The Truth About Being Bald.

“Daddy where’s her hair?”

“Hey look, that girl is bald!”

“You have a very nice shaped head.”

“Well at least there’s no lumps!”

“You look like GI Jane”

“Mr. Crebbin’s twin!?”

So I lost my hair. Most of you know this by now. But I want to share the experience with you, the truth about losing your hair.

The moment you realize you are going to lose your hair is traumatizing. I mean at first the experience is kind of what you’d imagine, or what you see on TV. Everything you do makes your hair fall out. When you sleep you wake up with hair all over your pillow, when you put clothes on you have hair all over your front and back, when you try to brush it or put it up, you end up with fistfuls and a sink covered in…hair. It’s annoying, it’s terrifying, it’s devastating, and you can’t control it. So I watched as my hair went from luscious, thick locks, to Smeagle stringy strands. Bald spots came through and it aged me. So I decided to shave it off.

I had a certain numbness as I watched the hip hairstylist shave away the remnants of my hair. I didn’t cry,  but I wasn’t okay with it. I stared at myself in the mirror, once again unable to recognize the woman sitting in front of me. I posted a photo immediately after stating that I was free. I must clarify though, I was free from the agony of losing my hair in giant chunks throughout the day, but I wasn’t free from the insecurity of being a bald woman.

The first few days without hair were spent at the doctors, I felt, for the first time, like I belonged there. I felt like a true cancer patient. I walked the halls feeling this weight of illness, like everyone saw me as I truly am, a sickly, weak, dying cancer patient. I immediately put myself in the box that we all put every bald cancer patient in. I felt a new identity, I felt pitied. It only got worse when I went to public places like the airport. I could feel the heat of strangers staring at me. I imagined what they were saying in hushed tones. I stared at the floor, I made no eye contact, and I only focused on my furry new head. I hated how I looked, I hated seeing myself in the mirror, I hated passing by my reflexion and seeing an empty space where my bouncy curls used to be. I hated that I had no choice, that no matter what I did my hair couldn’t be saved.

I tried a wig. I wore it on the second leg of my flight to try and blend in. I felt almost worse. I felt like I was wearing a disguise and everyone new it. I didn’t feel like a bad ass secret agent, I felt ashamed, more like a criminal wearing a different identity to escape. I know it must sound crazy. I mean here I have had countless surgeries leaving me swollen and scarred. Here I have had angry red lumps and black nasty stitches, and I really was okay. I’m not sure that I can totally pin point why this was so different for me. Maybe because it seems so pointless. Maybe because it feels like I was robbed whereas I agreed to the scars. Maybe it’s because the scars were symbols of healing and losing my hair just seemed like it only symbolized sickness. Maybe because it’s true that hair is a woman’s pride. All I know is, it’s hard.

So how did I get to where I am right now? Making jokes about being bald and choosing that over my wigs and scarves? How can I look in the mirror now and not burst into tears? Or speak to someone with confidence without looking down?

It started when I was preparing to see my husband. I was absolutely terrified. We had been apart for 2 weeks and I was shaking at the thought that our reunion would be me sporting my new “cancer do”. I imagined all the things he would think, I imagined him being disgusted and un-attracted to me. I knew of course that he’d never make me feel bad or say these things outlaid, but I imagined what would happen in his mind. So, when I first saw him, I wore my wig. But the moment I had to pull off my disguise, to reveal the real me, it was like a picture of the gospel. My oh my. Bear with me. Here I was covering what I thought was a HUGE flaw. I was terrified to show it because I felt unlovable. Don’t we do that with God? Try to present ourselves in this nice little disguise? Put a wig on our sins or flaws or past because we feel unlovable? Well lemme tell you something. When I took my wig off to expose my bald head to my husband, I broke down in a guttural cry. You know why? Because he looked at me with tears and said, “I love you so much, you are a true beauty.” And I knew in my soul that he meant it. All those things I made up in my mind, all my reasoning and justification for being unlovable. The ugliness and hatred I felt toward my flaw, was completely accepted by my true love. And that’s the gospel kids. Because the unconditional love that Adam showed me when I felt my ugliest, is the unconditional love that God shows us when we are our ugliest. When we take off that wig before God, He doesn’t look at us with disgust, or think we are so ugly and beyond lovable. No, He looks at us and says, “I love you so much, you are a true beauty.”

So it doesn’t matter what the world thinks, or says, or what whispers I hear, or what lies I tell myself. I am loved, and I am loved despite my ugliest parts. I AM LOVED PEOPLE! I am loved by the creator of the flipping’ universe! So I will flaunt this bald head of mine and I will walk in my true identity, as a daughter of the King! Heck yeah! Take that!

 

I’ll Fly Away.

Here I am, 2 weeks post chemo, and so far it’s been pretty okay. I was pretty sick the first week, the second week I felt relatively normal besides some extreme fatigue, and this week, just when I expected it would all be out of my system and I’d be back to “normal” I was sick in bed for 2 days. I just saw a gal that I used to work with on Monday and I told her that chemo has been better than I thought, I mean I didn’t even lose my hair! When I was a little kid (I think I’ve told you guys this before) I used to pull big balls of hair out of my head when I showered. It was just the normal shedding but as a kid I used to get nervous that I had cancer. Well, the morning after I told her that I’ve kept all my hair, I relived that moment when I was a kid, but this time, I have cancer. I just sat in the shower, staring at my fist full of hair in shock. No one said it would hit me, 2 weeks post chemo, when everything seems to be getting better. It’s been extremely discouraging.

 

When I’m super discouraged, or feeling scared about dyeing, I listen to Negro Spirituals. I have learned so much in listening carefully to the lyrics. I encourage you to check them out, it will challenge your perspective on death. I mean here in America we have so many resources, so many options to “escape” our suffering. I get a new “cure” sent to me every single day. We have modern medicine, we have all these special diets, we have essential oils, we have pills, we have clinics, I mean the list is astronomical! Only in America can we actually be overwhelmed by all the resources and “cures” and documentaries and research. While I am grateful for the abundant resources, I think it’s created a certain expectation in our culture. Have you ever noticed that we have this expectation that we should die at a certain, comfortable, old age? If death comes before then it’s not fair, or it’s unjust, and we do everything we possibly can to prolong our life and escape death.

As I struggle with this sense of entitlement, I listen to Negro Spirituals because they are baffling to me. Here you have a seriously suffering people. These people were slaves, living with death being prevalent in all ages. Most of the death they experienced would seem to be absolutely unjust and horrible. Sometimes even at the hand of another. Yet, their songs are some of the most joyful and inspiring songs I’ve ever listened to. They are songs of passion, gratitude, and a genuine joy in longing for heaven, despite their circumstances.

I mean check out some of these lyrics you guys:

“Swing Low, Sweet Chariot”

If you get there before I do,
Coming for to carry me home;
Tell all my friends I’m coming too,
Coming for to carry me home.

“I Don’t Feel No-Ways Tired”

Oh I’m seeking for a city, Hallelujah,
For a city in to the Heaven, Hallelujah,
Oh the brethren travel with me, Hallelujah,
say will you go ‘long with me, Hallelujah.

“Listen to the Lambs”

Come on sister with your ups an’ downs,
Want to go to Heaven when I die;
Angels waiting for to give you a gown,
Want to go to Heaven when I die,

I mean that’s a teeny sneak peek. So as I listened I thought to myself, “How do I, during this trial, in the midst of my suffering, as I wonder if I’m going to die, get to the place where I can sing joyous songs of heaven rather than complaining that I deserve more?”. Well, the answer is, keep my eyes on Heaven.

All the Negro Spirituals are about the excitement of going to a better place, of meeting the Savior, of spending eternity in a world with no suffering. I mean this is NOT as good as it gets folks, and coming from a girl who has been fighting for her life for the last 2 years, who has had 11 biopsies, face changing surgeries, failed immunotherapies, burning radiation, and now chemo, I can say I’m so grateful that this isn’t it. When my eyes are on heaven I am forced to reflect on the goodness of the gospel, I am forced to thank Jesus for saving me so that this isn’t the end for me, I am forced to be grateful for what He has given me rather than all that I feel that He’s taking away. And that’s the key, that’s what the slaves knew, they had an understanding and gratitude for what Jesus did for them so that they could sing songs that look forward to the promise of eternal life in paradise. AMEN.

I go back to Seattle for chemo round 2 next week. I will also hopefully get some results from some various tests that I can get into later. Please pray for my symptoms and for me as I lose my hair. I appreciate all the support you’ve given me and some really beautiful head wraps! Love you all.

Chemo Here We Go.

A few days ago I got a call from my doctors asking me to come in ASAP to start chemotherapy. Chemo. The dreaded poison that I’ve been able to avoid all this time. I barely heard the words as they came through the telephone with urgency. The next few days I prayed, begged God for discernment and wisdom, I asked Him to help me decide what to do. Here I am at the end of my options, more tumors creeping in and growing every day. I know that I don’t have a lot of time left, well, I don’t know that for sure, but I do know I’m at the end of what I as a human can do for this cancer. Chemotherapy is a terrifying concept. The idea of nearly killing yourself to live, all the suffering I’ve seen it bring, the pain, the hair loss, the whole thing, and yet so many people have been healed from it. The few days after I got the call my heart was in turmoil. Do I want to try yet another thing that “might” work and yet fail me again? Do I want to spend what little time I may have left being miserable and poisoned? Do I want to just skip it all and live out the rest of my days as best I can? These are the questions that wrestled around in my heart and mind.

Yesterday I met with my doctors. Man I have been blessed with an incredible team. To see a dozen brilliant, scientific minds enter the room and shed tears over my case, I mean I’m a person to them, they care about me and they care about saving my life. That’s just outstanding to me. Anyway they reviewed my CT results with me. It’s scary. I have 20 or so tumors, one of them is pushing my windpipe so hard that it’s out of place. One of them is pushing against my ear drum so my hearing goes in and out. But nothing has breached any important organs, so that’s a blessing. But it’s not looking good. We have no idea what to expect next with this cancer. Will it invade my windpipe? Will it creep into my brain? It’s so hard not to let those thoughts rule over my mind. Like if someone told you that your’e going to get in a fatal car wreck in the near future but they don’t tell you when. Man how do you live with that!? I have to choose to trust God’s plan and His timing. I have to give that to Him and let Him rule rather than be controlled by fear.

ANYWAY, so after we discussed the CT results and had a heavy conversation about how serious it is, they discussed chemo with me again. Essentially this is the deal. Chemo will not cure me. It hasn’t had long term success with Merkel patients. BUT the hope is that it will shrink the tumors to buy us some time to find another therapy. They are working hard on testing all different tissue samples and I have one the the BEST doctors doing extensive research to find out what is wrong with my immune system. So IF chemo works to shrink my tumors in the short term, then they might have an opportunity to try one last thing. A lab in New York is testing some of my tumors to see if I have a mutation that another drug might combat. Those results will take about 3 weeks. So right now, the prayer is that 1. chemo will shrink my tumors, and 2. that they will have some amazing discovery that will lead us to a new drug option. Obviously you and I both understand that if chemo doesn’t shrink my tumors, I’m running out of time. And that’s the harsh reality of it you guys. But don’t lose heart, that just means I’m closer to a heavenly paradise!

In the meantime, I received my 2nd dose of chemo today and so far I am tolerating it well. I have some serious fatigue, a bit of nausea, and a major lack of appetite but other than that I’m okay. Next week is supposed to be the hard week. My white blood count will be very low, I have to be super careful and watchful for any infection, and, I will most likely lose my hair.

Hair and I have had some tough times during this battle. I’m not going to feel bad or apologize that I am really devastated to lose my hair. It’s a comfort to me, it makes me feel feminine and pretty, it disguises some of my really ugly tumors, and I am scared to let it go. Mom and I are going to go try on wigs tomorrow and I can already feel that the Lord is helping me and giving me strength to accept this new battle in my war with cancer. If you have tips on wigs or head wraps or scarves, let me know!

Thank you for being such amazing prayer warriors, and please never stop praying. Love you guys.

 

Isolated.

This is hard. Suffering, pain, death, disease, it’s just hard.

The last few weeks I have been able to do some really fun things with my family. No complaints there, only pure joy. But during the best of times, it’s also been the worst of times. I have new tumors, a lot of them. My old tumors are growing rapidly, two of them being in my face. Everyday I wake up and feel like something has changed. That centimeter of growth in my face tumor that makes it so now it pushes on my eye, that new tiny, familiar bump on the back of the other side of my head, the one behind my ear is now turning purple, etc. It feels hopeless, and defeating.

I had a guttural cry in the car the other night with Adam. It started earlier in the day when I had to go speak to this woman, she was just so stunning and “normal” and all I could think about was the large tumor on my face, or the fact that my smile doesn’t work now, or I was worried about my hair moving to reveal these large red lumps. Insecurity ate me up inside. It shut me down. When it plants a seed it’s amazing how it can filter the rest of your day. I went to a family barbecue and I noticed the seed of insecurity inviting in the seed of envy as I watched my family laugh and talk about their future. They all seemed so unchanged, so “normal”, and then there was me.

It’s isolating. I struggle a lot with not feeling alone. There’s nothing that anyone can say or do except, “I’m sorry and I’ll pray for you”. Sometimes I just want someone to say, “I get it” or “I woke up with a new tumor today too” or “My face tumor is making my lip function not work too”, but there is no one else. No one else knows exactly what I’m going through, and therefore I feel alone. I told Adam, in between deep gasps and streaming tears, that I picture my situation like this: I picture one of those old movies, I’m running and I fall. For some reason, maybe my leg is stuck, or maybe I’m in a hole, I haven’t figured that part out yet, but for some reason I can’t get up. Then this fiery, human eating ant starts to crawl up my leg. I’m able to swat him away. But then 3 come, I can still defend myself. But then 8 come, then 10, then 20, and I watch as I slowly see my body being engulfed by these ants. Meanwhile everyone is standing there watching me. They give a few attempts to fight the ants off, but there are too many. So finally they just watch and I scream and cry for help. They tell me that they are so sorry and that they’ll pray for me. They tell me that they wish they could do something, they say that they can’t imagine what I’m going through. But they can’t help me. I’m alone, slowly dying as these ants take over. (The ants by the way represent my tumors. If you didn’t catch that.)

It’s isolating and terrifying being alone with these ants. Watching as they destroy my body. But one of the things I’ve noticed lately, and one thing that I didn’t mention in that story, is that, while I can’t control the ants taking my body, I can control them taking my soul. So in the midst of the lies of insecurity or envy or loneliness, I can run to the Father to shepherd my soul. To protect my soul, to nurture my soul, to heal my soul. My soul is already saved, it’s untouchable by fiery ants and lethal tumors. So instead of urgently trying to save my diseased body, instead of using everything I have to fight off the ants, instead of being angry as I look to the humans around me to save me, instead of isolating myself in the lie of loneliness. I am going to have the courage to go to God as my Savior, to thank Him for saving my soul, to spend my time not being angry with people but loving them, and to remind myself that we are NEVER ALONE. God has never left me nor forsaken me, He has never quit on me, He has never not loved me, and I am not alone.

I go to Seattle on July 10th, I’m not sure what the next steps are but I could use a lot of prayer. Things are not going well for me. Physically that is. Please pray for wisdom for my doctors, for discernment for myself and my family, and for faith that God is a good and sovereign God.

About Death.

I really love when you guys come up to me and tell me that you read the blog, it helps to see you face to face, it makes it even more real that God is using my story to reach WAY beyond me. Lately the Lord has used so many of you to bless me beyond belief! Everclean car wash did a fundraiser for me, Henley football did a fundraiser, Tashi Soaps did a fundraiser, and even Umpqua bank! I am incredibly humbled by your kindness and generosity so thank you all.

So, I have been giving this blog a lot of time and prayer. I know a lot of you have questions and I have some answers. This week my Mom and I head back to Seattle for another round of TCells and a new trial drug. Yes a new one because the most recent trial hasn’t been working. I am up to 10 tumors, 3 in my face, 3 on my head, 1 on my throat, and 2 under my ear. The TCells also haven’t been working. The tumors are very strong and defeated any TCells that infiltrated them. This is NOT because my body is in bad condition and this isn’t because my immune system is bad, there is no explanation except that it didn’t work.

Initially the news was extremely discouraging and devastating. I was really counting on this to work. It’s been our backup plan for so long that I almost felt invincible heading into surgery and radiation. In the back of my mind there was always, “Well at least we have TCells”. And now TCells are used up. The backup plan is done. So this leaves us in a very unknown spot. This is the scariest it’s been for me. Plan A, B, and C are done. So we move forward to plan D. A new trial drug.

I’m not invincible. In fact, none of us are. But I have to admit, it can be very hard to realize our own mortality when modern medicine offers you so many resources to stay alive. For the last 2 years I have had cancer, but I never really though about death. It seemed so far off, it seemed so avoidable, and so in our control. I’ve never really experienced a lot of death in my own life either, until my cousin passed away a few weeks ago. He was 21 years old, and it really brought about the reality of our mortality. The reality that life is short. The reality that we aren’t in control, as much as we try. Then they told me that Plan C isn’t working, and slowly but surely I realized that my options are running out. So I thought about death.

It’s been amazing really, because as a Christian person death is not the end. I’ve been thinking a lot about Paul when he talks about longing for heaven and grieving for Earth. As the reality of mortality sets in I have actually felt a longing for heaven for the first time in my life. Like you see all over in the Psalms, I have experienced the guttural cry of lament as I tell the Lord that I’m afraid to die. I have also experienced immense peace and joy in knowing that I get to live forever in heaven, in paradise. I get to live in a place and I will not be suffering and I will never cry and I will not have cancer. My heart breaks knowing that there are people who will never experience that peace. They will live their whole life terrified of death. I am learning that you can’t grieve for the Earth without longing for heaven. You have to strike the balance. If you just grieve for Earth then you can become bitter and angry, jealous, you can start to justify why you shouldn’t die and others should, you can become miserable and panicked. When the longing for heaven comes in then it forces you to meet death with a certain gratitude. Longing for heaven takes you back to the cross, because without Jesus you wouldn’t have the option of heaven. So your heart is looking to the cross and you meet grieving for Earth with gratitude for what God has given you, not what death is taking away. This has allowed me to truly say, “Oh death where is your victory, Oh death where is your sting?”

I’m dying, but really we are all dying. I am so grateful to God for saving me, I will not die and just become a pile of ashes in the dirt, THIS IS NOT IT. This life isn’t as good as it gets for me, and death is not the end. As I cry and mourn over the thought of life ending here on Earth, I also cry tears of joy as I thank God for being so loving, that He sent His son to die so that I may find joy in my suffering knowing that this is not the end.

 

Tumor Flashbacks.

It’s been a very difficult past two days. As you all know, or most of you, I received my first dose of TCells last week. This is great news because they are actually floating around inside of me now! The infusion made me pretty sick and put me out for a good 3 days, hopefully that’s a good sign.

But anyway back to the present. The night before last I was washing my face, when my hand ran over a familiar lump. Yes, another tumor. This one is on my face, again, right under the scar where I got a hole cut out. It’s the worst feeling when you discover a new tumor. Defeat, anger, confusion, heart ache, disgust, despair. I think this one hit home especially because it’s nearly in the same place my original tumor was, which brings back haunting memories and feelings. I just stared at myself in the mirror, and then I broke. My poor husband. I wonder what went through his head as he is about to fall asleep and hears me in the other room, all of a sudden, bursting into a guttural cry. I’ve never seen him run to me so fast. Then we both just sat on the floor, sobbing.

I don’t know what this means, and the doctors don’t know what it means either. Was it growing before TCells? Did it show up after? Do TCells work? Will they work? So many questions and no answers.

I have 7 tumors now. 7 tumors that can kill me. And I have spent the last two days really wondering if I am going to die from this. I told Adam that if I do, I don’t want anyone saying I “lost my fight with cancer.” I hate that. Because of Jesus I have won my fight with life! I will go to a place where I will suffer no longer and I will live in a perfect, glorious place forever! Talk about HOPE, which is why I will continue forward.

On a side note, I want to remind you all that your actions MATTER. I was having a hard day yesterday, just thinking about the new tumor and dying and all that. I had to go get some blood drawn for the clinical trial protocol. Instead of flying all the way to Seattle for a blood draw, I decided to get it done here. I don’t want to bore you with the details but it ended up being this big ordeal. I was sent from place to place, told different things, the order was wrong, then they couldn’t even draw from my port etc. etc. I was so stressed out that I started crying in front of the phlebotomist. Then one of the nurses there took me aside, (I know her name but I won’t mention it, she’ll know who she is) and she just hugged me and told me that she has been praying for me. She told me that I’m her little sister in Christ and that I’m not alone. In the midst of all the stress, in the midst of feeling isolated and frustrated, she reached out and comforted me. It was a seemingly simple thing, but it made a world of difference for me in that moment. It took 2 minutes of kindness you guys, you never know what’s happening in someones life. Just be kind. Just do it. So thank you for doing that for me yesterday Nurse S 😉

I head back to Seattle on the 1st, please don’t ask for further details on the trial because I have no answers at this point, so just please just pray for me and do something kind for someone okay? Thank you all and love ya!

 

Praising Him through Frustration?

God is amazing. Seriously though, He constantly baffles me in His goodness and I am always reminded that when He says, “Ask and you shall receive” He means it! Not in a genie way, don’t read this and then pray for a Mustang expecting that it will POOF! into your garage.

Two examples stick out to me of God providing for me this week. The first one, and one that I never want to take for granted, is the kindness of God to motivate peoples hearts to care for me. I have received an abundance of cards, words of encouragement, meals, airfare donations, and prayer. These things are not a given when you get saddled with the big ‘ol cancer. These things are a blessing and I’m humbled and so grateful for every person who has cared for me in some way.

Another example from this week happened a couple nights ago. I was having a hard day, just struggling with those pesky questions of, “Why God?” “Where are you?” “How is this what’s best for me?”. I normally try to avoid questioning God. I find it easier for me at times to just accept that this is my life. I try and find harmony amidst this calamity. To just “deal” with it. But eventually the tension and the outburst of, “this isn’t how it’s supposed to be!” resurfaces. So once again I was laying in my husbands arms just sobbing. Nearly guttural. Side note you guys, as I’m sure you’ve gathered by now, my husband is amazing. Take notes here on how to handle someone who is suffering. LISTEN. He does that the best. He listens, he is patient, he is grace filled, and he is selfless. If he hadn’t taken the time to ask me what’s wrong and truly mean it, I wouldn’t be writing this blog. I would be stuck in the same rut of apathy. So he chose to listen rather than sleep, rather than judge, rather than lecture, and after I poured out my heart, he encouraged me to read. See I have tons of books that people have sent me, but I tend to avoid them. Mostly because I felt like I’d just feel bad about reading about others who are going through way more than me and handling it way better. But then he challenged me, “Why don’t you read about someone else to be inspired by them, not to be condemned by them.”

So, I listened.

The next morning I picked up a book sent to me by friends in Spokane called, “Rejoicing in Lament.” It was one on the top of the pile of books about cancer, ones that I was definitely avoiding. I already live out cancer, why do I need to read about it? That was honestly my initial thought. So I flipped open to an old bookmarked page of mine, and the pages to follow were a direct answer to my cry. Did I mention that God was amazing!? And alive!? It’s a sad world to live in if you dismiss everything as a “coincidence” or “lucky”. No. This was planned and ordained by the Lord. The fact that I picked THAT book, the fact that I turned to THAT page, it was no coincidence my friends, it was an answer to my prayers, it was a comfort to my soul because God CARES about me. Whoa.

So I won’t word vomit the last 3 chapters I’ve read but I will talk about one sentence that gripped at my heart, “Even the most shocking psalms expressing outrage, fear, and despair are doing so before God, and that is praise.” How radical is that sentence!? When I bring all my questions, all my cries, all my hurt, and all my frustrations before God, it’s PRAISE! What the what!? How many times have I tried to manicure my prayers? How many times have I felt ashamed for feeling frustrated? How many times have I just decided not to pray at all if all I am going to do is cry? And all along, as it shows in the Psalms, I would have been praising the Lord, because I am coming to Him. RADICAL you guys, and man that once sentence was so freeing to me. I have been holding back in my relationship with God lately if I’m honest. I’ve been hurt, confused, frustrated, and unsure of how to even approach Him. I still feel all those feelings, and I still don’t know what to do with it all, but one thing I do know, I can take them freely to the Lord. I can give it all to Him in it’s raw and flawed state, and it’s praise. That’s the God we believe in, that’s a loving God, that’s a God that, like my husband, will hold you and LISTEN.

I head back to Seattle tomorrow, I get a port put in on Friday so if you could pray for that procedure to go smoothly I would appreciate it! Praise God that because of your generosity Adam gets to go with me for part of the time. I will be there until the 19th. TCells with be on the 16th which is a BIG DEAL, so prayers for that as well please!

I Should Be Sleeping.

I should be sleeping. I should be curled up next to my husband in my own bed, my freezing toes toes tucked underneath his warm legs. I should be home, I should be doing wife things and thinking about what I’ll make for breakfast or who I’ll have coffee with.

I should be sleeping, but I’m wide awake. Partially from the nap I took after my 10th biopsy, and partially from the fact that I’m experiencing another guttural cry. It comes and goes, the emotion of it all. Tonight it came after seeing a video I took of myself after my recent surgery, too recent if you ask me. It’s odd, sometimes I think I almost forget or block out what I’ve gone through. The videos and the pictures allow me to see everything from the outsiders perspective. Your perspective, and I cry. I can’t help but cry for the girl in the pictures. The stitches everywhere, the bloody red mess, the swelling and the tubes. I feel so sorry for the girl in the picture. There in the hospital gown, bearing various scars and deformations, showing all that she’s endured, and then it hits me, that harsh reality hits me in the midst of my brokenness for the girl in that picture. That girl is me. So I’m crying. I’m crying as I sit in a bed that’s not my own, alone, with freezing cold toes, a throbbing in the back of my head where they poked a prodded today, and the images of the past two years swirling through my mind. I’m thinking about the upcoming medical appointments I have instead of what I’m going to cook my husband for dinner.

I should be sleeping, but I’m crying.

And that’s okay.

You’re Going to Be Sad.

“Why?”

“But why? I don’t get it?”

“It doesn’t make sense.”

“I just don’t understand? What the heck!?”

“That wasn’t enough time!”

Many of you will say something along these lines when you see this post, and I want you to know that I said the some thing.

Before I explain to you why you are about to say these things, you need to know that it’s okay to say them. To feel the hurt, the confusion, the frustration, and even the heartbreak. God feels that way too. And that’s something that is so hard for me to remember, or even grasp. I often kick myself for asking those questions, knowing that I will not have the answers that I seek until I get to heaven. So I encourage you to feel all the feels, but don’t get hung up on questioning God. Don’t go looking for answers here on Earth because truthfully, nothing will satisfy except this:

“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future.” Jeremiah 29:11

God is not unaware of my situation, He is not calloused and uncaring, His plan is not to harm me, or inflict pain on me, or punish me. He is in control yes, He allowed this yes, but He has a plan to give me hope and a future. Some of you doubt that I have a hopeful future, and sure, on Earth my future looks more and more impossible. I often don’t have a lot of hope that I’ll have much of a future, here on Earth. A lot of times I do feel like cancer is going to kill me. BUT because He has saved me, I have a HOPE for an eternal future in HEAVEN. So think on these things as I tell you what’s next.

I have 3 new tumors. Yes, already. (Now you enter the exclamations from earlier). These tumors are completely out of character. The first one I felt is on the left of what would be my Adams apple, if I were a dude. It’s large already and I had a tiny bit of hope that maybe it was scar tissue since it appeared in a previously treated area. You see, we thought we had an advantage, we thought that the cancer wouldn’t come back in an area that’s been treated with surgery and radiation. Knowing we were wrong makes my heart break. It makes me fearful and discouraged. Will anything keep this cancer away?

The other two are on the left side of the back of my head, right where a headband would sit. They are two peas in a pod, snuggled right next to each other, again, a tumor placement that we haven’t seen before.

So what now you ask? Well I head back to Seattle to start the clinical trial again, this time we have TCells frozen and ready to inject. The prayer is that the TCells will be the game changer, or a miracle really. Only time will tell, but please, PLEASE, pray, pray, pray. I need it desperately. I also have to fly to Seattle quite often for the next couple of months so if you can help in any way there, I would be extremely grateful! Thank you again to all who read this blog, I am humbled by the way God has used this in your lives and in my own life, love ya!

Skater Girl Problems.

I listened to a really good talk by this woman, I wish I could remember her name to give her credit but…oops. Anyway she talked about this concept that purpose drives contentment. She starts out by talking about Pinterest, which automatically grabs my attention because I LOVE Pinterest. She talks about the joy in creating different boards and planning out your dream life. I could totally relate! I planned my entire wedding on Pinterest. I scrolled through photos of the perfect brides in the perfect dress at that perfect angle. I pinned snapshots of those little details, like delicate lettering, or cute little succulents. I pinned photos of the groomsmen with their beaming white smiles and chiseled jaws. After hours of dreaming and scheming I left with a whole new set of expectations for my wedding. After the speaker leads you through her Pinterest boards and dreams she then mentions that she becomes very discontent with her life after spending hours on Pinterest. As much as I wanted to say, “Well that’s her problem.” I found myself relating to that as well.

Discontentment. I feel like that is too familiar to me. I spend a lot of my time being discontent. I can trace this back to being a little 5th grader. I was constantly discontent. My best friend Kayla had everything I wanted at the time. She got the name brand pink VANS while I got the off brand brown suede ones, she got Toaster Strudels for breakfast while I got Honey O’s (not even Cheerios), I was constantly comparing my life to hers. Fast forward to last week. I was discontent with not having a job while everyone around me went to work, I was discontent with how surgery has left me scarred while I see so many beautiful people in the media, I was discontent with our little rental when I see the stunning houses that my friends and family own, and on and on and on it goes. It’s a sneaky one, I often don’t catch my discontentment in the moment, it’s usually in hindsight. But after that woman mentioned that PURPOSE drives CONTENTMENT, I started to wonder, what’s my issue?

My issue, I’ve found, is that I don’t have a firm, unchanging purpose. Does that make sense? Let me show you. Taking it back to my 5th grade years of jealousy, my purpose was found in being a “skater girl”. I mean really, I wanted to have the skater girl image, I wanted that identity, so my number one purpose and priority was my style. And because of that I was constantly discontent. As long as someone else was being a better skater girl than I was, my purpose was unfulfilled. Now take it back to last week. I was seriously struggling with finding my purpose because I don’t have a job. So, in that moment I was discontent because everyone around me was working and therefore I wasn’t finding my purpose because I didn’t have a job. I find that it’s the hardest for me right after I fight another round of Merkel. I mean for months at a time my purpose is clear: FIGHT FOR YOUR LIFE. And I do, and I pour everything into radiation and surgery and healing, etc. But then it all ends and they just drop me off at home and I find myself feeling incredibly lost. I start searching for some kind of purpose and I am often left feeling very empty. Are you tracking with me now?

So there is a simple solution here, I’ve know it all my life yet it is a CONSTANT struggle for me! The ONLY unchanging, constant, firm purpose is to live for Christ. I mean really, that’s the only thing in this world that won’t change. No matter what happens to you, no matter what you look like, no matter what brand of shoes you wear or what you eat for breakfast or what job you work, if you find your purpose in living for God you will always be content. Man! As a person who finds herself longing for the Pinterest dream, or crying over not having the life I want, I find this solution to be radical. I want to be content, I want to have peace with my life and with who I am and what God has for me. It’s not easy! But I have to dwell on this, “That we are not our own, but belong, body and soul, both in life and death, to God and to our Savior Jesus Christ.” Our purpose must be to live for Him, because we belong to Him!

Anyway just a thought for today. I head to Seattle on Easter (sad about that) and I have my CT scan to see how I’m doing. Thank you for your continual prayer and encouragement!