Home again! Home again! Jiggity jig!!

Well not quite yet, but I was discharged from the hospital today at 2:30pm and am back at my Houston home with my family! The last four days have held a myriad of emotions from elation at God's tremendous answer to prayers in removing the tumor and saving my hand, to the sobering reality that the road to my arm’s healing will be much longer than I anticipated and doesn't even involve my cancer battle.

I was so focused on the outcome of my surgery (if I would keep my arm or face amputation and if they could fully remove the tumor), I had given no thought to what regaining function of my hand would look like, much less the post-recovery pain. That reality hit home when I saw my incision very early the first day in the hospital. It stretched the length of my forearm - from wrist to elbow. Needless to say, I realized then that I wouldn't be "back to normal" in a few days. In fact, Dr. Lin explained on the first day I might not know about the full functionality of my remaining fingers and thumb for several months. And much of the functionality would be dependent on how my median nerve healed and how my brain relearned how to move my fingers. I didn't know how much rearranging he did inside my arm and I didn't expect to have a drain and catheter peeking out of my arm for several days.

As the pain-management team relentlessly sought to figure out the best way to control my pain, much of which is phantom ulnar nerve pain, tears would pool up in my eyes as I worked and worked to get one finger to move and I just couldn't. And then I was dealing with the strange sensation of fingers reawakening and fingers never to wake again. It is a very strange sensation indeed, but the doc said my brain would adjust to the numb feeling with time.

When my family and docs would encourage me that it is extremely early in the recovery ball game and remind me my body is incredibly resilient, my thoughts would move to "the cancer." It was, after all, the entire reason I earned admittance to MDA (I couldn't escape that when I looked at my bald head). Then, I became anxious about the future after this obstacle was hurdled - more chemo, possible radiation and the word I have grown to hate - recurrence. And all the while, I simply wanted to be an independent cancer-free wife and mama with two good arms, energy and no need for narcotics.

Needless to say, the last four days have been filled with many ups and downs. I had to remember, as one friend once told me, God doesn't give us grace for our imaginations, He gives us grace for the moment, and I needed to focus on the task at hand - getting better and focusing on all I have, not what I've lost.

Thankfully, I am pretty much out of the groggy foggy narcotic state I've been in and can update you on what's next. I am thankful I no longer have to wear tights up to my knees, a robe exposing all of my backside, and the need to measure every ounce of my urine. I am also thankful to be "unhooked" with the exception of my drain which will remain in my arm for another week. However, I'd be remiss if I didn't express huge gratitude for the tremendous care I received at MDA from docs to nurses. The MDA staff was compassionate, patient, caring and gifted. My family was also an indescribable blessing to me - thanks for being the best nurses and play pals Alexa and I could ask for. And how can I possibly express the thankfulness I have for all of you who have prayed me through with such faithfulness. I have the most amazing team fighting with me!!

Okay, so what's next? We'll leave for Dallas tomorrow and Alexa and I will probably stay with my parents through the week until my follow-up appointments with my orthopedic and plastic surgeon at MDA on Monday, Oct. 7. The fact is I only have one functioning hand, so I need help tying my shoes let along wrangling a three-and-a-half year old. I also need to elevate my arm as much as possible. The main objective right now is allowing the wound/incision to heal. Then, we'll focus attention on hand therapy and starting a new chemo regimen at home. Hand therapy will probably be 6 to 8 weeks. We won't know full details on possible chemotherapy until I have another visit with Dr. Benjamin.

Thank you again for continuing this journey with me. It's been quite a trek thus far but I'm so excited your journeying along in faith and hope with me. I would have never chosen this path to see the Lord work as He has in my life but I know it is changing me, my family and anyone who's along for the ride. And perhaps that isn't such a bad thing!?

A few pics from the week . . .

The only reason I include this is so I can look back and say, "Man, I looked awful. I've come a long way. God is faithful!”

Mimi rocking Alexa to sleep after her hospital adventures. Alexa knew all the nooks & crannies and she was quite popular with the hospital staff.

Alexa playing at one of the many amazing parks in Houston.

Alexa enjoying a sunset overlooking Houston on the 24th floor/observation deck at MDA.

We're going home!! I don't know who was more excited, mommy or daughter.

PRAYER REQUESTS

- Pain control as my arm continues to heal. Especially for the ability to sleep at night. It's a tricky act balancing my narcotics.

- For my incision to heal quickly and infection-free. I get to take a shower this week - HOORAY!!

- For my drain to be as comfortable and irritation-free as possible this week and for all fluids to drain properly and without clots. The drain is like the port to me - it absolutely grosses me out and I get woozy seeing it stick out of my arm. Seeing the fluid collect isn't easy on my tummy either.

- For continued patience & discipline to work on regaining movement back in my fingers. To be grateful for little improvements every day.

- Understanding and patience for Alexa as her world continues change - no routines & now a very fragile mommy.

- For endurance and strength for my constant caretakers. I pray God heaps blessings upon them.

- For my heart to remain strong & encouraged on this journey.

- For my body to be free of cancer - no recurrence in my arm and for C7 cancer to continue dying.

- For God to continue His work of "good" in my life and more glory going to Him.

Our Big God

The Lord has done great things for us, and we are filled with joy.

—Psalm 126:3

Not that we ever had any question about God being big, but He certainly answered our prayers in a big way today. As I type this message I am looking at Kelsey resting in her bed in her "suite" at the hospital. Sadly, I did not think to take a picture before surgery of what her fingers looked like when she tried to extend her hand, but it is amazing to look at her hand and see her fingers completely extended as her arm is resting on a pillow.

I know many of you have been following progress on Facebook, so I apologize for any duplicated information. Dr. Lin was very pleased with how the surgery went. As expected, her ulnar nerve was enveloped by the tumor (this controls function and feeling for her ring finger and pinky) and had to be removed. We are unsure of whether her ulnar artery was also taken, we will ask Dr. Lin tomorrow. Her finger flexor tendons for her ring finger and pinky also had to be removed. He was able to use the muscles which would normally be used for her pinky and ring finger and do a tendon transfer to her thumb so that she will have greater strength. Since the tumor was lying on her median nerve, he stripped away a bit of her nerve. He was not certain if she would need a skin graft, so he left the closing of the wound process up to Dr. Sharaf (the plastic surgeon).

Dr. Sharaf came and spoke with us. Even though skin was removed, because the tumor had grown, the skin had been stretched so there was no need for a skin graft. She has a drain in her arm which he will continue to monitor, but he was very pleased with how the incision came back together.

I have set the Lord always before me. Because he is at my right hand, I will not be shaken.

—Psalm 16:8

This was one of the verses Kelsey read this morning in her devotional, Jesus Calling. She thought it was so fitting to actually visualize the Lord at her right hand before and during the surgery. Kelsey was thankful for the promise she could cling to - with the Lord by her side, she would not be shaken. Kelsey shared that she felt a supernatural calm and confidence as she came in to surgery. Confidence that God was in control of the situation and that either way, whether she woke up with, or without feeling in her arm, the tumor would be gone. She had prayed last night that God's will would be done today, something that has been very difficult for her to do over the last several months. What amazing grace that He chose to pour out His peace and confidence on her this morning!

There are so many praises today:

- The peace and confidence that God gave to Kelsey.
- The guidance that God gave to both Dr. Lin and Dr. Sharaf.
- Kelsey's arm and possibly 3 fingers were spared.
- The edema (swelling) that surrounded the tumor in her arm did not contain cancer.
- The tumor was fully removed.
- Her median nerve was spared.
- Her radial artery was in great shape and is providing good blood flow to her hand.
- No skin graft was needed.
- We are already able to see some finger functionality - she is even able to move her ring finger a bit (extending it out and even flexing it some).
- Kelsey has had great care - wonderful staff before, during and after surgery.
 

Some prayers:

- Pray for a speedy and infection-free recovery.
- Pray for pain management - she is in a lot of pain from the loss of her ulnar nerve.
- Pray for quick re-learning on her brain's part to know how to adjust to the re-routed function of the tendon to her thumb.
- Pray that the median nerve continues to function, even though it was stripped a bit and that she will have full functionality and feeling in her middle finger.
- Pray for good rest for Kelsey. She is hooked up to a machine that warns when she is not breathing enough and when she relaxes is starts to beep.
- Pray that the cancer is fully removed from her arm and that there is no recurrence.
- Pray for wisdom in the coming days to know what the best step is to take with ongoing treatment.

We can't thank our army of prayer warriors enough for the faithful petitions you sent to the Father. Not only throughout this day, but also throughout this season. Kelsey is certain the peace she experienced last night and today had to do with your prayers. :-) Thank you!

A few of Kelsey's "bright spots":

Note Alexa’s art. She wanted to draw our family – this is a lot of the crew: Daddy, Mama, Alexa, Opa, Ama, Pop, Mark, Holly, Rylen and Layton.

A little luck or…a BIG God?

“He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.  I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”  Surely He will save you from the fowler’s snare and from the deadly pestilence. . . “Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.  He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.  With long life will I satisfy him and show him my salvation.”  Psalm 91:1-3, 14-16

In not too many hours, we’ll be making our way back to MDA so I can get prepped for surgery. The surgery is scheduled for 7:15 tomorrow morning, which means we need to be there by 5:15.

After speaking with my orthopedic surgeon, Dr. Lin, he repeatedly stated it would require a “little luck” for him to accomplish his goals for my surgery – successful removal of the tumor and full functionality of my thumb and index finger. He said it is complicated to predict the outcome based on an MRI reading and much will be determined when he opens me up tomorrow. We can’t relay too many specifics of the surgery because there are so many variables involved – tumor size, location, what it’s wrapped around, if it can be fully removed, etc. … We do know to be praying for a longer surgery, because that means Dr. Lin sees potential for success and is doing whatever he can to achieve it.

Another big concern is saving my radial artery, since he believes the function of my ulnar artery may have been compromised by the cancer. Both of these arteries supply blood to my hand. If both cannot be salvaged, amputation is inevitable. There are other variables that could lead to amputation. However, if that ends up being the case (which we are praying isn’t), Dr. Lin would not amputate at this surgery but would sew me back up and allow us to make those decisions post-surgery.

So – my dear prayer warriors – we are not counting on a “little luck” to guide Dr. Lin’s hands but rather a mighty and powerful God. He is, after all, the One who knit me together in my mother’s womb. He knows and created every artery, nerve, tendon ad muscle in my arm and He knows where “the beast” has been taking residence for five years. He also knows how to remove it – completely and without recurrence.

We feel very blessed by the surgeon God has provided. I have complete confidence in the decisions he will make. He was a US News Top Orthopedic Surgeon in 2012 (US News and World Report). He has degrees from both Stanford and Harvard. But most importantly, he has so many praying for him tomorrow and God will be his guide.

Before we list specific prayer requests, just wanted to share a few pics that bring a smile to my face . . .


Chris won’t be too excited about this one (check out his bedhead) but it’s of my two favorite people and two greatest reasons to keep fighting. Chris celebrated his big 3-4 on Saturday and I had to have one image capturing the day – even if it was first thing in the morning.


It’s a shame you couldn’t witness this event firsthand but all of my family (minus Lil’ A) indulged, rather, were forced to drink the green drink I partake of every day. My mom said it was an act of solidarity. It was a breeze for my mom & Chris who love things that taste like nature, but for my sis & Dad, the green leaf lettuce, beet leaves, red cabbage, Swiss chard, green bell peppers & apple was just too much. It was hilarious – such a shame I didn’t video it.


Dad found this remarkable butterfly in the backyard today. It means a great deal to me because several of you have given me cards or gifts speaking of “new life” or the promise “He makes all things new.” This butterfly was a perfectly appointed reminder that God does make all things new. And, my prayer is after the removal and death of my tumor, I will begin a new life, with an arm free of cancer, fingers that work again, and a body ready for total healing.

PRAYER REQUESTS
- Peaceful rest for Kelsey and the doctors/staff involved with surgery tomorrow.
- For God to guide Dr. Lin’s hands and decisions throughout the procedure.
- For the Lord to save Kelsey’s arm.
- For as full a resection (removal) of the tumor as possible and the ability to salvage as much anatomy as possible.
- Protection of Kelsey’s radial and ulnar artery.
- For restored functionality of Kelsey’s hand (specifically her index finger & thumb, but you could also add in the other three fingers. We’re praying big, right!?)
- That Kelsey’s arm would not require a skin graft.
- For pain management after the surgery.
- For a complete, speedy recovery – free of infection or other complications – so Kelsey could start her next round of chemotherapy as soon as possible.
- For God to be glorified throughout this process. We would love to boast of His power and might as a result of the surgery’s success instead of a “little luck.”

Fernando Ortega - Jesus - King of Angels

On the road again . . .

 

You may wonder why the pic of gridlock. This is pretty much how our day has gone. Dad & I woke-up at 2:30am to drive to MD Anderson to make it to an 8:30am appointment I found out about at 6pm yesterday (and by email no less).

 

Needless to say, I was pretty upset about such late notification when we aren't even in Houston right now. But, that is one of the nuances of MDA - communication is not its strongest suit especially when multiple departments are involved. Luckily, Alexa and I are staying with my parents in Dallas so the drive to Houston was more feasible. So, dad and I got up uber early today and made it to Houston just in time for rush hour (and my appt).

 

We then waited over two hours to see Dr. Sharaf, a plastic surgeon, who will do any reconstructive surgery on my arm if it is needed. We really liked Sharaf but we hopefully won't need him for my surgery.

 

Once we finished up, dad and I got back in the car for the four hour trek to Dallas. However, here we we are (take note of pic). We have been sitting in standstill traffic for over an hour and a half. No one is moving and I doubt any one knows why. We pray it isn't an accident but can only assume it is. We pray everyone is safe.

 

It's almost comical my 45 minute appointment at MDA has already turned into a 13 hr day . . . and counting. We just started moving s-l-o-w-l-y so there may be hope of getting home by 7pm.

 

The good news is my surgery is set for Tuesday. We won't know the exact time until Monday evening. Although I am nervous of what the outcome will be for my arm, hand & fingers, I am grateful "the beast" will be coming out very soon and it will be removed by a highly skilled surgeon. It's been a long time coming. I hate you, beast, and I am so ready for your death and removal. You've done enough damage to my life - now go away!! It's time to move forward in this fight.

 

Thank you for your continued prayers, encouragement and confidence that God is bigger than all of this mess. We have to believe He is up to more than we can see or understand (even in a 13+ hr day to see one doc).

New Developments

Kelsey received a call from MD Anderson yesterday afternoon with news they would like to remove the primary tumor in her right forearm this Tuesday, September 24. Dr. Lin, the orthopedic surgeon we met with on Monday, would perform the surgery. At this point, the surgery is not set in stone as there are some scheduling details that need to be to resolved. However, we should know for sure if the surgery date is confirmed by the end of this week.

The surgery would have as its goal the removal of the primary tumor and the preserving of function and feeling of her thumb and forefinger. When we chatted with Dr. Lin on Monday, he was pretty sure Kelsey's ulnar nerve was gone (which means she probably won't have feeling/function in her remaining three fingers) but he was modestly hopeful he could save her median nerve. Another great byproduct of the surgery is that Kelsey’s ongoing nerve pain would be greatly reduced (and hopefully eliminated in the long run). Our understanding is that Kelsey would probably be in the hospital for 2 days to recover after surgery.

The other news Kelsey received was that the treatment plan would not include pre- or post-surgery radiation but rather another chemotherapy treatment. Ultimately, Dr. Benjamin's concern is to stop and kill the cancer that has spread. Radiation would address Kelsey's arm but not the rest of her body. So, we believe the post-surgery recommendation is to start the new chemo regimen as soon as she recovers (which from our discussion with Dr. Benjamin, would include an oral medication as well as one she would get by IV). 

So, if all goes according to planned, we would have a pre-operative visit with Dr. Lin next Monday, September 23. Kelsey will get blood work at 11:45 that morning, then then meet with Dr. Lin at 3pm. We will keep you posted as we know more.

Thank you to everyone for your prayers – they sustain us and give us hope as large decisions loom and a major surgery approaches. Thank you for continuing to believe God can do big things - including Kelsey's complete healing.

PRAYER REQUESTS

- PRAISE!  A quick response from MDA to address the very real concerns we've had with Kelsey's growing primary tumor.
- PRAISE! God has graciously & continuously provided a wonderful place for our family to stay in Houston. (Thank you for you generosity - Kevin, Kari & Katie!)
- That Kelsey's surgery would happen Tuesday. She has noticed decreasing ability to use the two fingers that still work and it concerns her. The sooner we can take care of this tumor, the better.
- Safe travel as we head back down to MDA.
- Good rest, peace & courage for Kelsey in the days leading up to surgery.
- Our ability to ask the right questions and understand the answers in every step of this process.
- Skillful hands & wisdom for Dr. Lin as he performs the surgery. (Keep in mind, Kelsey's OKC orthopedic surgeon was reluctant she could fully remove Kelsey's tumor and restore functionality in April. Kelsey's tumor is now at least 30% larger than it was, further complicating the ability to remove fully and save function.)
- For God to miraculously shrink the tumor pre-surgery and provide clearly defined borders to make complete removal more possible.
- A God-guided surgery which would allow for full function and feeling in Kelsey’s right hand.
- Death of any microscopic cancer cells left in the primary tumor site as well as in any other areas of the body where they may have spread. We continue pleading with the Father to contain the cancer to Kelsey's forearm and C7 vertebrae. A word we heard very often during this last visit was the inevitability of "recurrence." Please pray this would not be Kelsey's reality.
- A quick, healthy recovery and immediate, ongoing reduction of pain.
- Understanding for Alexa as her mommy will not be around for a period of time after surgery.
- Opportunity to share our hope with others while at MDA. For God's goodness and faithfulness to be on our lips at all times.
- Wisdom to know what the next steps should be after surgery (be it chemo or alternative therapies) and peace in the decision we make.
- A continued, deepening trust in the Father. For hope in Him when little hope has been provided elsewhere.

Whom shall I fear?

“The Lord is my light and my salvation — whom shall I fear?

The Lord is the stronghold of my life — of whom shall I be afraid?”
Psalm 27:1

It was not an encouraging day. Start off with the news that Kelsey’s tumor had grown and the chemo regimen that she has been on has not been effective in stopping growth, add in an MRI, have a bit of encouraging news on her C7 and then have that followed up by a disheartening visit with an orthopedic surgeon where we learned that at this point there is only a small chance of saving any functionality in Kelsey’s arm and that the chance of recurrence with that type of surgery could be high.

Our meeting with Dr. Benjamin started off with a discussion of how Kelsey can hope to manage pain, then transitioned into options for additional treatment. He is leaning toward trying an oral chemo which has quite a few side effects. He also wanted us to try to get in and speak with an orthopedic surgeon while we were there.

Then, it was off to the MRI – that went well for Kelsey, she thankfully was not in a lot of pain during the scan.

We then raced off to meet with Dr. Brown. It was a pretty quick visit, but certainly the most encouraging visit of the day. His look at the MRI showed that the cancer has not grown at all and perhaps had even shrunk a bit. He reminded us that it is a slow process, typically taking between 8-9 months to see bone regrowth. However, he said the area where the stereotactic radiation had been focused showed up pretty clearly on the MRI.

We managed to grab a quick bite to eat (at 3:30), pick up a new pain medication prescription for Kelsey and request her MRI scans before meeting with Dr. Lin (the orthopedic surgeon). He looked at her arm and the MRI scans, checked out her arm and her hand and then shared that we need to have “modest hopes” in the event of a surgery at this point in time. He said that in order to remove the cancer fully, it may completely get rid of functionality in her arm (in which case there would not be much benefit to keeping her arm), but that a more modest removal may allow her to maintain function of her thumb and forefinger. Either way, there is possibility of recurrence and either way it is likely there would be radiation before the surgery and potentially more chemo to come.

So, in terms of medicine, hope is slim. In terms of Who we have been praying to and trusting in since the beginning, our hope has not changed. We are saddened by this most recent blow, but continue to petition God’s throne for healing and for daily strength and courage for Kelsey. We are thankful for the light, salvation and stronghold that God provides in the midst of a dark time. Your continued prayers for our family are appreciated more than you can imagine.

PRAYER REQUESTS

- Wisdom to know the best option for ongoing treatment.
- Encouragement for Kelsey.
- Reduction of the pain in her arm. It is constant and I know that it wears on her. It makes it hard to sleep and is a constant reminder of the cancer in her body.
- Full and complete healing.

Chemo no-go

There is nothing in me that wants to write a post tonight. I’m weary and my thoughts are all over the place - but I know more than anything - we desperately need your prayers. We need our great God to intervene in great ways for both my situation and a very dear friend’s, Melinda.

Today would have commenced my 5th round of chemotherapy but my oncologist, Dr. Keefer, felt it best to hold off on a treatment until we go to MD Anderson this weekend to reassess my progress.

My bloodwork is excellent, and overall, I feel good. However, there has been little to no change in the size of my tumor. If anything, I feel like it has grown a bit. Add into the equation the increased pain I’ve been experiencing and the fact three of my fingers are now tingling with mobility of my right hand decreasing, Dr. Keefer feels we may need to look at other options that might prove more successful (after all, I’ve been on this chemo 12 weeks). It doesn’t mean I won’t be back on this chemo regimen again, but Dr. Keefer wants Dr. Benjamin (my sarcoma doc) to take into account all of these variables plus my upcoming MRI to make the best decision about my treatment future.

I was a bit stunned and yet not-so-stunned by the news I wouldn’t have chemo today. (Keep in mind I don’t handle change well – I’m only spontaneous when I know what’s going to happen beforehand :) But, Chris felt like Keefer made the right call, and I trust my husband’s judgment. The big downer (among so many on this journey) is that there isn’t a targeted treatment for the cancer I have (Epithelioid Sarcoma). So, another chemo treatment will just be another best guess at how to kill the cancer. It’s like grasping at straws, and that doesn’t do my heart one bit of good. Plus, this next possible chemo is a hard hitter – requiring a hospital stay. Now, I’m not saying this will be the course of action. We have no idea at this point. I am just providing hypotheticals based on previous conversations. Regardless of the treatment plan, this is a God-sized task and we need Him to eradicate the cancer however He sees fit.

So . . . we would greatly appreciate your prayers as we head to MD Anderson this weekend as it will be a pivotal visit. We will be visiting with both my sarcoma doc (Benjamin) and my radiation oncologist (Brown) to check on my progress (via MRIs) and discuss my treatment future. Here’s my schedule . . .

SATURDAY, SEPT 14 -
3:00pm – Bloodwork
3:10pm – Chest X-ray
4:30pm – MRI of right forearm

MONDAY, SEPT 16 -
9:30am – Dr. Benjamin appt (Sarcoma doc)
1:00pm – C-Spine MRI (C7 vertebrae)
2:30pm – Dr. Brown appt (radiation oncologist)

PRAYER REQUESTS
- For some encouraging, “whoopin’ & hollerin” news.
- Wisdom for both the doctors and for us as we make decisions on the best treatment plan for me & my family.
- For Chris and me to be able to think through all the questions we want to ask (even if they are hard) and to have the opportunity to have them answered.
- For a clean scan of my C7 vertebrae. To know the radiation (done 3 mos ago) has worked and the cancer is dead and/or dying and new bone is growing.
- For the tumor in my arm to remain stable (or to have shrunk some) and for the MRI to provide clarity as to why I am having more pain and tingling in my hand.
- For full restoration of my right arm
- For God to contain the cancer to my right forearm and C7 and for it to be eradicated forever.
- For God to guard our hearts and minds from the “what ifs” and keep our eyes and hope focused on Him. (These past couple of weeks have been dark and I am frightened often by the bad dream I’m living. It is sad when your three-year-old is used to seeing your constant crying. In fact, Alexa went to get a tissue for me today so she could wipe the tears from my face.)
- For this journey to point to Christ and His worth. I feel like there is so much more going on “spiritually” than what we can see.

MELINDA
If you would, please lift-up a dear, dear sister, Melinda. I have quoted her many times on the blog. She is one of two MDA “cancer-free” sisters (i.e. heroes) I look up to who has encouraged me greatly through her own journey and now my own. She is a believer of the truest kind and she exhibits a trust in our God that is unshakeable.

She recently found out she has a 1.5” tumor that has broken through the bone and is growing outside her skull. They do not know at this point if it is a recurrence of her original brain tumor or a radiation induced tumor.

She will have brain surgery tomorrow at MD Anderson, so the silver lining is that we will get to see her while we are there. I wanted to include her specific prayer requests as well because it never hurts to have the unified body of Christ lifting each other up.

PRAYER REQUESTS
- for safe travel to Houston next week for my family and me
- for Thursday night - that I will sleep soundly, and more importantly that my neurosurgeon, Dr. McCutcheon, will sleep soundly, so he will be refreshed and in top-notch form for my surgery (NOTE: Dr. McCutcheon will be flying in from South Korea on Thursday. Please pray that he will sleep soundly on the plane and not be jetlagged during my surgery!)
- for Friday - for peace and calm as Corey & I arrive at the hospital in the early morning, do a lot of waiting, have a pre-op MRI, and do some more waiting until they take me back to the OR
- for God to divinely guide my doctor's hands, so that all cancerous or dead tissue is removed but all healthy tissue is undisturbed
- for a competent anesthesia team - in November, my team did a world-class job, leaving me with little to no 'anesthesia hangover'.  I would appreciate bold prayers that God would provide the same anesthesia team for my surgery on Friday.
- for all MRI equipment & software programs used during surgery to be working properly, so any 'cuts' will be precise and accurate
- for peace & calm for Corey, my parents, and my in-laws while they endure the long day in the waiting room for my surgery to be completed
- for attentive & compassionate nurses, especially in the ICU
- for no complications, no seizures, no infections, and a quick recovery
- for all elements of my speech center to be left fully intact, and that I will be able to speak clearly right out of surgery
- for protection for my motor strip and for all functionality to remain intact
- that I will not be fearful, but trust in God's healing power, if any slurred speech or seizures occur
- for endurance & strength for my family, as they selflessly serve and take care of me in the hospital and at home
- and most of all, for God to be glorified in my life, and for the name of Jesus Christ to be proclaimed as Lord of All.

To end, I want to share a song Alexa and I have been singing today (between my sobs) that best describes where I want my heart to be. It doesn’t mean it is there all the time but where I want it to be.

Lord, I Need You by Matt Maher

I believe Melinda said it best in our texting conversation this evening, “Surely God has a plan for both of us, though it’s hard to see right now. Lord, we trust you with our bodies. We are yours. Surely, if you can rescue our souls, you can rescue our bodies. Trusting You.”

Amen, Melinda, Amen.

River’s Edge retreat

It was time again for my family to journey to the unexpected beauty of southeast Oklahoma and enjoy Labor Day weekend at River’s Edge Cottages. We did this last year and enjoyed it so much, we wanted a repeat. Although the travel followed my harder hit of chemo, I was eager to get away and soak up some of God’s handiwork with those I love most (even if it meant enjoying it horizontally). This was, after all, the first time I had packed my bag (since April 12) and it wasn’t to make a trek to MD Anderson. Hooray for nature! Hooray for a fun cabin! Hooray for s’mores! And, hooray for a magnificent thunderstorm displaying God’s unleashed power over His creation. This was our view from one of two balconies. The river was right below us.




Here’s a glimpse of our weekend. The only downer for me was the fact I couldn’t participate in the activities I did last year – rowing, volleyball, basketball, hiking, horsehoes, etc . . . The downers for the others – Pop probably tore his rotator cuff (he will know for sure Wednesday) and Chris hurt his lower back.  Aren’t we a sad crew? We did, however, attempt to assemble a 1500 piece puzzle. One thing’s for sure – I want to return next year with a full head of hair and be stronger & healthier than I ever imagined. Wouldn’t that be wonderful!?

SWEET COUSINS
Alexa is at that age where saying “cheese” makes for a very unnatural smile. We hope this shall soon pass but you gotta love it.

FUN ON THE RIVER
This was the view of the river looking down from our balcony. Mark & Hol were taking a cruise.

Mark found a branch he thought would be perfect for jumping into the river. When we knew the branch could hold “Papa Bear,” as we affectionately called him with his wide-brimmed sun hat, then Chris, Rylen & Layton bravely followed suit.

HANGING OUT AT THE CABIN

Post-injury, Pop decided to soak in the hot tub. He wanted to take a pic of the canopy of trees overhead. Here he was trying to sit down and keep his cell phone out of the water, even though he could barely lift his right shoulder. I believe this is called “grinning and bearing it.” That’s it for this year!

Joy!

“A cheerful heart is good medicine, but a broken spirit saps a person’s strength.” Proverbs 17:22

Again, my apologies for a long overdue update. I had my hard hit of chemo last Thursday. Then, my family traveled to SE Oklahoma to enjoy a long Labor Day weekend together (more on that in my next post). But the long of short of it is I’ve had several dark days. By the time Alexa is tucked into bed, I am simply ready to take my narcotic and do the same. The past two weeks have been long. As much as I hate to admit it, they have been filled with tears, questions, fears, anger, grieving, and downright sobs. If they accepted body trade-ins, I would’ve traded my body in for a new model.

You see, over the past two weeks, the nerve pain in my arm has greatly intensified. It can be a dull, constant ache that lasts all day (and night), or it can come in sharp, throbbing pains that literally take my breath away when they zing from my elbow to my fingertips. The throbbing pains frighten me most because they come unexpectedly and can last for a couple of minutes or hours and I have no idea what’s going on inside me. Regardless, it’s pain all the same and I was under this naïve impression if my tumor stopped growing and (hopefully) started shrinking, the pain would cease as well. Yet, here I am writing the pain has increased. I am still searching for a med that will control my pain throughout the day, and I have almost given up hope I will ever sleep through the night again (unfortunately, Alexa doesn’t nap either so a daytime snooze is out). Even my Hydrocodone is no match for this pain.

Now, add into the equation that beginning last week, my right hand started to go numb. I have since lost feeling in my middle finger, ring finger and pinky. They all feel like they are “asleep.” Those three fingers have also since been “locked down.” I literally have a claw for a right hand but ironically cannot make a fist (thanks to my flexor tendons being enveloped by the cancer as well as my median nerve). There is no way I could straighten those three fingers without valium and a stiff drink. The good news is that my index finger and thumb are still mobile and I can still feel them. I am praying that continues because it allows me to use my right hand to some degree – like typing for example. I do that with two fingers on my right hand now.

And – just a few more disconcerting bits of news. By my visible estimation, my primary tumor has not gotten any smaller. I have no idea what’s going on underneath the surface, but the large bump on the outside remains just that – a large bump. And, my neck and lower back have started aching again. I am praying it was only the weekend travel and a different bed to blame but it still concerns me nonetheless. I assume random pain will probably concern me from now on.

As you can see, I have felt under spiritual and physical attack for several days and that doesn’t include all of my fun chemo side effects, which typically get me down around this time in the treatment. Needless to say, I have been sad. I have been scared. I have mourned the life I once lived so footloose and carefree and despised the one I am actually living. I have wondered time and time again what in the world the Lord is doing. I watch others my age go about their lives filled with plans, with fun, with life. I feel none of these things anymore. I feel a bald head, a port sticking out of my chest, tingly fingers, aching muscles, nausea and a chemo-infested mouth. None of this is fun. None of it is easy. None of it has an end date. And, I have no control over any it . . . or, do I?

Which brings me to my blog title “joy.” Yep, haven’t experienced much of that since April 12 . . . and I realize some of that is due to obvious circumstance. Being diagnosed with a Stage IV rare cancer isn’t supposed to be joy-filled – either are scans, surgeries and treatments. But, I also realize I have made choices along the way that have prevented me from experiencing joy when it’s available to me (which is always according to Psalm 16:11).

So that is one of my big prayer requests for you mighty prayer warriors – that I would begin experiencing a deep, unexplainable joy in Him (despite my ongoing, unknown circumstances). That I would surrender my fears, my sadness, my what ifs, even my anger and trust Him enough to fill me with joy. That I would experience my crazy silent laugh (which means I am laughing so hard I will soon cry) and my smile would resurface throughout the day. In a cancer devotional I read, it says the literal translation of Proverbs 17:22 is “a cheerful heart causes good healing.” And goodness . . . am I in need of that more than ever before!!

So yes, please continue praying for complete and total healing of my body and for this darn tumor to start shrinking!! Pray the cancer is contained ONLY in my C7 vertebrae and my right foream and dying even as I type. And pray for my follow-up visit to MD Anderson (Sept. 14-16) to check on the progress of my chemo treatments as well as my three-month follow-up for my spine radiation. How good it would do my heart to receive positive reports and know the treatments have been and are successfully working toward total healing.

And perhaps throw in that I might see and experience the Lord’s goodness throughout the day. He’s been kind to allow that the past two days through conversations with friends, text messages, voicemails and cards. It truly did encourage my heart, and sometimes that is just what the doctor ordered in the midst of fighting cancer.

As a side note . . . I did have a good laugh on Tuesday. As Chris was praying at dinnertime, he was praying for healing over our family. Alexa interrupted and said, “All four of us are sick.” Chris and I looked at each other confused by her statement about four. She continued, “Daddy has a gallstone and a hurt back. Pop hurt his shoulder. I have a cough” . . . and then she looked at me and said with a smile and enthusiasm, “and, Mommy has cancer (then she smiled really big, pointed and squealed), and she doesn’t have any hair on her head.” It was one of those moments so inappropriate yet so true and so funny. I am grateful Alexa can make light of such serious issues and accept me sans hair. I am thankful for her contagious smile too.

Since I am quite ready for my narcotic and bed, I will end with this beautiful prayer from the same devotional I mentioned above. It’s mine as well.

Lord, I pray that You will give me a cheerful heart, in spite of all I’ve gone through and all that still is ahead for me. I know I don’t have to smile and pretend I’m happy and that everything is all right. But I do want to feel Your quiet joy in me and even hear laughter from my lips. I want to remember that there is life after and even with cancer.

Please help me not be dejected and sad, for the joy of the Lord is my strength. And Holy Spirit, please develop in me the fruit of joy – a joy that’s not based on circumstances, but on my relationship with my Father. Let me be joyful in the simple gift of another day to love and be loved.

I pray, Lord, that You will bless me and protect me, that You will smile on me and be gracious to me, that You will show me Your favor and give me Your peace.