Sleeping beauty

I was chatting with my sweet grandmother-in-love the other day and she was curious where all the pics of her great-granddaughter went. Of course, she was joking but images of Alexa Hope have been elusive since my diagnosis. I’m so pathetic, I haven’t even posted her 3rd birthday pics and that happened in mid-March. So, I will definitely do my best to keep my family better updated on the ins and outs of our everyday lives with more images of the people who give me a reason to fight each and every day.

Of course, a great deal of my time over the past months has been horizontal. These are the perfect moments for me to capture images of Lil’ A – mostly because she isn’t moving and Mommy is still learning how to use her camera with a gimp right-hand. Other images are of Alexa sleeping (or pretending to sleep) throughout the many adventures of her day and/or road trips to MD Anderson. Don’t let her fool ya. She won’t take a nap for Mommy anymore. All the more reason to relish these rare moments of solitude when they do happen. I have to admit, there isn’t anything more priceless than staring at my “good and perfect” gift from the Father with a deep, deep sense of gratitude. Alexa Hope was the beautiful answer to our many prayers for a child. I’ll never grow weary of holding her in my arms and cherishing her precious life.

Enjoy Gigi . . . more image with A’s eyes open on the way!




I actually woke Chris up the first time I attempted this photo, so I told him to pretend he was sleeping – not too convincing, huh?

A surprise visitor

My dear friend, Melanie (aka Mels), surprised me with a visit this week. We first met in Beirut, Lebanon, where she was serving for eight months, and I spent the summer. Little did we know she would soon marry one of my friends here in Norman, and we’d become lifelong friends. She stood by my side when I married Chris, and since then, we have shared our highest highs and lowest lows together. Our friendship has spanned the globe, a few city blocks and now a few states. Thank you for coming to love on me, Mels! Thank you for sitting with me and just listening. It was medicine for my heart and soul. Let’s plan on reconnecting for an I-feel-so-good-I-don’t–have-cancer-anymore girls’ weekend.

Well, it’s been a awhile since I sat down to update you. On Thursday, I finished treatment #1 of round #4. For those of you who lifted me up, thank you so much (more on round #4 later). The week leading up to my treatment was rough. I decided to try out a narcotic my doc at MDA recommended all along but I was reluctant as they often give it to recovering heroine addicts. Yes, that sort of scared me. I have cancer but I’m not on heroine. However, it is recommended for dealing with long-term pain, and that is exactly what I’m living with when it comes to the nerve pain from the tumor in my right arm.

Long story short – when I tried out the drug for the week, the pain in my arm greatly decreased. I mean, it was awesome how little pain I felt and what I was enabled to do – things I hadn’t been able to do since my biopsy April 12 – like open a jar, turn a doorknob, cut an apple, write some notes. It was a beautiful thing. Unfortunately, the side effects of the drug were a doozie – dizziness, nausea and crazy fatigue. I mean, I felt like I was in a fog all day and that isn’t acceptable with a three-year-old who doesn’t nap. I would try to make a meal and break out in a sweat and the shakes thinking I would throw up at any moment. So, although, I slept much better that week, I couldn’t function during the day. I had to decide which I’d rather deal with, and I chose the latter.

So this past week, I stopped the narcotic. I began to feel normal during the day. I was able to take Alexa to a preschool playdate. I enrolled her in gymnastics, and two precious friends helped me clean my house (thank you so much Courtney & Melissa). We even took our adopted college students to The Melting Pot for a back-to-school dinner. I felt like I had my “live it up during your off week of chemo” life back; however, the pain also decided to join that small semblance of “regular” life. So, that is where I still stand at this moment. I am taking Hydrocodone to try and sleep again, and OTC pain meds to dull the tumor pain during the day.

As my tumor sent it’s constant reminder to me (through it’s dull, unrelenting ache or sharp, throbbing pains) that it doesn’t like what’s going on, I couldn’t help to fight discouragement, tears and just grieve. I am on my 4th round of chemo and as I look down at my arm, I see no sign of shrinkage. In fact, if you asked me yesterday what I thought, I was almost convinced the tumor had grown. The continual pain doesn’t ease my mind either. This pain is reminiscent of the pain I dealt with post-biopsy (when it grew 30%). and when my pain is like this, the ability to use my right hand becomes incredibly limited. It’s so easy to “go there” when you are hurting. My mind begins to wonder and my hope & my fight start to fade . . . Will this cancer ever go away? Will I ever have my right hand back? Will they have to amputate my arm? What about the cancer in the rest of my body? How long will I have to live on chemo? Is this the way God wants it to be – just waiting, wondering & hurting?

My oncologist told me Thursday he has a 70 yr-old patient who is also dealing with a metastatic sarcoma (meaning it has spread). Although it is a different type of sarcoma, my doc said he didn’t see much shrinkage of this man’s tumor until his 6th round. The patient is currently on his 9th round of chemo and the tumor continues to shrink. Although that gives me hope, it also reminds me just how long this potential road could be (nine rounds for me would be mid-December and I anticipate more). When you didn’t volunteer for the journey you were unexpectedly forced upon, the longer and more unknown the road becomes. It was just a hard day yesterday. One of many and many more, I suppose. I think it’s a package deal with cancer. And if you know someone who is “pie in the sky” about their cancer journey, please give me their name & address. Either they are on a quick, somewhat sure road to a cure or they are delusional. Either way, I’d love to talk with them.

All of that to say, I went to bed last night, heart heavy. I knew I needed a good dose of Truth. It was the only thing – correction - He was the only One who was and is going to get me through this journey, and I had felt utterly beaten up by Satan’s fiery darts. I had waded around enough in the lies, the what-ifs, the reality of what I’m up against. I never put on my shield of faith for the day, and I needed a touch from Him to remind me who’s really in control, who isn’t phased by statistics, who isn’t alarmed by rare cancers. God’s Word, prayer and music are three things that can really turn my heart and head around, so I engaged them all. Unfortunately, I wasn’t able to go to sleep until 3 am, but I was (ironically) restless in a “state of peace” looking to Him, trusting Him, resting in Him. I still hate (and will always hate) cancer, but I am thankful for these special moments when the Lord brings me to the end of my rope only to find He was right there all along waiting for me to come to Him and rest . . . in Him alone. In that, I experience His peace and can praise Him for who He is. In these moments, the circumstances that now consume my daily life seem smaller and less ominous, and it’s just me and Him.

These are a few of the snip-its that encouraged my heart . . .

“The Lord is righteous in all His ways and loving toward all He has made. The Lord is near to all who call on Him, to all who call on Him in Truth. He fulfills the desires of those who fear Him; He hears their cry and saves them. The Lord watches over all who love Him, but all the wicked He will destroy.”
Psalm 145:17-20

”Blessed is He whose help is the God of Jacob, whose hope is in the Lord his God, the Maker of Heaven and earth, the sea, and everything in them – the Lord, who remains faithful forever.” Psalm 146:5-6

Praise Him by Shane & Shane (If you can’t view these with your iPhone, I would encourage you listen to them on YouTube). Ty for this song, Mels!

Praise Him by Shane & Shane

Still, My Soul Be Still by Keith & Kristyn Getty (Ty Laura for sharing this beautiful and timely song with me.)

Still, My Soul Be Still by Keith & Kristyn Getty

This is a poem written by a sweet friend, Krista Stoller. Ty for continually sharing your gift of words with me!!

“He ransoms me unharmed from the battle raged against me . . .” Psalm 55:18 

There’s an enemy of my soul who would like to drag me down
But God can see how he works with me and God turns things around
What the enemy hopes will discourage me, God covers with His grace
And instead of despair, a moment of prayer – plants hope in discouragement’s place
So I’ll sing though the battle is raging for I know I’ll see the victory
All along there’s One mighty and strong who is fighting the battle for me
My life in my Savior resides – and no matter the battles that come
Through thick and thin there’s no One like Him – He who my help is from
The enemy’s tactics are weighty, but greater and stronger still
Are the mighty hands and sovereign plans that keep me in God’s will
the battle indeed is raging, but I’ve steadfast hope in the fight
I know I shall win because my hope is in – the God of all grace and all might!

Krista Stoller

PRAYER REQUESTS
-- Health protection. Alexa had a fever this week and now has a rattling cough and sore throat. Chris feels like he is getting a cold, and I feel like I’m fighting off a sinus infection. Please pray for health during these critical times of recovery.

-- Normalcy. We are praying for wisdom in how to make life as normal as possible (esp for Alexa) during the ups and downs of chemo (as it is indefinite part of our future).

-- Pain management. Pray I would continue to find meds that would help me manage pain during the day and at night. Or, if God saw fit to ease my pain without meds, I’m totally fine with that as well.

-- Healing. My new habit is to thank the Lord (in faith) for healing me every morning when I wake up. Pray I would be able to continue this attitude of trust and thanksgiving throughout the day – even when pain & the appearance of my tumor may cause doubts. I want to choose each day to trust in His healing from the tumor in my arm to my C7 vertebrae to any other place those nasty cancer cells are hiding. As Melanie equated my tumor to the Wicked Witch’s death in the Wizard of Oz. We must believe the tumor is sounding it’s death knell as it is being covered over with far more potent power than water – the prayers of many and God’s healing power. Amen!

Long hair = BIG love

Shortly after my diagnosis in early April, I had a few friends ask me if they could donate their hair to me for a wig. At the time, I was deeply honored but I was also overwhelmed and desperately hoping chemotherapy would not be in my treatment future. As you know now, that was a pipe dream and wigs are a part of my reality. So, I did some homework. I definitely wanted to use my friends’ hair if they offered it to me, but I wasn’t for sure about the difference between real hair and synthetic wigs.

The more I looked into real hair wigs and consulted with Cathy at Heads Above Salon at OU’s Cancer Center, I realized a synthetic hair wig would be the best option for me. (In case you wanted to know why – real hair wigs can be costly, take up to 6-8 weeks to make, are more delicate than synthetic wigs and are more labor intensive to care for. . . it is, after all, human hair.)

I felt so sad turning down perfectly good hair from my precious friends but the thought of ordering a real hair wig seemed liked a big hurdle when I was already facing a few others. Then, the thought occurred to me – why can’t they donate their hair in my honor and bless another woman facing cancer? After talking with Cathy at Heads Above, she recommended Pantene’s Beautiful Lengths program. Pantene’s program is designed specifically to provide real hair wigs to women fighting cancer. Beautiful indeed!! To learn more about how to donate to this tremendous cause, visit http://goo.gl/VwIFT6.

And so, I told my friends about the Pantene Beautiful Lengths program. I don’t know the outcome of two of my friends, but I do have evidence from two beautiful friends – Sydney & Debra. Both donated their hair and I am humbled by the love and sacrifice they showed me in their willingness to give me their hair, and then, give it to another incredibly deserving woman in the fight of her life.


Precious Sydney before (my sister’s best friend’s daughter)


Precious Sydney after. I love this cut Syd!! Can’t wait until I can share this hairdo with you again. Happy first day of school!! Love you!


8” of pure love

My cuz, Debra, preparing to lop off her beautiful locks on a recent trip to Argentina.

My beautiful cousin with her equally beautiful daughter, Sofia, and her stylist.

I feel like Debra said it best when I told her I was so sad I wouldn’t be using her hair donation . . .I’ve included what she wrote me in her reply. This is just a beautiful description of her heart and so many of those who have given to me in incredibly sacrificial ways during this unexpected journey.

“You know sometimes when God asks you to give something it is just as much for the giver as the receiver. Maybe God wants me to remember and pray for you more often. Maybe God wants me to appreciate my life more (as you do in the midst of a battle like you are in). Whatever it is, I'm sure that chopping my hair off was the right thing to do.”

I love you, Debra!! I’m thankful to be a recipient of the sacrificial heart I’ve seen you demonstrate throughout your life. It came as no surprise you would be the first person to offer your hair to me. No surprise at all.

If you have ridiculously long hair or if you want to grow it out for a wonderful cause, please look into Pantene’s Beautiful Lengths program and make a bald-headed woman, just like me, feel beautiful and hopeful again!

If there is no way your hair will ever be 8” long to donate, I will be providing another way you can give back in a coming post. Two words – Wig Out!

He gives strength beyond reason

I wanted to share the lyrics to a song one of my sister’s friends, Candi Hale, wrote and shared with me. It has ministered to my heart several times before but particularly this week when I have lacked physical strength, battled nerve pain in my arm & fought dizziness/nausea. It seems I just can’t turn the corner from my last round of chemo and it can be discouraging to want to accomplish the smallest tasks and find them overwhelming or exhausting. I suppose that’s why they call this “a fight” – it’s a physical, emotional & spiritual battle.

To add to this, Chris went to the ER at 4am today with severe pain in his gallbladder. Apparently, his gallstone decided to act up. He will do another ultrasound and consult with his doc to see if/when he’ll need his gallbladder removed. Poor Alexa – her parents are just the picture of health!! Regardless, we can rest in the Truth our Lord is our rock, our refuge, our strength, our hope. But don’t take my word for it, read these beautiful lyrics and be blessed by the tremendous reminders of who our God is.

Candi, thank you for sharing this beautiful song with me. The only thing that would be better is to hear you sing it with that unreal voice of yours! Promise me I’ll get to hear you sing it someday soon. I’d love to hear the tune so I can sing it on the days I need it most.

He Gives Strength Beyond Reason

Trust in the Lord, for He will give you rest.
Lift up your eyes, for He knows your circumstance.
Believe in Power, He gives strength beyond reason.
My God will supply all your needs.

He gives strength beyond reason
Power in weakness
Love in our sorrows
And Light in our darkness
He gives Grace to the humble and
Joy in despair
Healing in sickness
And Hope to the weary
My God will supply all your needs

Hope in the Lord, for He will give you peace.
Lift up your heart, for He knows your every need.
Believe in Power, He gives strength beyond reason
My God will supply all your needs.

I will serve the Lord
All the days of my life.
I will give Him praise
His name be Glorified.
My God will supply all your needs.
He gives Glory and Honor and Peace to all men
Salvation to sinners and Life with no end
My God will supply all your needs.
My God will supply all your needs.

Copyright Candi Hale 2013

One day at a time . . .

I realize an update from me has been a long time coming. I apologize for keeping you in suspense. There is much to say, but I have yet to put all of my thoughts into words. For now, they are just marinating inside. And so, this little (or not so little) update will do.

My cuz, Robin, surprised me at my last chemo treatment. It was a wonderful surprise! A friendly face on the oncology floor is always welcome. And then, if that weren’t enough, my sis dropped in as well. I felt like a bald-headed rockstar with all of the attention!!

I am currently recovering from my 3rd round of chemotherapy. A few weeks ago, I would’ve proudly staked this as my halfway point in the treatment. However, since our recent visit to MD Anderson, chemotherapy will be a part of my indefinite future – be it six, nine, twelve rounds (or longer). As long as it is working and I can handle the toxicity (as of today, I was doubting I could), “chemo’s the life for me.” As much dread as that brings me in the temporary, I am still hopeful because the chemo seems to be working and that has been our prayer all along - be it fun or not-so-much-fun – we want this cancer G-O-N-E. God will give me grace to walk through it.

I wouldn’t say I’m a planner but I do enjoy a game plan, some sort of expectation of what is to come. With this new direction in my treatment course, I can truly say I have to take life and all of its plans a day at a time. I realize this is exactly how the Lord intends it for all of us (cancer or not) in Matthew 6 and James 4. But I can also say, quite candidly, it is infinitely difficult. There is that very human part of me wanting to know when this will end especially when it seems unpleasant. (Of course, I desperately want to see the tumor in my arm shrinking away too and that hasn’t happened . . . yet.) So, easy or not, we’re staying the course.

Even after three rounds, there is unpredictability in how things will go and how I will feel. For example, round two went surprisingly well. Maybe I got a little too confident with how that went. Then, we realized last night (when I was feeling very similar to the way I felt the first go ‘round) that I had had one partial treatment in round 2 and that was probably accounting for why I was feeling so well with those treatments. Now, at the end of round 3 with two full treatments, we shouldn’t be surprised I felt like death warmed over most of the weekend and today.

It is just a crazy, crazy sensation. One moment feeling as good as one can on chemo, and the next - your skin aches to the touch, your muscles are incredibly sore, your tastebuds ravaged by poison, your energy absolutely vanished, your heart racing, your lungs fighting for a deep breath and your temperature spiking and dropping like an amusement park ride. It’s just crazy to feel like your body is warring against itself to survive and you are an innocent stand-by praying there is a turning point to feel normal again.

On the low days, that’s how it is for me. It truly is moment-by-moment dependence and hope in God that this “season”of treatment really is working and worth it. My prayer now is that I’m coming out of the "low point” and beginning to see daylight again. Regardless, I am thankful for narcotics, for Miralax, for Downton Abbey, for laughter, for God’s Word and for the prayers of so many helping me through this season. I am also super thankful for my family who is continually by my side helping me with practical, daily needs. I really do wonder if I will ever be independent again. The thought terrifies me as I feel so incapable and weak these days.

Well, that’s about it from me – nothing too deep or exciting. Just a lil’ update. As of about 7ish this evening, I started feeling a bit more like myself and for that I’m thankful (and always encouraged). But, I don’t want to get overly confident. I will just be thankful for this moment of feeling as good as can be expected and we’ll see what tomorrow brings. As has become my new habit, I pray each day brings new healing to my body and new death to the cancer. I pray for the grace to embrace and live each day as the Lord commands – one moment at a time all in faith and an abiding trust in Him. And with this new habit, I am also afforded the privilege of expressing my gratitude to simply “live” – something I took for granted before a rare cancer forever altered my perspective.

PRAYER REQUESTS
--Continued endurance for my body to tolerate the chemo.
--For God to allow the chemo to work effectively & powerfully to eradicate all of the cancer in my body – from the tumor in my right forearm to my C7 vertebrae to any stray cells.
--For a positive attitude as I learn to live life on chemo with its ups & downs.
--For the pain in my arm to decrease. I simply tell myself when it is throbbing, “It’s just making a fuss because it’s dying.”
--For my family as we also transition to this new life and what that looks like.
--For total, complete, God-sized healing of my body (and the corresponding trust He can & will do it).
--For all of my upcoming appts at MDA to be confirmed. We are currently trying to reschedule a few to work around my chemo schedule.