My friend Erin recently had her portrait made by Bill Bastas
(www.bastas.com), one of the best photographers in Austin. Between poses,
she found out Bill's wife died of cancer in April. He's currently working on
a book of Austin's breast cancer survivors. All proceeds will benefit
our local breast cancer organizations. So last week Erin took me to meet
Bill. I've attached my picture and essay for THE SMILE NEVER FADES.
Fortunately, Erin didn't take me to get my picture made until after two
generous Austinites gave me their blood. My hemoglobin is now back up to 10
g/dL, and the nurse said I'm pink again. Then she told me to quit eating so
much spinach. Because spinach is high in iron, I'd been eating two servings
a day to combat my anemia. Did you know vitamin K causes our blood to clot?
One cup of spinach has 1120% of the recommended daily intake of vitamin K.
Oops. No wonder I'm on blood thinners.
No, that was not a typo. 1120%!!!
"She can laugh at the days to come" (Proverbs 31:25).
Read the story as it happened. Starting with the first e-mail I sent to my family and friends, I've compiled my updates I wrote as the story unfolded. Take a few minutes to experience More Great as those who love me did.
My friend Erin recently had her portrait made by Bill Bastas
Tomorrow (Tuesday) I start the second stage of my chemo protocol. For the
first 12 weeks, I received two drugs once every three weeks. They made me
really sick. For these next 12 weeks, I'll receive a third drug every week.
Tomorrow I'll also start my 52 weeks of Herceptin, the wonder drug that only
works for those of us who have the HER2/NEU protein. I don't know how I'll
react to this new cocktail, but I've heard it's not as harsh as the first.
As a precaution, they'll load me up on Benadryl before they poison me
tomorrow. That should make me sleep through any other side effects.
I hope you get lots of chocolate for Valentine's Day. I'll be getting lots
"He gives to His beloved even in his sleep" (Psalm 127:2 NASB).
A few months ago, I opened my blinds to discover that fall had turned the leaves on the tree outside my bedroom red. Eventually the leaves turned yellow, and then a few storms swept them off their branches. Except one. Through four rounds of chemo, I stared at that yellow leaf from my cozy little bed. Once I checked to make sure no one had duct taped it on. Nope. Sheer perseverance on the part of the leaf.
Last Tuesday I had chemo round five. I didn't open my blinds until Thursday. It was a beautiful day, and I considered taking a picture of the leaf for you.
Noooooooo! The leaf had let go! How could that happen? It was supposed to inspire me for another 12 weeks. It was supposed to make a great story and a picture of perseverance. But instead. . . .
Had winter won?
The next four days, I stared at that tree hoping I had only overlooked the yellow leaf. Today I stared out the window from my table at Hut's Hamburgers. And I found it. There it was: the lone leaf. It stood through this windy day on the tip of a tiny limb on 6th St. No duct tape. Winter hasn't won.
Good thing, 'cause I've got another round of chemo tomorrow.
"The grass withers and the flowers fall, but the word of our God stands forever" (Isaiah 40:8).
Hairs in my left eyebrow: 10
Hairs in my right eyebrow: 18
Chemo round 7 tomorrow (Tues).
"My flesh and my heart may fail, but God is the strength of my heart and my
portion forever" (Psalm 73:26).
To the person in Waco, or the person who knows a person in Waco, or the
person who drives through and uses the Waco mailbox,
"Yet this I call to mind and therefore I have hope: Because of the Lord's
great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness" (Lamentations 3:21-23).
"All I have needed Thy hand hath provided. Great is Thy faithfulness, Lord, unto me."
"Watch out for day three!" Before I started chemo, everyone told me the side
effects would hit on the third day. I was sick by the third hour. "Early
bloomer," the nurse called me. I could barely tolerate the bag of saline
they pumped into me on day two for my required rehydration routine. Sometime during day three I finally ate crackers or applesauce and drank Gatorade. Around day five the steroid kicked in, and I couldn't eat enough.
But this new cocktail is different. The anti-nausea meds that used to sit by
my clock are back in my crate of pill bottles. I used to sleep with a bin in
my bed. I've put that away now. And the prefilled cups of my salt-and-baking -soda gargle recipe no longer clutter my bathroom counter. I'm so nausea-free, I may even pack a lunch for future treatments. No, that's not a good idea. They're giving me Benadryl. I'm asleep in 10 minutes. The Benadryl works so well, sometimes the electronic cuff that checks my blood
pressure has to restart. It thinks I'm dead.
My toes and fingertips may actually be dead. They're orange, and I can
barely feel them. But I feel the aches in my bones, muscles, and joints. And
I have some other new side effects. My nose bleeds every morning. And I make
my bed four times a day. Exhaustion hits whenever and wherever it wants. I
fight it by walking that third-of-an-uphill mile to the mailbox. Sometimes I
consider bumming a ride home.
Other times I walk past the mailbox and on to the fitness center. Two weeks
ago I pedaled a quarter mile on the stationary bike. The computer said I
biked 6 mph. That's how fast I ran in the fourth grade. Last week I improved
to 7 mph and pedaled a half mile. It doesn't really matter though. No
matter how fast or how far I go, the computer always says, "GREAT WORKOUT!"
After the bike, I do 15 reps on the three weight machines--without weights.
Then I lie on the floor and flail my arms and legs while I hold my 1 lb
dumbells. I flail for five minutes with ten minutes of rest interspersed. It
takes me an hour to complete a 20-minute GREAT WORKOUT.
That 20 minutes includes walking my bald head back down the hill. I won't be
doing that much longer though. My hair's growing proportionately to my
biking ability. This week I doubled my distance and my fuzz. If you plan to
rub my bald head, you'd better hurry.
Chemo round 10 is next Monday, March 19. After that, only 46 Mondays
"Surely God is my help; the Lord is the one who sustains me" (Psalm 54:4).
"I love you, O Lord, my strength" (Psalm 18:1).
Things that made me smile recently:
1. The tree outside my window budded and bloomed last week. Winter is over.
2. I received my first bill from the hospital: 43 cents. They paid first
class postage to send me that.
3. Two girls from my church took me to see my friend Preston and the Team
Impact guys (www.team-impact.com). I've attached some pictures. The group
from left to right is Big Barry Haynes (Mr. Mississippi Bodybuilding
Champion), Rough You Up Rebecca, Eat You Alive Emily, Big Ton Alton, Massive
Melody (who's the same size as Big Barry's arm), and Metal Marc. We were
photographed by my buddy Bench Preston. Eat You Alive Emily posted more
pictures and videos along with the whole story on her blog
(www.francygirl.blogspot.com; March 24).
Chemo round 11 is tomorrow (Mon). Maybe I can smile through that too.
"A cheerful heart is good medicine" (Proverbs 17:22).
12 mph! That's my top speed on the stationary bike. I can't go farther than
half a mile at that speed, but that's how fast I biked a full mile a year
ago. I'm amazed at how quickly I can pedal to "Billy Jean" and how I can
forget to stop pedaling to "How Great Is Our God." But some days I'm barely
pedaling at all. When I checked the heart rate chart a few days ago, I
realized I had biked the GREAT WORKOUT of a 63-year-old (no offense, Uncle
Danny). That's what happens when I don't get steroids.
I haven't had steroids lately because chemo man changed my cocktail again.
I've lost so much feeling in my fingers that I'm dropping things (Mr.
Downstairs can't be happy about that). I've lost so much feeling in my toes
that I'm often wrapping them in Band-Aids. Chemo man doesn't want to cause
permanent nerve damage, so he cancelled my last three weeks of Taxol, the
drug that causes this side effect.
Because he's not giving me any more Taxol, he dropped the steroid and
tripled my Herceptin. Bad idea. It was like having the flu, strep throat
and bronchitis all at once. My lungs turned to stone, and my throat hurt
from my ears down to my chest. Once that went away, I developed
I've-got-a-knot-in-my-esophagus, it-hurts-to-eat, I-can't-sleep acid reflux.
It's better though, thanks to some great meds. Now I have chapped eyes. I've
rubbed off the top layer of skin from my eyelids and the area underneath my
eyes. I've rubbed a hole under my chin too. So at night I rub on the Vitamin
E. It helps.
This week I went in to get my blood clotting rate checked. I stopped to tell
Sarah, chemo man's nurse, how I had reacted to last week's Herceptin. I got
"You didn't tell anyone?"
"Didn't you call me the other day?"
"You still didn't tell me?"
Sarah called chemo man, who changed my schedule. The triple dose of
Herceptin meant I only needed to come in every three weeks. But I'm not
doing that again. I'll get Herceptin weekly for the first three weeks in
May. We may put me back on steroids to see if they help me tolerate a higher
dosage. Imagine how fast I'll pedal after a year of steroids.
"But the hair on [Samson's] head began to grow again after it had been
shaved" (Judges 16:22).
Melody's pork-n-beans: Bush's Baked Beans (maple syrup bacon cured flavor) loaded with brown sugar (I've never added too much) and Oscar Mayer Real Bacon Pieces. That's what I've craved for the last two months. Green leafies give me blood clots. Tomato sauce and citrus fruits irritate my acid reflux and enflamed esophagus. So what can I eat? Breakfast. And pork-n-beans. I went to a cookout recently. I brought the beans. I went to another cookout at the lake. I brought the beans. But I forgot the can opener. Huge disappointment. One day I walked into my church's office where I volunteer on Tuesdays and Thursdays. Right on the front desk, I found a big, red bow—stuck to a can of beans. I spent the rest of the day explaining, "When I open the pantry, I contemplate, 'What can I eat with pork-n-beans?'"
Whatever I eat, I have to remember to take my prescription pink stuff 30
minutes beforehand. I finished the first bottle and my acid reflux meds a
few weeks ago. The nurse practitioner and I decided I could try a week
without the meds. I felt so bad, chemo man had to give me a week off. So the pink stuff is back on my kitchen counter, and the acid reflux meds are right here next to my bed. Tums are in my purse.
Other than my digestive difficulties, I'm just tired (you too, huh?). I've
been especially sluggish this week. But I can still bike a 3-minute half
mile. Maybe I'm tired because I decided to start jogging. Chemo makes my
heart weaker and weaker—it's pumping at 56% right now. Jogging should make it stronger and stronger. So I jogged 3/10ths of a mile Tuesday morning. I haven't exercised since. To give me an incentive, I'm issuing an official challenge to my friend, fellow cancer survivor and pastor, Matt Carter. Yes, you, Matt. The man who hates running. The goal? A 10-minute mile. The prize? Fresh-squeezed orange juice at The Dominican Joe. Oh, wait. I can't have citrus fruits. I'll have a FroJoe creme. We on?
Stay tuned for the results. I hope you enjoy some pork-n-beans in the
"Taste and see that the Lord is good" (Psalm 34:8).
"My flesh and my heart may fail, but God is the strength of my heart and my
portion forever" (Psalm 73:26).
I hiked up the hill to the fitness center today. Veena was walking on a
treadmill as she watched THE BIGGEST LOSER. After I jogged a third of a
mile, she started talking to me about the show. I yanked out my earbuds and turned off my iPod. By the time I sat down on the leg extension machine, she had asked me the dreaded question, "Where do you work?" I sheepishly explained that I'm not working right now. "I'm doing chemo treatments, and this [exercising] is my work." We had the inevitable conversation about how prevalent cancer is these days. And, as usual, that conversation led to the one about the high percentage of breast cancer survivors. We talked about my hair and how long I've been in Austin. Finally we quit talking about me.
I asked if she worked during the day. She started her story. She recently
returned to work at the Spicewood Springs library. She had taken time off
because she lost a child. Seven weeks ago she gave birth. Her daughter died
an hour later. She sat in the window and cried as she talked about meeting
other mothers at the children's cemetery. One mother lost her nine-year-old
daughter to brain cancer. Veena was glad her daughter didn't have to suffer.
I'm meeting Veena at the fitness center again on Sunday at 9 AM. If you have time, will you please reply to this and tell Veena and her husband you're praying for them? I'd love to paste all your replies together and hand them to her. If you get this after Sunday, please reply anyway. I'll keep
compiling your notes and passing them on as they come. I know there's a
whole army praying for me. I'd love for Veena to know you're praying for
"Epaphrus, who is one of you and a servant of Christ Jesus, sends greetings.
He is always wrestling in prayer for you" (Colossians 4:12).
Last year on the day after Labor Day, I couldn't get out of bed. I was giving God an earful. He had told me to "jump out of the plane" and move to Austin. I jumped. I quit my job and moved down here. Six weeks later I accused God of holding me by my shoestrings while I plummeted to the earth. With my nose so close to the ground I could smell the grass, I yelled, "You'd better be God!"
He was. He is.
I finally got out of bed that day when someone called and offered me a job. I accepted. I opened my e-mail. Another job. I accepted. Two jobs in an hour! God hadn't let go. And as I drove down Hwy 183 that afternoon, Matt Redman sang "You Never Let Go" on my radio, just in case I hadn't gotten the message. All morning I had wallowed in fear of the future not knowing I was actually on the verge of something wonderful.
Of course I had to quit both of my jobs three weeks later when Wonderful showed up. Now most people I know don't spell "Wonderful" with a "c." Especially not c-a-n-c-e-r. But they may spell it c-h-u-r-c-h. Or maybe f-a-m-i-l-y and f-r-i-e-n-d-s. Many spell it l-o-v-e o-f C-h-r-i-s-t. I have known the love of Christ more in the past year than in any other. I've seen it in the food you put on my table, in my kitchen sink when you washed my hair--before it fell out in the shower you cleaned and the on carpet you vacuumed, in the driver's seat of your car, in the chair you pulled around in front of me so I wouldn't have to crane my neck to talk to you during chemo, on my bathroom rug when you kneeled next to me after chemo, on your sofa when our community group prayed for me, in my mailbox when you sent me cards--and lots and lots of money (who are you, anonymous, plain-white-envelope person?), and on the floor where your knees go down and my name goes up. I've felt it in hugs and well wishes in the hallways at church, at the retreat I crashed at Baylor, in your living room when I came over, in my living room when you came over. I've known it in your grace when I was moody, in your patience when I couldn't think straight, in your strength when I had none. I heard it when you called just to check on me, when you told me how you forward these emails, when you read my article to your Sunday School class and your whole church, when you told me I was gifted, when you told me I inspired you, when you told me I had a perfect head.
Today is the one-year anniversary of my cancer diagnosis. And when I look back at the last year, I have to celebrate. This has been the best year of my life.
The next year still holds five more months of chemo Mondays, two more surgeries, one giant thesis, and many other things I don't know about yet. What I do know is this: I'm on the verge of something wonderful. I can't wait to see how God spells it this year.
"This I know, that God is for me" (Psalm 56:9 NASB).
P.S. Veena, my friend whose daughter died, is doing great. She and her husband came over for breakfast the day you prayed for her. They are delightful. She thanked me for the prayers you emailed and said they were very encouraging (all 82 of them!). They encouraged me too. You guys are amazing. Thanks for sharing your heart with her.
Most of you know that my small group from my church is amazing. They provided me an instant support system here in Austin and showed me the extravagant love of Christ. Jocelin, one of my group leaders, has been especially supportive. She's famous for bringing me rotisserie chicken after my surgeries and sirloin during my blood transfusions. And she's famous for bringing me to chemo on Mondays.
Some of you know that Jocelin was diagnosed with breast cancer this summer. The day before her surgery, Paul, a member of our group, made a video of us for our church. He did an incredible job of helping us tell our story. People are constantly telling me how powerful this video is—people I know and people I meet at the radiology center and the bank. You can watch it here:
Thanks for being my extended network of support. Everyone needs friends like you.
"Be devoted to one another in brotherly love. Honor one another above yourselves. . . . Be joyful in hope, patient in affliction, faithful in prayer. Share with God's people who are in need. Practice hospitality. . . . Rejoice with those who rejoice; mourn with those who mourn" (Romans 12:10, 12-13, 15).
It's Monday and I didn't get chemo today. I'm taking a break for a few weeks. Last week I had my regularly scheduled MUGA--snappy name for a heart test. This test measures my ejection fraction (Ef), the ratio of blood going into my heart to blood coming out of it. Every three months, a nurse injects a radioactive dye into my arm before I take a ten-minute nap under a high-tech camera. In my February MUGA nap, I had an Ef of 61%. In my next two naps, I had an Ef of 54%. Last week I had an Ef of 49%. I don't know what a passing score is, but I failed my heart test. I'll take another one on November 29. If I pass it, I'll start chemo again in December. For now, I'm taking a lot of naps.
Thanks for sticking with me.
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever" (Psalm 73:26).
The fire alarm went off! Right in the middle of my heart test! Unsure if Blue Cross would pay for another retest, I didn't budge. The tech had left the radio on, so I lay perfectly still in the tube and listened to George Strait sing the "Christmas Cookies" song. Someone finally stuck his head in the door and assured me, "We're checking to see if it's a real fire. We'll come get you." Then I heard him tell the tech, "She has less than two minutes left. Let's let her finish." So I reminisced about all the false alarms we had when I taught high school. The best was when our administration, in its post 9/11 jitters, evacuated the whole school because a locker was ticking. It was a band metronome. Do bombs still tick? I'll have to ask Jack Bauer.
As soon as my two minutes were up, the tech yanked me out from under the camera and ripped all the monitors off of me. Ouch. I grabbed my bag and left, dodging wheelchairs and IV poles as I drove out of the garage. I'm so glad I wasn't in a hospital gown.
But I still failed. My heart is actually weaker than it was three weeks ago. My ejection fraction is now down to 43%. So I won't have any more chemo for the rest of this year. I'll have another heart test on January 7. Chemo man decided I won't make up all the doses I'm missing. He's hoping to resume treatments in January and then stop in February. Looks like I'll be done sooner than I thought.
And it looks like I'll have a chemo-free holiday. Hope yours is great too.
Some of you have asked how you can pray specifically for my heart. This is all I can come up with:
"So, as those who have been chosen of God, holy and beloved, put on a heart of compassion, kindness, humility, gentleness and patience; bearing with one another, and forgiving each other, whoever has a complaint against anyone; just as the Lord forgave you, so also should you. Beyond all these things put on love, which is the perfect bond of unity" (Colossians 3:12-14 NASB).
I haven't had a new year's resolution since 1994. I'm still working on that one. So when my friends asked about mine for this year, I had to come up with something quick. "Quit smoking," I decided. That'd be easy.
Charlotte piped up with a better one, "Melody's new year's resolution is to get off drugs." I accepted the challenge.
I had another MUGA scan (heart test) on January 7. My ejection fraction (output) had only risen one point in the last month. I failed again (44%). Chemo man has decided my risk of heart failure outweighs my risk of a cancer recurrence. I won't be getting anymore chemo. So tomorrow I'm going to see my surgeon and say good-bye to my port-a-bump. And because I'm losing my port, I no longer need to take blood thinners.
So with that, ladies and gentlemen, I am pleased to announce that I have already accomplished both of my new year's resolutions for the year. I'm Melody Raines, and I've been clean for eight days.
I met with a cardiologist last week. He decided not to prescribe anything for me. Anything he gave me would lower my blood pressure. I'm already touching the barely-alive zone (80's/50's), so no meds for me. I'll go back to see the heart doctor next Monday (January 28) for a stress test and an echo. And I'm meeting with a plastic surgeon on February 4. We'll see what happens after that.
Thanks for hanging in there with me for another year,
"Create in me a clean heart, O God, and renew a steadfast spirit within me" (Psalm 51:10 NASB).
I'm back on drugs again (I told you I had problems with New Year's resolutions). For the first time ever, I had to get prescription meds for my allergies. Cedar fever took me down. But steriods up my nose brought some relief. And I'm about to take more drugs. I'm going under the knife again. This time I'm starting the reconstructive process. My first surgery is Tuesday, March 25.
If you live in Austin, please hug gently.
"Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!" (2 Corinthians 5:17)
Some of you know that I was scheduled to have my last reconstructive surgery this Tuesday. My plastic surgeon called this afternoon and postponed the surgery because I have the shingles. Yes, the shingles. My mom calls them Job's boils. After they clear up we can reschedule the surgery.
The good news is my parents will arrive any minute. Now I can spend the week playing with them here in Austin. Should be lots of fun. But if you see me out and about, please don't hug me. It will hurt. And if you're pregnant or you've never had the chicken pox, don't even touch me. http://www.mayoclinic.com/health/shingles/DS00098/DSECTION=symptoms
Some of you also know that I had a polyp removed on Thursday. I'm doing well and should get the biopsy results on Tuesday.
Thanks for praying. And thanks to those of you who had already signed up to bring me meals.
Y'all are the best!
"Many are the plans in a man's heart, but it is the LORD's purpose that prevails" (Proverbs 19:21).
My doctor called today with the results from last week's biopsy: No cancer!
Thanks for praying!
I’ve recovered from the shingles and rescheduled my last reconstructive surgery. I’ll go in tomorrow (Tues). Today I’m working through my typical pre-op to-do list: laundry, bank, airport (Mom), pharmacy, phone calls, emails, bills, cleaning and anything else that will require arms or a brain for the next two weeks. Because tomorrow my arms and brain are going on vacation courtesy of Seton Hospital.
Surgery feels like overseas travel. You wear yourself out preparing for it. When the day finally comes, you willingly submit yourself to an agonizing flight that leaves you barely able to function the next day. It can take a week to recover. But you know the exhaustion, brain fog and discomfort are worth it, so you press through it. Eventually you find yourself in a new normal. And yeah, it’s worth it.
My Seton Hospital flight departs at 11 AM tomorrow. Thanks for praying.
“[God] doesn’t scrimp on his traveling companions. It’s smooth sailing all the way with God of the Angel Armies” (Psalm 84:11-12 The Message).
When I started taking seminary classes, I knew that with a full-time job and a long commute, it would take me ten years to graduate. But I figured I'd be ten years older anyway; I might as well be ten years older with a degree. Five years into this plan, I decided I needed to finish faster, because, by golly, God had a plan for me and I'd better get on with it. So I got a job with a more flexible schedule and finished my classes within the next two years. All I had to do now was write my thesis.
At that point, I moved to Austin, and life changed. Cancer became my teacher and taught me more about God than I could ever learn in seminary. In the middle of all the surgeries and chemo, many of you told me I should write a book about my life. My advisor agreed with you. He let me write my story for my thesis. I finished it this summer, and this Friday I'm graduating--half a year early.
You'd think that after 9½ years I'd know why I was getting this degree and how I planned to use it. I do have some plans, but none of them requires a master's degree in Communication. I'm helping LifeWay Christian Resources and the North American Mission Board do some research on working with immigrants. I'm doing some freelance editing, and I've enlisted some friends to help me edit my thesis so I can publish it next year. When I'm not working on any of those projects, I babysit, volunteer at my church's office, and, of all things, play hostess at a model home. What kind of degree do you need for that?
A few weeks ago, God did give me a specific directive on what He wanted me to do with my degree. "Trust Me," He said. Apparently that's a life-long job, a job I'm still learning how to do. But these last 9 ½ years have certainly helped prepare me. It sounds like God has a plan for me, so, by golly, I’d better get on with it. I hope to see you along the way.
“Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight” (Proverbs 3:5-6).