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Tuesday, July 30, 2013

Good news!!

A great big thank you to all of my mighty prayer warriors!! God allowed us to receive some refreshingly good news yesterday at MD Anderson.
 
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It started off with a smile when we checked in at the receptionist's desk, she handed me these beautiful potted flowers. The receptionist's lips were sealed concerning who sent them but the card said "God is good." I have to admit I felt pretty special in the waiting room with such a thoughtful, anonymous gift by my side. I want to send a great big hug to the dear friend who took the time to surprise me on such a monumental day. Thank you for the reminder that, in good news or bad, God is still good. That was definitely my prayer all day - keep my eyes on Him and keep trusting in what He's doing.

And so, Dr. Benjamin and his PA came in to chat with us. According to the comparison of my baseline MRI of the tumor in my right forearm (done in June prior to my chemo) and my MRI of the same tumor (from Sunday), the tumor had decreased in size very, very, very minimally - we're talking maybe 1/10 of a cm. In fact, Dr. B talked very little about the insignificant decrease in size but what he did spend a bit of time talking about was the fact the tumor hadn't grown. . . and, that's a big deal! Apparently, from April 12 (the day of my biopsy) to the time of my pre-chemo MRI (June 9), my tumor had grown 30% (you can see the difference in the pics below).

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My right forearm prior to the biopsy (April 12)

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My right forearm prior to chemo (early June)

So, no growth of the tumor in the past six weeks including a possible minimal shrinkage was a huge answer to prayer. Dr. B said he didn't expect significant change in only six weeks but he was pleased it hadn't grown. He said it would take time for the tumor to decrease in size. Bottom line, Dr. B believes the chemo is doing its job (hindering the cancer growth and decreasing its size) and he wants to continue the regimen. I never thought I would be so excited to say, "I get to do more chemo!"
 
We asked about the six rounds he originally suggested (now that I am about to undergo #3), and he said there is no magic to the number six. As long as the cancer is responding to the chemo and my body can tolerate the toxicity, I will be on this chemo. When I asked about the next step beyond chemo, Dr. B just smiled and said, "One step at a time."
 
Once again, we are on the path of trusting God (like we always should) - one moment, one day, one treatment, one round out of time. Cancer is definitely an exercise in faith. We'll continue praying six rounds will do the trick, but we'll also ask God for His grace to face however many rounds it takes to heal my body.
 
Bottom line, I want the assurance the cancer is eradicated from my body, and I would be elated if they could fully remove the tumor from my right forearm, saving my arm/hand in the process. It truly would be a miracle as the tumor has literally embedded itself around my median nerve and flexor tendons. It's a gnarly mess. Even the PA said they would need "more help" to make that happen. I just smiled and said, "We serve a BIG God who is in the business of doing BIG things, and we have a lot of people praying for BIG things."
 
And so, we left MD Anderson so thankful the chemo is working, but ultimately, thanking the One who is making the chemo work. We are preparing to face more chemo in the hopes it continues to confuse, stifle and eradicate the ugly cancer in my body. And then . . . we will face that anticipated "next step" in the healing process.
 
Along with praying Psalm 86, a precious cancer survivor prayed Isaiah 41:10-13 over me, and it is my prayer of confidence in Him each day in this battle against cancer . . .
 
"So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

All who rage against you will surely be ashamed and disgraced;
those who oppose you will be as nothing and perish.
Though you search for your enemies, you will not find them.
Those who wage war against you will be as nothing at all.

For I am the Lord, your God,
who takes hold of your right hand and says to you,
Do not fear; I will help you."
 
PRAYER REQUESTS
 
- PRAISE!! We thank the ultimate Healer for good news and progress toward healing on this journey. He is doing immeasurably more than we can ask or imagine.
 
- For my body to continue tolerating the toxicity of this chemo as long as it takes (hopefully six rounds but more if necessary) to rid my body of this cancer forever. Specifically for my primary tumor to respond and shrink (or totally) disappear so full resection is a reality. And that I could regain functionality of my right hand/arm again.
 
- Pray for the timing for my follow-up appt with Dr. Benjamin. We are trying to coordinate it with my three month follow-up with Dr. Brown regarding my stereotactic spine radiation on my C7 vertebrae. We are praying for good news there too - no more cancer!!
 
- Continued trust in Him on this journey and to use this as an opportunity to make His name & worth known.

Sunday, July 28, 2013

Prepping for MDA

"Blessed is the man who fears the Lord, who finds great delight in His commands. . . He will have no fear of bad news; his heart is steadfast, trusting in the Lord. his heart is secure, he will have no fear." Psalm 112:1, 7-8
 
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In my "Clean shaven" post, I mentioned a full rainbow Chris saw around the time I was getting my head shaved. I didn't have the privilege of witnessing it's beauty, but a sweet friend (thank you Amy) read my post and shared this image with me. This is the rainbow the Lord chose to graciously display that evening. For me, it's a beautiful reminder of His love & faithfulness especially in the midst of stormy circumstances.
Well, we are back in Houston for a follow-up visit to see if the first two rounds of my chemotherapy have been effective in shrinking my primary tumor. I have to admit my mind and heart have been racing all week in anticipation of what the MRI (I will have today) will reveal. Some days, I think the tumor is shrinking. Other days, I feel like it has gotten larger (at least the pain leads me to think that way).
 
You, of course, can imagine the hypotheticals so I won't go there, but it would do my heart oh-so-good to hear this treatment is working. You see, my cancer is incredibly rare (I do plan on sharing more about the particular cancer I have in a future post). I can't overstate how rare it is. There is no targeted treatment for my tumor, no clinical trials. The only consistent word docs have used to describe it is - nasty. Dr. Benjamin simply stated at my last appointment, "I have seen this (particular type of chemo) be effective with this tumor." And so, that has been our prayer all along - that the chemo works and gets this bad stuff out of me.
 
I try and try to guard my heart against the odds of this disease but I felt very attacked by its ugly statistics this week. It is so easy to camp out on what research shows and on what treatments have and haven't done. It's human default to dwell on "the ifs." However, I have to keep coming back to the Truth. God is not a God of statistics. In fact, He loves to buck the odds - so to speak - and simply show Himself to be God . . . that way He alone can get the glory (and I'm all for that).
 
He is, after all, the One who created every cell of my body. He alone is the sustainer of my life. He is the one who ordained I would have this disease and He is in absolute control of how this chemo is going to work in my body. At the end of the day, He doesn't need medicine to heal me. He can do that effortlessly.
 
As much as I desperately want to trust in this chemo, I felt the Lord was reminding me this week to continue choosing to put my 100% trust in Him and what He's doing with my diagnosis, my treatment, my prognosis. In Isaiah 49:23, it says, "Those who hope in me [the Lord] will not be disappointed." I assume that's what Isaiah and the Psalmist were saying - that the man who trusted in the Lord would have no fear of bad news for his heart would be steadfast and secure because his hope and trust were in the Lord.
 
Heading into these next two days, that is where I pray my heart would continually choose to be - trusting & hoping completing in Him.
 
PRAYER REQUESTS
- Today (Sunday) - I have blood work (11am) and an MRI of my right arm (1:30pm). This MRI will be compared to an MRI I had of my right arm prior to chemo. Please pray for those doing the blood work and especially for the tech performing my MRI - for accuracy in gathering clear images to compare with my baseline MRI. Please pray I would be able to be still and comfortable through the procedure.
 
- I will meet with Dr. Benjamin on Monday (11am). Pray for my heart during this visit. For peace as we await the results of my MRI and hear Dr. B's thoughts on the future of my treatment. Ultimately, our prayer continues to be that the chemo works to shrink and destroy the cancer in my body as well as for total and complete healing. I have mentioned kissing Dr. B's cute bald head if there is good news. I am not above this - so let's pray I make a fool of myself :)
 
- All of this journey is a refining process, so many lessons to learn and relearn. Please pray my focus would be vertical whether I'm lying still for an MRI or waiting to talk with Dr. B. Pray the HS and God's Word guard my heart from the Enemy's lies.

Thank you, thank you for praying and believing big with us. We do believe He will do immeasurably more than we could ever ask or imagine!

Thursday, July 25, 2013

Through their eyes

"The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart." I Samuel 16:7
This is a pic Alexa drew of our family shortly after my cancer diagnosis. Alexa is the stick figure on the left with a pink smiley face sticker. Daddy is the larger figure in the middle, and I am the stick figure on the right. Notice the slash through my arm where the tumor is. (Perhaps the other stick figure between Alexa and Daddy is another child we pray for someday). If you ask Alexa, though, it's probably her pretend pet cat.

I promised a post revealing how Chris and Alexa Hope handled the transition from a full-haired Mommy to a bare-headed Mommy. As you can only imagine, there is great trepidation when confronted with the reality your hair will soon be history. Unfortunately, it's just another rung in the "loss" ladder cancer deals out. The next loss - eyelashes & eyebrows . . . and let's not talk about my arm. But I digress, at least for me, there was a deep, hidden fear even once I came to terms with my own hair loss, the most important people in my life might not.

I was so afraid my three-year-old daughter would think Mommy looked like a monster. I wish I had a gentler descriptor but "monster" was always the word that came to mind when I envisioned my first encounter with Alexa. And, more importantly, I was afraid Chris was growing weary of the "in sickness and in health" commitment he made to me at the altar seven years ago. Perhaps my baldness might be his breaking point. I know you smile and say to yourself - "Kels, you're officially losing it" (by the way, I have); however, fear can be so real at times and this was one of these moments. Because you know my family, I could stop now and you would know the "rest of the story," but I think it deserves retelling.

ALEXA'S ACCEPTANCE

From the onset of my diagnosis, we wanted Alexa to know the truth she was capable of handling. Although she is only three, we knew our little girl could perceive a great deal of what was going on so there was no need hiding any of it from her. After all, this journey is as much about her growth and refinement as it is mine. And at the end of the day, we want her to walk away with an expanded view of God not a diminished or confused one.

From the first doctor's appointment (at the end of March) until the present, we pray daily, multiple times a day for God to heal Mommy's arm and her entire body. We thank Him in advance for what He is doing and is going to do. So, it was precious to me a few weeks ago before we prayed that Alexa asked me this . . .

A: "Mommy, why does God heal my ouchies fast but He heals your arm (speaking slowly & deliberately) S-L-O-W?"

I thought it was an excellent question. I said, "It does seem like God is taking a long time healing Mommy's arm. Maybe He is waiting for us to ask Him to speed it up." So, I add in every once in a while, "Lord, could you please heal Mommy's arm and entire body quickly."

And when we pretend Alexa is Doc McStuffins and I am her patient, she will pretend to cut out Mommy's tumor. She will tell me the tumor is stuck in my arm and we need to get the tape out to make it all better. Oh, how I wish it were that simple.

All of that to say, A's little mind is turning all the time as she processes the transitions forced upon her with this disease. When Chris' parents left a little over two weeks ago, she asked me who was coming to stay with us next. She has begun to accept Mommy's absence for surgeries, doc's appointments, scans and chemo. She accepts I don't have much energy anymore and I am limited in what I can do. I didn't say she was happy about it but she accepts it. I'm truly grateful for that. So . . . on to my hair loss.
Soon after my diagnosis, we received these children's books dealing with mommy's cancer from dear family & friends. Initially, I read the titles, put them directly back in the packing box, and asked my mom to take them home with her. I wasn't ready to deal with that stuff. However, three months in and heading into my 2nd round of chemo, I asked mom to bring the books back. In my heart, I knew it was time to prepare Alexa for another change.

So, we (rather Chris) would read one book to Alexa each night. I would sit beside A trying to remain strong but tears always seemed to trickle down my face as the book would describe my condition and I would just look at my precious child - my heart breaking. Alexa remained incredibly attentive during these books, so I knew she was listening.

Two mornings after reading our first book, Alexa jumped in my bed with me while my Dad (aka Pop) came back to try to convince Alexa to play with him so I could sleep. Out of the blue she said, "Pop, did you know Mommy is going to lose her hair?" Pop was taken aback as he didn't know we had been discussing such matters with Alexa. I interjected, "Yes, but remember, Mommy's hair isn't like Pop's. Mommy's hair will grow back. Poor Pop's won't." We laughed a bit and then I asked her if she remembered why Mommy's hair was going to fall out. Alexa replied matter-of-factly, "So all of her ouchies will go away." A beautiful moment indeed - my little girl "got it."

But "getting it" and experiencing it are two different things. The night I left to shave my head, Chris told Alexa that mommy went to shave her head and that meant when she saw me in the morning all of my hair would be gone. I was so nervous that morning when she hopped into bed with us. I had a beanie on to keep my virgin bare head warm. I hugged her and asked her if she wanted to see my bare head. She was groggy so I didn’t really get a response from her. I took off my beanie asking if she wanted to touch my head and she turned away. It broke my heart but it didn't surprise me (I immediately thought "monster"). I quickly covered my head and asked if she would give me my best medicine - her hugs. I was relieved when she did and I decided keeping my head covered for the rest of the day might be the best bet.

However, after a doc's appointment and running errands, my head was hot and itchy from wearing a hat, so I asked her if it would be okay if I took off my hat. She agreed. So, I said a quick prayer, took off my hat, and started dancing around like the silly Mommy I normally am. She started giggling and said, "Mommy, you look kinda funny." I looked at myself in the mirror, smiled and totally agreed. Then, I asked her if she wanted to feel my head and she said yes. I carefully sat beside her and she ran her little hand across my head. "It feels rough like Pop's face." I said, "Yes, that's because some hair is already growing back."

From that moment on, I've felt unconditional acceptance from Lil' A. She enjoys feeling my rough noggin' and I feel free to walk around without any coverings when I'm around her. I am still Mommy in her eyes, and for that, I am forever grateful.

CHRIS' EMBRACE

Chris has been nothing but a knight since our world was turned upside-down. He listens when he knows I need to vent. He does not pass judgment when others would. He prays when there aren't words to make it better. And, he holds my clawed up right-hand in bed when I am in pain or just processing the harsh realities of this evil disease. I didn't expect anything but kindness when my hair starting falling out, but as I mentioned before, there is still a deep desire to be beautiful in your husband's eyes. I definitely haven't felt like a model since April. What was Chris going to think of his bride with yet another outward manifestation of sickness?

The night before we shaved my head, we were in bed and I asked him (holding back tears that were inevitably puddling in my eyes), "Are you ready to be married to . . . a bald wife?" Chris was silent for just a moment and replied, "I'm not concerned. I didn't marry you for your hair. . . I married you for your money." We laughed and I had that peace and assurance that you can only get when you've married your best friend.

So - how did Chris react when I returned home from my head-shaving appointment? He was waiting at the door for me. When I walked in, he just hugged me for what seemed like several minutes. He didn't have to say anything. I felt his immediate love and acceptance. Then, I took off my cap and he said, "You look great!" Then, he kissed my vulnerable, cold head. The following morning, he left for work before I woke-up but I found these post-it notes displayed throughout the house.

Needless to say, "the rest of the story" is just as you expected. My family and my friends have been nothing but encouraging and supportive of my new look. They continue to see past convention to my heart and love me just the way I am.

Father,
Thank you for placing precious family and friends into my life during this often "yucky" season. I do not deserve the love and compassion they continually show me. Thank you for extravagantly blessing me in ways I never would have experienced without having walked through this darkness. Amen.

Tuesday, July 23, 2013

A lil' update

"The Lord has done great things for us, and we are filled with joy." Psalm 126:3

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Just two "hotties" living it up on chemo day. Now that my hair is gone, I sort of laugh at all the folks I see wearing wigs during my chemo time. I'm like, "Who are trying to impress here!? We aren't fooling anyone." Of course, those folks are probably used to wearing the equivalent of a small pet on their head. I just haven't adjusted to the warmth and itchiness, and I suppose I prefer dealing with sympathetic looks because of my shaved head then wondering if a hair I can't feel is out of place. Call me the eternal control freak. It's just a strange sensation, but I'm sure I'll adjust to wearing a wig as it feels more natural. And you better bet I wear that baby out when I need to feel a bit more incognito.

Not-so-funny-story on chemo day, the guy who took my bloodwork (a guy who is getting to know me pretty well these days) actually asked me if Brooke were my daughter. After my deep belly laugh (because I totally thought he was joking), I said, "No, my daughter is three." Then, he proceeded to ask, "So, is she (meaning Brooke) your older daughter?" I mean, really!? So, I guess when I shaved my head I aged like twenty-five years. Maybe those chemo patients wearing wigs know something I don't. Maybe that is the way to go. At the very least, if I do decide to go out bald, I should at least be asking for the senior discount the next time I eat at Furrs Buffet. A word of wisdom to men . . . when in doubt about age, DON'T say anything. And, especially don't ask if the gal has just shaved her head and is going in for a chemo treatment. That's just cruel and unusual. However, we got a great laugh out of it. I mean, a great laugh out of it - several times that day.

Alright, back to business. I just wanted to send my faithful prayer warriors an exciting update. I am officially five days out of my tougher cycle of chemo and feeling good - so, so much better than the last go 'round. Sad to say, I have been hesitant to write an update just waiting for the ball to drop, but it hasn't. Well, for the most part. I actually wrote this last night and ended up not sleeping from 1-6am, so maybe a small ball dropped. The biggest issue continues to be fatigue. I'm just a tired girl most of the day - ridiculously and pathetically tired. Oh how I yearn for that energy to come back. However, my nausea has been minimal, except for at night. If I do experience anything, I pop a pill. The body and bone aches from the Neulasta shot (which increases my bone marrow post-chemo) have started to subside. If I can convince this stiff rubberband body of mine to stretch, the discomfort decreases as well. And, my appetite has been surprisingly strong. I have been able to eat just about anything that sounds good (regardless of how it actually tastes in my mouth - always a surprise).

Perhaps, the most exciting news is that I've gone to bed three nights without ANY narcotics. In fact, the first night following chemo, I remember waking up around 3am (a normal wake time for me) and thinking, "My arm isn't throbbing and this isn't a dream." It was surreal. It was beautifully surreal. I am taking some supplements that are supposed to increase the effectiveness of the chemo while limiting the side effects. I think those supplements along with the prayers of so many are working. Thank you!! I have a dear friend who was led to fast for me on Mondays, and I just want to tell you, sweet friend, thank you - it was an encouraging day.

I am so thankful for these moments of feeling more normal. I cherish them because I know more moments of not-feeling-so-normal will come again. I am especially thankful because yesterday we were supposed to fly to FL with Chris for a family vacation. He had a business trip and then we were going to surprise Alexa with a trip to Disney World. Of course, Daddy still had to go, but I guess that vacation will be put on hold until this gal can go without a wig (or cancer for that matter) and be a more convincing Mama of a cute lil' girl instead of her best friend. That will be a great day, won't it?

Thank you again for your continued prayers for total healing, for the chemo to do its job, and for the sweet days of grace I have been privileged to experience since this last round of chemo. They have encouraged my heart. If you would, please continue lifting up my sleep. It seems elusive anymore. I often wonder if I am already dependent on narcotics. I definitely don't want that to be the case, but I also don't want to have to use another type of sleep aid to actually rest. I am praying it is just some random chemo side effect. If I could run those stadium stairs again, I'm confident sleep would come. I'm just not there yet. Also, the unsightly sores on my neck have made another appearance. I am hoping to get a solution on how to make them disappear when we go to MDA this weekend. 

Thank you again for holding the ropes for me and my family. 

Thursday, July 18, 2013

Clean shaven

“Those who look to Him are radiant; their faces are never covered with shame.” Psalm 34:5

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No Photoshop magic here. The inevitable happened Sunday evening, and I called my dear, dear friend Shannon to see if she’d be willing to shave my head. She said she’d be honored and I was relieved. My hair had been gradually falling out for a week and I just knew in my heart it was time. I was waking up with hair all over my pillow. I could pull it out at will. I was constantly picking it off of my shirt and arms. Showering or blow-drying my hair was an act of trust. I would ask myself, “If I shower today, am I willing to see clumps of hair fall out? And, if I make it out of the shower with hair, will I have enough hair after I blow dry it?” I was continually cleaning out my hairbrush and it just got to be oppressive. Good, bad or ugly, my hair would be gone soon and I needed to face it.

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It was, of course, an emotional and deliberate decision. I asked my sis to join me in what would be an experience I wouldn’t soon forget. When my sis and I arrived at Shannon’s, she grabbed a few quick “before” images of me and then we headed to her back porch where she had music playing and a beautiful place for me to sit. The evening was so unusual. The sun was shining but there were dark clouds rolling in. The air was warm and still. The stillness provided this sense of peace and calm in my heart – even though there was fear and trembling with what was to come. We huddled together and said a prayer for strength and a reminder of His goodness while we wept. Shannon put two piggy tails in my hair and cut them as a remnant of what was and what is to come again. Then . . . she began to shave.

As she pushed the razor from my forehead to the nape of my neck for the first time, tears rolled down my face again. I could hear my sister quietly crying behind me and I glanced at Shannon to see tears rolling softly down her cheeks. And then, the strangest thing happened. As Shannon began to shave, delicate drops of rain began falling from the sky. It was as if the Lord was reminding me He really did love me (even when I couldn’t feel it right then) and He did not take delight in this difficult, disgusting moment. I felt Him whispering to me, “I’m crying too and the heavens are joining me.” It was a surreal moment with the sun still shining – dark and beautiful all at once. My sister quickly grabbed the patio umbrella to cover me while Shannon proceeded to shave my locks. I listened to songs reminding me of God’s sufficient grace, His continual presence and His goodness. I asked Shannon to leave about a quarter-inch of hair for me to see. When I looked at my reflection in the window, I felt like Fantine in Les Miserables and thought to myself, “Okay, I don’t look so awful. I can do this.” However, both my sis and Shannon believed it would be best to shave me clean as my hair would only continual to fall out only delaying the inevitable. So, Shannon began to shave again.

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This time I felt the razor sweeping across my skin – leaving it bare, vulnerable and cold. My head felt wet all over when she was done and when I reached up to feel it, there was a sense of horror and immense sadness. I didn’t know if I could stomach seeing my reflection this time. I knew it would be hard. I gathered up courage and quickly glanced at my reflection in the window. Horrow struck even deeper. I ran inside to see a better reflection in the mirror. I can’t say I felt like I was looking at a monster - just a very, very different looking Kelsey and I was sad. My first reaction, “God this is cruel. How could you allow this?” followed with, “I’ve got to cover this up.” I immediately ran upstairs to the stash of wigs and hats I toted along. I covered that bare head of mine and immediately felt better. Shannon and Hol joined me to see me model some of my head covering opts. They were excited with how they looked on me. Their excitement greatly encouraged my heart and reminded me this is only a season and I can do this. Thank you Shannon & Hol for sharing in this moment with me. I will never forget it. Your compassion, grace and strength sustained me when I felt incredibly weak and sad. As Hol and I drove home, we reflected on how perfect the evening had been. It truly was God ordained. (Chris actually told me later he saw a complete rainbow that evening.)

Since it is super late and I have my hard hit of chemo tomorrow (actually today in just a few hours), I will save Alexa’s and Chris’ reaction to Mommy’s bald head for the next post. In the meantime, I will share a bit of what’s happened in my life since being bald and some PRs for the my upcoming journey.

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Some precious sisters from my church threw a head-covering party for me on Monday. I was showered with love via beautiful scarves, fun hats and uber large earrings (a must when you are bald). I am modeling one of two wigs I picked out a few weeks ago. Ty sweet friends for loving on me in such a tangible way. And thank you for not gasping in horror when I took my wig off.

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On Tuesday evening, Shannon & Steve threw us a “God is (still) good” celebration for reaching this milestone and making it a memorable and fun one for Alexa as well.

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Alexa (and Mommy) were elated with the cake. Since refined sugar is very limited or off limits in my cancer-eliminating diet, I savored the moment to indulge. I mean really!? I lost my hair this week, this girl gets some sugar!

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Brooke, my bestie from college, flew in to spend the week with me. Yesterday, she treated Alexa and me to a girl’s day out with pedicures. Of course, my oncologist said I couldn’t have an official pedicure since I’m on chemo but I could sit in a massage chair and have them paint my nails with a nail color I brought. This, however, was Alexa’s first “official” pedicure and she loved it – suspicious at first but then pure delight. She loved her “mashage” too. Ty Brooke for being my source of “happy,” reminding me of what really matters in life and being here at one of the most vulnerable times of my life. I do love the fact Brooke asked me as she was getting ready if she could borrow my blow dryer – all the while I am sitting there bald as an eagle - I smiled and said she could use my straightener too. She said, “You see. I don’t even see that you don’t have hair. You’re just Kels.” Ty friend. You’ve always loved me just as I am.

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You can tell whose feet aren’t allowed to see much sun due to chemo.

I’ll end with this card written by a cancer patient. It is hanging in the Heads Above Salon at the OU Cancer Center where I found my wigs. (Alexa told me it wasn’t the wig store rather the jewelry store.) Anyway, I believe it reflects the heart of any woman faced with the dilemma chemo brings – hair loss. We often find when we’re faced with things we can’t control and that really frighten us, we are often much stronger than we expected.

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My prayer is that Alexa will look and remember her Mommy was brave, and that even without hair, even though she looked a bit different than other Mommies, she was beautiful. She wasn’t beautiful because of outward adornment. She was beautiful because Christ shined through her eyes, her smile, her big hugs, her unconditional love. I pray in a season when I know I will feel incredibly aware of what I have lost, I will also know what I have gained and be radiant for Him.

And yes . . . God is (still) good even when I have to wear an Under Armor beanie to bed to keep this noggin warm. By the way, the “God is good” watercolor I’m holding in this before & after image was also handmade by Shannon. This girl has got skeels! She gave it to me early in my diagnosis so I could be reminded of this Truth everyday. Love you, sweet friend!

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PRAYER REQUESTS
- My hard hit of round #2 is today at 9am. Please pray for optimal effects on the cancer cells with minimal side effects to the good cells in my body. If I must be still, pray my heart would run to Truth and not lies. Gratitude & hope not discouragement & despair.

- My nurse accidentally sped up my chemo drip last week by an hour. My doc at MDA said this was a partial treatment. Please pray against human error in these incredibly important treatments.

- I have a follow-up appt at MD Anderson July 28-29 to assess the effectiveness of the chemo. Our biggest prayer thus far is for total healing followed by the request that this chemo WORK (destroy and eliminate this nasty cancer). Please pray for encouraging news. If (rather when) Dr. B sees progress (right!?), I may jump up and kiss his bald head. I’ll be elated.

- Pray for Mommy to be brave when I step outside – be it wearing a wig, a hat or going free. Help me to find my identity in Christ not this world.

Wednesday, July 3, 2013

The valley of the shadow

Again, I apologize for a long awaited update. As a caveat, if I haven't posted in a while, you can expect I am probably having a difficult time with the chemo. The week before last was one of the hardest & most discouraging of my life. I wrote a few posts but never published them as I felt like they were too negative (btw - constant pain makes me negative) and I was trying to take the advice of Thumper's mother in Bambi. "If you can't say anything nice. Don't say anything at all."

The reality is this blog was never intended to be a cancer update site and that is what it's become. For three months now, every blog has been about an ugly disease I never wanted. As of last week, I resented that fact. I resented this cancer and I was upset with God for allowing it to be a part of my life. After three days of being bedridden, I asked God why He thought I was a good candidate for this. The last treatment of chemo (the meaner treatment of the two) took me a full week to feel normal again. Thank goodness the past week was my week off. I don't think there was any way my body could've handled more poison.
 
As far as side effects, I think I have been experiencing a majority of them - nausea, headaches, mouth sores (yes I'm doing the recommended mouth rinses), a very angry digestive system, dehydration, constipation, diarrhea (yes, I have the privilege of experiencing them both), extreme weakness/fatigue, constant body aches, low-grade fever & now everything tastes funky. To add to the fun, I have two disgusting sores on my neck. (We now know one is fungal.) And, my hair is officially falling out. I don't expect it to last much longer. I told Chris he must feel privileged to be marriage to such an attractive specimen especially with the port bulging out of my chest (which still freaks me out). I mean, really, I can't get much hotter than this!
 
As you can see, the last two weeks have been gross. However, the most discouraging thing is not the side effects (although I cringe at the thought of them). It is just my life in general. I was crying in bed one night waiting for the narcotics to kick in, and I told Chris, "This is not the life I wanted." It feels like I'm living a bad dream and the life I knew is passing me by - the life that made me smile. The life without cancer (well, the life when I didn't know I had cancer). My heart aches to miss out on time with Alexa. I couldn't even sit outside to watch her blow bubbles last week - I was too weak. I am not supposed to be tired and in bed for three days. I am supposed to take Alexa to swim lessons and to the park. I am supposed to run the errands and fix the dinners. We are supposed to be going to Disney World in two weeks. I am not supposed to be lying in bed for days at a time. I am not supposed to be reading Alexa books about why Mommy is sick and why her hair will be falling out (actually Chris does, because I cry while he reads them to her). I just "felt" God was cruel and distant last week. I know He isn't, but the rollercoaster of emotional and physical attacks chemo & cancer inevitably bring made me feel that way.
 
It is a challenging thing to put into words what this unexpected journey is like. I told my parents I truly feel like I am "walking through the valley of the shadow of death." When the poison is admitted and killing every rapidly dividing cell (good or bad) in my body, I feel like my body is fighting to simply hang on. And in those moments of discouragement & discomfort, I question if God's grace is sufficient because it doesn't feel that way. I feel nothing like myself. I feel weak, frail and incredibly ill. I can't even think. And by the way, although Psalm 23 should bring me great comfort, I've never really liked this passage because of verse 4 - "Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me, your rod and staff they comfort me." I've never liked that verse because walking through the valley of the shadow death never seemed appealing to me. It actually sounded quite frightening - with or without the Lord's presence & protection. I can't speak for you but I tend to avoid discomfort or things that frighten me. I wouldn't vote to walk down that valley, and yet, the Lord purposefully placed me in that very valley. What was making this experience more difficult was I didn't sense the presence of the Lord. It is the first time since this all started I really felt alone. The Lord didn't seem to care one bit that my heart was breaking about the reality of the battle I must face to live - a battle He ordained.
 
Again, no need to preach to me. I know God is near. I know He's never left me. I know He is loving and good and faithful (you can reference other posts if you don't think so). I guess I am just realizing this is part of the journey - believing when there is no physical evidence to prove it. It just is. God's Word is true. He is constant and He is who He said He is whether I choose to believe it or not.
 
So, I start my 2nd round of chemo tomorrow. There will hopefully be five more (meaning the chemo is actually working and killing my cancer). I wish I could be Pollyanna-ish about this treatment, but I honestly dread starting this three-week process again. I am finally feeling like myself (even ran 10 sets of stadium stairs at OU yesterday) and now I will go to have more poison put in my body and wait for the attack to come. Of course, I know all of this is intended to kill the cancer and grant me a cancer-free life. And I am grateful for this medicine. It's still hard.
 
--Please pray this chemo will work - that it will destroy all of the cancer in my body, including the growing, painful tumor in my right forearm. To know I could have functionality of my right hand again would be a miracle, indeed!!
 
--Pray for minimal side effects from the chemo as well as the side effects I deal with from the meds I take to deal with the chemo's side effects. It seems like a catch-22.
 
--In a matter of days, I will be forced to shave my head. Pray for my heart in all of this.
 
-- Pray for a believing & fighting attitude ready to face each day with a deep, abiding trust in the Lord and what He is doing - for joy, for peace, for strength.
 
--Pray I would take advantage of the time I feel good - spending it with my precious family & friends. And, I would see the yucky times as opportunities to be still & know He is God and He is still good.
 
--PRAISE! The nurse was able to access my port last time and it didn't hurt at all when she inserted the needle. In fact, I cried when she did it because I didn't feel anything. It was painful when the needle was removed and the port site felt awkward the rest of the day. Pray my body will continue to adjust to the port.
 
A now very, very precious friend & survivor of sarcoma sent me an incredibly timely & encouraging email at the end of last week reminding me of God's constant nearness in this battle. Tears flowed down my cheeks in thanksgiving & repentance as I was reminded He has never left my side. He is my Good Shepherd. I will probably need to play this on repeat for the next several days as I recover from another chemo treatment. Ty Marissa & ty for the many prayer warriors who continue to pray for me even when there aren't updates.

From the book, Praying Through Cancer, this is a prayer by Sister Sue Tracy that spoke to my heart last week and will be a prayer I continue to pray on this journey (thank you Melinda for this powerful book):

Christ Jesus, my Lord, thank you for the gift of my life. Help me deepen in my desire to live with You as I cope with this cancer diagnosis and its many realities. I want to lean on You with all I am.

Lord, You invite me to ask for what I desire. I want to live well and learn all I can on this present path even though it’s scary. It’s hard to deal with so many unknowns and face times when I am not in control. But, it is comforting to know that You want to walk with me one breath, one blink, one swallow and one heartbeat at a time.

Help me focus on You as my “Big C,” ready to crush and triumph over the “little c” that I am coping with now. Above all, I deeply desire that You are praised in this experience. If I can be assured of this, all that is happening is worthwhile for my growth and for Your glory.