Anniversary.

A year ago, September 21, I got my diagnosis. After months of abdominal pain and bleeding I woke up in the middle of my colonoscopy to see a massive tumor and know it was cancer. I was told I had inoperable stage IV colon cancer.

I have discovered treasures of darkness. I’ve gone into deep darkness of the soul over and over. But I’ve learned how deep true friends will go with you. I’m learning how to see hope and love in pitch darkness. I’m finding the faith to not seek rescue from God but find refuge with God, letting him comfort me in it more than delivering me from it. I’m trying to see past circumstances to stay fixed on the character of God when I don’t recognize Him. I’ve found that worry and “what if’s” never really prepare you for the bad they only rob you of right now good.

I’ll be reflecting on this more… what are my “takeaways from the worst year of your life”? I will continue to declare Gods truth over myself even in my pain, and discomfort and sadness. I won’t be called a victim when The cross and His resurrection declares me a victor! The hope and good news I have is so much better and bigger than the darkness and loss.

To update you all, I’ve been taking chemo pills for… two months already? I get an infusion of Avastin once every three weeks, take chemo pills (Xeloda) for two weeks and then have a week off. Each cycle is three weeks (if that makes sense). It’s been… ok. Not as much of a respite as I had hoped. So much better than hard core chemo and the chemo pump, but no walk in the Park. Where chemo before knocked me on my butt for five days and then let me climb out of my chemo cave to feel good for a week, chemo pills leave me feeling mediocre constantly. I’m nauseous always, but it’s very mild. I’m consistently more tired than my good weeks during hard core chemo, I just don’t have energy. This makes my workouts more inconsistent. I’ve developed Foot Hand Syndrome (different from Foot Hand Mouth Disease). It’s cause by toxicity from the chemo pills, they think the chemo leaks out of the capillaries into the soft tissue on the bottoms of your feet and palms of your hands. This makes them bright red, hot, tingly, and progresses to dry, cracking, pealing, and burning sensations. It feels like walking on hot asphalt barefoot. I’ve had several days of limping and/or being too uncomfortable to walk. The other down side to chemo pills is I have a once a week episode of horrrrrrriiiible diarrhea. Mostly horrible because the intestinal cramps are so painful that I throw up and get lightheaded. It only lasts like six to eight hours though, not for days at a time. I still prefer it to hard core chemo even though the subtle feeling bad constantly is more demoralizing.

Pushing through all this to try and have normalcy has been increasingly difficult. Not being able to do things with friends or in the gym has been really disheartening. I’ve had several episodes of tears over “just wanting to be a normal girl”. I’m almost to the point where I can go back to work, do workouts as prescribed but then I’m struck with horrible cramps or can’t walk because my feet hurt. Until this week, I’ve had no concrete plan of how long I would need to take the chemo pills. It was a cycle by cycle basis. My body has been responding progressively worse to the chemo, side effects are becoming more debilitating and with quicker onset each cycle. My body has been telling me louder and louder, “we need a break!”.

I had another CT scan to check up on my cancer. There were a lot of questions. Had it spread on lighter dose chemo? Were there new tumors in my liver or colon? Was it growing in my lymph nodes? Did it grow in my lungs? This scan would determine if chemo pills were effective for managing my disease. Was radiation still appropriate? Could I go off chemo and have my colostomy reversed soon?

I didn’t get my barium smoothie this time. It was worse. The tech said “let’s have you take this solution, it visualizes the bowels better. Tastes worse than the barium smoothie but it’s lemon flavored”. Well, it tasted like cleaning fluid, no joke or exaggeration, literally soapy. It tasted like lemon cleaners smell, not lemon flavored. I had this thought of, “someone made a mistake, this is cleaning fluid, I’m poisoning myself”, but then acknowledged that they would know right away during the scan if the contrast didn’t work and could call poison control so I was probably safe.

The scan showed that seven months after my surgery there were still no new tumors in my colon and liver. This is great news, as both the colon and liver have high tumor recurrence rates. All of my lymph nodes were still normal sized, meaning no measurable cancer. But one of the suspicious nodules in my lung had grown another millimeter. Last November it was two millimeters, July it was five millimeters and is now six millimeters. It’s still tiny! Not bad news, per say. Not the best news but no new tumors and treatable lung nodules is great in my book. This means we can plan.

Currently the plan is to revisit the possibility of radiation and get a biopsy of that nodule to be certain whether it’s cancer or not. If radiation doesn’t blast them enough I can have surgery to take out a wedge of my lung and get rid of it that way. Two treatment options, so treatable!

So I’m in a good space. Tired, sad, wanting to be past this, but still anchored to hope and truths bigger than my circumstances.

I want to leave you with something. There’s this great song by Ellie Holcomb, “Find You Here” that is just so good! Here’s the lyrics,

“It’s not the news that any of us hoped that we would hear

It’s not the road we would have chosen, no

The only thing that we can see is darkness up ahead

But you’re asking us to lay our worry down and sing a song instead

CHORUS:

And I didn’t know I’d find You here,

In the middle of my deepest fear

But You are drawing near

You are overwhelming me with peace

So I’ll lift my voice and sing

You’re gonna carry us through everything

And You are drawing near

You’re overwhelming all my fears with peace

You say that I should come to you with everything I need

You’re asking me to thank You even when the pain is deep

You promise that You’ll come and meet us on the road ahead

And no matter what the fear says, You give me a reason to be glad

Here in the middle of the lonely night

Here in the middle of the losing fight

You’re here in the middle of the deep regret

Here when the healing hasn’t happened yet

Here in the middle of the desert place

Here in the middle when I cannot see Your face

Here in the middle with Your outstretched arms

You can see my pain and it breaks Your heart

Rejoice, Rejoice

Don’t have to worry bout a single thing

Cause You are overwhelming me with peace

Don’t have to worry bout a single thing

You’re gonna carry us through everything

Overwhelming peace”

This is my real.

Next Steps.

(Double post day! You may want to read “Again.” before you read this one. But you don’t have to or anything I’m just trying to be chronological about all this.)

A month ago I was moaning about how I just needed a break. This little heart of mine is exhausted. Tired of feeling miserable from chemo, playing catch up with my life, looming disease and unknown, blood thinning injections, skin breakdown around my ostomy, bad news. Just tired! Well folks, I finally got a break. My CT scan says no growth of any “nodules” and no new tumors or masses or nodules or spots or other synonyms of cancer. My disease is still microscopic and according to my oncologist and radiologist is “stable”.

I’ve still got a four millimeter nodule in my lung and the other two in my lungs are smaller than that and the periaortic retroperitoneal lymph node is still only seven millimeters. But anything less than a centimeter is deemed microscopic disease and some even say it’s not measurable. This is somehow so different for my brain than the it’s microscopic in your lymphatic system and spreading into your lungs even though nothing is really different. I feel more stable like my cancer isn’t exploding and spreading like crazy despite the systemic, hard on my body chemo.

I was lucky enough to get this news before I went to a family church camp that I’ve gone to every summer of my entire life. I was surrounded by people who have known me since I was born and have been prayerfully walking each and every step of this crazy road with me. I have distinct memories in high school and college of feeling like my life was going all wrong but knowing there were people who didn’t know what was going on but were praying for me made something in my heart rest. Knowing people are being more faithful to pray for you everyday than you are to eat breakfast gives you a level of confidence that can’t be generated by positive self talk. It’s powerful. But I got to be surrounded by these people and share the good news with them. It was a pretty cool experience.

A month ago I went and met with my oncologist to discuss the implications of stable microscopic disease on future treatments. What we decided to do is switch to a lighter dose chemo. Thank you Jesus! This means chemo pills and only one infusion. Two thousand milligram pills twice a day for two weeks then a week off (a three week cycle) and Avastin every three weeks. Three weeks ago I took my pills and went in for my infusion like a song bird. I was stoked and had every expectation that I wasn’t even going to notice I was still taking chemo. Neither of the drugs had side effects of nausea so let me at em! I told myself as long as I wasn’t nauseous I could tolerate anything! Well that was grossly unrealistic.

As soon as the infusion started the nausea hit me. I convinced myself at first it was psychosomatic (my mind was inflicting the nausea not the drugs). When that didn’t decrease the nausea I said, ok, it’s only the steroid I take before I get the chemo that’s making me nauseous. It’ll pass once the steroid is out of my system. I was pretty couch bound for the rest of the day which was horribly disappointing. Then the nausea persisted every day I took those damned pink pills. I’m still not sure why I’m nauseous, since it isn’t a side effect.

I was so wanting to get my life back! Go back to work at the hospital, start doing intense workouts again, reopen my physical therapy business, and travel! But nooooo I was plagued by a three out of ten constant nausea that increased to a four an hour after I’d take the pills. Zofran and Reglan didn’t do anything. So I’m resigned to learn to coexist with nausea and fatigue while I take these pills. I get to practice mental discipline and ignore it and push through it if I want to reclaim my normal life. I’ve gained weight which means I’m stronger. I’m back to Olympic lifting and doing workouts but am still very limited by fatigue and the weird dizziness with exertion. But I’m getting stronger every day!

At this point, I don’t know how long I’ll be taking the chemo pills. I know the plan is three cycles then we’ll hopefully do re-scans and it will show no new growth or spread. We may still do radiation in the future but I’m not sure. Then at some point in the future I have to be stable enough to not need chemo for three month in order to have the surgery to reattach my colon and get rid of this poo bag on my stomach. So I still have a big surgery and hospital stay to look forward to.

It’s a strange place to be, in all honesty. If I’d never had cancer you’d look at my scans and say I was normal and healthy (with the exception of my massive surgery and colostomy). My disease (if it’s even there) is so small it’s still not measurable. By all objective measures I’m disease free? It’s weird to say that. So I’m making myself sick with this chemo, and that feels lame and excessive. But at the same time the chemo is essentially keeping the disease dormant. This lighter chemo could potentially not be strong enough to keep the disease dormant and my next scans could show enlarged lymph nodes and new tumors and growth of those suspicious spots in my lungs. It’s a very strange place to be.

The mental battle still rages…. Don’t be afraid of what’s not there, but very likely is there. Don’t hold on to those experts words that said I would never be cured and could die within five years. Don’t grieve for what all this has cost you because better things are just ahead… I feel I have been promised a long, full, life and I still have to fight to claim those promises as fact. I still cry and feel sorry for myself frequently and battle hard against that. I have been very stable lately on God’s character which helps soooo much! When I doubt that or allow my circumstances to paint him differently than who He is, is when things get super dark and hard. Oswald Chambers said “Unless we can look the darkest, blackest fact full in the face without damaging God’s character, we do not yet know Him.” … We’ll shoot. That’s real.

I’m trying to find normalcy, routine, and make the steps to slowly live the life I see as mine. I can see it though, I know what I want it to look like… that’s a pretty big deal. I have a real vision and hope for the future. But for now I’m settling on battling with nausea and using my energy for things and people I looooove!! I’ll keep you posted!

Again.

(Written in July. Forgive the delay)

Here I am again. In the radiology waiting room with bad art and annoying television. We’re repeating imaging to look at the nodules in my lungs and lymph nodes to ensure they aren’t growing and maybe they’ve even disappeared.

About my lungs, there was this horrible window of time where it was possible I had tumors in my lungs that had grown and spread while I was off chemo preparing for and then recovering from my surgery. You might remember, my last CT scan after my surgery said three nodules in my lungs had all grown. I knew there was maybe one nodule in the very beginning but because it had been unaffected by my pre surgery chemo it had been determined it most likely wasn’t cancer since all my cancer had shrunk dramatically with chemo. This would mean we’ve got some chemo resistant cancer in my lungs! We would have to completely change the direction of future treatments! Plus just the idea of having cancer in my lungs was unnerving. I’d gotten comfortable with the whole colon, liver, lymph node tumor thing but for it to be even more progressed than that was very disheartening! There was this small hope that what the radiologist had seen was present the whole time and wasn’t new. I’d still have to mentally adjust but somehow knowing they weren’t new would comfort me.

… and a man in the waiting room just threw a magazine across the room and yelled at his wife that he’s sick of being treated like an invalid. Oh my…

My oncologist spoke with the radiologist directly and asked him. What’s the deal with these nodules? Are they new? Were they always there and just too small to be reported by the other radiologists? The good news is, yes. He saw the same nodules on previous pre surgery CT scans. But where they were unaffected by chemo they did increase in size by millimeters while I was off chemo. I asked my oncologist why hadn’t they been affected by chemo and thought to be calcium deposits not cancer.

… oh man now the man is wobbling up to a stranger and asking her to bring up the World Cup game on his phone. Oh dear…

She said some cancer is slower growing. Chemo targets rapidly dividing cells and so if a cancer isn’t dividing as quickly (growing) it’s not going to absorb the chemo as much and will be less affected. What this concludes is that my cancer is damn aggressive and very sneaky. Hiding in my lungs and lymph nodes. Tsk tsk tsk. So it was concluded I needed even more chemo, two more rounds worth with an added medication.

… my goodness, sir, the volume on your phone is very very loud…

my last post had left off with me being beyond disappointed. My body had had enough chemo. The nausea was relentless and the intestinal cramping was crippling. That’s not even mentioning the emotional and mental exhaustion of clinging to faith an hope when things turn for the worse not the better. I had been entertaining ideas of going back to work, hitting workouts hard, starting to intern at the gym, starting up with my physical therapy business, I had made plans for my birthday to take a vacation with my brothers and go camping with my friends and now they would be bulldozed by more chemo. I felt my heart starting to slip into lies of darkness and death and unfulfilled, broken promises.

Honestly, looking back, I don’t remember how I was brought back to solid ground again. I remember that I had to make a choice to believe the Lords promises… AGAIN. I had to chose to believe He is just as powerful and faithful and good intentioned. I had to chose to believe that He hadn’t forgotten about me and changed His mind. AGAIN!!! … This war is relentless.

So today I have repeat scans. I survived two more rounds of chemo, just one round shy of my pre surgery chemo and way harder on my body. I’m choosing to believe nothing’s grown since my last scan and that the blood clot in my lung is gone. Here’s to fighting for life and hope and cures! Banana barium smoothie we meet again. Bottoms up!

…. intermission…….

Got the results from my scans, everything is stable! This is good news, everything is the same size as the last scan after my surgery.

Post op

It’s been three months since my surgery. Recovery has sure been… interesting. Let me start by saying I am doing “remarkably” well. If you saw me on the street you would never know I have a massive scar stretching from my sternum to my pubic bone, open wounds packed with dressings or a bag stuck to my stomach that fills with poop. I’m not back to normal energy. I am still limited by pain. But my life looks normal. I’m going out to dinner, spending the day with friends, running errands, working out, but it’s all limited. At best I’m at eighty percent of my normal pre surgery self.

Since I’ve been home things have gotten dark. “Dark?” you might ask, “wasn’t getting diagnosed with stage four cancer dark enough?” Yeah. Yes, definitely. But these past couple months have been way worse! Walk with me through a metaphor… There’s this path through the woods. It’s night, it’s dark, there’s enough moon and star light to see the path just before your feet. But either side of the path is shadowy. You can hear leaves crunching or a rustle in a bush just ahead. You can swear that something is watching you. You see movement out of the corner of your eye but whenever you turn your head it’s gone. You strain your eyes peering into the shadows but can’t make out anything but menacing shapes. I mean, it’s like walking alone back to your cabin or tent during summer camp. It’s like walking to your car by yourself in a sketchy neighborhood with no streetlights. All you want to do is run or hide or scream. The panic rises in your chest, the hair on your neck prickles. The threat of the unknown. Recovery has been like this. I feel like lies and fear and “what if’s” are hunting me, stalking me. Most people feel completely alone and the darkness swallows them. They can’t outrun it, and they eventually get completely bombarded by the severity of the darkness and depth of the “what if’s” and are left hopeless and paralyzed. We all know people who have lived most of their lives in this place. Heck, maybe you’re in that place. Maybe it’s not cancer. Maybe it’s a tough marriage, maybe the death of someone close to you, maybe it’s substance abuse, maybe depression or anxiety, or a bad break up, or whatever! There is so much darkness in the world! And so often the paths of our lives go through some damn dark woods. I am so lucky… (Is it fair to say that? Luck has become such a foreign concept. But you get the idea.) I am so lucky (let’s be real gifted) to be surrounded by friends who are willing to walk with me through the darkness. Often when you’re out in the dark you just wish there was another person with you and it would make you so much braver. I not only have my incredible family and friends, I have people all over the country holding me up in prayer and anchoring me to hope. I’ve said this in previous posts and it continues to be true. Even better, I have a God who walks with me, not just watching out for me, rooting for me, or is sending me good thoughts. He is doing battle for me. I can’t tell you how many sobbing car rides or damp pillow cases have been interrupted by this beaming flashlight into the darkness. He’s fighting back the darkness for me and not just holding my hand, but shielding me and carrying me past some of the most horrifying and disappointing and heartbreaking darkness to date. That flashlight shows me the shadows of fear for what they are and differentiates truth from the “what if’s”. Guys. This can be true for you too. Let me tell you more about my “haunted woods” path and the darkness I’ve been wading through.

Things were progressing right on schedule according to the timeline set up before surgery. Six weeks after the surgery I would start radiation then do some light chemo just to be thorough. The problem was I had been in the hospital three weeks longer than expected. So I started up my medical appointments a week after being home. It felt rushed. I wasn’t ready to undergo any treatment or make any medical decisions but ok, here we go. My oncologist hooked me up with a nearby radiation oncologist for a consult. There was one lymph node that wasn’t removed during surgery that had shown up on my PET scans my surgeon had wanted to target with radiation. I was tired from not sleeping well, hungover from 4 am sleeping aids and having narcotic withdrawals to boot. After waiting for an hour, in rushes this woman. My surgeon Aunt, (the one with the secret doctor network) had warned me about radiation oncologists. “They’re physicists. They are super smart and intelligent but also very nerdy. They have horrible social skills so don’t be alarmed.” This was definitely true of this woman. She lacked anything that could be termed as social graces. She was an abrasive, arrogant, loud talker. She spoke to my mother and I, in what could easily be mistaken for a yell, and everything that came out of her mouth was negative. I won’t give you the conversational play by play but her message was simple. Why would she do radiation on lymph nodes, or whatever, where there was no measurable disease? That would be prophylactic radiation therapy and not only did she believe it was unethical she couldn’t find a scrap of research that said anything like it had ever been done. She also made me and my mom feel like it was our idea and we were complete idiots and had insulted her for even thinking it.

Here’s the backstory. During the surgery, they removed the regional lymph nodes around the primary tumor in my colon, thirty-five in total. Thirty out of that thirty-five came back positive for cancer. None of these had shown up on any image studies, probably because they were too small. This was a complete shock and meant that the disease in my lymphatic system was far more extensive then they thought. It also meant that it was just hiding out waiting to grow and spread. Eight rounds of aggressive chemo hadn’t destroyed it. Massive surgery hadn’t removed it and the worst part, I was far from being cured. My surgeon was unable to remove the lymph node next to my heart during surgery. He recommended targeted radiation aimed at that lymph node. It had shown up on imaging, we knew cancer was there, he just couldn’t get to it. My oncologist had agreed with him radiation was my best chance for a cure.

To be yelled at by this doctor telling me I didn’t need radiation was both good and bad news. It wasn’t like I wanted radiation. I just wanted to be cancer free. But hey if I don’t need it that was great news. My oncologist was apologetic but insistent that another consult with a different radiation oncologist was my best bet. Off I went to another doctors appointment (my third that week).

Dr. Marquez was an authoritative version of social grace. She also rushed into the room but was empathetic and kind in a “I am a boss, check this out”, kinda way. She told me the other radiation oncologist was a black and white, by the book, gold standard, kind of doctor. After going over my case and doing tons of research she found… there was no literature published about radiating lymph nodes with microscopic disease. But she explained that she was a doctor who saw grey where other doctors saw black and white. She believed that using radiation could be used in conjunction with the surgery as more of a “mop up” approach. She would use data gathered from studies of other cancers but for my type of cancer there was no precedent. She liked my surgeon’s perspective but didn’t agree, it wasn’t enough. She recommended not just radiating the lymph node he had missed during surgery but the entire posterior peritoneal lymphatic chain, not just radiating my pelvic cavity but also my abdominal cavity. It would be extremely harsh on my body but she told me based on what she had read about my history that it was clear I was a fighter. Aggressive radiation was my best option for a cure. We scheduled a CT scan tentatively for the following week to plan and map out my radiation.This is the radiation plans doctor Marquez mapped out on the table for me... thanks?

You can see where things are looking super shadowy. I could swear there was something following me down this dark path. I could hear footsteps looming behind me as fears trying to negotiate their way into my heart. The surgery was successful in doing all it was intended to do but my cancer was a bigger more aggressive beast than they had guessed. Wait, it gets better…

The following Monday was one of the worst days of my life. I had an appointment to re-consult with the doctor I had first met with at City of Hope. He was a leader in colon cancer research and very well respected. My oncologist wanted his opinions and recommendations on future treatments but he refused stating it had been too long since he’d last seen me. So to facilitate him sharing his vast knowledge I went for a “check up” post surgery. He was cordial and thorough but his opinion broke my heart and opened the door to fear and lies just wide enough for them to flood in. His message was simple. “You will never be cured. The disease is too extensive in you lymph nodes. If it isn’t in your lungs and heart already, it will. Radiation kills bone marrow and you will need all the bone marrow you have to tolerate the extensive chemo you will need for the years to come.” …. let that one sit on you for a second. Wow. I will never be cured.

The good news is, I’m rational. I’m compartmentalized. But I could not keep back the tears on that drive home. I try not to cry I front of my mom because I know it just makes heartbreak more heart breaking but for reals? “I don’t mean to be negative. But I need to be honest with you about the severity of your disease and my recommendations.” I had to do some wrestling on that drive. I have always felt like I was going to be cured. This is a weird path in my life that I’ll look back on later and say “Thank you Jesus you brought me through THAT!” But this man was telling me that this was wrong. That I would never be brought through it and it would eventually kill me. Morbid. Dark. I KNOOOOooooow!!

So I was left with a serious predicament. Do I stay aggressive with my treatment go ahead with radiation and shoot for a cure but possibly ruin my ability to tolerate future chemo treatments? Or do I go conservative just do chemo and keep the disease from progressing? I spoke with my surgeon, what did he think? Radiation would not affect him being able to put my intestines back together when the time came for my colostomy reversal. He said six of one half a dozen of the other and there was no wrong answer. My oncologist said the same. So it was up to me. I prayed and deliberated over it for a couple days.

In college I implemented this rule when making impossible decisions. Because I believe that God has a “best” way in life, he cares about the decisions we make. Rarely do we hear Him say “this is the best, do this”. But one thing that’s been promised us is that His ways are paved in peace. So I hypothetically play out both options and go with the one that I feel more peaceful about. It’s like using Rock Paper Scissors to show me wether I want a hamburger or burrito. If I’m disappointed that burrito won I’m going to get a burger. I had the most peace about staying aggressive with this cancer. I was still in the fight mindset. I thought that if I took a step back with treatment it would screw with that mindset and cancer is trying to dominate my life so I can’t start letting it now. “He has not led you this far to die in the galleys!” kinda thing. So let’s give this fight all I got! Full speed ahead!

The day before I was going to start radiation my radiation oncologist doctor called. She had presented me at “tumor board” earlier in the week. Tumor board is a meeting of multiple health disciplines involved in the care of cancer patients (doctors, surgeons, oncologists, radiation oncologists, nurses, the works). They present certain cases and discuss what can be learned from treatments already performed and what future treatments should be. All the pros and cons are weighed and everyone that has an opinion shares it. The result of my case being discussed was hold radiation for now. “It appears there’s nodules in her lungs and lymph nodes even though they are to small to count as measurable disease. Blast her with more chemo first. She responded well to the regiment she was on before so put her back on that for two more cycles (four rounds) then reassess the disease and decide if radiation is still appropriate”.

My hair was starting to grow back. I was starting to have less pain. I was starting to live my normal life. Chemo is not what I wanted. The nine out of ten relentless nausea and fatigue were not supposed to be in my cards. Man oh man was I bummed. The regiment would be different though because my fingertips and feet were still numb from one of the drugs, so I couldn’t have that one anymore. Which meant they would up the doses of the other meds.

My body did not tolerate this bout of chemo well. I think because I was weaker from the surgery and sepsis? All I knew was it was way worse than all my previous sessions. Round two I dry heaved. Round three I threw up. Round four I was passing out in the medical office and couldn’t walk so they took me to my car in a wheel chair. The nausea was more severe, long lasting and more disheartening. Chemo was kicking my ass.

One complication that rose up was that I started developing these superficial wounds along my incision. It was like a pus blister would slowly painfully form for a couple days then erupt out of my incision leaving a pocket that required packing to heal and prevent an abscess from forming. These things were painful and slightly debilitating but of no concern to my surgeon. Just an inconvenience for me. And because of chemo would take twice as long to heal.

Then, of course, right before my last round of chemo I had my repeat CT scan to track progress and see how things responded to chemo. My dad was in the hospital out at Loma Linda for a heart procedure so I headed out there after my scan. That banana barium smoothie was a breeze! While sitting with my dad I got a call from my oncologist. “Amy you have a PE in your lung. Are you symptomatic? Short of breath?” A blood clot in my lung. I laughed. No I don’t have any symptoms I even worked out last night with no problems. I had done my first hand stand pushups and snatches with 65# (the heaviest yet since surgery). “Well we need to admit you right away. Where are you? Can you go to ER?” I ended up being admitted for blood thinners and kept in the hospital three days. I went to crossfit and did the workout the day after discharge and half Murph two days after that. The down side is I need a blood thinning injection twice a day and I don’t have the fat to make it not super painful. Yet another thing I need to be worried about. Cancer activates clotting factors in the blood that cause clots to get lodged in your lungs, heart, brain, legs. It’s a really serious life threatening thing if untreated.

The day after Murph I finished my last of four rounds hanging on by a thread. The plan was I would start chemo pills and get one infusion every two weeks. They would still cause diarrhea but they shouldn’t make me nauseous! After 6 weeks we would revisit radiation.

I was so excited to get my life back! Feel better, have more energy, and go back to work. I had trips scheduled and birthday plans made. Things were looking up! I was in the shower washing my chemo damaged hair when I saw I got a call from my oncologist. I turned off the water and answered. Apparently the results of my scan were not what they’d hoped. My colon and liver look great, the lymph nodes are all still within normal size range but what was alarming was that there are three new spots on my lungs. We can’t know for certain that their cancer because we can’t biopsy them. But when you have cancer and you have abnormal cell growth it’s pretty likely cancer too. Also my tumor marker had risen while I was off chemo which means my cancer could have spread while I was off chemo recovering from surgery. Which means I need two more rounds of chemo. This news crushed me and fear yet again rushed me and enveloped me. This was the new lie, “You won’t be cured. God is a liar. You will fight this for as long as you can stand it and then you’ll stop treatment and be dead within five years. ” That lie feels so real. I was mad at God a little. Really? It would spread while I’m off chemo recovering? Now I have cancer in my lungs? Microscopic disease is so hard to fight. How long can I hold out? I will never be better. I will fight cancer till it kills me. Dark dark dark.

So now I have a new choice. Do I believe what looks and feels true or do I trust that God is everything He says He is and capable of fulfilling every promise He ever told me? It’s really not a hard choice. I’m going to chose to believe that He wants me to live a long full cancer free life and He’s going to be the one to make it happen. The alternative is to say God is not who He says He is and is powerless. There’s no hope for me to be cured and I’ll probably be dead in five years. Faith is hard. But why would I abandon a path of hope for a path of fear? The same choice is offered to you everyday.

I would love nothing more than to elaborate with you in person so feel free to reach out. Let’s get coffee or lunch or ice cream.

Surgery

Where do I even start? It’s been a while. I haven’t wanted to put in the energy or emotion to update how things have been going. So here’s highlight reel of my massive surgery.

I had surgery on February 12. They cut me from sternum to pubic bone. They took out a pretty piece of my colon, the surrounding lymph nodes, and sixty percent of my liver. But they got all the cancer. After the surgery I’m now considered cancer free. Everything went as planned! The incision was straight which means the scar will be pretty. Initially there were some issues controlling my pain. Apparently most of the really intense pain medications (morphine, fentayl, dilaudid, tramadol, methadone, you name it they tried it!) I’m not very sensitive to. The nurse or nursing assistant would ask me my pain level on a scale of one to ten during their rounds. I’d generally respond, “Uhh around a seven or eight.” “Well are you pushing the button for your pain medication?” At the time I was on self serve dilaudid IV pain pump. “It just makes me fall asleep it doesn’t control my pain!” as I reluctantly push the button and drift off into a lethargic pain haze. But within the first week things were going as planned and I was stable. They had started me on a liquid diet and I was already walking almost a thousand feet in the hospital hallways. I was pretty excited, my parents were pretty excited, it looked like everything was going even better than expected.

Then… I started having more pain. I know I said that there were some issues controlling my pain but this was a nine out of ten pain that was constant and unrelenting. On Saturday night, five days after surgery, I “crashed”. It started with what felt like a maximal cramp of my lowest ab muscle that wouldn’t release and then worked its way segmentally up my entire abdomen. Maybe you can imagine, maybe you can’t, but at this point I have staples from my sternum to my pelvis so having every muscle in my stomach start progressively cramping was very uncomfortable, to say the least. Then, I started shivering. I didn’t have a fever, yet, but I’ve come to recognize since, that shivering is a severe pain reaction for me. The shivering just started in my jaw but then went through my entire body to the point where I was almost convulsing and it looked like I was having a seizure. I have a feeling it was a pretty intense scene. I’m convulsing and crying in pain, my mother is crying, my dad is threatening to call 911, the nurses can’t get the doctors on the phone, and I’m in the most excruciating pain of my life. After that things get fuzzy for me. I’m told I developed a 105° temperature and then my blood pressure started dropping and my oxygen saturation started dropping. They put me on an oxygen mask with six liters of oxygen and I was barely saturating at eighty percent. I was on my way out, folks. And by out I mean, dead. I literally almost died. I feel so good now it’s crazy to think of it as anything other than a scary story or a bad dream. I remember the following day in patches. I’m told I was “in and out”. There were lots of tests. One CT scan they tried to take me to, my vitals went unstable again and they had to wheel me back to my room so I wouldn’t die during the scan. Finally, I was transferred to ICU to await surgery the next morning. I remember having this thought as I lay writhing in nine out of ten pain, “People survive torture all over the world. If this were torture, would I talk to make the pain stop?” Sometimes my answer was “No, I can do this,” and I’d grit my teeth and pray. Other times my answer was “Yes, I’d tell them whatever they wanted to know.” In surgery, they opened me back up and gave me a colostomy inserted a J tube, and two drains. Turns out because of the chemo and my weakened immune system I got c-diff which caused the anastomosis of my colon to leak and form an abscess in my abdomen and I developed severe sepsis.

I distinctly remember waking up one morning in my third week of laying in bed in severe pain feeling miserably nauseous and this thought floated through my brain, “I’m not getting better and I’m going to die here.” No one had even mentioned the word “home”. I looked out the window of my hospital room and wanted to see the San Gabriel Mountains, my mountains. I wanted to think of home and have a hope of going home, an idea of being strong enough, well enough, to leave. It was an abstract thought. It was the darkest moment of my life. And believe me, I’ve had many “darkest moments of my life” the past couple months, this, by far surpassed them. I leaned over to my mom and said “I’m not getting better. We need people to pray.” Later that afternoon, I started to feel better, then the residents told me they were thinking of getting me ready to go home in two days. Coincidence?

I had made progress, I was medically stable and they had finally found a pain medication regiment that worked for me and my pain was controlled, like a four out of ten. After weeks at an eight or nine, four was a dream. I could go home on a feeding tube with some drains and my colostomy. Not ideal but doable. The morning I was supposed to go home I started throwing up and running a low grade fever. So they held the discharge, did another CT scan and found I had developed another abscess and there was some fluid collecting in my left lung. They put in another drain and a chest tube, while I was awake. That hurt. But they were still talking about discharge and home was a concrete realistic expectation.

That’s how my fabulous surgery and short hospital stay turned into a month long very complicated hospital stay. But I finally made it home, weak and pain ridden. My abdomen looked like a science experiment of dressings and tubes and bags. I had lost a twenty seven pounds. Turns out a couple weeks without food and having too much pain to get out of bed makes you ridiculously weak. I could walk about twenty five feet before things got painful and I needed to sit down. This was not how I pictured my life after that surgery. I was feeling sorry for myself, let me tell you! Let’s not forget the narcotic withdrawals that magnified everything negative and uncomfortable and made me emotional. It was a rough week.Ready to go home...

My dad put the whole thing into perspective when he said, “You know, a lot of people climb mountains thinking the summit is the goal. They focus on it, and dream of it, they work so hard to get there. But afterwards, they still have to get off that mountain. More people die on the way down than on the way up. That’s where you are. ” I had spent so much time just trying to get to that surgery that I hadn’t planned much for my after surgery recovery. Certainly not mentally or emotionally!

Nevertheless, recovery, here I come.I have the best support system imaginable

Pre-op.

I have surgery tomorrow.

A week ago I went and met with my surgeon and we discussed the plan for surgery and I got all my questions answered (as well as they can be). Here’s the summary. The PET scan I had the week before (the one where they inject me with radioactive isotopes and the cancer absorbs it and glows on the images) showed that indeed there is no more metastasis in my lymph nodes! (Which was one of the things I stood in faith about all those weeks ago, even when the surgeon said he could still see something and wasn’t sure.) This means I won’t have to worry about the cancer spreading to other regions of my body while I’m off chemo recovering from surgery and won’t need radiation. When I asked about incisions and how many and where, I was told if it were just my colon it would be a little laparoscopic incision around my belly button and if it were just my liver a diagonal incision just below my rib cage. But since it’s both, I’m going to have a central incision from my ribs down past my belly button to my pelvis, more or less. So basically my entire stomach is being split open. A friend joked, “Finally you won’t need all that makeup to show off your six pack, the scar can give all the central definition you’ll need”. It’s a good thing I like scars. Im just gonna say it, I will definitely miss my flat well defined abdominals and beach days will be interesting this summer.

The surgery will start in the liver and they’ll see how things look. The plan is still to remove the three smaller tumors from my left lobe and central part of my liver. If there’s time and they haven’t removed too much liver they’ll be brave and go for the forth tumor in my right lobe. Then they’ll head to my colon and take the tumor out there. If my colon is fibrous and it looks like it’ll leak they’ll then go and give me an ostomy and create an exit hole in my abdomen to allow the colon to heal without the stress of doing its job. The truth of the matter is, being a cancer anomaly, as far as age, health, fitness, and stubbornness, things like recovery, activity, and time frames are a grey area.

He said I’ll be with the anesthesiologist for the first two hours, getting baseline readings and an epidural to keep me from waking up in too much pain after the surgery. Then he’ll start the surgery around 9:30 am. “Now Jeannie,” he says to my mom, “I need you to understand that even starting that early it’s perfectly normal for me to still be working on her at eight or nine pm.” Also known as, it’s a ten to twelve hour surgery with the potential for me to be out for fourteen hours! Holy crap this is a major surgery!!!

There was more really good news given. I wouldn’t need to do golytely prep before the surgery. This was one of the things I was dreading most. Not eating before the surgery and having to do that horrible bowel prep again. I was planning on doing liquid diet for the two days leading up to the day before surgery just to make things easier. But what he told me was, I would be able to eat completely normally until the day before surgery!!! Such good news! I could do workouts and be with my friends without being a cranky starving wreck!

So I’ll be in ICU for one to three days and then in the hospital for up to ten days. Another thing he said was if he is able to remove all the cancer in one surgery I’ll have to stay in the hospital longer. I’m not a fan of this because the Crossfit Open starts the February 22. I know my doctor said walking would be a challenge after surgery but my post surgical goal is to go to the gym and cheer on my people as they do the first workout on February 23. So I hope I don’t have to stay in the hospital too long. (I’m also aware that this is pretty unrealistic but hey, a girls gotta dream!) One surgery is still the ideal and I still believe that’s how things are going to go! I’ll be on four to five days of bowel rest after the surgery which means no eating or drinking at allllll! I’ve been told I’ll be so uncomfortable and feeling so crappy that I won’t care about eating. Great. Just great.

All this logistics talk helped me recalibrate my heart for what’s ahead and to try and focus not on what I’ll be missing out on and unable to do but on making this the most efficient and best recovery ever. So I’ll write and draw and paint and read and finally finish the website for my business, Pike Physical Therapy and Fitness, and I’ll work on my base tan. The emotions of disappointment and unfairness come in waves, I’ve been tearing up while driving a lot this past week. The fight against sentiments like “I may never see these mountains again,” “I may never cuddle with Wallace again,” “I may never lift a barbell again,” “I might not hang out like this with my friends again,” “I might not hug my family again,” has been a bigger deal. But these thoughts do me no good! Cause really, I always appreciate things in my life. I’ve never really taken things for granted. Maybe it’s my personality or my realist mentality because Ive always known things are temporary and precious, even as a child. So I don’t let those thoughts or feelings take root. I dismiss them as soon as they come to mind. Somehow, I’m still not afraid of this surgery that will take a whole day and could end my life. I am confident in the things my God has whispered to my heart. There’s this verse in Luke that says “For with God nothing is ever impossible and no word from God will be without power or impossible of fulfillment.” So shoot. I’d much rather believe and side with that than let fear and sadness “prepare” my heart for disappointment. I’m still in good head and heart space and feel the ceaseless prayers holding me up and anchoring me in hope.

Get ready guys, this is where things get good and we see my God do wonderful, crazy, and impossible things! Stay tuned!

Pensive.

Having this surgery feels like, what I would imagine, being shipped off to boarding school after the best summer of your life would feel like. I’m getting homesick for my life. When I think of all the things in my life that I love so much that I won’t be able to participate in for the next couple of months I get so sad. I’m just being petty I know. It’s temporary. I’ll get to do all these things again once I recover but I just wanna plop down in the corner and cry about how unfair it all is. If we stick to the above scenario my “best summer ever” has group dinners at Stonefire grill, brunch dates on days off or Saturdays after a workout, margaritas and chili verde burritos at El Patron, hiking in the Arroyo, sweaty workouts with my favorite workout squads, cheering on friends in Crossfit competitions, falling asleep on friends couches cause I’m having too much fun to go home, margaritas and laughing seizures at Mijares, coffee dates at Jameson brown or Seed Baking co, or Cafe de Leche, or Lavendar and Honey, wine nights with friends, weightlifting and two a days, beach days with my favorite crew, my beautiful little house, heavy Italian food shared with friends at a long table, driving my car with the sunroof open and worship music cranked up, and don’t even get me started on all the Crossfit. I know I’ll get back to all these things “next summer” but I don’t want to “go to boarding school” and leave these things behind. I live an amazing, full, jam packed, adventurous life! I didn’t take it granted before and I certainly don’t take it for granted now.

As I head into surgery in less than a week, I can’t help but look back on all I have been brought through and feel overwhelmingly grateful. I am so grateful for my God and His care through this dark journey. I’m finding a huge component of this journey has been all of you and the many prayers prayed on my behalf. I have felt the need to be strong and smile and stay mentally tough through all of this but you should know that does not make me exempt from experiencing the darkness. I am so grateful all of you have been willing to walk this road with me.

When I first got diagnosed I was on my phone for what felt like thirty six hours straight. It was important to me that people hear from me and know I was ok and had hope, because it’s scary. Cancer is so scary. I felt from the start that I would be ok. I chose to believe it. Of course the diagnosis kept getting more and more serious and my initial resolve of believe was threatened over and over. But I had this amazing support base in my friends and family and Crossfit family. They knew me and backed me and never wavered, never contradicted my belief that I would get through this, even when facts didn’t always support it. For that, my heart bursts with gratitude.

You might say “Amy, I didn’t do anything for you.” But you have. You’ve believed with me.

Every time you’ve treated me normally, encouraged me in a workout, prayed for me, smiled at me, wished me well, text me, written a note, or sent a package, you were doing something to my heart. Every high five, coffee, margarita, snack, burrito, and hug has been a really big deal to me. I know without these things I would have LOST it. Nothing breaks a person like loneliness and over and over that was the lie whispered to my heart. “You’re alone. No one understands what you’re going through.” But you have been such a gift to me and all those little things that meant nothing to you made it easy to discern lies from truth and say, “No matter how I feel, I am definitely not alone.”

He used all of you to tell me I am never alone and how much He loves me. All of you are a glimpse of the Lord’s goodness to me. Without it, let me assure you, I would have lost heart. I would have made lies and loneliness my armor in this battle and I would not be heading into this surgery smiling ready for a fight. (Some days I’m smiling more than others.) I’ve said it before and I’ll say it again, faith is exhausting, and I don’t know why more people don’t tell you that! Believing that something is true when everything you can see, taste, touch, smell, hear and feel says the opposite is just hard work no matter how you look at it. For me, that has meant trusting that my friends don’t need to understand what I’m going through to be with me in it and that God only has good things for me with this cancer and is doing big things in the midst of it. One of my verses through this, well for the last couple of years if I’m being honest, is “I would have lost heart had I not believe that I would see the goodness of the Lord in the land of the living. Wait for, hope for and expect the Lord. Be brave and of good courage. Let your heart be stout and enduring. Yes, I say wait for, hope for and expect the Lord.” I have seen and will continue to see His goodness. I’ll continue to try and be brave and stout hearted in clinging to the character of my God. I will wait for Him to do what He wants in this. I chose to believe that even with stage IV cancer, He has nothing but good intentions for me, even in all the darkness surrounding that. I will expect and hope for that goodness to become my reality, for vapor to have substance and the invisible become visible. (Go ahead, tell me that in believing that, faith isn’t exhausting!)

Thank you for believing impossible things with me, holding me up and supporting me, and laughing with me through all of it (even when it’s offensive). Thank you for being a tool of God to tell me how loved, supported and cared for I am. To my people, you know who you are, I love you and appreciate you with an intensity you will never fully know. I feel braver already. I’ll probably re-read this a million times this week to remind myself of these truths when I’d rather cry and skip surgery all together.

Curative Pathway.

Again, I wont beat around the bush. I get to have surgery!!fullsizerender

I drove down to Loma Linda Tuesday in the pouring rain to meet with my surgeon to discuss the next step. I’m telling you, I like that facility. Free valet parking for cancer patients? Clean facility? People who smile at you, look at you when you speak to them, walk you to where you need to go? It’s pretty great. Checking in, easy. Long wait for the doctor? Not really, (normal amount of time I’d say. I mean there was waiting but I didn’t even get through my instagram feed).

If you remember, last time I spoke about surgeons it was depressing. The atmosphere was one of bad news and solemn outlooks. This time was different. The atmosphere was one of congratulations and hesitant optimism. But it was definitely still very sobering. My surgeon was very pleased at how my tumors had responded to the last two months of chemo. He highlighted the fact that when he first saw me I was not a surgical candidate. The disease outside my colon was too extensive, and where it continues to be extensive, my tumor markers indicate I have about ten percent of the disease I had at that time. A ninety percent drop in metabolic activity of my cancer is a really big deal. Now he can confidently say that I am on a “curative pathway”. Which means I am now on my way to completely eradicate my cancer. Man, that made me smile.

Then we went nitty gritty, what does the curative pathway entail, the steps to take, all the risks, and what’s next. As I try and explain all of this it gets jumbled in my head. I hope its not confusing and that I can explain and organize it in a way that it makes sense! This is a very long post and kinda complicated. I’m so sorry I’m a writing processor because I processed and made sense of a lot of things while writing this! (Some of this will be redundant and a review from previous posts but its important to get the full picture.)

The primary tumor in my colon is smaller. It will need to be taken out. It will require the portion of my colon with the tumor to be taken out and the remaining colon will need to be reattached together. (Like taking out the middle of the colon then sewing the top and bottom together.) This may require a temporary ileostomy. Which is an obvious disappointment. An ileostomy creates an exit point in my abdominal wall with the part of my intestine above the colon, the ileum. This may need to take place in order to allow the colon to heal. When you separate something then reconnect it there is potential for it to leak. Leaking would be horrible!! This causes infections and prevents the body from healing and all kinds of awful complications. Not to mention the theoretical concept of  my excrement floating around in my abdomen! If that happened it would require an additional surgery to open me up and eliminate the leak. So yeah, give me an ileostomy if you have to in order to decrease risk of that happening please! This would mean there would be a “poo bag” outside my abdominal wall for a while. My thoughts are these… “ummm… gross” and secondly, “this is going to get in the way of all my CrossFit. How can I weightlift with that!?” Great.

Next lets look at the secondary tumors in my liver, also smaller. This is where things really get “fun”. All four of these tumors also need to be removed. I mentioned last time that every time we go over the scans I get a better idea of where the tumors are oriented within my liver and also in relation to each other. He described the one big one in my right lobe, simple yeah. But he corrects my understanding of the three smaller ones. Apparently what makes surgery so complicated is that they are not completely contained within my left lobe. He describes them as more scattered within the left lobe and the central part of my liver. Couldn’t this cancer have just been a little more considerate and stayed in one part of my liver? If they were isolated within the left lobe a lobectomy would be easy, however, since they are also in the central part of my liver a lobectomy would just be taking out too much liver. It is safest to resect the three smaller tumors from my left lobe individually and in the same surgery get rid of the primary colon tumor and create a temporary ileostomy. Then have a second surgery once the liver has regenerated and my body is ready to go through it all over again to undo the ileostomy and remove the larger tumor in the right lobe of my liver. Spoiler alert, this is the plan we are going ahead with.

[Side note (skip if pressed for time as this has no relevance to the report of my surgical consult): In high school my brother’s friends and I used to do a lot of hiking in the local mountains. There was this beautiful waterfall we would hike up to and jump off of, blah blah lots of irrelevant details… Well one hike we were up there jumping off the cliff into the pool below when this troop of beginning rock climbers or something comes down the stream and proceeds to repel down the waterfall. They all had matching helmets and brightly colored brand new gear. As they were beginners they were clearly not adept at the task they were undertaking and very uncomfortable.  At the time, we felt very much superior and intruded upon, a bunch of high schoolers cliff jumping versus this organized, uneasy, overly, cautious troop. So what do we do? Start a chant of course. “Safety first! Safety first! Safety first!” And then proceed with our daredevil activities. I feel very much like I joined the troop of beginning rock climbers. Not that I mind, this is my life. So yeah let me strap on a helmet, clip into the ropes and repel down the waterfall instead of carelessly jumping off the edge. But I feel very out of place.]

So we have a surgical plan but how complicated is it? And what are the other possible options? And most importantly, what are the risks? I mean it could make a person dizzy going over all this stuff. If you are content with the plan as is and the risks and confusing options aren’t necessary for you, dear reader, you have my permission to go no further. Just stop reading. We’re good. I will be in the ICU for one to three days (what?!!!) and be in the hospital for seven to ten days (if there aren’t complications). February sixth I go in for pre-op and February twelfth is the surgery. Mark your calendars folks this is terribly official and I will be counting on support and prayers to make impossible things my reality. Buuuuut if you want the full picture this is where things get interesting.

Now mind you what follows is my understanding of things I was previously unfamiliar with so I hope it makes sense… Removing the tumors will most likely require two surgeries. As previously stated, this is the safest option. However, the surgeon wont really know until he opens me up and gets in there if one surgery is preferable. Two main things determine one versus two surgeries. How much of my liver is left after removing the three smaller tumors and how long it takes to get all three tumors out. He does not want to do a lobectomy and simply remove the left lobe of my liver, he plans to go in and individually remove each tumor from my left lobe leaving as much of my liver intact as possible. I will be put into a semi dehydrated state to decrease the amount of blood loss (there was a fancy acronym for this that I can’t remember), but this only lasts a short time because it’s really not good for me to be in that state for too long. If there is enough liver remaining after removing the three tumors in my left lobe and enough time left for me to still be in the dehydrated state, he will go ahead and remove the larger tumor in my right lobe at that time. Then he might say, “Ok, thats’ enough for her body to handle she can come back for the colon surgery once the liver and her body heal.” Or he can say, “Let’s get after it and get the primary tumor out of her colon too.” What I have just described is highly unlikely and best case scenario for me, one massive surgery with no temporary ileostomy.

But one thing we know is chemo works, it keeps the cancer shrinking and manageable. Another thing we know is when I am not on chemo tumors grow fast and aggressively. So to be off chemo while I’m recovering from the surgery means any tumors left will grow and potentially spread. To avoid surprises and ensure that there isn’t cancer anywhere else I need a repeat PET scan (you may remember, it’s the isotope injection one). This is the one of the last hoops to jump through before surgery. We know that staged surgery is safest for my liver but there is also increased risk. One reason why the liver regenerates is it gets a flood of growth hormones, which means the tumor in my right lobe also gets growth hormones and without chemo keeping in check… well, it’s going to grow. There is the potential for it to grow to the extent that when it comes time for the second surgery there isn’t enough good liver and removing it then would mean… certain death. Then of course theres the risk that the liver wont regenerate at all and again if the liver doesn’t grow back and the tumor grows there wont be enough good liver and… certain death. You may think, “Oh Amy, that’s silly. You would just get a liver transplant!” Well, there’s this whole “cancer disqualifies you from a liver transplant” thing that means I’m not a candidate for a liver transplant and if my liver goes into failure… certain death.

My poor surgeon was confused by my reaction innumerous times.  I’m certain he’s not used to discussing risks with people as healthy and young as I am, and apparently, he’s also not used to discussing risks with people who have a sense of humor. He is probably more accustomed to emotional break downs when certain death is on the table. Instead he got me, repeatedly laughing at how absurd it all is. I smothered so many giggles that some couldn’t help but escape. I mean it’s so ridiculous that all this is real sometimes that it’s legitimately funny to me. I’m not talking nervous laughing or filler laughing. I’m talking this is very humorous to me that I am in this position shake my head, slap my knee, laughing. I kept the knee slaps out of it while he was in the room, however.

More risks did you say? Heres one. The metastasis in my lymph nodes are still there. The radiologist says they aren’t there but thats because on a CT scan the lymph nodes have returned to normal size. Chemo is working all the cancer is shrinking. However, my surgeon could still see the cancer because he knew where to look and what he was looking for (or something). This is an area of concern, however, when I’m off chemo for those months recovering from surgery. No one has time for the cancer to spread to my lungs or my brain via my lymph while I’m recovering. No one! He casually mentioned perivena caval radiation as an option to address this. However, this is another reason the PET scan before surgery will be important. We need to assess the extent it is in my lymph nodes and in addition to the no surprises part, there is the possibility that the cancer in my lymph nodes is secondary to cancer somewhere other than my colon as the primary. But all will be made clear with a PET scan. In conclusion, he said, “So as you can see this surgery is very risky, you could die, but when you compare it to the risk of not having the surgery, this cancer would with 100% certainty take your life. The risks of surgery are minimal by comparison.” This was another part where a laugh escaped me and I said something synonymous to “duh” (much more eloquently of course).

Truly the fear pit falls are crrrrazy!! It’s definitely a “don’t step here”, “jump over that”, “duck under this”, “dodge those” way of life, let me tell you! Staying within the boundaries of what you know to be true and having faith for what that whispering voice of God tells you is true despite contrary evidence is exhausting! Why don’t more people say that? Faith is exhausting!! Don’t play the what if game. Don’t take the what if’s into your heart or even your mind as tangible fears. The what if game has no winners. It never prepares you for reality, it only feeds fear. I have primary colon cancer that is resectable. The tumors in my liver are also resectable. The cancer in my lymph nodes that has been responding to the chemo for my colon cancer, is secondary to my colon cancer and will continue to respond to the treatment for my colon cancer. Fear thoughts are to be banished and not entertained for a minute! So if you had any doubts about what to believe or worry about on my behalf let me set you straight. First off, let me tell you now this surgery will be a raging success! Any thought that opposes that is to be dismissed! No, my colon anastomose will not leak excrement into my abdominal cavity. No, the liver resections will not be so extensive that I go into liver failure. Yes, my liver will regenerate, it will not be his third case in twenty years of surgery and six hundred liver resections where the liver didn’t regenerate and the person died. No, the tumor in my right lobe will not grow to the extent that it wont be resectable for my second surgery. No, the second surgery will not have to be delayed because of complications. No, the cancer in my lymph nodes will not spread while I recover. No, the cancer in my lymph nodes is not secondary to another cancer that hasn’t been diagnosed yet. Most importantly, no, certain death is not on the table for me. Everyone understand? Those fears are truly laughable and are to be treated as such. If you want to worry about those things I just feel sorry for you.

Also please understand in healthcare “Risks and Benefits” is a mandatory part of any medical intervention. Meaning my surgeon is legally required to explain every single possible risk with me before the surgery. I knew this going in which is also why some of it was so funny to me. I know, or have faith, that a lot of what was discussed really isn’t possible for me and is a generic risk that needs to be discussed as a formality. How hilarious that I fit into that level of formality?! The part of the conversation that was the most sobering to me was discussing what “recovery” would entail. The conversation went something like this. “Doctor, you mentioned one to two months between the two surgeries. What determines when I will be ready for the second surgery?” “That will depend on how your body recovers. Once you can eat, drink and walk you’ll be recovered enough for the second surgery.” This was where I started laughing at how absurd this was. Was he really saying it might take me up to two months to be able to eat drink and … walk? I thought of how I was planning on at least walking through the upcoming CrossFit Open workouts a couple weeks after my surgery. I think he got a little offended at my humor because he followed up with, “You need to understand this is a major surgery and will take a tremendous toll on your body. Essentially this surgery is four parts, your colon, the left lobe of your liver, the center of your liver and the right lobe of your liver. Any one of those components is enough to keep you recovering for a month but your surgery will require four.” I stopped laughing. I knew how to block my mind from fear but I don’t think I was quite prepared for the gravity of how truly extensive this surgery would be or how great a toll on my body it would take. But in the war for optimism, I don’t think I fit within the demographic that generates these projections. I think he isn’t used to performing this surgery on anyone as healthy as I am or on anyone as comfortable and familiar with pushing themselves as I am. I expect all of his projected time frames to be exaggerated. I think I’ll be out of ICU faster than he projected and out of the hospital faster than he projected and I will most certainly be eating, drinking and especially walking much faster than he projected. In fact, I’ll take it so far as to say challenge accepted sir! So I’m sticking with the perspective of I am so excited for this surgery!!

The absolute best news in all of this, with the exception of being on a curative pathway, is that I have only one more chemo before surgery!! Which means I will have three whole weeks of feeling amazing before surgery! Bring on weekend trips, beach days, painting, gardening, poetry, hiking, and most especially workouts with a little intensity!!

Mist.

Immediately following my CT scans I walked over to my oncologists office for a lab draw. I’ve said this before but just to provide background, before every chemo treatment they need to check my “labs”. Labs include, my white blood cells (WBCs), neutrophils, creatinine, and liver function tests, just to name a few. Basically, we need to make sure that I’m stable enough to get chemo. So my WBCs need to not be too high (too high means I’m fighting an infection already); my neutrophils need to be high enough, (if it’s too low my immune system is too weak); my creatinine needs to be low enough (too high means my kidneys are working too hard to filter the chemo out); and my liver function tests need to be within normal limits (too low means the chemo is being too hard on my liver). Any of these numbers not measuring up has the potential to postpone or change the dose of my chemo. All this is to say, we check labs before I get chemo.

The nurse took my blood, no problem (I mean its never a problem, I’ve got excellent veins as CrossFit has helped with vascularity). “I don’t even need the tourniquet!” is a phrase I often hear. I sit twiddling my thumbs in the lab draw chair waiting for my preliminary results (just to make sure I don’t need a neupogen injection to tell my body to produce more neutrophils and make me ready for Tuesdays chemo before I go home). My oncologist pops out of her office. My numbers were all ok, I was a little neutropenic but not too bad. She always checks on my symptoms, how much bleeding am I having in my stool, how is my tingling in my hands and feet, how much cramping and pain have I been having, those kinds of things. After I provide her with favorable answers she replies, “Lets check out the scans, I don’t have the reports from the radiologist but we can still take a look at them.” I can tell she already looked at them is kinda excited as I sit in an empty chair in her office. First, she brings up my last set of scans from November. Every time I see them I get a better idea of the tumors size and orientation and relationship to each other. Then she brings up the new scans, taken only an hour before. I was pretty shocked at how much smaller the tumors seemed. It’s a good sign when my untrained eyes can distinguish differences between the two scans. Heck, one of the tumors was even difficult to see as it was all shadowy. My oncologist agreed, things looked much smaller, we’d have to wait for the radiologist to measure everything but things looked good. “My mom is going to flip!” I tell her. But for me, this is by far the happiest I’ve been at any news I’ve received. You know, when your heart kinda hits the ceiling and you can’t help but smile? That was me. My oncologist was going to wait for the official report to talk to the surgeon at Loma Linda that afternoon and give me a call.

When she called me later she had even more good news! My tumor marker had dropped from 110 before the last dose of chemo to 67 in just two weeks. The radiologist report from the CT scan was back with measurements for my tumors and all the tumors in my liver had shrunk almost 50%. The metastasis in my lymph nodes were both completely gone!  She had spoken with Dr. Reeves, the liver surgeon, (experienced, friendly, within my insurance network, and a complete and specific answer to prayer) and he says it’s time to talk surgery. (!!!) I was scheduled for more chemo Tuesday, as planned, but without the Avastin, the drug I would need to be off for six weeks prior to surgery as it has high risk of bleeding and stuff.

To fully understand how exciting, miraculous and just straight up huge this conversation was, please read the previous post, “Hope”. Then can we take a minute to talk about how ridiculous my God is? Doubt what you want, but this is crazy.

It had been a three month mental and emotional battle, not instantaneous, but that just means it’s a bigger deal. The work that’s been done in my heart has been darker and deeper than the wave of a magic wand. I went from a “stable”, life threatening, aggressive colon cancer, with liver tumors too big to be taken out surgically, that was working its way up to my lungs via metastasis in my lymph nodes and tumor markers not low enough to say that chemo was working well enough … to being a surgical candidate… a “responsive”, curable, aggressive colon cancer with liver tumors small enough to be removed surgically, not spreading anywhere and tumor markers low enough to say that chemo is working. My oncologist grabbed me by the shoulders and looked into my eyes and said, “Amy, you’re going to be cured. You’re going to be my miracle patient!” That took my breath away. Before my scan I had said “Where I’m challenged is to stand in faith on some things I feel are true despite the current facts. I’m believing my scans will say things are ready for surgery. I’m believing that my tumor markers will be within range for the surgeon to say I’m ready for surgery.” Stop it. Shut up. Thats crazy.

When you continue your journey there may be much mist and cloud. Perhaps it may even seem as though everything you have seen and been promised was just a dream, or the work of your own imagination. But you have seen reality and the mist which seems to swallow it up is the illusion. Always go forward along the path of obedience as far as you know it until I intervene, even if it seems to be leading you where you fear I could never mean you to go.” (Hinds Feet on High Places, Hurnard)

I stumbled upon this highlighted passage in a book I read in college. How cute right? Little college Amy, so innocent, no idea how deep that quote could go in her heart and become true in her life. I’m tearing up typing this because even though I’ve been sitting with this news for a week I hadn’t really processed it. To be honest, I still don’t think I have. But whats real? I love a God who trades openly in the currency of the impossible. I’m lucky that I get to have this be my tangible reality. He’s not scared by my anxieties, insecurities, doubts, or shortcomings. Guys, this is really good news. What’s even better is He’s not just unafraid he loves me and knows how to support me and surround me with people in a way that only the language of my heart knows how to speak. Thats so crazy cool. How many people get to watch the finger of God write such clear messages across their life and heart?

I wish I could say everything is better now but the battle for my heart, hope and sanity still rages. I still cried my way through chemo on Tuesday. Meaning my body and heart were like “Please, Amy, no!” and made my eyes leak all day. Which sucks because I’m convinced one of the drugs makes tears burn my eyes like acid. Tuesday was one of the worst chemo days to date. I got more good news though, my tumor markers were down to 45, aka it dropped the amount it normally does in a week in only three days. I can only assume with such light and good news, chemo effects will be darker and I walked out in a severe lightheaded, nausea fog that made the nurse concerned. My parents got the flu so I evacuated their house to my house to hunker down into an illness free bubble. I was pretty worried I’d hate it but its been fine, nice even. Great, I’m still healthy. I haven’t gotten sick since my first day of chemo. But my immune system is still weak and with surgery on the horizon I can not afford to get sick! So no CrossFit for me? No going to work next week either? This whole “super severe worst flu we’ve seen in years” season is really cramping my style. I hate being smart and making adult responsible decisions. I just want to go work out and lift weights with my friends! CrossFit is such a heart breaker!!

Still standing on faith for one surgery not two. When my oncologist talked to my surgeon on Friday he still said he wanted to do two surgeries. I don’t blame him. Two staged surgery is safer, I wont be as likely to die. First surgery get the tumor out of my colon and take out the lobe of my liver with the three smaller tumors, then let my liver regenerate and stabilize and go back in for the huge tumor in my the other lobe of my liver, the riskier surgery. But I don’t want two surgeries! I want to have surgery, recover and get back to life!! But hey, well see what he says on Tuesday…

Hope.

Currently I’m in the waiting room “sipping” my banana barium solution for my third CT scan. The good news is, they were able to schedule my scan for the morning, which means I don’t have to die of thirst or starvation this time. I mean, I still haven’t had anything to eat or drink yet today but it’s only coffee and breakfast. I’m merely postponing it. I’ll pretend I’m having a disgusting banana chalk chemical smoothie for breakfast instead. I checked in, got my patient ID band, signed the consent forms, and now I’m waiting. The Price is Right is blaring on the TV in the corner of the room. The artwork on the walls is multicultural and obnoxious. But I can tune that all out.Yum. Contrast.

I’m kind of excited. What will my scans show? In my mind these are turning point scans. They have the potential to show that the masses in my liver are small enough to be taken out and next stop is to schedule a follow up appointment with the surgeon to see what he thinks about them.

I’ve met the initial goal of three months of chemo. Because of avastin, the fifth chemo drug they added three rounds ago, I’m going in Tuesday, January 2nd, to start the new year right with my seventh round of chemo. After that, depending on what the scans and surgeons say, I might get a break to let my body recover for surgery.

I’m sick of chemo. My head is still ready to take it on but I’m finding my body is over it! I get these involuntary visceral reactions like Pavlov’s dogs. I was watching a movie with a hospital scene where the character was dancing with an IV pole and I got super nauseous. When I think about chemo I get nauseous. When I think about my doctors office I get nauseous. The nausea this last time felt worse, more constant and harder to control with my medications. Chemo is like a flu with a hangover that doesn’t get better as the day goes on, in fact, it gets worse and even more, it gets worse as the week goes on. My mind is like, “Let’s do this! Beat this cancer!! Whatever it takes we’re down!” And my body is like “Wait. Wait. Give me a minute. Wait. I just remembered we don’t want this.” Kinda like when you get a pedicure and they’re scrubbing the bottom of your feet and you have your leg stretched out for them but at the same time your pulling away, almost involuntarily, from the tickling pressure. I hate visceral irrational reactions to things. I want to tell my body to get a grip but then my heart feels so sorry for me and I get an emotional dread. My heart says “Oh Im so sorry! Things in your life are supposed to be so different! How disappointing and sad this is! Let’s just cry.” It’s like my mind alone understands what needs to be done here and my heart and body are teaming up against it. Every week my body and my heart get stronger and louder. This is an example of where being stubborn is a good quality. Not to mention the three years of crossfit training my mind to push past my perceived limits and push my body to do more than it feels it’s able. (Ugh I love CrossFit!!) Mindset is huge but I’m convinced it’s people’s prayers that keep me strong and able to stand against how I “feel”.

Faith is tough. My definition of faith is taking as fact that which is unperceived by the senses. Also know as, believing the invisible is as real as the visible, and believing in things that are even contradicted by what we see, touch, taste, smell, hear and feel. That takes mindset!

Currently the facts are these:

-My tumor markers are maybe somewhere below 100 (the last lab draw before my last round of chemo they were at 110). The surgeon said he wouldn’t even consider surgery for me till it was below 50.

-The masses in my liver are too big to be surgically resected and will most likely require a two staged surgery to prevent me from liver failure and death.

Where I’m challenged is to stand in faith on some things I feel are true despite the current facts. I’m believing my scans will say things are ready for surgery. I’m believing that my tumor markers will be within range for the surgeon to say I’m ready for surgery. I’m believing I’ll have one surgery, not two, in mid to late February (even though part of me wants two surgeries cause that’s way more badass). The thing that’s scary is that faith requires hope, and where there’s hope there’s room for disappointment. I hate disappointment. I structure a lot of things in my life to prevent disappointment. I’ve looked at treatment of this cancer as work to be done. There is no disappointment in work, it’s just a measured effort. But to hope for, even bank on, things outside of my control, placing my heart in a position to be disappointed is scary. Even more, to not just believe these things in my secret heart but put them out there where other people can see my disappointment is scary for me.

These are things that tune out bad artwork and “The Price is Right” and banana chalk chemical smoothie. These are things bigger than me and I’m so glad I am surrounded by people who hold me up in prayer and hope with me.