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.
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.