Sunday, June 30, 2013
Prayers appreciated
Thursday, June 27, 2013
Recovery & chemo #2
Mommy & Alexa at Heads Above Salon at the OU Cancer Center today. I had a wig appt with a precious gal named Cathy while Dad & A enjoyed the fun at OU Children's Hospital (It really is amazing). Afterwards, they joined me. Alexa didn't notice the wall of wigs but went straight to hats & jewelry. She picked out our assembles. Maybe she should pick out my wig too.
Alright - I'll apologize up front. You deserved an update sooner but I just wasn't up for it. Truth is . . . chemo must've read my previous blog & picked up its own boxing gloves before my treatment. Chemo was much rougher than I expected. After all, this was my easy treatment. I didn't even feel a semblance of Kels until Monday. There were lots of tears, nausea, flu-like symptoms, low grade fever, fatigue, headaches & pain throughout my body (I'll stop there). I would cry in bed at night and ask Chris, "What if this doesn't work? Is this worth it? Did God pick the right person for this because I don't think I can do it. I hate all of this." I don't handle chronic pain or fatigue very well. My outlook darkens. I get very sad and discouraged. I am just not used to feeling awful all of the time. I was an active 34 yr old and some poison (that I'm willingly taking) took me to my knees. It was hard. I was too fatigued and hurting to blog and I didn't have a thing to say. . . not a thing. I felt like a horrible wife & mommy - not the first time on this unexpected journey. I mainly sat or laid down depending on what was more tolerable.
By the way, they didn't use my port for a few reasons. Hopefully, it will work today. This is my first chemo drip via my wrist. It burned like crazy. Alexa was disappointed my bandage wasn't green.
Needless to say, I am nervous about chemo #2 of this first cycle (The plan is I will have 6 cycles or 18 weeks of chemo). It starts today at 8am. This week includes 3 days of steroid intake, a longer drip with two drugs (and prob more steroids through the drip) and a crazy shot to stimulate my bone marrow the day after chemo (which I've been warned is nasty). Sounds exciting, huh?!
It is crazy late so I'll leave you with some PRs and ty again for constantly checking in with me even when I'm bad about updating. Maybe Chris should take over :)
PRAYER REQUESTS
-- For my port to be accessible and as painless as possible. I still dislike it. It hurts and creeps me out. Feels like a foreign invader in me. I know it will be good in the long run. Finding my vein for chemo #1 was challenging.
-- For courage. Fear is common as I face chemo and its nasty side effects. Ultimately, we pray all of this is working & killing cancer.
-- Pain management. Unfortunately, the tumor in my arm continues to grow. The pain is chronic & continues to limit the functionality of my entire right arm. It makes me cry in more ways than one. Die tumor die!!
-- For my eyes & confidence to be fixed on Christ & His powerful work within me, not on myself or the constant reminders of my cancer/chemo. I failed at this many times this week.
Thursday, June 20, 2013
The boxing gloves are on . . .
“This is what the Lord says to you: ‘Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God’s.’” 2 Chronicles 20:15
I know – a pathetic self-portrait – but I knew I couldn’t do a serious face if someone was behind the camera. Pretty intimidating, huh? Honestly though, this cancer should be shaking in its boots. You see, cancer, I hated, um no, I despised you since that fateful day on April 12. If I could’ve ripped you out myself, you would be history. How dare you have the audacity to lurk inside my body unannounced for five years. Who do you think you are spreading to my C7 vertebrae? I hate you because you have been sneaky and you are bent on destruction. Because of your nastiness, I have . . .
-- met with 8 doctors
-- gone to 16 appointments
-- undergone 6 MRIs, 4 CT Scans, 1 PET Scan, 1 Bone Scan
-- given numerous vials of blood
-- had 3 biopsies
-- had one round of radiation
-- had a port installed in me
And now, I will undergo 6 cycles of chemotherapy to destroy you and the microscopic traces you have left in my body. I realize this is only the beginning of blood work, scans, another surgery and possibly more radiation & chemo (along with their ugly side effects). And perhaps, many more gross days.
Yes, you may be smiling now. You may relish watching me cry as my head is shaved or when I feel weak & discouraged. You may think you have won. However, the bad news for you is that you chose the wrong person to mess with. Maybe you didn’t do a personality test before you chose me. Let’s just say you were a bit naïve. You see, I am incredibly strong-willed. I am stubborn to a fault. When I don’t like something, it’s really not a good thing for the object I dislike. I am competitive and don’t like losing. I just want you to know, my boxing gloves are on, and even though I can’t even fit my clawed-up right hand in this red padded glove, I want you to know there is power in my punch. You are still laughing, huh? Well, you better listen up . . .
-- I have A LOT to live for – I have an incredible husband, a precious daughter, a fabulous family & a growing circle of friends I love to pieces. These relationships have only grown stronger because of you.
-- I have the will to live – be it through laughter, nutrition, exercise or rest. I will do whatever I can to make sure my body is no longer a hospitable environment for your poison.
-- I have a brilliant medical team who has experience and technology to send you reeling. (By the way, how are your friends doing in my C7 vertebrae after some targeted burn treatment?) Fair warning - your “shock & awe” is next.
Oh, so you aren’t feeling threatened yet? Keep listening . . .
-- I have an vast ARMY of prayer warriors interceding on my behalf. And let me tell you, they are dedicated. They are praying for my total healing and God’s glory. This army is so extensive, I haven’t even met most of them. But we have one thing that draws us together in unity – we pray & believe BIG because we all serve a BIG God.
Bottom line, cancer, the God I serve, the God you had to ask permission to be allowed in my body, the God who spoke all of creation into existence by His spoken Word, the God who loved His creation enough to provide a rescue plan – He is my God. Yep, the God of . . .
-- Noah
-- Abraham
-- Jacob
-- Joseph
-- Moses
-- David
-- Daniel
-- Esther
-- Peter
-- John
-- Paul
He is my God too. He doesn’t work according to the ways of man. His ways are higher. He loves to do the impossible. Healing is in His hands. He is jealous for His glory and He desires to do immeasurably more than we could ask or imagine. He is always good and faithful. He is sovereign. And, He is in control . . . not you!! (If you don’t believe me, I will send you scripture references for all of the above because I know you despise Truth. You flee from its presence.)
Ultimately, I can self-will you to go away but I am powerless to do so. I realize my tough talk and ammo (boxing gloves & all) is pretty pathetic. But with God on my side, this battle is no longer mine. This battle is His.
I am reading Daniel right now, and I am encouraged by what the scriptures say about him . . .
“So Daniel was taken up out of the den and no injury whatever was found on him, because he had trusted in his God.” Daniel 6:23
Daniel was delivered from the mouths of ravenous lions, without even a scratch . . . why? . . . because Daniel trusted in His God. There wasn’t anything special about Daniel. He wasn’t super brave or extra-strong because of self-belief. His strength (and ultimate deliverance) came from His deep, abiding trust in His Father. That is where I take my stand. I face my first round of chemo tomorrow. It feels like my ravenous den of lions, but I am trusting in my God for deliverance from this terrible disease. I know, if He chooses, He will heal me completely and He WILL receive all of the glory. So, cancer, if you haven’t felt the storm a-brewing, it’s time to put on your big boy pants. We are ready to fight and we’ll be doing most of it on our knees, because my General is God and He is a God of hope and healing!!
”Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character, and character, hope.” Romans 5:3-4
PRAYER REQUESTS
-- I go in tomorrow (rather today) at 8:30 am for my first round of chemo. It should take 2 1/2-3 hours (start-to-finish). I would include the side effects but didn’t want to write four pages and this is only the side effects for my first drug.
-- We are praying, ultimately, that the chemo will be effective (eradicate all cancer & evaporate tumor on my right forearm).
-- We are praying for limited or no side effects.
-- For courage, strength and a deep trust in my God and what He’s doing. I am nervous about this next step. I am anxious about what I’ll see, hear & experience. I want to be light, so I pray my personal fears would be overshadowed by Him within me. For encouragement and His goodness to be evident throughout the day,
-- My port is doing much better today, I was greatly encouraged by the healing progress but it is still very tender at the site. Please pray the insertion needle would not be horribly painful, as I’ve been told to expect it to be on the first try especially so close to the port being installed.
-- Of course, we continue praying the radiation is working mightily in my C7 vertebrae.
Okay gang, I hope you are ready to fight with me. I need you all like never before. Let’s go God and show that cancer You’re boss!
Tuesday, June 18, 2013
Port update
I had my port procedure yesterday. As you know, I wasn’t excited about it but I felt His peace & grace covering me as I always seem to in such a moment as this (I am confident much of this is due to your constant intercessions on my behalf – thank you). My oncologist said I was allowed to intimidate my surgeon by telling him I didn’t want the port to bump out very much but show enough for the medical staff to easily access it. So, I put on my mean face (yeah right) and threatened him with my demands pre-surgery. (I don’t know how effective my mean face was, but he didn’t seem to think my requests were out of line.) Perhaps one request I should’ve mentioned was pain management but more on that later.
--One random fact, this procedure does not require being fully “under” like a regular surgery. Although I did fall asleep – the anesthetic is similar to what happens during a colonoscopy (never had one but some of you might relate). Apparently, I gave all of the OR crew a good laugh because I talked the whole time. I must add, one of the techs was prompting me with questions . . . mean! I even told the surgeon the topical ointment he applied to my chest before installing the port was “spicy.” Hmmmmm – maybe he was getting back at me for making demands. Regardless, he was still smiling post-op, so I am glad I could make his Monday a bit brighter without even knowing I did. I just hope the same OR team isn’t around when I get it removed – I will be so embarrassed. I’m sure I was the topic of conversation most of the day.
However, no laughing for me. When I woke-up post-op, I was in immediate pain. Much as I had feared, I felt every piece of that port inside me from the port head to the catheter. I felt the bump coming out of me. It hurt in my chest, my underarm & my arm. It really, really hurt. Keep in mind this is my left side and my “good arm.” The nurse actually called the surgeon back in because I was convinced something was wrong. I haven’t hurt like this thus far and I feel like I am pretty tough. The surgeon didn’t seem to be concerned. He said it would hurt for 3-5 days.
I came home in pain and have been in pain since (this means I am very grumpy and occasionally have tears streaming down my face). We try to keep the area iced and I am finally taking more meds to ease the pain. Of course, the doc recommended narcotics to control the pain but I don’t like taking them at all – much less during the day because they totally knock me out. So far, lots of Ibuprofen seems to be helping. I am unsure about chemo on Thursday as I’m positive I would punch or kick someone if they tried to touch the port site. It is so, so sensitive. (Trust me, I wouldn’t hit someone on purpose. It would just be a knee-jerk reaction to the pain.) Plus, the doc told me it would hurt to have the needle inserted the first day of chemo anyway. I didn’t realize the port itself would be so painful.
--To my “now cancer-free friends,” was this your experience?
We’ll see what happens. Again, just a few more gross days on this unexpected journey. Another frustration is the port took away my good arm. I cannot raise or move it without wincing. I cannot bear weight on it either, so I am sort of a mess that requires lots of help. It was quite a feat that I showered and blow dried my hair unassisted today. No telling what I look or smell like though. I guess that is one pro to going bald – no messing with my hair, just towel dry.
Thank you for checking in and continuing to lift-up me and my family. They have to be my cheerleaders when I don’t have any cheer in me (and I didn’t have cheer yesterday or much of today). Pain really brings out the “yucky” in me – especially when it wasn’t pain I ever wanted, unlike the pain of childbirth and jaw surgery. I willingly chose those avenues because I knew the end result was totally worth it. I’m counting that the precious blessing at the end of “this journey so oft filled with pain” will be the gift of my own life – a beautiful cancer-free life – with a lot of character marks to show for it. Surprisingly, I don’t mind the marks. After all, Jesus has a few of His own and they sure mean a lot to me!
I’ll end with the fifth verse to this precious hymn which has ministered to me for several years, especially on days like yesterday.
Trust Him when dark doubts assail thee,
Trust Him when they strength is small,
Trust Him when to simply trust Him
Seems the hardest thing of all.
--From Trust Him When Thy Wants Are Many by Lucy A. Bennett
One more highlight from yesterday. We have started asking Alexa what she’s thankful for before bed each evening. Last night (after mentioning her basketball and stars on the canopy of her bed), she said, “I am thankful we are all here together . . . minus Holly.” You can tell who our little one has been surrounded by for over two months now – Mommy, Daddy & lots of family. We are thankful for all of the help and support too. Mostly, I am thankful to kiss my daughter goodnight. It’s a gift I took for granted.
And . . . I am thankful for you. Love to you all, my beautiful team of hope!!
Sunday, June 16, 2013
Overwhelmed
“Though He brings grief, He will show compassion, so great is His unfailing love.” Lamentations 3:32
This is a small sampling of the books I have been trying to read – some given to me by dear friends as I walk through this season, others – personal favorites. This is when I wish I could read & retain information as quickly as Chris.
And then, this is a glimpse of the litter of information thrown at you when you bear the title “cancer patient.” This doesn’t begin to scratch the surface of the piles one has to surf through, digest & try to make sense of when a cancer diagnosis seems overwhelming enough. Mark my words – all of this paper waste will be burned in a bonfire when I am cancer free (you will be invited). I don’t want anything to do with it now and I most definitely won’t ever want to see it when this is said and done.
I must provide this caveat before I immerse myself in this post. I should know by now when I write a post as the one I did before - a post explaining what I am learning, a post declaring how God’s nearness is so evident to me, a post suggesting cancer could be a gift – a time of testing or trial will come. It’s almost like clockwork – I will experience several days of peace about this process and then I’ll hit a really low, low. It’s like God or Satan or perhaps both want to see if my proclamations are legit (I am not stating this as theological Truth, just my personal observation on this cancer rollercoaster). As Tullian Tchividjian shares in his sermon series, Job: Gospel of Suffering, “Satan roams the earth to devour faith.” And goodness, he made a pit stop at my door this week to wreak a bit of havoc on my emotions.
I won’t sugarcoat anything I share with you, so I will just say it like it is – the last three days have stunk. I like how Chris puts it when he has a not-so-fun day at work. He won’t complain, he’ll just say, “It was gross.” Yep – three absolutely, totally, beyond-a-shadow-of-a-doubt gross days. I will say it until I am blue in the face – I HATE cancer! I HATE cancer! I HATE cancer!
Unlike Chris, however, I will vent a minute (You can skip to the next paragraph if you don’t like venters. It’s part of how I process) . . . I never wanted to learn a thing about cancer (and trust me, it will take a lifetime to accomplish this, not two months). I never wanted my life to be dictated by appointments, tests, surgeries, radiation and especially chemo. I didn’t want to change my eating regimen. I didn’t want to cancel vacations to Laguna Beach, northern California, Disney World & Colorado to be substituted by trips to Mercy Hospital & MD Anderson. I didn’t want to lose almost complete functionality of my right hand (I am typing with one hand plus a pointer finger) or entertain the thought I might lose my right arm altogether (who will teach Alexa how to shoot a beautiful jumper)? I didn’t want my entire family’s schedules to be turned inside-out. I don’t want endless poison, narcotics & steroids in my body (nor to endure the possible side-effects be it short-term or long-term). I don’t relish living with chronic pain – especially at night. I don’t enjoy being limited, because of my pain & tumors, in what used to be easy, everyday tasks. I don’t like feeling constantly overwhelmed by the decisions this disease forces upon me. I don’t like that my precious time with Alexa is being robbed. I don’t dance around knowing my longing for a home filled with children may only be a longing or put on hold indefinitely. I don’t feel warm & fuzzy when people in the medical field gasp and look at me in pity saying, “Oh . . . you have that kind of cancer?” I don’t like facing the reality that I have to fight to simply live – I can’t just take it for granted like I did the past 34 years. And (hear me ladies), I don’t want to lose my hair, my eyebrows, and heaven forbid, my eyelashes. Perhaps that is the most silly of all, but it is a big one for me as of lately . . . if the lashes do fall out, we will be investing in lash extensions. I suppose that can come out of my hair care budget.
As I near the beginning of my most dreaded treatment therapy (and let me say, regardless of how I feel right now, I am incredibly grateful for this therapy & I am confident my God is bigger than all of this), I have wrestled with all of these thoughts and more. I have cried so hard my sinuses and eyes have completely swollen . . . so hard, tears refused to come - just ugly guttural groans. I have shouted in anger about how much I hate this, how cruel and unfair this feels. I have looked at others my age and been jealous because for some reason, I have to walk through this. And yes, I have asked the unanswerable question – “Why Lord?” The past three days I have grieved (and unlike Job, I have sinned in the process). I have mourned the loss of everything I knew to be normal – now just a distant memory (but one close enough I still long for it). As our associate pastor told us, “Your lives will never be the same again.” I am totally cognizant of the fact that could be an incredibly wonderful thing. It’s just really hard for me to believe right now when I’m facing some very yucky stuff. Stuff I never, ever wanted to face. I pitied the person who had to take chemo. Now . . . I am that person (a deep, sad sigh). I resist change. I am horrible at being flexible and I crave certainty. Ain’t none of these things happening in my world anymore – except the certainty I will have to embrace my new lifestyle, accept that everything has changed & live in the flexibility that cancer forces upon you.
Cancer is an ugly thing, friend. I know I don’t have to tell anyone that. I’m just saying, for me this week, it was really, really ugly. Did I mention I HATE cancer!? And as I told Chris in the midst of one of my sad/angry messes, I know all of the things I feel and say aren’t true but it doesn’t change the fact I am feeling them in this moment. Goodness, cancer is filled with ups, downs and lots of in-betweens . . .and I thought infertility was a rollercoaster!!
Now that I’ve shared a bit of what’s been going on in my heart since returning from MD Anderson, I would also like to share some things that have encouraged me in the midst of my darkness & discouragement.
-- A precious friend reminded me this is temporary NOT forever (Thank you Jamie! I needed that more than you knew the day you sent that to me).
-- Here are a few quotes from the Tchividjian series on Job (it’s a must-listen & thank you, Marissa, for sharing). Also his book, Glorious Ruin, is amazing (thank you Ryan for passing that along)! The book was the fruit of his sermon series. I can send you the link to the sermons if you are interested.
“To grieve as a Christian is an act of worship. It is a statement of faith for Jesus to return.” (Check out Romans 8:18-39)
“There will always be mystery in the ways of God or He would cease to be God and we would cease to trust Him.”
“God uses evil, sin, disease & suffering to show us more of who He is. We wouldn’t know certain attributes of God without sin.”
“God ordains suffering so He can be glorified. I can be sanctified, and the enemy is defeated.”
“Deep suffering leads to deep surrender. It forces you to let go of the things you hold more tightly than God.”
--My response to the many emotions & fears I face should be a fixed gaze on my loving Father (thank you for the reminder, Marissa). “Our God, will you not judge them? For we have no power to face this vast army that is attacking us. We do not know what to do, but our eyes are on you.” 2 Chronicles 20:12
--Finally, I will end with this passage my mother-in-law prayed for me on one of my bad days. It is the cry of my heart . . .
“I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; He set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear the Lord and put their trust in Him.” Psalm 40:1-3
PRAYER REQUESTS
-- My port will be put in on Monday (June 17) at 11:30am. As you know, I am not excited about this foreign thing being in my body but I know it is necessary and for my good. Pray it wouldn’t stick out, gross me out or get infected.
--The plan is to start chemo Thursday (June 20). We haven’t received a start time. My chemo regimen is a three week cycle. Week one, day 1 – one drug (approximately 1-2 hours). Week two, day 8 – two drugs (approximately 3-4 hours). Week three – rest, rebuild & recover for next cycle. There are also steroids and a shot in the mix. If the chemo is effective and I tolerate it well (our prayer), Dr. Benjamin would like to do 6 cycles (18 weeks). The big prayer here is that chemotherapy would work – meaning it would shrink or totally evaporate the tumor in my arm (so my arm could be saved) and eradicate microscopic traces of cancer in my body. NO MORE CANCER – ever!! We are also praying boldly for God to lessen or eliminate side effects. Yes, we believe He is big.
-- The pain in my right forearm continues to increase. Sleep seems elusive. Pray I can find a way to manage the pain and get some rest without heavy narcotics. Prayer for the pain in my upper and lower back would be appreciated as well.
-- Chemotherapy will be my first routine interaction with people just like me. Pray I can be a light & blessing in the midst of fear & discouragement. We know this next step will be a marathon. Pray for God-sized endurance for all involved.
-- From what we understand, the targeted radiation to the C7 tumor is still at work. Please pray it would totally erase those cancer cells.
-- It is now 1:30am, so my precious army of prayer warriors, please fill in the gaps as you always do so faithfully.
Tuesday, June 11, 2013
Be still my soul
"Be still and know that I am God." Psalm 46:10
Yesterday, I awoke to this verse floating through my head. I knew full well I would have to be completely still for my spine radiation and rest fully in the knowledge my God was in control of every targeted beam of radiation strategically planned to destroy my C7 cancer. Not only that but I also had to trust that every power-packed beam was bypassing crucial anatomy settled close by. If I let my mind wander at all yesterday, fear and dread crept in. So unlike most mornings in Houston, I didn't get up and walk. Rather, I spent most of my morning meditating on Truths and listening to music that has meant so much to me through this season. I also enjoyed some playtime with Alexa and met with a dietician at MDA.
All in all, I would call yesterday surreal. Surreal in the fact I was finally beginning my 1st round of treatment. Surreal to think that several targeted radiation beams - beams I wouldn't even feel - would be effective in destroying my C7 cancer forever (at least, that is our prayer). Surreal that in all of this - crazy mask and all - I felt a strange, settling peace. It seems each step of this journey draws me closer and closer to Him. I suppose the further down this road I go, I recognize my limitations and realize He is ultimately the only one to whom I can run. I am utterly dependent on Him.
Over the past several weeks, I've felt His nearness in a way I never have, and His deep love for me is sensed through this constant awareness He is with me. It seems scriptures I read or songs I sing are personal messages from Him to my heart (and I typically cry with this realization). Even more so, my trust in Him and what He's doing is growing - even when it seems like a hiccup. It's just a crazy, crazy thing!!
For example, my dear friend, Shannon, brought up the fact He chose my C7 vertebrae. Of all the vertebrae - the C7 would be the one most representative of Him (C - Christ / 7 - for perfection, wholeness, completion). Even in the midst of a tumor, He was reminding me He hadn't forgotten about this vertebrea but rather He was right in the middle of it, in total control and desiring my wholeness (besides that silly cancer had no business camping out there in the first place & it was time He took care of it).
I remember at the onset of my diagnosis, a gentle-hearted, Godly man whom I deeply respect told me my diagnosis (cancer) was a gift. I remember wanting to (first) slap him and (second) put my cancer in a box, wrap it up and hand it to him with a bow on top saying, "Great, you take this gift then!" But, because I know this man walks intimately with Jesus, I knew there was Truth in what he said. No, he didn't intend for cancer to be "my gift" but it has been the means by which I've been forced to look into my Father's eyes and say, "I'm frightened by all of this, really scared. There is nothing in me that wants to walk through this, but I know you have something for me in this. Perhaps something for others too. Something we would all miss otherwise. So, help me to know you more intimately through this (and be brave), so at the end of this, I can say with confidence, 'Cancer would have never been my vote but the journey with Jesus has been a gift.'" Of course, experiencing absolute healing, watching Alexa grow into a women of God and turning old & grey with Chris would be deeply appreciated answered prayers demonstrating His undeserved goodness :)
Thanks to God's never changing faithfulness, He has shown me Himself in so many ways - through His peace, laughter, mini-miracles, blessing upon blessing and oodles of answered prayers & encouragement from you (the most amazing army of supporters a gal could ask for). I fully anticipate more and more of God's goodnes in the days to come. You may think that seems a bit pretentious but I can tell you it is only through experience I know this to be true. He is ready and waiting to knock our socks off with . . . Himself. And, my friend, He is good. Just like He promises in Psalm 34:6, "Taste and see that the Lord is good; blessed is the one who takes refuge in Him." I pray this is your personal experience as well. So . . . much like I had to be still yesterday and rest in Him, may I also encourage you to simply be still and let Him be your God today!
If you happen to be still & want to pray, here you go . . .
- PRAISE!! Ty for your continued prayers for Alexa. She did very well in Galveston & Houston. She was our little rockstar and is even learning to sleep in the car
- For the C7 cancer to be totally eradicated by the radiation treatment. (I will go to MDA in three months to check on the cancer death toll).
- For minimal to zero side effects of radiation. I am currently experiencing pain in both of my shoulder blades, lower back and right forearm. Some might be due to radiation and some due to the position I was in for the MRI of my right forearm. Other factors - traveling & sleeping in three different beds.
- I have been told I can start chemotherapy in OKC this Friday. Please be praying about the timing of all of this. There's a lot to sort through between now and then - emotionally & physically. I will also have to decide if/when I would have a port inserted. (Yuck - not excited about that one bit.)
- I will be attending a chemo class on Thursday from 2 to 4pm. Please pray I can retain the information I absolutely need to know, and God would guard my heart from what I don't need to.
- For courage in the next step. I have dreaded chemotherapy since I heard the word - hair loss, nausea, fatigue, long-term side effects (not my idea of a summer vacation). Perhaps I'll make some friends along the way & we can walk through this together :)
Monday, June 10, 2013
One step closer
Saturday, June 8, 2013
Sneak peak
Friday, June 7, 2013
I'm in!!
Thursday, June 6, 2013
No news
Wednesday, June 5, 2013
Keep smilin’ (plus a prayer request)
Well, I didn’t intend on including a prayer request with this post but you get one for free. :) I just received a call from MD Anderson letting me know our insurance has denied my stereotactic spine radiation. So, my surgeon, Dr. Brown, will be talking with the medical director of BCBS tomorrow to explain why this procedure is necessary and not experimental. If the insurance continues to deny treatment, then MDA will appeal my case, and my treatment could be delayed or cancelled altogether.
Of course, my stomach dropped when I heard the news. However, I did not despair (as I would’ve been more inclined to do over three months ago). You see, God has moved some pretty big mountains for me to get to where I am today. No, He hasn’t chosen to heal me miraculously but He has made a way for me to be healed through medicine & oodles of faith. He is so far above insurance claims. He is my mighty God! (I felt Him whispering that to me even as I speaking with the gal at MDA). I hung up and went to Him in prayer letting Him know I trust He knows what is best for me and my treatment. End result – peace.
Add to this, we are heading to Galveston this weekend prior to my treatment for a photo session before I lose my hair. And, I am also trying to schedule an MRI and a meeting with a dietician during my time at MDA. I know He knows all of this too. So . . . I’m soliciting all of my prayer warriors to go to our mighty God and wait in expectation for what He will do!
I will know what the insurance decides sometime tomorrow and will post an update. Love & appreciate all of you!!
“Jesus replied, ‘What is impossible with man is possible with God.’” Luke 18:27
**Oh yes, and in the meantime, I will keep the corners of my mouth on the upward swing. My parents paid waaaaaayyyyy too much for me not to show off my pearly whites. And goodness, we never know how our smile will impact another person’s life (or our own). I honestly believe my pain lessens when I am smiling or laughing, so I bought this little framed quotation as a reminder when I’d rather be a “grumpypants.” (My husband’s affectionate nickname for me when I’m less than bubbly). And yes, that nickname makes me smile too.
Monday, June 3, 2013
Countdown to radiation
Believe it or not . . . that is my bust and I’m not even famous. But more on the process of making that mask a bit later. Indeed, the countdown has begun for my stereotactic spine radiation (Can I hear an “amen?”). I will only have one round of targeted radiation to my C7 vertebrae at MD Anderson on Monday, June 10 at 3pm. As Chris mentioned in the previous post, we met with my radiation surgeon, Dr. Brown, on Thursday and he better explained stereotactic spine radiation and what it entailed (reference my sweet mask above). We really liked Dr. Brown, and once again, we see God’s hand in that since we were originally supposed to see Dr. Settle. First of all, Dr. Brown is tall and you can always trust tall people. Secondly, he was warm, genuine and incredibly Type A . . . just the way I like ’em. He was answering my questions before I could ask them. Dr. Brown said they were ridiculously OCD about this procedure with several accuracy checks (for which I am grateful), so I believe the total process from start-to-finish will be 1 hr 45 minutes to 2 hours – although the actual radiation time will be less.
He also relayed encouraging news, and this girl with a rare cancer is always up for that. He said this type of radiation is short but very powerful (there is basically two weeks worth of old school radiation packed into this under-an-hour blast of targeted and highly precise radiation). Bottom line – he said even five years ago, conventional radiation wasn’t very effective on a radiation-resistant tumor like mine. However, with this highly precise radiation, it is 90% effective. For once, a statistic that makes me smile and that stat doesn’t include the power of prayer and a mighty God (Can I get another “amen?”). So, our biggest prayer concerning this radiation is that it will work and totally eradicate the tumor in my C7 vertebrae – F-O-R-E-V-E-R. My heart’s desire is to walk away from this treatment feeling confident and 50% clean - one tumor down, one more to go. The other good news is that side effects to this radiation, be it long-term or short-term, are minimal (sore throat & inflammation). Even when they are serious (paralysis), the percentages are low (1%). He said I could go home the day after treatment and start chemo shortly after. Again, our prayer is that God will protect me from any potential side effect and I will leave MDA with a spring in my step, smile on my face, and a nice mesh pattern imprinted on my forehead. Speaking of . . . here’s my customized bean bag bed and mesh mask.
On Friday, I believe I had seven people, including a physicist, shaping this bean bag, air-infused bed around my body and telling me to relax and breathe as they formed this custom mesh mask to my face as I rested my head on a pedestal. They said, “Pretend it’s a warm facial.” Yeah, right! They marked my stomach with permanent markers & clear tape (see below) and ensured my spine was lined up perfectly from head-to-toe, thanks to CT scans. Because my eyes were closed, I have no idea what else they did but I was formed in this hardened mold for about 45 minutes and I believe it will be very similar the day of the procedure. I am thankful for Ativan (a form of Valium) and encouraged to know I have a nice long neck perfect for the procedure (at least that is what they told me).
Here I am “picking” on my alter ego. Below are the markings I am supposed to keep on my stomach for another eight days.
All in all, our time at MD Anderson was much more encouraging than our first go-round. We are so grateful for God’s specific provision and the care of so many during our time at MDA. I will leave you with some specific prayer requests as well as some fun photos of Alexa. There were some rough spots for her (and Mommy) throughout the week, but as a whole, she had a contagious smile on her face. One I am always eager to see after a day of appointments and tests.
PRAYER REQUESTS
-- As you can see from the mask, I will be immobile during the radiation. I am still a bit freaked out about needing to sneeze, having a muscle twitch, or let’s be honest, having a panic attack during the radiation. Would you please pray for peace and indescribable confidence in a big God who can hold me safely in His hand?
-- That this radiation would be effective in eradicating the tumor from my C7 vertebrae forever & for a speedy recovery.
-- For logistics to be hammered out concerning the start date of my chemo in OKC. For clear communication between Dr. Benjamin at MDA & Dr. Keefer at Mercy.
-- I also need to have another MRI of the tumor in my right forearm prior to chemo (this will serve as the baseline to measure the effectiveness of my chemo). We are trying to get that scheduled while we are at MDA.
-- For a restful week at home but discipline to continue getting strong through exercise, nutrition & time with Jesus.
-- That our attitudes would be an honest reflection of Christ to those around us.
-- For healing – total & complete God-glorifying healing!