible calls the global church "the body of Christ" -- the whole is a closer representation of God's all-encompassing love than any one person can be to another. I am reminded that our small individual roles are beautiful on their own but are also part of something great and even more beautiful.

Genna knew exactly what this quilt represented from the project's inception. (And she, a literature major and wise Christian thinker, could certainly explain it more beautifully and clearly than I have tried to do here!) You can see below that her objective all along was to remind me that I am loved. On the back of the quilt, she quilted the word "LOVED" to remind me that I am loved by friends and family and loved by God. And, as with God's love, I humbly accept in grace, knowing that I did nothing to deserve this amazing gift. I am loved!

Slogged Through Again

I'm through the worst of Round #3. I wish I could say it gets easier, but it doesn't. I still felt sick and disheartened for the full five days, possibly worse than the last round as my body has fewer reserves.

I also wish I could say I was a trooper this time. But plenty of complaining and groaning was heard in our house this weekend. Some of it was the usual sibling bickerings and complaints about boredom or having to clean up after themselves, but most of it was mine.

I am very thankful for a non-complaining, non-groaning husband who spent his weekend doing double-duty on the kid care plus meal preparation plus yardwork plus everything else that happens around here on a typical weekend. He's the trooper!

And now I hope to enjoy the rest of the month of May without dwelling on June 1. Please pray that I have the physical and emotional strength to do this again in 16 days.

Halfway done!

As of today, my 12 weeks of chemotherapy are halfway done. WHEW! In fact, today and tomorrow are "bonus days" since the next infusion was moved from today to this coming Wednesday. Just think, right now I should be sitting in that chair hooked up to an i.v., as nurses hover nearby checking my progress and commenting on my choice of reading material (seriously!). Instead, I am home and normal* this morning. The day's plan includes a 3-mile jog, a sushi lunch rendezvous with my husband, and an afternoon prayer with my dear prayer buddies. What a gift compared to what should have been!

Sadly, my relief over the halfway point is still overshadowed by the dread of the next round. The symptoms may be temporary -- the extreme exhaustion and flu-like aches last about 5 days and then I'm back to normal* (I love normal*!) -- but it's still hard to feel side-lined from life and nearly useless in my home and family and world.

Last week I helped chaperone my daughter's kindergarten field trip to a nursing home where the children sang and presented handmade gifts to the residents. My post-chemo days of fatigue and feeling useless made the visit more poignant than it has in past years. While interacting with the residents -- all living in a nursing home, many confined to wheelchairs, some unable to speak or engage in a conversation, one curled up with a baby doll and seemingly unable to engage with anything else in her environment -- I considered what lies ahead for many of us who (God willing) will live our full life expectancy. We will reach a point in which we are sidelined from our brand of normal. We reach a point in which we no longer contribute in a way the world, and perhaps we ourselves, consider valuable. This could be a disturbing thought, but it's a reminder that our sense of value should not come from our performance on the world's stage, not from a sense of contributing or accomplishing or succeeding. Our value must come from our identity as children of God. That's the one lasting thing, when your body and mind give out, when you cannot do what you want to do: you are still loved, so loved, by God.

 *Well, normal except that I'm bald. That will never feel normal. Every time I look in my closet, there's this moment of shock when I see my wig sitting there. It's not a nice kind of shock, the oh-how-sweet-someone-got-me-a-lhasa-apso-puppy kind of shock. It's the yikes-someone's-been-scalped-in-my-closet kind. Shocking.
Incidentally, I learned yesterday that first grade boys find wigs and baldness very interesting. The boys in the Sunday school class I team-teach had so many questions when I showed up after many weeks' absence: "Are you really bald?" "Is that really a wig?" "Does it feel like real hair?" Of course, I obliged by letting them pet the lhasa apso on the head and by peeling a corner of it off my head to prove I'm really, honestly bald underneath it. It's nice to be appreciated by first grade boys. One of the most mischievous (and most curious about wigs) then spent the lesson cuddled up next to me, as if the whole wig thing made me very endearing.

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.

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.

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!

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.

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.

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!

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!

Blah

Three days after my first infusion, and I feel awful. Until now, I've managed a walk each morning and have done at least one productive thing before noon. But today my body aches in strange places and is so tired. I keep looking in the mirror, expecting my face to have turned green or something. Hopefully, this is the worst day of the chemotherapy cycle, and things will begin to look up again tomorrow. Meanwhile, I'm just lying low.

Infused with Peace

I just opened my email and was overwhelmed by kind notes sent yesterday, before and during my chemotherapy. THANKS! Your prayers did powerful things: despite my needle phobia and toxin phobia, everything went smoothly and was uneventful. I felt an unexpected peace.

Jane drove me to the clinic and stayed for the beginning (until I got sleepy from the Benadryl pumped in to prevent allergic reaction) -- she is a wonderfully calming presence. The nurses were kind and quick with needles. There were no scary sensations or pain. I just laid under my prayer shawl and listened to music for the 2.5 hours.

Even the days leading up to treatment were far more peace-filled than I would have anticipated, given my chemo-fears (and, yes, there is such thing as knowing too much; my medical writing career is a disadvantage in this situation). Now that I don't need radiation and have completed the surgery, I am motivated to just check off these 4 (now 3!!) infusions and get back to a normal life. The end is in sight!

I'm taking an unbelievable amount of medicine to counter side effects (and, of course, each of these has potential side effects), but so far, so good. The fatigue is likely to kick in tomorrow. So I'm going for a walk right now.

Many thanks to you all!

Update

Lots of doctor appointments this past week. It’s my new reality: days full of insurance calls, scheduling appointments, driving to Pennsylvania for appointments, etc. How do people work full time when they have cancer?? I am getting by with the help of my husband, mother (staying nearly a month), and all the friends who have been bringing meals and inviting our kids on playdates. THANKS! Also, thanks for all the nice cards and emails. I am encouraged! (And apologies to all those who were unable to leave a comment on this blog -- I'll try to figure out the problem.)

I have most of my energy back and have full use of my arm again. The surgeon is pleased with the healing. For those of you specifically praying for how I'll handle the physical results, I'm doing better than I expected, perhaps partly due to the recent practice of starting the reconstruction process at the time of the mastectomy.

I also met with a specialized physical therapist for tips on preventing lymphodema and for exercises to promote recovery. How does one prevent lymphodema? Unfortunately, it will require preventative measure for the rest of my life: avoiding any injury to my right arm (including sunburn and mosquito bites); never having blood draws or blood pressure taken from this arm; wearing a compression sleeve during air travel or at high altitude.

The lymphodema expert is also a cancer survivor who is my age. It was wonderful to talk to someone who has been through this recently and shares many concerns and challenges I face as a relatively young patient. She was full of encouragement and practical advice.

Yesterday I met with my oncologist, Dr. Richard Lee (brilliant doctor, family friend, and has an office 2 miles from our home; what a blessing since all other appointments are about 1 hour away!). We now have more details about the course of chemotherapy:

- I will start on Monday, March 28

- Treatment will be given in 4 infusions, with 3 weeks between them. This adds up to 12 weeks.

- Each infusion will be Cytoxan and Taxotere (as well as a "cocktail" of other required meds, like Benadryl to prevent allergic reaction, and an anti-nausea drug)

What does this mean? 

The pros are: (1) I will be finishing treatment before the kids start summer vacation. Hooray! Our long-awaited trip to Yellowstone National Park in June will hopefully still be permitted. (2) This regimen is much more appealing than the one originally considered: one that included adriamycin (another layer of toxicity, including potential heart damage; would require surgical insertion of a port since it's dangerous to infuse intravenously) and 8 infusions delivered every 2 weeks (16 weeks total). So, after considering the original regimen, I feel as if I'm getting off easy with a shorter, slightly less toxic regimen. Also, the adriamycin-containing regimen takes more than 4 hours to infuse, whereas mine will take only 2 hours: that means I can complete an infusion during my daughter's half-day kindergarten without needing further childcare arrangements.

The cons are all the side effects. The most visible will be hair loss. More later on this, but I can pretty much expect to lose my hair between April 7 and 12. The oncologist also explained to me the week-by-week cycle of some of the other side effects. I will likely experience exhaustion during the first week after each infusion. During the second week, I can expect my blood counts to fall low enough that I will be at high risk of infection. If the levels are severely low, I will be asked to alter my diet (eg, no raw vegetables or fruits) and avoid contact with people, including my own children. Any fever will land me in the hospital with an aggressive course of antibiotics. Please pray that my white blood cell counts remain sufficient! Nausea, a well-known side effect of chemotherapeutic drugs, is so well controlled by modern medicine that it only rarely bothers patients these days.