Surgery… I Hate that Word.

I haven’t cried that much in the last week, I’ve wanted too. Oh yeah I’ve wanted to just let all the emotion out, but it hurts right now. Like physically. Why you ask? Because two days after my CT scan last week I woke up to this throbbing pain in my neck. The tumor under my jaw, not the golf ball to grape tumor, but the other one, was about twice as big as it had been the previous day. It blew up like a balloon. Swollen and firm, painful, and large this tumor decided to make it’s appearance. I mean this sucker even robbed me of my sleep! Every time I’d roll over on my right side I’d wake up.

Fast forward to this Tuesday in Seattle. I had a follow-up with Dr. Nghiem and I showed him my new balloon tumor. He always almost laughs when I come in because there’s always something new, something he’s never seen, something he doesn’t understand, he’s always baffled. I’ll spare you the medical details and the ins and outs of that appointment and skip to the important part, I have to get surgery.

Surgery, again. As I write this I get this chest flutter, like that feeling you get right before you cry. Kind of a flutter in your stomach and chest and then that tingling in your eyes and nose. But then you try to keep the floodgates shut so you almost get a stomach ache, you know that feeling? If it didn’t hurt I’d be bawling all over my keyboard as I tell you that I have to have surgery. When they told me that it didn’t really hit home. I mean I figured it would be in a few weeks, until yesterday I got a call which confirmed my surgery for next friday.

Next friday, a week, I have a week to prepare to get cut open again. Awe man, here they come, the tears, I can’t help it. Ow.

I’m not afraid of the pain to come, I’m afraid of what I’m going to lose this time. The other half of my smile? My spit? My neck mobility? My taste? What scars will there be? How will I look different? There are so many what ifs in surgery. And it never goes exactly as planned. Like the first surgery being 11 hours not 4, or the second surgery resulting in dead tissue and a gaping hole in my face, what will it be this time?

I’m afraid, I’m frustrated, I’m tired, I need your prayers.

February 24th I will have surgery in Seattle. February 24th I will wake up in a hazy anesthesia fog again and gaze into the mirror seeing someone I don’t recognize.

Waiting Again, UGH.

Hello my blog-reading friends! Well as most of you know, or have heard, I had to go to Seattle earlier this week. I think I have the traveler’s curse, seriously, or God really wants me to learn a lesson that I’m just totally missing! I booked a train ticket to go from Salem to Seattle on Monday morning, 6:41 in the a.m. I woke up nice and early, zombie walked my way to the station, only to have the ticket man tell me, “Oh did you not get the email, the train to Seattle was canceled?”…well obviously not because otherwise I’d be sleeping! So my kind and gracious and extremely even keeled husband led me back to the car and drove me from Salem to the Portland airport at 6am. 50 minutes into our drive I am trying frantically to book a flight and get ahold of the airline. The random elevator music that they force you to listen to when you’re on hold looped for a good 20 minutes before the operator stated, “We’re sorry, due to a high call volume the wait list is 3 hours, please leave your number and we’ll call you back.” 3 HOURS people! And you know that’s not even accurate! So we turned around and drove back to Salem. Oh apparently there was a freak snow storm in Seattle and the city shut down…

Later that day…

I was able to reschedule all my appointments for the next day. I booked a flight out of PDX for the next morning and after Adam got off work he drove me back to Portland (yes he wins best hubby award, he never once complained!) where my friend Clare so graciously let us stay.

5 am Tuesday morning…

I don’t know how many of you are like me, but I’m an anxious wreck when it comes to morning flights! I never sleep well, I wake up hours before my flight to make sure my phone is still working and to make sure I clicked am instead of pm on my alarm. So 5 am I hear the text ding on my phone, “Alaska Airlines apologizes for the inconvenience, you will receive a voucher in your email.” What does that even mean!? I look on my app and sure enough my flight was canceled. Turns out that all the flights that got canceled the previous day got rebooked on our flight and we got bumped to the night time. Now I’m used to things never going right, I mean I’m not even being dramatic, if you’re a frequent reader you know that things just get complicated when it comes to my life. So you’d think that by now I’d just be as chill as an island lad, go with the flow ya know, and just remember that things always end up working out for me. Nope, still haven’t learned that lesson.

So at 8:50pm Tuesday night I got on a flight and actually made it to Seattle. I had my CT scan which was like the other bajillion scans I’ve had, and as I was heading back to Salem, there was a NATION WIDE SYSTEM OUTAGE at the airport. RIGHT when my flight was supposed to depart! I’m sorry but WHAT WILL HE COME UP WITH NEXT!? The zombie apocalypse, that’s gotta be the next thing. I made it to Salem, not super delayed thank heavens.

Now what? Well now I wait until my meeting with Dr. Nghiem on Tuesday. I plan on driving, so please pray that there’s no freak thing like someone hacking into the zoo system and releasing all the animals, causing the highway to close for safety, ya know, because those Apes can smash your car in… The scan showed no distant tumors which is GREAT news. So those little buttheads haven’t moved past my collar bones, they prefer my face I guess. The only problem is, I know that my tumors are growing again. I can feel them. But the only scan the doctors had was one I did mid radiation, so the scan they recently took doesn’t do a lot of good since they can only compare to the mid radiation scan, and compared to that of course my tumors have shrank. Does that make sense? Anyway I’m hoping a physical exam will offer more clarity. Until then, our favorite waiting game.

 (shout out to Karli at County Cork Collectibles for teaching me the art of lettering! It’s my new stress reliever!)

Why Should I Fight to Live Anymore?

This round of radiation has been…a thousand times better than last time! Praise God! I was kind of waiting for that awful moment where I wake up with hot skin melting off my neck, and here we are nearly a month later and the worst of the worst was some crispy peeling! Ew. Using those words to describe skin, uhhh kind of horrible sounding. Anyway, the mouth is still dry as a bone and my taste hasn’t come back. I only have a few pesky sores on my tongue and throat and I still have tumors. Yes, unfortunately they haven’t magically dissolved.

To clear things up, I know a lot of you saw my post about wanting to go work in an orphanage. I was so hopeful that radiation was going to get rid of my tumors. I mean heck I had 60 treatments! I was encouraged to see that my golf ball tumor went down to a grape tumor so I thought that maybe, just maybe I’d have some time off. So as I prayed about how to use my free month, the Lord brought a mission trip to my heart. I guess it was just, I mean for the last 2 years I’ve been poured into. I’ve been the “charity” case. People have served me and done kind things for me and I feel like it’s time for me to pour out, to serve, and I know that I do that in some ways through my blog. I also just LOVE kids, and I love culture and it just seemed like a good move! Anyway, through the course of a week I had reached out to 10 orphanages based off your recommendations (thank you). It was really coming together and I was getting pretty excited! But there was one issue, as my hand reached up to assess the pesky little, life-threatening lump in my neck, it was bigger. It was bigger and it was hard as a rock. We all know by now that this is a bad thing.

So radiation didn’t work, all the way. I refuse to have the heart crushing thought that radiation was all for nothing, so I’m choosing to believe that radiation was just meant to shrink the tumors. I mean, surgery on a grape is MUCH better than surgery on a golf ball! But I’m not going to pretend that I wasn’t devastated. It’s so hard to hear that yet another thing didn’t work. This also means that I won’t be going on a missions trip, which was also very sad for me. Instead I will make my way to Seattle on Monday for a scan and a new plan.

Surgery doesn’t work, Radiation doesn’t work, Chemo doesn’t work, and the Clinical Trial doesn’t work. I have to admit that these facts have terrified me the last few weeks. I feel as though I have no back-up plan. Like they are just keeping me alive, not that I’m going to live. I really am afraid that this cancer is going to kill me. I know we are all going to die, someday. And as I think about death more and more I have to ask, if you don’t have God, then what are you living for? What would you say to me, a 23 year old woman with possibly not long to live, who, in the last year and a half has been through 12 weeks of radiation, 2 major surgeries, one clinical trial, 7 biopsies, and is now looking at another face altering surgery that may not even save my life. Why should I persevere, why should I keep fighting? Because as I wrestle with the desire to live for me and the desire to live for God all that I can say is that I should keep fighting because this life isn’t about ME. It’s not about being happy and comfortable, it’s not about being the prettiest or the most successful, because nothing in this world will sustain. Not if I choose to live for my husband, or my parents, not for my photography or my white picket fence dreams. Those will all fail me, they will all perish, and they are not a guaranteed constant. God is the only thing that is outside of myself, that I can choose to live for that will never leave me or forsake me, He will never fail me or stop loving me, He will never stop fighting by my side, He will never stop wanting the best for me, He will cry with me and He will bless me, He himself gave His life up for me, HE DIED FOR ME, and that my friends, is someone to live for.

 

Just a reminder visual to prove I wasn’t being dramatic about my skin melting off last time…

I Thought I Was Poisoned…

So I just realized that I haven’t really kept you guys in the know as far as how radiation round 3 has been. This is mainly for your curiosity, but also for those of you who will ever have radiation and want to know what it’s really like. To be honest the doctors aren’t always the best at preparing you. They use vague terms and can’t give any specifics because these days Americans will sue for any little thing.

The first weeks I had few symptoms, mainly just fatigue. Then as you know I got the intense mouth burns, ew. After my doctor tweaked my treatment, my mouth started to heal, praise God! Then the dry mouth started, only this time not only did my mouth get dry, but any spit I produced was as thick as molasses, no exaggeration. Because my spit was so thick, I would get super nauseous and I didn’t eat. Well losing weight in the radiation world is a big no no so, they sent me home with a bunch of, ENSURE. Yes Ensure, the protein shake that I grew up believing was only for Grandmas.

Back track a few days before the nausea set in. I was alone in Seattle at this point, and a little bit anxious after watching some kind of crime show. My fault I know. Anyway, I decided to make a cinnamon bagel with butter and cinnamon sugar (this is relevant). At the Collegiana there is a shared kitchen, like a college dorm, and often people will leave random food and things behind. Now I’m not one to eat peoples leftovers, mainly because I can imagine them scratching body parts and then reaching into their bag of chips, the same bag of chips that they left behind marked, “free”. Not free of germs! Anyway, so I made my bagel and realized I didn’t have any sugar. To my dismay, I was forced to grab a few of the restaurant style sugar packets left on the table. I took my bagel back to the room and took a bite, only to be met with the bitter taste of pure cinnamon. Confused, I poured more sugar on it. Took a bite, not a hint of sweet. Now at this point I had 3 sugar packets poured onto this bagel, so this time I stuck my finger directly into the sugar, placed it on my tongue, and felt only the texture of powder with no taste. Okay, I’m assuming that a normal person would just shrug it off and throw it away…remember how I mentioned I was anxious? I immediately started thinking about how maybe it was poison, do people even use poison anymore!? No maybe it’s drugs, someone hid their drugs in the sugar assuming no one would use it and now I have drugs or poison in me!?! I seriously debated calling someone. I checked my eyes, not that I knew what to look for, they looked normal. I felt my heart, it’s not about it explode. So after probably a half an hour of panicking, and texting my family telling them I loved them in case I never woke up, I thought it may be a good idea to get a drink of juice. After taking a swig it hit me, I lost my sense of taste. That’s a side effect of radiation that my doctors didn’t warn me about, but I happened to overhear another patient talking about it. The ability to taste sweet, POOF, gone.

Losing your ability to taste sweet really throws you off. It’s amazing because I realize now how so many things have sweet notes that I would have never noticed. Biting into pizza only to be met with texture, some oregano flavor, saltiness, and the subtly of cheese, but not the sweetness of tomato sauce!? Terrible! I went to one of my favorite Portland ice cream shops, as I sampled flavor after flavor I couldn’t help but grimace at the savory notes that showed up, but ice cream without sweet is just gross. It was incredibly discouraging at first. You pick food based off what sounds good. You have an expectation based off experience or knowledge that your food will taste a certain way. It’s a habit really! So it’s frustrating when you go to take a big ol’ bite of spaghetti because it sounds good, and it smells like spaghetti, it looks like spaghetti, but when it meets your tongue, it tastes nothing like spaghetti. Food is dull right now, like everything has been watered down. I have to add salt to everything. It’s less discouraging now because I’m used to it. I eat for nutrition only, not pleasure. So please, next time you eat something that sounds good to you, take a moment to savor all the flavors, pay attention and really enjoy it!

Okay moving on. I don’t know if it’s just the power of prayer, or if it hasn’t hit me yet, but I really feel pretty good! I don’t have my skin melting off, like last time, it’s more like a peeling sunburn and it’s hot. So I am praying that I’m catching a little break! Woohoo! Thank you for praying. Love you all!

 

 

Is it a Wonderful Life?

I know it’s been a hot minute since I’ve posted, but hey here I am! Alive, breathing, mostly in one piece, and COUNTING DOWN THE DAYS! Saturday the 14th is, (Lord willing) my last day. After that, well, we know how it goes. I will, and I’m sure you will, pray pray pray that I heal well and don’t have to have surgery in the next few months!

So I want to back track to Christmas. I spent my Christmas home, thanks to your generosity and kindness, and it was exactly what I needed to refresh. While I was home my husband asked if we could watch, “It’s Wonderful Life”. Now I’m not gonna lie, when I saw that it was a black and white film, I totally fought him on it, insisting that it was doomed to be boring. Anyway, it was actually one of those films that hit me in a very unexpected way.

For those of you who haven’t seen the movie, well consider this your disclaimer. Basically it’s about this guy named George Bailey, stuff goes all wrong in his life and nothing goes as he planned. Hmmm sounds familiar already. So he gets to this point where things are out of control and he seriously thinks about just ending it all. Again, I relate! Anyway as he is about to jump off the bridge, an angel appears and takes him through what his life would be like if he didn’t exist. Does that make sense? George says that everyones life would be better without him so the angel shows what it truly would be like without him. It’s kind of a rad scene because there are so many details that you’d never even think about. Now I won’t walk you through the entire thing, you should just watch the movie, but I will say that after George sees how much his life affects everyone, he has a change of heart. He goes back to real life and is now joyful and grateful. There was this scenario where his Uncle lost all the money needed to keep their bank open and George is depressed thinking that he will never fix it, anyway when he goes back to real life, his wife had asked for the townspeople to help. They start coming in and setting any spare change they have on the table while George just stands there in awe. Phew! Okay that’s all I wanted to say about the movie, now we are all on the same page.

Now, there was a God ordained parallel happening between my life and the movie. As I watched George’s life become chaotic and out of control, I thought about the last 2 years of my life. How I had so many plans and how essentially my life got turned upside down. Then as George spiraled down, eventually finding himself standing at the edge of a bridge, I thought about the various times I stared at my pill bottle, or thought about driving my car into a tree, the times I thought it would be easier to just end it all.

But the next part, the part where George sees the impact his life has had, that part was really eye-opening for me. I mean just think about this for a second, your life has a ripple effect. I mean just try to imagine if you weren’t alive, if you never existed, what would be different? And if you can’t think of anything, ask the people around you. Your life is not just about you. You have an impact on every single person you meet. EVERYONE. It’s a ripple effect, it all matters. It’s kind of mind-blowing really. Life is so detailed and complex, and we could never plan any of it. God has woven purpose into every little detail of your life. I picture it like we all have a very unique color of, let’s say ink. Every time we interact with someone, whether it’s someone we know and love, the grocery clerk, the person you walk past and you make eye contact with, your kids, you leave a little bit of your color on them.

Stay with me here, let’s take the example of the person you pass on the street. If you take a moment to dissect just that simple interaction, it’s amazing! So you could have walked past that person and smiled at them, little did you know that they just had a family member die and they are just trying to hold it together. Since you were thoughtful about that small interaction, your smile made them smile, and since they were able to smile they I don’t know, it helped them feel something in that second. And who knows maybe they went home and told their Mom about it and she felt encouraged to reach out to her brother that she’s been fighting with and then they do something and on and on it goes and you have a ripple effect. I feel like I’m rambling, but I’m just amazed you guys! Our lives are NOT all about us, even if we try our hardest to make it that way. Every choice you make will have a far reaching impact. So make them count.

Lastly, as George stood there and watched his community come to his aid, I was standing there in my living room, staring at a once bare tree, watching it fill up with beautiful ornaments of encouragement, and I thought, “It’s a wonderful life.” Thank you!

 

Cried over Eggs.

I bawled my eyes out this morning during breakfast. It’s funny, they say “Don’t cry over spilled milk” but is it okay to cry over an underwhelming bowl of eggs? I could barely eat them. It was a very humbling moment, to lose something you rely on so much. Eating. I know it’s main purpose is for nutrition and survival, but man we have really made it into an art! An art that I am learning now that I really enjoy. Anyway back to the eggs. I started crying out of frustration that it was so much work to have a simple breakfast. The blog I wrote last night (in that moment) completely went out the window and my perspective on the situation was that in my boxing match with eggs, eggs were winning. Eventually, after too many tears and a bunch of water, I won.

After my discouraging breakfast battle I went back into my room and decided to take a bath, a bath in my book makes everything better. As I was going back and forth between changing my perspective on my situation or dwelling in my ager toward my current eating disabilities, I received two separate messages. Now I won’t go into detail for the sake of their privacy but two different people reached out to tell me how the blog post from yesterday specifically affected them. It was mind blowing how God timed it just right. I was able to get yet another glimpse at how God is using every little aspect of this cancer trial. It’s not for nothing.

Blisters in my mouth, not for nothing.

Radiation burns, not for nothing.

Surgery and scars, not for nothing.

Biopsies and failed treatments, not for nothing.

Blood draws and leaving home, not for nothing.

Cancer, not for nothing.

IT’S ALL FOR THE GLORY OF GOD. Boy isn’t that something?

So in my bathtub as I read the messages, eggs started to became much less important. The burning sensation in my mouth, or the difficulties talking, or the tumors in my neck, they serve a greater purpose, way beyond me and way beyond what I’ll ever know on this Earth. Does it still totally suck? YES! And God even knows that! He isn’t even mad about me crying over eggs! In fact, He cries with me. But then, He, in His sovereignty and wisdom, takes this gross cancer, and actually does good with it. GOOD things people from cancer! *and the crowd gasps at the mention of the big bad “C” word and the audacity that I’d say good can come out of it.”

It’s those messages, and that truth that encourages me to continue on. To know that God is doing work beyond my little tunnel vision focusing on eggs.

With that, I encourage you to share your struggles people! You don’t have to put it on blast on a blog, but share it with someone because otherwise, how will God get any good from it? (I mean He’s God and can do whatever He wants but, you know what I mean). And also, share with people how God specifically uses their struggle in your life. Be bold!

Love you all, and I am so grateful for so many prayer warriors. It’s almost Christmas and I refuse to let dumb cancer affect the wonderful celebration!

Also, if you have any suggestions on food that doesn’t have any spice and that’s soft let me know! So far canned, bland, chicken noodle soup and yogurt is what I’ve had success with…

 

 

 

Unfortunate Update.

The Collegiana, the mesh mask, Cross and Crown Church, it’s odd how I’ve made so many good and so many terrible memories here. If you haven’t followed my story for long, last August and September after my giant 11 hour surgery, I lived here at the Collegiana for 6 weeks and had radiation every day. For those of you who have followed my story since the beginning, I’m sure your heart sank at the mention of those things.

They pulled me off the clinical trial.

It was some of the hardest news I’ve had in awhile. I had so much hope that the trial would be my miracle. My tumors kept getting bigger and bigger and so finally they decided to do a scan, that scan revealed another 5 new tumors in my neck. With a sense of urgency my doctors discussed all the possibilities and in the end settled on radiation. So here I am, entering week 3 of radiation. This time though it is twice a day, everyday until the middle of January. I haven’t mentioned anything because I didn’t want cancer to ruin the joy and perfection of my sisters wedding. And it didn’t!

It’s always such a range of emotions for me. Terrified that I have 7 tumors now. Devastated that the trial didn’t work. Thankful that they caught it before Stage 4. Sad that I have to be in Seattle, away from my family and husband. Scared because I know the horrors of radiation. And currently, I’m very frustrated because radiation is burning the inside of my mouth therefore resulting in severe blisters all over the right side of my mouth. It hurts to talk, eat, drink. Once again I’m reminded of things we so easily take for granted. While you’re reading this I want you to swish some spit around, you feel that moisture? It’s there for a reason, so thank God right now for spit, because it’s something I absolutely miss having. Now do me a huge favor and take a few second to really savor and chew on your next meal. Enjoy the spices, the textures, the crunch, the sensation of biting into something solid without really having to work too hard, and thank God for the ability to eat and enjoy it. Right now I have to forfeit solid food and it’s not enjoyable at all, it’s work to make sure my sores don’t scrape against my teeth or that salt doesn’t penetrate one of them.

Now that wasn’t a moment to have a pity party for myself! Because as I tell you to be grateful for the things we easily take for granted, I am learning through this new trial to stop focusing on all the things I don’t have or get to do. Because that just makes me cry. Instead, (the lesson I seem to learn every other week) I need to find reasons to be grateful. That is a heart and an attitude rooted in the gospel, rooted in the knowledge of what God has done for me, which is the ultimate thing to be grateful for.

So, as I take a sip of water every minute to relieve my desert mouth, I will challenge myself to not be angry that I now have to rely on water, but to think about the fact that I have easy access to water everywhere I go. See the difference? It’s such a simple change yet it is the difference between me spending my next 6 weeks depressed and crying, or laughing and finding joy. NOT that it isn’t okay to struggle! Man the struggle is real, and I am learning to allow myself some serious, guttural cries. And I’m sad, I’m devastated to be in this situation yet again. And that isn’t wrong.

I also want to point out that this perspective struggle is a choice that I have to make every other minute! I don’t just flip a switch and move through this cancer skipping ad whistling, and neither will you. This is hard, it’s so incredibly hard. Going through my 3rd round with this is exhausting and every time I feel like I can’t take another swing, the Lord continues to give me enough strength to keep on keeping on.

Please please pray for me. Pray for relief from the pain I’m experiencing. Pray for this to work and kill this stupid cancer. Pray for the Lord to work through my weak and flawed human nature to bring glory to Himself. Pray for my family as I’m separated from them for 6 weeks. And praise God for the things we take for granted that He blesses us with!

Love you all.

(Last time I did radiation)

Looking Beyond This.

I’m here still. I took a little break from blogging, to be honest the last few weeks have been difficult.

To catch you up, I just had my second Avelumab infusion, the next one is on the 28th. The last infusion went well, one poke and a few hours later and I was done! I flew to Seattle this round, boy is it just a thousand times better. It’s less stressful, it takes less time, and my body feels so much better afterwards. I just wish it wasn’t so dang expensive! So I’m exploring the alternatives, this coming trip I’m taking the train.

I haven’t felt very good. The tumors in my neck are continuing to grow which is scary already, but now I’m experiencing a lot of odd feelings. I’m light-headed, I have frequent headaches, I have fogginess, I have trouble focusing, I see black spots more often, and I feel more exhausted. My soon-to-be EMT husband thinks it may be the second tumor pushing on my carotid artery and making the blood flow to me brain slow down. I decided to test his theory by pushing on my tumor. Hah bad news, I nearly passed out! It’s hard to sit here and watch my body freak out. Knowing that the cancer is actively eating away makes me feel like I’m slowly dying. It’s an odd roller coaster to be on. Some days I welcome the thought, some days I feel devastated. I mean, I know that technically we are all dying, but how many of us actually think about that?

I’m really terrified that I’m never going to be able to have children. I had a dream the other night that I was pregnant. You know those really realistic dreams that feel so real? It was magical. I mean in my dream I wasn’t sick, I didn’t have cankles, or the pain of carrying another human, just the magical mommy feelings. I woke up only to the fact that my chin is the only thing that looks pregnant. Such disappointment. In those times where I’m frozen in fear that cancer is going to kill me before I get to put a little Hayden here on Earth, I’m reminded of the time last December where I thought I was going to die. I started to panic, thinking that I’d never get to experience the joy of being a wife. And here I am. But what if I don’t get to be a Mom? This is where that eternal mindset comes to mind. This idea that “greater things are yet to come”, or “we are not made for this world”. Heaven. How often I forget that heaven is my reality because I’ve placed my faith in Jesus. How often I neglect the beauty that I get everlasting life in HEAVEN. While Motherhood is something I pray I will experience, and while it’s such a beautiful gift here on Earth, how much better will heaven be? I think the idea scares me a bit to be honest. I mean, it’s hard to fathom, so I don’t like to go there. I like the tangible, realistic. But gee, to think that this Earth is the best there is? How’s that for a sad reality.

It’s easy to take hope for granted. But man, look at our world. Look at the chaos, the hatred, the terrified souls that think that this is it? We need to hope, we need to remember that our suffering, our President, our marital status, our kids, our jobs, this isn’t it. Thank the Lord for giving us a hope, a hope to look beyond the evil in this world and know that one day we will bask in the glory of heaven. To know that we will not end up as merely a pile of bones in the dust. To know that this is not the best there is. I don’t marvel in the wonder of that enough.

Please pray for these tumors to stop growing and for the medicine to works! Also, please pray for me as I plan my travel, I have to be in Seattle every single week of December. So prayers for my attitude and perspective as I travel a lot, and prayers for travel to not be too expensive and not booked up! I also have a  PRAISE, Adam got a new job!!!

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Have you ever lost your mind?

Who can know the mind of God? Who can know their own mind at times.

I had every intention of continuing my story of how everything went wrong, the biopsy was painful, the next day it took 3 digs to find a vein for an IV, we got pulled over on the way home…yada yada. But I’m not going to say more than that, because God had a different plan for today’s blog.

I don’t know how to navigate this. Cancer. Life. Loving God. Loving myself. Just everything. It’s one giant rollercoaster. One day I’m great and positive, the next day I’m begging God to end it all. Today I had one of the worst break downs since my diagnosis. I started off the day feeling so encouraged at church, I was singing, laughing even, and just recovering from the frustration of my last visit. I was sitting at my computer trying to figure out alternatives for Sis’s bachelorette party since I will be in treatment. I started thinking about how much cancer ruins things in my life. I became envious of the girls, my family even, that they just get to go. The only obstacle they have is work. It made me enraged to think that cancer will keep me from fully participating in the most important week of my only sister’s life. It’s more than just missing a bachelorette party, though, obviouslly.

Then I just, I don’t know, cracked. I don’t exactly remember what happened to be honest. It didn’t even feel like me, it felt like a stranger from a movie. One of those terribly sad movies where you maybe even cry for the girl on screen. I started screaming. I started screaming and shaking. My mind was cloudy, I even thought I was maybe going crazy. I screamed, exclaiming that I can’t do this anymore, that I don’t want to do this. Right there in front of my family. Why is it when you get so angry that you actually want to harm yourself? In that moment I just wanted to smash my head through a wall or pull out my hair. I wanted a distraction from the sudden range of emotions I had just let go. It was one of the few times I’ve let it ALL go. I did’t think, I didn’t analyze, I did’t try to be strong, it truly was just raw emotion.

I hate that vulnerability, I think it’s because I know there’s magic words, there’s no 4 step process, there’s no pill, it’s just, there. It’s much easier to contain it, to act like it doesn’t exist, to busy yourself enough to never give it a thought, to maintain control. That’s what I like, control.

The Lord is perfectly okay with just being there. He shows us that in Psalms when David is just pouring it out to the Lord. I can imagine that he was shaking, screaming even, just like me. Or Job.  The Lord didn’t condemn them, and He doesn’t condemn me for it. I condemn myself though. I don’t give myself a lot of grace I’m realizing. Mainly because I don’t understand God’s grace well enough, nor do I accept it. I am a weak, feeble, lost, confused, angry, flawed, human. I have no “inspirational strength” outside of the strength that God graciously gives me. Every single day is a battle. I have very down and low days where I want to lay in bed until I’m dead. Where I exclaim, “Take this away God, I can’t do this again!”. I have better days when I can keep my eyes on the Lord and exclaim, “God you are sovereign AND good, thank you for the blessing of life itself”.

Today I feel like I lost my mind, genuinely. But the crazy thing is, God loves me the same as He did yesterday when I was praising His name.

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20 viles later…

The first Avelumab Infusion is officially flowing through my apparently non-existent veins. It pretty much feels like the last trial did. I feel achey, nauseous, feverish, exhausted, and I have a head ache. So the flu without the flu part. Last time it only lasted a full two days, I’m hopeful that this is the case for this trial!

My most recent visit to Seattle was terrible. I mean other than the fact that my Sister and Mom were able to come with me, which made it all worth it!

I started out the right before we left with a really positive perspective. I felt encouraged and ready to fight this battle. I felt a peace in letting it go and giving God control of my life. I felt as though He gave me this new inspiration and a warrior spirit. The drive up was easy and wonderful, the night before my appointments was enjoyable. My appointments started off on a sour note. 20 viles of blood, was a tall order, even a vampire would think so. My one good vein pumped out a solid 12 viles until it begged the doctors to go away as it dried up. Now we enter foreign territory. A new vein. You see, I have always been able to depend on my ONE good vein. It never fails me. So the nurse feels around on my opposite arm. Nothing promising but she finds one to “give a try”. For those of you that get blood drawn a lot or get IV’s often you know the terror paired with “give it a try”. This means digging, digging under your skin, digging in your veins, and it’s disgusting, and painful. So the pumped another 4 vile out of some random vein deep beneath the surface. Finally they found a 3rd random vein to “try” in my hand and barely got 4 additional viles. After that discouraging event, they then went on to tell me that I won’t be able to receive my TCells until December. Now while that’s scary in that we are waiting another month, it was more disappointing to learn that the one week in my life that actually matters to me is the week I HAVE to receive the Tcells, the week of Sis’s wedding. I broke down. Cried my eyes out in front of my new team, in front of my mom, and in front of the nurse. I couldn’t help it. I exclaimed to them, “I’m 23, and cancer just ruins everything! Why do I have to do this? Man I’m just so frustrated.” And they all looked at me and agreed. “Cancer Sucks.” they replied.

Then I went from that embarrassing and frustrating appointment to the biopsy…

to be continued…

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2 viles not pictured. For those of you who counted!