My Last Birthday.

“What do you want for your birthday?” It’s a normal question to ask someone, and usually I have a quick fire answer as I have a running list in my brain of all the things I’d want. This year the question seemed impossible to answer. Not because there wasn’t anything I wanted, sure I could think of a few things here and there, but because this birthday may be the last birthday I will have on this Earth. Clothes, shoes, makeup, all the things I would have wanted seemed almost pointless. I found myself wondering what really mattered to me the most for my last birthday.

It came down to quality time with the people that I love. I longed to be in fellowship with my family and friends, all I wanted was to enjoy spending time with them. So how was my last birthday?

It was a wonderful night spent with friends and family. But it definitely had a unique feeling for me as I had the filter in my mind of, “this is it, you’ll never have another birthday here on Earth again.” It made every moment more special, yet it also forced me to have a cry in the bathroom. I wondered silently to myself what my birthday next year would look like? Would people be crying and mourning? Would they try to make it a celebration and reflect on all the memories we shared? Would they just get through the day doing their best not to think about it? Part of me likes the image of everyone celebrating my life and making it a happy day, the other part of me understands that it could be a very difficult day. But whether it’s a celebration or a time of mourning, the best image is that of everyone thanking God for the 24 wonderful birthdays I had on Earth. Whether it’s in the form of gratitude or lament, I would hope everyone could say a little prayer to God and say a little something to me.

One of the best gifts I received was a pile of letters that my sister gathered from people that I love. I stayed up late in the night crying and laughing as I read what people had to say to me on my last birthday. Some shared memories, some told me what I’ve meant to them, some had no words, and some praised God for my life. It was one of the most meaningful things that could have happened on my last birthday. It got me thinking, as someone who has the rare opportunity to be aware that my life is ending, I am able to tell you guys what not to miss out on. Some of you won’t know when your last birthday will be. So let me give you some advice. Definitely get the clothes and shoes and tools and games that you want, those things aren’t bad, but don’t let that be the center, the epitome of your birthday. I challenge you to spend your next birthday with the people that you love. And for those of you celebrating someones birthday, leave NOTHING unsaid. Tell them why they are important to you, share your favorite memory with them, write them a card so they can keep your words forever, because you never know what tomorrow will bring, don’t waste a day.

 

The Not so Glamorous Part of Europe.

We made it back from our Europe trip! Well, nearly, I’m still in Seattle receiving chemo. But we are back to the states and kind of sad but also we were kind of ready to be home.

I tried to keep you all kind of in the loop via Facebook so I know that you guys know that we had a wonderful and exciting time! It was such a blessing and we had so many cool experiences and we got to see some really amazing sights, and the time we got to spend together was much needed after a year of spending so much time apart. So I’m not really going to go into detail about the trip as far as all that we got to do and see. At least not right here right now! But I do want to thank all the people who were so generous in giving to our trip and giving advice and prayers and all that good stuff!

It’s amazing to me how misleading social media can be. We can really make something seem like it’s totally fine, or make it seem like we are the happiest we’ve ever been. I’m so curious how much goes on behind the mask of a cute photo and a clever caption. Well because I’ve been totally transparent with you all throughout my journey, I want to lift the mask off our Europe trip and tell you about the not so glamorous side. The side that I was frustrated by, heartbroken by, saddened by, and the side that I wanted to escape from so bad. The cancer side.

Yes, it’s true, even a seemingly perfect trip to paradise will not allow you to escape the frustrations of suffering. It can often seem that way, you know like in movies when the dying people make a bucket list, drain their bank accounts, and live out their days in paradise. Seems like a very tempting idea and I will admit, I wondered if Europe would be that for me. Unfortunately the movie version of dying and the real life version are very different, so I’ll share with you what it’s really like. (keep in mind that I really DID have fun and I really had some wonderful experiences and I’m not making this to complain in any way, I’m simply allowing you behind the mask to see the truth)

The first couple days in Athens I had a burst of adrenaline and energy and was able to start off with a 4 hour walking tour. I had this false sense of, “Wow I can conquer anything, look at me go.” I really started forgetting about being sick as I gazed upon the sights like the Acropolis and Mars Hill and as I blended in amongst the tourist crowd. My tumors were giving me a little pain but they weren’t too big and they were still easily concealed with a bit of makeup.

The first day In Thessaloniki I woke up to an exhaustion like I’ve never felt before. My body felt like it was full of sand and my mind was cloudy. I could hardly function and I lay there wondering if I could even do anything that we had planned for the day. I also noticed that my left ear had officially gone deaf thanks to the tumor pressing up against my ear drum. Thankfully my husband is gracious and knows me so well because he insisted that I rest. It was a humbling moment for me, resting in Europe!? No way did I want to do that. I had a plan, I had a list, and being sick was not welcomed there. It was necessary though and I knew that. We were able to spend the next day at a beautiful island and enjoy some wonderful food.

In Paris I started to experience some pain in my rib cage. It was a new pain to me but not one that could be ignored. It was sharp and made it hard for me to walk around without taking a break. As we made the trek from train to train to bus to sight to flat I would feel weaker and weaker. That’s when I really started losing sleep. I would go to bed at night to be woken up my extreme pain in my face tumor and rib cage. It kind of alternated so that I couldn’t win. I would sleep for an hour and be up for 3. Pain meds did little for me and my poor Husband did everything he could to help soothe me to sleep, resulting in sleep loss of his own. I was so low on energy that Adam had to push me in a wheelchair around the Louvre. It was disheartening, and it affected my energy, my perspective, my positivity, and my “paradise vacation.”

By the time we made it to Nice my tumors started rearing their ugly heads, amongst all the other issues I was experiencing. I had about 4 new ones, and my older tumors started to quickly grow and become an angry red shade. That was difficult not only because of the pain and the side effects they bring, but because Europeans are the WORST about staring! My goodness the gawks that I got made me feel like a circus or a zoo creature. And the worst thing is, even when you make eye contact back, they still stare! They don’t even try to break your gaze or try to go, “Oops she caught me staring.” It was actually mortifying and it made me not want to go anywhere. I eventually got back to my roots and ended up taking it a step further by not wearing my wig, haters gonna hate right?

So our trip down the French Riveria was much easier because we had a car, so that was a nice break for my energy. But as my tumors got bigger I was experiencing new side effects. One of those being not being able to swallow. We were driving from one French Village to the next, when I went to take my ibuprofen pill and it got stuck. It got stuck and as it dissolved it started burning. This is NOT how I pictured our paradise stroll through the French countryside. Before I knew it we were pulled over so I could make myself throw the pill up. I leaned over to puke with the view of France blurred through the tears of my frustration.

I spent the rest of our trip staying up almost all night from the pain in my tumors and rib cage, unable to catch a break. I would just sit up and cry and try to let Adam at least get some rest. The tumors continued to grow and spread, making my face numb, making my eye protrude, pinching my throat and moving my nose. So there you have the not so glamorous side of Europe, the unmasking, the truth. The truth as I found out is that I can’t escape this cancer.

But what element did the suffering bring to my trip that I wouldn’t have experienced otherwise? It helped me realize that if life is supposed to be centered around me and my happiness and my wants and my bucket list, it will fall short. I had my paradise vacation all planned out, and nothing went as planned, and if it were all about me then that would have been one of the most devastating trips ever. But because of my suffering I was reminded that it’s not all about me, and it forced me to think more deeply about what it is about. So instead of trying to find identity in being the most fashion forward person in Paris, or trying to be so cool for getting to be in Greece, or for living my Notebook moment in the French Riviera, I was able to focus on the quality time I had with my husband. Yes even the middle of the night crying sessions, or getting lost in the Louvre because there is no wheelchair lift. I was also able to focus on the majesty of God’s creation through the intricate design of the Notre Dame or the clear blue waters in Greece. I also realized that instead of rushing to fulfill a bucket list, or spending my last moments at the most beautiful places on Earth, I just want to be home. My bucket list is spending as much time with my loved ones as I can. My bucket list is experiencing the richness of relationships and leaving behind memories with them. My bucket list is allowing God to use me in these times and experiencing his wonder through the beauty of creation and beauty of community.

 

 

What’s Next???

I’ve been a little MIA lately so I know a lot of you are begging for an update! Well, the update is, the pill isn’t working. I’ve slowly but surely been getting sicker and weaker and my tumors, them nasty tumors, are growing and rearing their ugly heads in new places. Man I hate those things. Adam and I always joke around about wishing we could just pop them right out. Actually, now that I’m visualizing that, I’m glad that’s not possible, ew! Anyway, I definitely feel the effects of my cancer more than ever. I’m not sleeping but a few hours at night, I’m in constant pain from my tumors pushing on nerves, I have a harder time swallowing because of my throat tumor, I’ve lost a bunch of weight and can’t seem to keep any of it on, and I’m so dang tired and have low energy all the time. It’s not good and it’s not fun.

Lately it’s been kind of difficult because I feel like I don’t recognize myself. This weak, sickly version of me is actually kind of new. My family has noticed my slow deterioration as well, and it’s been especially hard on them because they feel like helpless spectators. It’s hard for me because I so badly want to say, “The old Hayden is still here, she’s still the lively, bubbly, adventurous, giggly person, she’s just being overshadowed by the cancer Hayden.” I have to fight feeling almost guilty for not feeling like or being “me”. But this is my new normal, and it’s not my fault and it’s not in my control and I have to give myself grace for that. It’s kind of like when someone has the flu and they aren’t themselves and you just kind of dismiss it because you know they aren’t feeling well, only this time it feels more permanent.

I head back to Seattle tomorrow with Adam and we will attend the Merkel Dinner! I’m so excited to see old friends and make some new friends, the dinner is always so wonderful, even though I’m always the youngest one. And this year I’m a speaker for it! My doctors asked me to speak because they think that I’m inspiring, which is just so humbling. After the dinner I will get an infusion of immunotherapy. I have to be honest, I don’t have a lot of hope in immunotherapy anymore. In fact, I really struggle with having any hope at all these days. It seems so impossible to envision myself healed. I have over 20 tumors and as they grow I feel less and less hopeful for a cure. But God is teaching me that instead of expecting him to do the things that I want, or the things that seem like they’d be right, I should just expect more of Him. Like, instead of sitting here placing all my hope in healing and expecting Him to perform a miracle. I want to expect that God is a powerful God, capable of miracles, I want to expect that He will never leave me or never stop loving me, I want to expect that He knows whats best for me, etc. It’s not about WHAT he will do, but WHO he is. I hope that makes sense. I expect things of God’s character, not of His actions because who can know the mind of the Lord? I have an understanding that He is powerful enough that He CAN heal me, but I also accept that if He chooses not to (on this Earth) then that’s because it’s not what’s best for me.

Oh, side note, actually kind of a big side note, ADAM and I ARE GOING TO EUROPE! So it was a very last minute decision but I kind of figured, if these are potentially my last days, weeks, months of life, then I want to have my last hurrah. I’ve always dreamed of going to Greece and Adam has always wanted to go to France. So the Lord opened the door and our last hurrah (maybe) will be a trip from Seattle to Frankfurt to Athens to Thessaloniki to Paris to Nice where we will rent a car and drive the French Riviera/Coast, then back to Frankfurt and home! We leave Tuesday the 12th and get back on the 25th. I am so excited you guys! Please pray for a supernatural energy for me and also for me to give myself grace and patience because I’m still sick and won’t be able to do a million miles a minute like I used to. I am so beyond blessed by this and I can’t wait to share the moments with you all!

 

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!