S-l-o-w-l-y moving forward

I hope this “little kitty” makes you smile. I realize it’s an awkward beginning to a “moving forward” post, but I will start with smiles and delight because it makes me happy and it is one of the biggest ways I cope and “move forward” with pain and the unknowns. You see, I pour so much of myself into these posts that I am often stifled as to how to begin. This go-round, I thought it best to capture what our weekend looked like from family life to the ugly “c.”


On Friday, Alexa wanted to dress-up like a kitty so we did our best to improvise with brown eyeliner, a scarf and coordinating kitty hat & mittens – never mind it’s really a fox on her head. I never captured the pink stripes Alexa cut out herself and taped to her legs. Regardless, she had a blast being a “kitty” named Pinky and the whole event made me smile and forget about my pain, even if for a few moments. Okay, the pain never goes unnoticed (or the reality of this ugly mess for that matter) but it made it more bearable on a day that felt dark otherwise. Alexa “Hope” definitely puts a sparkle in my day.


I laughed when she posed to show me her tail. Work that tail, sweetie!


Okay – that was fun. Ty for indulging me. I needed that. Now to healing updates, as I am trying so very hard to believe they are and will continue to be . . .

MY FOLLOW-UP WITH KEEFER
For the first time ever, my neutrophils were low. These are the white blood cells important for fighting off infections and keeping my immunity strong. If they drop any lower, Dr. Keefer said he’d drop my full dosage of the chemo pill, Votrient, from 800mg/day (4 pills) to 600 mg (3 pills). Of course, I didn’t like that one bit because I don’t see the use of the pill unless it’s full-strength, but we’re hopeful my counts will go back up with prayer, diet and rest.

I have yet to hear how my liver enzymes are doing but I assume no news is good news in this regard. My blood pressure was great. I am not scheduled to see Keefer again until next month as I’ll be doing my next round of blood work/blood pressure/liver check-up at MDA at the end of the month. I may return to Mercy/Keefer in OKC for an MRI of my right pelvis/leg area before the MDA visit but more on that later.

MY ARM RE-ASSESSMENT
This was my arm four weeks out of surgery.


This is my arm almost four months later (taken on Saturday).


If you notice, I can tighten my fist, not perfectly (that will never happen again due to a missing ulnar nerve and flexor tendons) but it is tightened. I couldn’t do this until I started hand therapy.

Below is a profile view. My right arm (which is your left) looks like it’s been on a diet (and thank God for the tumor diet it’s been on). My hand therapist is proud of the little muscle belly growing below the site of my tumor resection. Aren’t you impressed? Again, compare my fists. Although my thumb is forcing all of my fingers to stay curled – and this after I positioned my right fingers there with my left hand – I am still thankful for the improved range of motion and the fact my pinky is curled up right along with them. With the loss of my ulnar nerve, I have no feeling in my pinky or half of my ring finger. My therapist said oftentimes, the pinky will just point out but miraculously I can bend mine and make it do what is necessary if I concentrate. She is amazed by the flexibility I have in these fingers. Not much functionality, but she said you definitely want them to bend like the rest of your hand and they do. I like to call it “joining the party.” Thank you Lord!


As far as my reassessment with range-of-motion and grip strength, Debbie said I have come a long way – especially in my range-of-motion. As far as grip strength, my right hand had 5 lbs at our last assessment (four weeks ago), and has almost tripled at 13.7 lbs of grip strength. Debbie defines a functioning hand as having 25 lbs of grip strength, so I have a ways to go but the news was encouraging to me. My left hand grip strength improved from 55 lbs to 66 lbs.

Debbie will send my progress to Dr. Lin at MDA, and hopefully, he’ll sign off for me to receive a few more weeks of therapy so I can reach my max potential concerning range-of-motion and strength. I’d love for my right hand to be considered “functional.” Oh yes, and insurance has to agree as well but Debbie thinks I have a great case to continue. We’ll wait and see. In the meantime, I’ll continue working my hand in warm rice, squeezing my therapy ball and making fists.

As far as functional progress, I can do Alexa’s hair (clumsily but it still gets done), carefully cut produce, stir with a utensil, turn a doorknob, zip a zipper, hold a razor and shave (while praying often), write (hooray), and open a car door. I do all of these things in different ways than I used to, but Debbie is proud of my “new normals.” New goals are learning how to shoot a basketball and throw a spiral, because, believe it or not fellas, I had a beautiful spiral back in the day.

THE NOT-SO-GOOD UPDATE
Of course, I was thrilled to pass along an encouraging report to my family and closest friends on the drive home from hand therapy. With tears rolling down my cheeks, I thanked God for saving my arm/hand and restoring a great deal of functionality to what seemed “a hopeless case” by so many docs. I asked myself, “Why would the Lord go to such great lengths to save my arm/hand if He didn’t want me to use it and live?”

It seemed almost immediately following such encouraging news, the test came. My right upper leg/pelvis started hurting again Thursday evening. It hurt in a very similar way my left hip/pelvis did. Not only this but I was also having a very strange pain in the middle of my chest (accompanied by the constant skin sensitivity I’ve had since Dec. 24). I couldn’t shake the continual, throbbing pain in my upper right leg coupled with the chest pain (as it hurt to breathe and still does).

I hit a “discouragement wall.” I mean, really God? Can I have just one day of celebration and thanksgiving for answers to prayers without having to be reminded of the looming threat inside my body – without fighting fear, pain, sadness, and disbelief. Because, let’s face it, if my cancer is spreading, it really doesn’t matter how much progress I make on my hand therapy. In my “I am praying boldly for healing” world, a functioning hand with spreading cancer doesn’t add up. And, if the cancer has spread, then the chemo pill is null and void as well. It’s so frustrating and I can’t emphasize this enough. You see, I have to pay attention to every little pain I have (of course, the pain is rarely little so that’s not a problem). Even if I wanted to ignore it, I am not given that luxury because it could be. . . . well, you know. You see, I didn’t do anything about a nagging pain in my arm/hand for five years, and look where that got me!? I am face-to-face with my mortality. I realize we all are – it’s just that mine has rare, metastatic & Stage IV in front of it. I hate all of those words. I hate them. I could say a lot more at this point in a lot more colorful language as to my thought process that Thursday evening through the weekend but I’ll refrain.

Let’s just say, whether the constant, debilitating pain was spiritual warfare, spreading cancer, healing pain (or all of the above) – my mind struggled to trust Him in those moments (as it has so often the past nine months). I was sad. I was angry. I felt betrayed. I told Him, “This is so cruel. All of this is cruel. And, You could change this at any moment. You could ease this pain. You could heal me. Heck – You could just let me know You care – and you choose not to.” I got in bed wincing one of those evenings and told Chris, I am sick of sanctification. I never wanted to be “sanctified” in this way. I don’t know what I did to deserve this or why God thinks I can handle this but I don’t appreciate it one bit.

And that’s when my Dad came. He arrived Friday afternoon to help me at home and with Alexa. The pain and the emotional load was too much. My mom arrived that evening. Chris is getting used to my parents living with us because he knows they can help me out so he can work, and it gives him peace knowing “his girls” are taken care of. I am so fortunate my husband loves my parents and vice-versa. And, I’m unbelievably blessed by my family’s willingness to drop everything to love on me in this way.

Anyway, I felt better just having family around and extra help to take care of tasks I was incapable of tackling. (I know so many of you are willing to help, but on days like these, it is best for my family to deal with the raw nature of my humanity – it’s not pretty and they love me no matter how un-pretty I am.)

Here are a few ways they love me . . .


Pop provides endless entertainment to Alexa. There is nothing too silly for Pop to be for his Alexa-bear, even if it means wearing bracelets for earrings and being turned into a toad or a king. He’s been one of Alexa’s best buddies the last nine months.


Mom lovingly cleans and preps my juice packs every week – that’s 14 a week. And Chris takes on the task of juicing them every day for me AND then cleaning up the mess. This is a labor of true love. My contribution – I drink them with gratitude and w/o wincing – too much.

Long story short, the pain continues to be pretty constant. I am praying for wisdom to know if/when to call Keefer for an MRI before MDA or whether to wait it out until the week of Jan. 27th.

On a brighter note, I told Chris one evening, I was battling some very deep but also very simple theological questions about God. Ones I have never questioned before. It scared me a bit to be in that place but I knew these areas needed to be examined – not ignored. I said, “I just need to know if God even cares. I am not for sure He loves me right now, and I’m not for sure if I love Him.” (We know He does, and I know I do but I feel like I’m in an incredibly deep pit right now.)

All of that to say, today I received three pieces of mail. I won’t go into great detail of the contents because it would take a novella to explain the personal significance of each. However, I will say this – God let me know He does care for me today. One card (a piece of artwork by a precious child) simply said, “Keep trusting Him” with my favorite verse beside it. (I seriously doubt the sender knew that was my all-time favorite verse.) One friend was praying specifically for daily joy & beautiful thoughts because those affect me mentally, spiritually & physically (as you read above, my thoughts have not been pretty and my pain has been bad). I needed that reminder. And, the final card had an image on it that I knew came directly from the Throne of God because it has been His symbol to me of love, healing and hope throughout this journey. I had actually said to Him today, if I see this certain image today than I would know You are in this with me. I opened this card and . . . this exact image was on the cover staring right back at me.

I immediately started to cry (just as I am right now), I was so stunned He would do that for me. It was such a silly thing to ask of Him. It was something only someone weak in faith would ask, and yet He followed through and sent it in His love. I immediately got on my knees and thanked Him for His very personal love letter to me. I asked Him to forgive me for my recent attitude and unbelief and asked for the strength to continue believing He can do something impossible in my life this year which can only be attributed to Him. (By the way, I’m still praying that every day – see the previous post).

So, I am moving forward . . . slowly. I wish there was another way for me to look like Jesus. I wish it were easier. I wish it didn’t hurt so much, on so many levels, but having the assurance He is very much involved in my situation helps. To know He hasn’t forgotten about me eases the pain. To know He loves me enough to meet me where I am – even in my unbelief – well, I don’t even know how to wrap my mind around that one. I feel His love in a very tangible way tonight, and for this, I am grateful.

May my heart (and all those who join me) continue to . . .

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12


Random fact – because my brother-in-law, John, includes them on his weekly family updates. It took 108 batteries to power the 56 LED column candles I decorated with this Christmas. It was so sad (and dark) to put them away . . . another reason for my melancholy disposition. Alexa said last night, “Mama, I miss the candles. Can we put them back again?” She loved reading by the candles in the evenings. I did too. Goodness, I really wanted to put them back right then and there. Who knows – we may break them out again when we need a little more “light” in our lives.