It’s thanksgiving tomorrow.

I have a loooooot to be thankful for.

Man. I really love my life. Even with this whole cancer thing I’ve got it so good. I don’t even want to think about it too much cause I start crying. I am just so seen and loved. Believe me when I say, I don’t take that for granted. Though I’m still struggling with autopilot and being disconnected and over compartmentalized I know my life is amazing!

Work is great. My coworkers are dependable, encouraging, hilarious, empathetic, hard working, and get along with each other and me. It’s so rare to have a whole rehab team be on the same page with treatment plans and approaches to patient care and which patients are appropriate and inappropriate. When I sit in the office to document I end up laughing hysterically nine times out of ten. They also appreciate me. They want me to work more hours and to give me more responsibility in areas I’m interested in and good at. How many people can say that about their place of employment? I need the routine, the known and familiar, the coworkers, and the patient care that my job provides. It’s comforting and providing me with the function and purpose that I need right now.

CrossFit is wonderful. Coaching is the best part of my day every time! I’m coaching a group class four times a week with a group of regulars that I’ve known and cheered on as a member for years. The class is large enough for fun dynamics but small enough that I can give individual attention and manage the class with ease most days. I love coaching group classes. I’ve also been doing more personal training with injured members that just want to feel better or get stronger. It’s fun watching people improve so quickly and get out of pain and back to classes. It’s challenging being so responsible for people’s recovery. I’m having fun with being creative on exercises that address their needs and help push them toward their goals. It provides the challenge and mental engagement that is easily skipped over at my hospital job. So I’m pushing outside my comfort zone and becoming a more well rounded practitioner. The toughest part is it has me doing thirteen hour days a couple days a week which would be demanding and exhausting without the chemo thing. But I wouldn’t trade it for anything. I love being a coach and a trainer! As I’ve mentioned before, it also allows me to be part of workouts where my body wont let me participate. I’m still only working out one to three times a week (very different from my pre-cancer six days a week). I focus on technique and skill. I’ve decided to ignore my massive hernia because I want to be strong if I can’t push myself as much as i used to. My lungs just don’t let me push! If the workout requires any amount of an engine I’m out. Yesterday I did a workout and felt so faint and nauseous after despite my modifications and “taking it easy”. I tell myself to only do what I can but my problem is with my cardio. I feel fine while I’m doing the movements but I don’t recover. So what “I can do” is a lot more than I should do. I keep forgetting! Cancer and crossfit belong together but man are they hard to reconcile! I survived the CrossFit Open though! All the workouts I did Rx too! I can still do the movements and weight I just can’t go fast. So I did them all slowly, luckily the workouts allowed for that. I finished in like the top twenty percent of the world, which is insane, (I suck at math I was around 45,000 out of around 183,000… I don’t know). Listen, the takeaway is I freaking love CrossFit.

Cancer is going ok. I had my interim scan three weeks ago. The radiologist who read it said my pneumonitis was still present which explains why I feel like I can’t breath and my heart is going to explode during workouts. The first time the radiologist read the scan she didn’t even report on my lung nodules. She says my abdomen and pelvis are still clear which is a MIRACLE! My oncologist requested a report on the lung nodules documented in previous scans and they said, (I’m paraphrasing) “oh yeah, I guess there’s one four millimeter nodules in her left lung.” Whether that means all the other ones are gone or not is a mystery. My oncologist was annoyed so she’s having her favorite radiologist go over my scans with a fine toothed comb. I hope to get a more official word on that next week. But either way, my body is getting a break from the heavy dose cytotoxic chemo! After six months of body wrecking chemo with folfiri plus cetuximab, we’re going from five drugs that kill everything and poison me to the point that I’m not functional for five days, down to one drug! It’s still an infusion, the cetuximab, with the skin, hair and nails side effects, which is a bummer but still a respite since nausea and diarrhea won’t be the major side effects! That’s revolutionary for my body! I’m going to feel better for the first time in almost a year (my last surgery was December so I was recovering from that straight into six months of chemo). It’s a new season to be sure!

It’s funny how sucky things can bring relief just because they suck less than alternatives. Then, all of a sudden, what was horrible at first just becomes normal. You lose perspective and you’re happy with bad circumstances. I was happily telling my friend that I get to have a two hour infusion instead of six and won’t be as wrecked when she stopped me. “I’m not happy with this at all! I don’t want any nodules and I don’t want any chemo!” It echoed around a hollow space in my heart. I’m still happy about the break in treatment but my new normal and the things that make me happy are very sub par. My expectations have been shaped by my experience. I guess that’s kind of a human condition. A friend who works as a teacher in inner city Oakland was saying how she has become desensitized to her students cussing at her or her students being mugged at gunpoint because it happens at least twice a week, and needing an escort to go to her car so she isn’t assaulted in the parking lot. These are just her normal. It’s horrible that her normal is being disrespected and living in fear of crime but it’s her experience. My cancer is kinda like that. Sure, it sucks but it’s my experience why expect more? Sure, we all wish things were different in our lives but another human condition is adaptation. We adjust and shift our expectations and adapt them to prevent disappointment and heartbreak. “It is what it is”…. but is it what it ought to be? How do you keep the negative circumstances in life from taking over and shaping your normal into a dark mass of disappointment and unmet expectations? I have found the secret solution to be checking with God about His perspective and allowing those bad experiences and circumstances to shape us only in ways He intends. Limit the negative effect of bad things by keeping them in perspective with the good things surrounding the bad. I think humans were designed to hone in on silver linings because we were designed to have our expectations shaped by more than our experience. We were designed to allow the Giver of every good and perfect gift into every shadowy and dark circumstance in life. It ain’t easy. Temper tantrums and focusing on how much of a bummer life can be feels really good (that victim mentality). Starving hope and denying love is easier because then there is no disappointment. I think everyone needs to keep bad in line with what God says about it and keep it from bulldozing our entire perspective. I don’t think I’m doing the best job of this at all lately. But I think the prayers of many are shielding me from this disease and it’s design to carve joy and peace and hope out of my experience. If this disease were allowed to truly shape me to it’s full extent I would be a wreck! A broken, cowering, handicapped shell of Amy Pike. Instead look at this fabulous life I get to live! Look at it! I’m not even going in to how wonderful my family and friends are. That would really put my life over the edge of awesome for one blog post.

Yes, I am loved and seen by my friends and family but most importantly, I am loved and seen by a God who overpowers my bad circumstances and floods my life with good. That is my normal, the experience that shapes my expectations. That is what I’m truly grateful for.

It’s hard to write these things. Blogs. “Start a blog, it’ll be fun.” “Get your thoughts out of your head and update everyone at the same time.” But then you start to feel accountable to it and it loses its charm? I think I take it too seriously? I know this one takes a lot of energy to write. I don’t like expending my energy outside my day to day life. I’ve become an energy hoarder. However, time just leaks by and next thing you know, I have already been back at work part time for two months and am eight more cycles into folfiri and cetuximab. Basically, my day to day has expanded exponentially and I have an entirely different normal than I did two months ago and a lot less unclaimed energy. Naturally, updating the blog has taken a major backseat.

It’s been more than a priority or time obstacle, however, that’s kept me from the blog. Truthfully, I haven’t wanted to process all that’s been going on. I’ve been pretty mad at God and realized I’ve boxed it up and walled it away, saving up my unprocessed negative emotions for a distant rainy day, or emotional explosion. In the meantime, I enjoy that I get to put my nose down and get things done. I don’t have to think of how to spend my time now that I’m back to work. My life has developed somewhat of a rhythm. I’m either working or I’m recovering from chemo and to top it off, I just started coaching a class at my gym four times a week. It’s easy to get stuck in that rhythm and not have to decide how I feel about it. Of course I’m extremely disappointed that I’m still having to feel so sick and battle so hard. I sincerely thought I had already been through the worst this cancer could throw at me. The nausea, the surgeries, the diarrhea, the pain, the foot hand syndrome, the feeding tube, the colostomy, the almost dying, the sepsis, the wound infections, the un-synced bowel movements, the narcotic withdrawals. Really this cancer has thrown at me the worst of the worst. Aside from how miraculous my body has recuperated over and over again there have been no easy breaks for me. Little hope-dwelling me wasn’t expecting to get dealt another tough hand with more worst case scenarios, but I did.

To summarize, there were at least six, one to five millimeter nodules in my lungs. Without the colon cancer history thing, this would still put me at stage IV cancer. So that’s fun. Having this many nodules means the oral chemo isn’t strong enough, the nodules are still able to grow even while on them. This many nodules also means it’s too much surface area for radiation. What I had dreaded most was before me, full blown intravenous chemo. The same chemo I had already undergone twice for a total of eight months, more or less. But not just the chemo we’d done before, folfiri (irinotecan, leucovorin and 5-florouracil), but folfiri plus cetuximab. (Side note, this next part contains a lot of sarcasm. To be read in a lifeless tone and straight face.) Cetuximab adds in a component of “fun” by way of its mystery. We didn’t know if it would work on the genetics of my cancer. Having rare gene mutations make things so much more unpredictable and exciting! The best part about this drug are the side effects. This drug affects hair growth, nails and skin, not to mention, the sign you can tell it’s working is a painful acne like rash. Well, lucky me, it works. And it works really well apparently because the acne covered not just my face and neck but my back and stomach and upper arms as well. It showed up two days before I returned to work so that made it extra special. The extra facial hair has been fun too, as well as, the cracks in the cuticles on my fingers and toes. Just as the nausea starts to ease up after chemo my skin breaks out and my cuticles start to split. I don’t want to leave out the abdominal cramps and chemo diarrhea! This chemo regimen is by far the worst to date. My body is more wrecked and I’m not recovering as well as I have in the past.

The timing of going back to work was humorous, just five days after starting full blown chemo. Like I said, I enjoy the nose to the grindstone push without having to think. In truth, returning to White Memorial was refreshing. It felt so normal. I put on my same scrubs, I drove the same commute, I parked in the same employee parking lot, I got my old desk and my same wonderful, supportive coworkers. I’d been doing those things for eight years before I went on leave. Eight years is a long time to establish good relationships and a good routine. I was so delighted how easy it was to slip into my old role and how genuinely welcomed back I was by coworkers across departments in the hospital. I was making nurses cry at least once a day during my first two weeks. It feels good, to know that your well being can have that much of an impact on people, people I hadn’t done a great job of keeping in touch with or updating. They could have been, “Hey, Amy! Missed you around here. Good to have you back!” Instead I got excited tears and “Amy! Thank God! I pray for you everyday girl! So good to have you back! What’s been going on?” I mean, for reals, my work could not have been more supportive or made the transition easier. It was kinda overwhelmingly wonderful, if I’m being honest.I didn’t think I would be able to handle working through chemo again. I went in to tell my supervisor I would need to quit and instead walked away with a new flexible schedule. I’m working part time with days of rest between shifts, averaging twenty hours a week. It’s exhausting but doable.

One comforting thought is knowing that chemo is working to shrink the nodules. All the mess of side effects are bearable if they’re working towards getting rid of the cancer. I’ve also been super encouraged as of late seeing God working in the lives of lots of people around me. It’s been super visible and tangible, impacting change in people’s lives obviously. I’m seeing it not just in my body but in my heart and in the lives of people around me more and more frequently. I’ve been doing some major wrestling with God this year. The whole, “I’m cancer free! Wait, just kidding still stage four cancer” thing has really thrown me for a loop. I was so mad at God and doubting everything. But I’ve been really wrestling with these things and trying to soften my heart. Autopiloting through life is great but it’s not really living. So I’m trying to process through some deep things and start living a fuller life again. Anger isn’t a good thing to hold on to, especially not when it’s connected to the source of being positive, having hope, and living life to the full. As I began to thaw out my heart was when I began seeing God work and impact change in the lives of my friends and community. It was perfectly timed encouragement, God still works in the dark and impossible situations. Sure, you can tell me it’s a coincidence, but I don’t have the space or luxury to believe in coincidences. I chose to believe that wrestling with God through deep, dark things is the whole point to life. To see how deep His love goes. I challenge you to take the darkest places of your life and heart and let Him show you what His love looks like in the very depths of it.

By way of encouragement to you, I want to share something else that has greatly encouraged me. Before my CT scan I had a couple of friends that decided to pray for me every hour on the hour for the twenty four hours up until my scan, including through the night. One of these friends shared with me a vision she had while praying for me. She said she had told the Lord that she would pray for my healing every hour until He told her “ok I will.” After which, she would thank and praise Him every hour until my scan. Two hours before my scan she still hadn’t heard from the Lord. She said she got irritated with Him as to why he hadn’t said He would heal me and started to doubt that He would. She has been on a little bit of spiritual high lately and during her daily quiet time has been having a vision of herself, running (not just walking) on the water with Jesus. This particular morning while praying for me she was sprinting like the Flash, dodging swells and breaking through cresting waves unaffected. All of a sudden a huge wave hits her from the right completely unaware and she feels pain and it trips her up. She looked to her right and the wave had rebounded and hit her again and again. She said to herself “this is unusual” and asked the Lord “what is this?!” He replied, “it is your unbelief that Amy will be healed. Turn to it and start praising me!” She turned to the huge, towering wave and began singing the song, “Sing a Hallelujah” (I encourage you to look it up on youtube if you are unfamiliar with it). As she sang, she said the wave got smaller and smaller and turned into a swell and then went flat. As it flattened, she said she saw an army of people. All of them were also praying toward the wave with hands outstretched in ernest. She asked the Lord who they were and he told her they were other people praying for me and praying against unbelief. She said she felt very humbled by how many people were also praying in the same way. She asked me if this resonated with me at all or could be true and I almost laughed even though I wanted to cry, of course it does!! I still believe the Lord will heal me but just like my friend, and I am sure many of you, I have been wrestling with unbelief. A different friend sent me a song and one of the verses says “You fight for the ones you love, and You win every battle you fight“. I believe that is truth! He is not powerless in the face of cancer, He is powerful! He is not powerless in the face of doubt, fear, delay, instead He is powerful! Just you watch! This isn’t blind faith or wishful thinking or misplaced expectations, guys. This is real life! Realer and deeper than the day to day grind and autopilot. He is doing something good. My life is going to prove it!

It’s been a while. I’ve been working out, lifting heavy things, enjoying margaritas, laying in the sun, lots of friends, even went to Cabo with one of my best friends and her family. That’s the good stuff, spring in full swing and summer just around the corner. There’s been a fair dose of bad stuff to go with all the good, however. I had to start chemo pills again, I had radiation on my right lung and it turns out I’ll be on chemo indefinitely. How did I get here? Is the cancer “back”? What’s next?

The last post ended with a PET scan, turns out it was positive. Some lil nodules in my lungs faintly glowed with the radioactive isotope. My oncologist referred me to my radiation oncologist who agreed to radiate the two nodules, one in my right lung and one in my left lung. “No big deal,” I said to myself, “let’s get rid of these nodules!” I knew if radiation didn’t work then we’d just do another surgery to get them out. Then things got dark… again. I’m so sick of bearable circumstances turning worse instead of better.

The radiology report and PET scan report were somewhat inconsistent as to the location and size of the nodules. So my oncologist went back to her favorite trusted radiologist to determine exactly how many nodules there were and where. When you’re planning to do radiation, it’s best to be specific. My oncologist called me after sitting down with him and going over the scans “slice” by “slice”, and informed me there were actually four nodules instead of two. My stomach dropped. It wasn’t just “a couple nodules no big deal” there were now four and this means we need to be a little more serious about radiation working. She asked me to start taking my chemo pills again. I assumed, maybe optimistically, that the only reason to start chemo pills was to magnify the effects of radiation, as I’d been told in the past. What really makes this the cherry on top of the sundae was this news came the day after I was cleared to go back to CrossFit a hundred percent, push myself as hard as I wanted and lift as heavy as I could. If you remember my previous posts about chemo pills, they make me feel miserable, twenty-four seven nausea, and the hand foot syndrome where the chemo leaks into the soft tissue on the bottoms of my feet and palms of my hands and it’s really painful. It also makes me really tired and lightheaded when I push myself in workouts. Understand, this is disappointing not just because I’ll feel bad all day for two week increments while taking the pills, but because since my surgery in December, my one hope was to have some time to devote to CrossFit before going back to work at the hospital. My plan was to have the month of April to go into the gym and work out twice a day and coach and get strong and feel good and work hard and be with my friends and everything CrossFit! Instead my one month of feeling good before going back to work would be converted into feeling horrible on chemo and having five sessions of radiation.

My radiation oncologist and her team of radiologists and physicists (because radiation is so sophisticated now that it’s literally a science involving physics) had some trouble planning the radiation. The problem is the nodules are so dang small! The largest one is only five millimeters. The regular CT scan is for diagnostics, the resolution is very high to help you visualize things clearly. It visualizes a “slice” every three millimeters or so. The CT scan they use to plan and map out radiation has lower resolution, it doesn’t need for things to be visualized as clearly, but it takes a slice every millimeter. The radiation team had difficulty finding the nodule in my left lung consistently, even with the specific notes from the radiologist. They sent the planning CT, with millimeter slices to him to go over and identify the nodules he had located. This is where plans changed.

As it turns out there are “multiple” one to two millimeter nodules that hadn’t been reported or seen in the diagnostic CT. The diagnostic CT had picked up one of them but had missed the rest. They had conveniently been small enough to hide between the three millimeter slices but were able to be seen when you collect images every millimeter, naturally. At this point we don’t know how many “multiple” is so we’re doing another CT scan to get to the bottom of this.

In the meantime we went ahead and did radiation on the five millimeter nodule in my right lung. What is radiation? It’s basically directing a laser, programmed to a certain tissue depth and searing the tissue there, aka burning a hole in my lung where the nodule is in the hope of killing it. It was risky because the nodule is on the inside border of my right lung, right next to my esophagus and trachea. Which means the radiation will most likely be absorbed by those structures as well. Side effects to watch out for include, shortness of breath, pain with breathing, and difficulty or pain swallowing. I got through my five sessions of radiation without noticing much of a difference in my life or my breathing. I was able to still workout at the gym without difficulty, often only an hour after radiation. The radiation therapist always praised my breathing, he said there was minimal movement of the nodules with my breathing and that helped minimize the damage to my lung. You can image having a laser sear your lung if you’re breathing heavy or deeply, that’s a lot of lung movement and a lot of tissue getting burned. (Another prop to CrossFit for conditioning my lungs so well!) Other good news is my nodules hated the radiation and responded really well. So we know that if the other nodules continue to grow radiation is a good option. The bad news is there’s too many to continue with radiation right now, it would be too damaging to my lungs. Which is how we get to the indefinite chemo part.

Radiation targets a precise nodule at a specific location. Chemo is systemic, it affects all rapidly dividing cells, or all tiny lung nodules. One problem with chemo pills is that the nodule we removed from my lung with the surgery in December, was able to grow from three millimeters to almost seven millimeters while I was taking these same chemo pills. That says my lung nodules have the potential to be chemo resistant. So we’re going to keep a close eye on my tumor markers and the size of these lung nodules. If the tumor marker goes up or if they continue to grow I’ll have to go back to the heavy dose IV chemo. This is my one dread scenario. I HATE that chemo. HATE IT. It steals my life. I’m couch bound for a week with nausea, diarrhea, pain, vomiting and fatigue. The idea that I would have to live one week on a couch one week trying to be normal for an indefinite amount of time is … are there words?

I’ve been very affected by all this. Just sad really, almost depressed. I had a friend ask me how I’m doing. I replied, “I’m ok. I’m not good by any means, but I’m ok. I’ll always be ok because I know Jesus and because of that I have hope.” I heard in a podcast the difference between optimism and hope. Optimism is circumstance dependent, staying positive for a good outcome. But hope is independent of circumstances, staying positive despite circumstances. Ultimately, like I’ve always said since day one, hope is a person for me. As long as I can continue to believe that God loves me and is good, I can have hope despite my circumstances. I know for a fact it’s still because of peoples prayers and a good, loving God that I’m ok. I know this because nothing in my life has gotten better and yet I feel better about all of it. I’m still sad, I can burst into tears whenever I think about how hard I’ll have to keep fighting to have a normal life. But I think God designed me from birth to fight. My body has been so resilient, my will is iron clad, my mentality is stubborn and focused, my spirit is even keeled and peaceful, and my heart is always love driven. I’m a damn good fighter. So the fight still rages!! Please continue to pray and walk with me in the long tortuous valley. (If I sound a little repetitive, forgive me. I need to say this to myself over and over and over. I’m a very skeptical and untrusting human. I’m reminding myself of what is actually solid and true. This scary stuff, that’s what’s not real.)

The next week will say how many nodules I have, if the nodules have grown on chemo pills, whether I do IV chemo or stay on the pills, and I’m meeting with a colorectal cancer researcher to see if there’s any trials I fit into.

But the real take away from this post is that I went to Mexico and I’m really tan now. Tans make everything better. God gets me.

Wouldn’t it be great if I could just type the words, “and she lived happily ever after, for a very long time. The end.” and that be true. My eyes even tear up at the idea of this as my reality. I’m stubbornly clinging to this hope but unfortunately, it isn’t true yet.

You may remember, I said in a previous post that cancer has always felt like a bad dream so cancer free was even more foreign because the bad dream seemed to have resolved but I hadn’t woken up. Since my surgery and drawn out recovery, I’ve been practicing as much mental discipline as I could muster into believing I was cured and wouldn’t have any more cancer. I decided the millimeter lung nodules were not going to be cancer and resigned not to give them any of my energy by worrying about them. With this mindset, I boldly strode into a CT scan three weeks ago, not worried about finding anything because I was determined my hope and my mental commitment to being cancer free would triumph. My mom was worried though. It was my first scan after surgery. My first scan after four months with no chemo, the longest I’d been off chemo since getting diagnosed a year and a half ago. Four months is a perfect window for new cancer to grow big enough to show up. I drank my cleaning fluid contrast and got my CT scan like clockwork. The first of five monitoring scans that would happen over the next two years.

The next day, I left for a long overdue visit to NYC to visit my best friend and her seven month old daughter that I had never met. After two days of my favorite foods, drinks and NYC activities, I text my oncologist for results. Reading her reply was like a punch in the gut. Some suspicious nodules had grown in my lung. They weren’t “new” nodules. At the back of my mind there had been two slow growing lung nodules that in my crusade to stay cancer free I had thought dismissively about. Not for the first time, nor I’m sure for the last, my head and heart spiraled. I had skipped right over the “what if’s” and straight into hopelessness. My poor friends, suddenly I was distracted and melancholy and crying in the hallway outside their apartment late at night talking on the phone to my mom. Things got dark folks. I was sure I was going to have to postpone my life all over again. Not go back to work, stop coaching, more heavy dose chemo, cancel my upcoming vacation, constant nausea, another surgery, more pain, more hospitals, failed treatments, frustrated doctors, never be cancer free, be abandoned by God, everyone would give up, I would give up, the cancer would spread to my brain and then within five years I’d lose the fight and die.

This is the scary story that’s waiting in the shadows to capture my heart and force itself into my reality. I don’t understand how anyone can have cancer and not know Jesus. People always tell me how strong I am. Let me put those rumors to rest, guys, it’s not me. This depression, and fear, and pain, and shit circumstances are too much for me! He is the only one big enough to over power my scary story and say what’s true. I need to say it again, for myself, He has nothing but good intentions for me and no matter how dark my circumstances are it doesn’t change who He is or how much He loves me. I had this thought last weekend, maybe I’m going through this so that God can say, even in the most hopeless and darkest paths in life, He doesn’t just still loves us and want good things for us, but He is in it with us. If people who know Him and love Him never experienced this level of darkness could I say or believe that this isn’t too much for Him? Could I say with absolute assurance that He can walk through the worst life throws at you with you? Could I tell you I know that He wants to make the most depressing and fearful things in my life something good? I think sometimes people have horrible things happen so that we can find out whether what God says about Himself is actually true. I can tell you with certainty, He is not a God of talk and empty promises. Everyone has their own version of my scary story, I just want to tell you there’s an alternative if you want it. I hope that you can see these things about God are really true when you look at the darkness of my life. By some miracle I can not only remain sane and happy but I can appear strong. Somehow I am always rescued from those dark thought spirals, though I never quite now how it happens.

My oncologist ordered a PET scan straight away. She wasn’t discouraged like I was by these lung nodules. Yes, they are chemo resistant. Meaning, the 9 months of chemo I had, which had shrunk and killed all my other cancer, hadn’t gotten rid of these nodules. If you look at my previous scans you can see these nodules, they were only one millimeter, but they were there. Now they are four and five millimeters. Last week I was injected with that damn radioactive isotope again. Sure enough, the two nodules glowed, positive for cancer. Next step, meeting with my radiation oncologist to discuss radiation. Let’s see how this goes and what the implications will be.

The fight still rages, guys, I’m so grateful you’re in it with me!

Recovery after this most recent surgery looks a little different. In a good way, mostly. I mean, I was in the hospital for twenty nine days the first time, this most recent surgery I was only hospitalized for six days. Where they went through the same incision, sternum to pubic bone, and then some, all those rib and thoracic incisions, I didn’t need to start chemo and was much stronger afterwards. I could walk, after all, more than i can say for after my first surgery. Yes, I had another infection after the second surgery and it looked like I would die again, but I didn’t go septic like after the first surgery. I wish I could make a table breaking down how similar and different the surgeries were. The main take away is I came out of the second surgery better! I really wanted to use my recovery after the first surgery as a standard for my current recovery. I can’t.

My colostomy (abdominal poop bag) after the first surgery was horrendous! It was also very convenient. I didn’t give my bowel movements a thought. As long as I had an extra bag with me, in the end I was good to go. I had pool days, beach days, camping trips, and all the summer fun with that thing. Most of my closest friends didn’t even know I had it.

Now having your intestines reconnected is an altogether different experience. How much attention do I give that urgency to poop? Am I going to poop my pants? Is this just a false alarm? This cramping, am I going to have a bowel movement or not? Turns out when you take your intestines out of your body, they get a little freaked out, stop working, paralysis for a while. By the time I was discharged from the hospital they were moving again but not in a synchronized manner. They were sporadic and out of sync, part of me felt constipated and the other part felt like diarrhea. It was uncomfortable to say the least.

After two months of severe cramping, feeling not that my intestines alone were cramping but sometimes my pelvic floor and low back, and then there was that sharp swallowed a knife pain too. I was mildly concerned. I mean, after two months, my prior experience and medical knowledge told me things are mostly healed, fascia, muscles, intestines… The fact that I had days where I was spending all my time on the couch or limping around the house because of abdominal pain was definitely unnerving. I had a follow up with my surgeon to look at some open wounds I had along my incision and at my mothers prompting I described my frequent “discomfort”. “I’m sure it’s my diet, Mom! Let’s not make a deal out of nothing!” The resident I described my symptoms to was like, “yeah … that pain is abnormal for this time frame.” I know I don’t have an obstruction because I’m going three to five times a day. “I’m sure it’s diet.” I’m always very dismissive of my pain and problems (part of why I’m in this mess to begin with). Then Dr. Reeves, my angelic surgeon came in. He asked some more probing question about my symptoms and my meds. “Sounds to me like you have Narcotic Bowel Syndrome. You’re intestines are going through their own set of withdrawals. You need to slow down your tapering of pain drugs, I wouldn’t go completely off them for another two months.” I had been planning on going off cold turkey in like a week. “Oh no! Don’t do that! You’ll be miserable!” Well ok Dr. Reeves!

I can function normally. As long as I can allow my intestines their own way, three to five times a day. As long as I can stretch out on a couch for a couple hours between activities. As long as I take at least a quarter of a pill of Norco three time a day. (I’ve been tapering. When i was discharged from the hospital I was taking one pill every four hours, setting alarms in the middle of the night so I didn’t wake up with pain.) Some days my intestines are noooooooot happy, often it’s a day or two after I cut down my dose or forget and skip a dose. It’s debilitating at times. But I look good.

Most people just want you to look good and function well. So I do. Most people are really happy with me, not just for me. But I hate withdrawals. I hate the anxiety and hot flashes and aching mind gnawing pain of withdrawals. My intestines hate it worse. Poor guys have been through enough, now this? It’s alright. Time passes and so will this.

I’m still cancer free! I’ve had blood work done and my tumor markers are still really low and my labs are normal. I’m trying to stand in the belief that the cancer is gone and will stay gone. Another CT scan and follow up in the works! Still praying and fighting!!!