Tag: coloncancer

Cancer free II.

So I don’t have cancer. Again. My life looks incredibly different that the last time I wrote. Aside from not having cancer anymore, I own a gym now! We opened in January. Starting your own business from scratch is just as time consuming and draining as they say it is and yet it still surprises me how much time and energy it takes. My left lung, the one they removed half of, has expanded a crazy amount. According to my oncologist, it’s expanded to such an extent you “can’t really tell” I’ve had a lobectomy. My upper lobe has met the demands of my exercise and training and is filing like ninety percent of my lung cavity. My oncologist joked, “so you grow livers and lungs”. It’s incredibly remarkable! I did have radiation on the nodule they found last July. I had a scan 2 months ago that showed I have some lung inflammation as a result of that. I don’t notice it too much, occasional wheezing, getting short of breath faster than normal, longer recovery to catch my breath, stuff like that.

Treatment was a bit of a deja vu from the first lung nodule in 2018. I love my interventional radiologist. I was nervous for my initial meeting with him to discuss course of care and options of biopsy and radiation. The last time I saw him, he advised against the recommended treatment because there wasn’t one nodule but eight. It was the conversation that changed the course of my treatment at the time from radiation to six months of the worst chemo of my life and resulting lobectomy. Here I was, meeting with him to discuss a biopsy of the tiny .7 millimeter nodule in my lung, just like before. I was hopeful somehow this time would be different. Different from the first time where the biopsy didn’t give us any results, took two hours and collapsed my lung. Different from the second time where I was informed I had cancer all over my left lung. You would think I would have very negative association with him after all those bad circumstances, but I don’t. Medical professionals who are real humans are a gift straight from heaven. Luckily this time, there was indeed only the one nodule. My current lung nodule was closer to the bottom and outer edge of my lung, which unfortunately, meant there was more movement with my breaths so it was more challenging to get a good tissue sample from a biopsy and also a greater risk for a collapsed lung. Initially he was very skeptical about attempting another biopsy and “tagging” my nodule in the same procedure. You go for the biopsy first then “tag” the nodule. He explained, if the lung collapsed with the biopsy this time, we would need to return for a second procedure to “tag” or “seed” the nodule (see my post from 2018 Radiation). Once he realized I was fine with a second procedure if need be, his hesitation switched to enthusiasm about a second chance at a biopsy and being able to tag the nodule for radiation. I could tell he had a vendetta against my lung nodules and was confident in his ability to make both the biopsy and “seeding” the tumor happen in one procedure.

Lung biopsies are so weird. The propofol they give you to make you sleepy and slow your breathing puts a weird blurry feeling over the whole experience. They insert needles into your back through your ribs, so breathing feels strange, and slide you in and out of the CT machine while you hold your breath and breath shallowly to minimize movement. It always ends up feeling like a strange alien abduction dream. He took as many samples as he could before a little air got in and I developed a small pneumothorax. Those hurt so much! The worst part about them is waiting for them to resolve before you can go home. But, not only was he able to also “seed” the tumor in the same procedure, but he got enough of a tissue sample from the biopsy to say the nodule was indeed cancer and we dove headlong into radiation.

This cycle of radiation was with a different more specific high tech machine than my first cycle of radiation. I drove out every other day to Orange County (just over an hour drive) for my three sessions of radiation. I found out my skull is very lumpy at the back of my head and lying still without moving for a hour is a very challenging task. The first time I did radiation it was with a less specific machine, greater surface area around the tumor is radiated but the five sessions were only twenty minutes at a time. This time I would have less sessions, only three, but each session would be over an hour and the machine would be much more specific and only target the tissue within a couple millimeters around the nodule. Also the machine would lock onto the gold seed next to my nodule and match my breathing pattern.

The first session I laid down on the table and was told the machine arm with the laser would rotate around my body at all kinds of crazy angles to target the nodule. It would be important for me not to move as movement would disrupt the ability of the laser to lock onto the nodule. If only there were words for how hard it is to not move a muscle for over an hour. Before the treatment started I was asked what CD I would like played. (CD?!) She then read out my choices, Beach Boys, Frank Sinatra, Michael Buble… etc. I think I chose the Beach Boys. Not that it mattered because one minute into track one the CD skipped. And children, I don’t mean skipped songs, I mean began having a seizure. So I’m laying there trying not to move and the CD is making the same sound over and over and over for the duration of my treatment. I was, luckily able to zone out and pretend it was just a sound the laser arm was making as it moved. The machine literally rotated all around me. Sometimes it would be over my hip a couple inches away from me other times it would be over my head six inches from my face, pistoning gently up and down as I took small shallow breaths. It reminded me of the robots in Iron Man that hold flash lights and fire extinguishers for Robert Downey Jr.. The other thing I noticed in the first five minutes of laying flat on my back and not able to move as a robot laser oscillated around me, was the back of my skull is not smooth. It’s lumpy. I mean, I knew it was lumpy because I can feel it with my hand, but not to this extent! How did this become a noticed thing during radiation you might ask? Well, as you lay there unable to weight shift or move all the weight of my head got pinpointed to the apex of one particularly bony prominence at the base of my skull. It hurts. The second radiation session I tried to cushion it with a french braid. No good. The third time I took a deep breath and asked if they could pad the head rest for my lumpy skull and they kindly obliged me.

Radiation is weird. I never saw a laser, it looked like weird robot voodoo, there were no outward signs anything was even happening. But somehow everyday I would leave feeling depleted and tired. The end of the second and third sessions I felt an ache in my chest near where I was told the nodule was. They told me it was normal because the nodule was right up against my ribs and I was just feeling the radiation in my rib bone. Cool.

That was it. Three hour long sessions and I was done. My tumor markers elevated a little bit, which never fails to make me a little nervous. The radiation oncologist also casually mentioned that he hoped the “other dormant nodules would stay that way” and my oncologist “had lots of other things she was keeping an eye on”. What dormant nodules and what other things? Turns out there are some “nodules” in my lungs that have been there for years and are completely normal in a person without a history of cancer. They haven’t grown, not even a millimeter, in the four years we’ve been doing scans. But it’s amazing the impact a side comment can have on your peace of mind.

I can say confidently the nodule radiated is already gone and not visible on any scans and my tumor markers have returned to normal. Here I am, cancer free again! It’s funny that something so small, seven tenths of a millimeters could disrupt my outlook on life as much as it did. I felt like God said to me, “You really think millimeters of cells means you aren’t healed?”. I answered, “maybe?”. Now I see how disproportionate my doubt was. That tiny nodule and three sessions of radiate made me doubt the very fiber of God’s character. How fickle hearted we humans are! Now I have an entire new arena to put God’s promises, words, and character to the test in. I started by own business and got a puppy! Life is definitely different and looks like a whole new set of adventures.

I have left coaching at the gym where I spent seven years of growth and healing to start my own gym. I am now a proud owner of Bridge Performance in Pasadena. A gym for small group training, community accountability, personal training, and physical therapy. We specialize in a non cookie cutter approach to fitness. Our goal is to provide a home for our community to find healing, wholeness, feel seen, serve and love. I can not wait to see the impact of this business on people’s lives! It is such a privilege to have a venue to share my heart and unique perspective on fitness and recovery with people. I feel like all the darkness and struggle has a place and a purpose in owning this gym! My favorite part about it is that it is so much bigger than I am.

What does the cancer journey look like now? Blood work every six weeks and CT scans every three months. Yaaaaayyyy! Stay tuned!

Roller Coasters.

If I had a dollar for every time I said “I need to update my blog” in the last several months… well… I’d be rich. But you see, I’ve been very busy living a dream life without cancer. That’s not to say that it hasn’t been a roller coaster of a ride. I’ve had lots of scares, elevated CEA and circulating DNA that would then return to normal and my scans would be clear so I’d get worked up with dread and then relieved. Cancer is tough because even when you’re done with it you’re never really done. No matter how far away you get from it, it’s still a shadow that stays with you that you worry with suddenly take on substance.

I’m trying desperately to live, to make up for lost time, to stop survival mode, expand my energy and attention, and to broaden the scope of my life to its full potential. The way I describe it is that normal life is like a warehouse and in the normal day to day functioning all the machinery is working, all the employees are doing their jobs well, the forklifts are lifting heavy stuff and moving it around, the product is being produced and everything is efficient. But cancer reduces you from normal life to survival mode life. Gradually, the power supply to the warehouse is reduced. The lights go out in seventy-five percent of the warehouse, all non essential operation is restricted, most of the machines are turned off and the employees are laid off. The product is still being made but its taking twice as long to produce half the amount. The season I’ve been in happened when, suddenly, I stopped having cancer. The power was back to normal in the warehouse. Out of the blue, the lights are all on! What a mess! I’ve been turning the machines back on, redirecting the employees, and putting the fork lifts back to work. I’ve discovered a lot of the machines were outdated and I’m not sure why I’d been using them in that condition. There has been a lot of inefficiency in the layout of the warehouse and machine placement and who knows why there are so many boxes in storage. I’ve been putting in work to reorganize and redirect my life. I feel like I’m being stretched like crazy and yet I don’t feel “stretched”, it’s more like I’m being spread to spaces I was already supposed to be occupying. It’s a very different perspective on growth than I’ve ever seen.

Riding horses on the beach in Mexico

I recognized that I needed help during this transition from survival mode to living. My ways of thinking and managing my emotions were no longer serving me. My tag line to start therapy was “I’ve been battling stage IV cancer, I’ve almost died several times, I’ve essentially had a broken heart for six years and yet.. I’m fine. I don’t feel like that’s actually true or normal”. I don’t want the trauma and the coping strategies I developed in “survival mode” to hold me back or show up in future relationships or decision making processes. One reason I did so well with cancer is because of how naturally compartmentalized I am. However, to stay with my warehouse metaphor, taking up half the building with unidentified storage of things I don’t know how to deal with isn’t doing my production or reorganization efforts any favors. I know I can’t emotionally go to the places I need to go to find the healing and resolution I need to move forward into future chapters of my life. I’ve been slowing down and recognizing and learning things about myself and taking time to figure out how I actually feel and what I need to be successful and move forward. But this isn’t a therapy post so I’ll just say therapy is great, you should probably do it.

Let’s take a second to talk about lung capacity and doing high intensity functional fitness (CrossFit) with only one and a half lungs! I knew that after a year I would regain ninety-five percent of my lung capacity! Bet you didn’t know that! So as soon as my incisions healed I went back to the gym without any “restrictions”. It was tough to get started with such limited reserves. If you know the kind of athlete I am, you know I have one mode, I come out too hot, die out quick and just push through the death feelings. I have always been able to hang on in that dark place and drive through extreme discomfort. It’s what made me “good at CrossFit”, my ability to suffer. Well, take away half a lung and that training mode of redline and then hold on just DOES NOT WORK. What it looks like is hyperventilating early and spending the rest of the workout talking myself down from a panic attack and coughing fit because my poor airways were in spasm and I literally felt like I was suffocating. So luckily, my best friend and coach, Astrid, stepped in and literally held my hand through workouts, modifying movements, re-writing workouts to add in rest breaks, making me slow down, teaching me to pace, and writing additional workouts of slow cardio to increase my lung capacity and endurance. So I got smarter about workouts, I learned where I can push and where I need to hold back, even if it feels easy. I got strong cause moving slow can actually increase your strength more than moving fast. Now, today, I am lifting heavier than I ever have IN MY LIFE and actually performing better on workouts that I did before I had cancer when I would have considered myself in peak shape. How can that be? Stronger, faster, smarter both mentally and physically than I was before I had cancer or tore my ACL? Yes, most definitely. That’s pretty cool.

Squatting 235 pounts

Did you know in English rollercoaster is one word, but Americans make it two words, roller coaster. I don’t know how that makes any sense. But being American, I’ll spell it as two words, roller coaster. And I am definitely on one. I mentioned at the beginning were keeping a close eye on me. Once a month blood tests, and still once every three month CT scans. I’ve been walking into these tests strong arming confidence. As in, forcing confidence, faking it, ignoring the nagging doubts, kicking fears to the curb. Mental discipline has always been one of my weapons in my fight against this cancer. Then when there’s a hint of a questionable lab test it’s like the rug gets pulled out from under me but everything is ok so I shame myself for getting landing on my ass and pick myself back up into my confident stance and get back to reclaiming my life.

Last month my scan was not clear. There was a nodule in my right lung’s lower lobe. Little guy. Only six millimeters but it had grown from three and a half millimeters on the scan eight months earlier. This threw me for a loop! This appears to be something concrete, there is still cancer. Eleven months after my surgery and a year since my last chemo a nodule had the AUDACITY to show up. Normally my nodules grow three millimeters in three months so the slow growth of this one is suspicious but also explains why my tumor markers have stayed stable and within normal limits. This nodule wasn’t reported on any of my earlier scans because it was thought to be a scar from my first lung surgery. In all honesty, I’m still suspicious that it isn’t just a scar. CT scans take images every three millimeters, so who’s to say, the previous scans’ images weren’t taken at different locations of the scar as compared to this scan’s image? Meaning, this scan took an image at a thicker part of the scar than the previous scan. I mean, it’s possible. Either way, we’re going ahead with treatment options. What’s looking like the best option is radiation. I’m a good candidate, radiation was effective on the lung nodule we radiated a couple years ago, next steps planning it out!

Planning out treatment is never without roller coaster rides of their own. The current plan is to get a biopsy of this nodule and at the same time “tag” or “mark” it for the radiation machine. If the radiation lasers have something to lock onto they can be more precise in their delivery of radiation. This means less tissue damage and makes it easier on me because holding my breath to decrease the amount of movement of the nodule during radiation makes it all more efficient. A machine that can learn and match my breathing pattern because it’s following a marker next to the nodule just sounds better all around! But the last time they tried to biopsy a nodule in my lung it wasn’t conclusive aaaaaand collapsed my lung. So even though the side effects are minimal the outcomes are effective doesn’t mean this course of treatment isn’t without its risks.

I turned 36! This is my house and this is my dog.

Naturally, this has caused an existential spiral. Thoughts like do I even know what the voice of God sounds like? Do I hear him accurately? Is God who He says He is? Does He lie? Is He just manipulative and says things to get us to believe things and act a certain way and doesn’t mean what He says? I’ve had all the doubts and all the terrifying thought spirals. The good news is, I have stabilized. I know He loves me, He will prove Himself to be everything He has said, He doesn’t quit, He doesn’t lie, He isn’t manipulative. But these are still thought battles I fight everyday. So the battle rages and isn’t even close to being done.

Rumors.

I hesitate to put words to it. What if I jinx it? What if I’m wrong? But I hate “what if’s” and also this is my blog. If I look foolish here because I’m wrong, it will only serve to let you experience more of my emotional roller coaster and show you the reality of how I feel. I’m believing I’m cured. Woah, woah, woah! Cured is a big and serious word in the cancer world. I’m not supposed to say that yet. It’s only been just over two months since my surgery. I haven’t had any follow up scans. I don’t think you can use words like “remission” or “cured” for years. However, since this entire thing has been a big faith (taking as fact that which is unperceived by the senses) walk, why not just keep walking that track? Heres the back story…

I was scheduled to start “maintenance chemo” a month ago. The problem was, you might remember, my body hadn’t been tolerating chemo well. We would have needed to find a new chemo that my body could tolerate at an effective dose. At this stage of treatment that would mean going into experimental territory. Experimental simply means using a chemo that wasn’t indicated for my specific cancer to see if it could have a therapeutic effect, obviously, without guarantee of success. Do I even need to tell you what the risks and the compromise to my quality of life would be? My oncologist, being the wonderful and straight forward human she is, told me, “There really isn’t a precedent here and I don’t know what to do.” Goes without saying, I really didn’t want to do more chemo and had a sense, for the first time since diagnosis, that I didn’t really need to. My oncologist asked her panel of experts and they all agreed, as there was no measurable disease, to pursue a “wait and see” approach to further treatment. Meaning, no treatment, to just wait and see if anything shows up. I have blood tests monitoring my tumor markers once a month and CT scans and circulating DNA blood tests once every three months. We’re keeping a close eye on what’s going on. My tumor markers the first couple weeks after surgery were unremarkable, my circulating DNA was zero, and post op scans showed we had gotten all the known cancer. My next scans will be sometime in the middle of December. We’re literally waiting to see. I don’t think we’re going to see anything so I’m not really waiting. What if I’m done with cancer? What does that even mean? What does that mean for my life?! 

I get to recover from surgery like a normal person and not be rushed back into chemo and radiation! After all my other surgeries, I’d started treatments within six weeks. I’ve never actually recovered fully from surgery without feeling pretty sick from restarting chemo. At this point in my recovery, I feel great! I am two months post op. I’m off my narcotics and past that uncomfortable narcotic withdrawal thing. In truth, I hate withdrawals so much that I went off the pain meds a little early so I could just get past them and stop worrying about it. Managing withdrawal symptoms is basically a full time job. I am definitely ahead of the curve when it comes to recovering from major surgery! I’ve even returned to workouts and coaching with a mask on (which is quite a lung workout, let me tell you!). My strength is already coming back and I’m starting to push and lean into the discomfort of cardio workouts. I cough reflexively like crazy at the end of workouts and feel like I have asthma when I go a little too hard. Pulmonary capacity can be strengthened just like any other muscle. If you know me at all, you know I’ll work for it. I want it to look like I still have two lungs during training in six months. If COVID clears up I’d like to test my limits in a competition. I’m excited by the prospect of training without feeling sick and weak and look forward to seeing how much ground I can gain with my fitness.

This is where I run out of words and don’t really know what to say. Can it be that I am actually done with cancer? I am still hesitant to “call the game”, say I am “healed,” “cured” or “cancer free”. Where I absolutely believe that God will be the one to heal me and that once I am healed I won’t live my life looking over my shoulder, does that mean I have to be the one to say when that’s happened? Is that day really here? Do I minimize God’s power somehow if I call it early? Does it mean I doubt His power if there’s still a whisper that there’s more to come? What I have been saying with trepidation is I believe they got all the active cancer that was in my body and I don’t believe I am waiting for any cancer to show up. And just saying that means I risk being more heartbroken than I have yet been to date and looking very foolish if more nodules show up. I think that’s the crux of it, I’m very scared to be disappointed in the Lord. He’s been so gentle and kind to me as I stubbornly cling to Him. We’ve worked through a lot along this journey. It’s not what I would have chosen for myself or for my family or friends, or an enemy even, but as I’ve said before I’ve seen unspoken treasures.

I went to my oncologist to check my tumor markers two weeks ago. I was nervous. I didn’t really want to go. I’ve never been really nervous about tests before. It’s always seemed like it was something bigger than me, outside of my control, I trusted I was being taken care of, the path was set and I would be ok. (I don’t know how people live when they don’t understand or believe how much they are loved by God. Makes me feel sick to think about.) So to be nervous now is to say something has changed. Am I not as taken care of? Am I less loved? Is there, all of a sudden, something within my control that I can do? Well, no. So in truth, I shouldn’t be nervous. Yes, yes, it’s natural to be nervous about these things, but for me, it’s important to continue to wrestle for a bigger perspective than my own. In the big picture, nothing has changed. So practically, what does this mental stance look like? The blood test two weeks ago showed a slight elevation in my CEA (tumor marker) from 1.6 to 1.8. Anything below 4.0 is within normal limits so no big deal. But as things go with me, normally, any increase has meant an increase in cancer activity. So what does it mean? In my mental rules, I can’t let it mean anything other than a slight fluctuation. There are too many possibilities that can explain it. It could be due to lab error, systemic inflammation, my immune system responding to a virus, orrrr it could be because of increased cancer activity. Why would I commit myself to worry and doubt and focus on cancer activity and “what-if’s” over other possibilities? Instead, I am going to continue to wrestle for that bigger perspective. I am completely taken care of, deeply loved, and I still feel really good and am recovering well from a major surgery. Since life and God don’t operate independent of each other or in a vacuum, I also need to remember that the second I decided to settle my heart into a course of faith, there would be opposition to that course. Opposition to peace, trust, and joy. This season is full of it, fear, doubt and depression. Here’s the thing, peace, trust and joy are worth fighting for, so I will fight for them, against odds. He isn’t called the God of Hope for no reason, after all.

In two weeks I’ll recheck my labs and tumor markers, and we’ll schedule more scans. I should know by Christmas if I really get to start 2021 without cancer. What a dream that is! Guys, stand in peace and trust and joy with me! Let’s fight for those to reign in our lives! We all have our own versions of opposition to these things. Our own fears, doubts, and sadness. Guys, we need to fight to keep them in perspective and wrestle to have that bigger perspective of our life. Hope will always rise and there is always a dawn that ends the darkness! The story isn’t over. Your story isn’t over either.

Lobectomy.

I expected to get nervous, scared even. A lobectomy sounds like such a big deal! I mean, a surgery that removes half your lung? How does one even breath after?! After my last surgery, the wedge resection of a tumor in my right lung, I remembered vaguely (as is the way with things after surgery) having so much pain that I didn’t want to breath. As I would take shallow, less painful breaths the machine that monitored my pulse oximetry (the amount of oxygen in my blood) alarmed so loudly it repeatedly woke me up. All I wanted to do was sleep without breathing but repeatedly nurses or family members told me I needed to take deeper breaths. It was irritating because clearly, no one understood how painful it was. During that surgery they also reversed my ostomy and had cut me open from my pubic bone to my sternum for the second time so that may have played a role in how much pain I was having. But I healed. Pain is no longer an issue I struggle with so I knew that I would also overcome any pain from this surgery since the incisions would be just as invasive as the ones on the right side but this time, I wouldn’t have my abdomen cut open. So I wasn’t nervous about pain. The last two surgeries, I grieved what I would lose in strength and capacity for my CrossFit training and that was the saddest and most troubling thing to me about them. As I had already had an almost full recovery from both those surgeries, I knew I could do it again. Lifting heavy is my favorite part and I know I can get back to that. My surgeons had told me functionally I wouldn’t notice much of a difference and would be able to get back to training in only six to eight weeks. That’s a blink of time! I’d be back before people would even notice I was gone! So I wasn’t nervous about my recovery. I had already lived through two other more invasive and dangerous surgeries so I wasn’t nervous about dying. I really wasn’t nervous at all. The worst part for me was having to watch the people I love have to watch me go through it. My closest friends and family, although very supportive and happy for me, were not excited to watch me go through another surgery and watch me be in pain. I think I was nervous about the post op narcotic withdrawals somewhere at the back of my mind. I could tell I was stressed even though I couldn’t pin point exactly what the source was. I’m pretty disconnected from my emotions overall, I don’t know how I feel at any given point in time. Generally speaking, a way for me to identify unacknowledged emotions or stress is by how busy I am. Let me tell you, the week before my surgery I was BUSY.

I had taken the weekend before my surgery to go down to San Diego and visit my brothers, my sister-in-law and my nieces. My aunt and cousin came down and we stayed in a nice hotel with my parents. It was a very pleasant weekend with my family, laying by pools, sipping Palomas, and laughing. I stayed till Monday and came home just in time to drive straight to the gym for a personal training client and to coach my evening classes. I had eight to ten hour days scheduled in the gym Tuesday through Thursday and surgery Friday. I didn’t realize I was stressed until late Thursday when after a full day coaching, my gym family threw me a surprise happy surgery party. I was overwhelmed by fifty-ish masked athletes, friends and family members, many I hadn’t seen in months since quarantine began. I cried. People were shocked that they had pulled off the surprise but I was so focused on coaching and training and every thought being occupied with not thinking about surgery that I had let things slide. Suspicious activities that caught my attention weren’t investigated or questioned because I had a full plate already. I think a lot happened that week that I was oblivious to because I was focused on staying busy and avoiding how I felt and what I thought. As things in life do, surgery came as planned whether I was ready or not, processed or not, emotionally engaged or not.

I didn’t sleep the night before. Not because I was nervous but because I was busy! To be fair, I needed to be up at three in the morning to leave by four, to get there by five to start the surgery at seven. I’m someone who would rather not sleep than wake up early so that’s exactly what I did. I had some friends and family stay over till one in the morning because they wouldn’t be able to visit at the hospital (Covid) and couldn’t bear the thought of saying good bye yet. But we finally said goodbye and I headed to my house to pack and clean and shower. I was on the gurney in my hospital gown in what felt like the blink of an eye. One minute I was laughing with my mom and the very next minute they were taking me to pre-anesthesia. This part is the hardest part of surgery for me. It’s the part where you say good bye to your family in a hurry and don’t really get a good good bye because there are people waiting for you and watching. It’s the part where the reality of surgery hits you and it’s hit you too late! Maybe it’s not that way for everyone but for each of my four surgeries that’s how it’s gone. And my heart breaks every time. It hits me that this might be the last time I squeeze my mom’s wrist and hear her voice and its too late to take all that in. I always try to be brave and smile so she doesn’t worry but I always do so through a stream of tears.

I don’t know how it is at other hospitals but the Operating Rooms at Loma Linda are through a labrynth of hallways. I always get distracted from my sadness by imagining that I am on some strange ride at Disney Land and make a joke about it to the guy pushing my gurney. We always laugh. Then I say something about how I’m glad they know where they’re going because I would be sure to get lost. Then we laugh some more. Literally, we turn right and left and roll past these double doors and those double doors, left then right, and pass people fully masked, capped and gowned, down a long hallway, the fluorescent lights whiz overhead, some of people we pass say hello, others don’t even see us, left then right, some of them walk past us casually, others dart out of the way, then we pause in front of some automatic double doors. These slowly open and I’m wheeled to a curtained area and a friendly nurse asks me my name and birthdate. If you’re going to have a surgery just be ready to tell people your name and birthdate a million times.

Pre-anesthesia waiting room is where the real waiting happens. The nurse hooks you up to an EKG so they can get a good baseline for what your heart rate is doing, it starts casually beeping along with your heart. They attach the pulse oximeter to your finger, it’s very annoying (you can’t bend your finger well). Then they put in the IV. It’s very important they chose a good vein because this is what is going to deliver the anesthesia that will knock you out and keep you out. I have said it before, I’ll say it again, I have excellent veins. All the nurses say so. This day was no different. The needle they use is huge so they numb you up first with tiny lidocaine injections. I hate them. I’d almost prefer just the jab with the huge needle because the residual numbness that lingers is just as irritating as the pain would be. Then you wait. This room is where you meet the anesthesia team and they discuss their plan. Then you wait for the surgery team to come through to confirm their plan. Then you wait more for the anesthesia team to follows through with their plan. Which in this case includes a thoracic nerve block. They lay me on my side and using an ultrasound basically inject, I can’t remember what, between the sheaths of muscle between my ribs. It was very fun to watch the ultrasound screen as the needle went in and then ballooned the tissue with the fluid then go in deeper and create another balloon. All the while my ribs and armpit are getting progressively numb. Then the OR nurses come and introduce themselves, and confirm your name and birthdate.

Between all of this I had the most amazing experience of my life. You might believe it, you might not. It’s my experience and my blog. If you don’t believe in supernatural things or a God that loves you and works actively on your behalf you might want to skip this paragraph all together. Weirdo. I feel like I have words for it thanks to C.S. Lewis. I had been reading Out of the Silent Planet, with friends just before surgery. Lewis has a way with words that just broadens my understanding of experiences in the most unique way. But anyway, in this book he describes eldil (we might commonly call them angels, heavenly hosts, messengers/servants of God, what-have-you) and the chief eldil, Oyarsa, as shades of light.

“… Oyarsa was coming up between the long lines of sculptured stones. Partly he [Ransom] knew it from the faces of the Malacandrians [Marsians] as their lord passed them; partly he saw– he could not deny that he saw– Oyarsa himself. He never could say what it was like. The merest whisper of light– no, less than that, the smallest diminution of shadow– was traveling along the uneven surfaces of the ground weed; or rather some difference in the look of the ground, too slight to be named in the language of the five senses, moved slowly towards him. Like a silence spreading over a room full of people, like an infinitesimal coolness on a sultry day, like a passing memory of some long forgotten sound or scent, like all that is stillest and smallest and most hard to seize in nature, Oyarsa passed between his subjects and drew near and came to rest, not ten yards away from Ransom in the centre of Meldilorn. Ransom felt a tingling of his blood and a pricking on his fingers as if lightning were near him; and his heart and body seemed to him to be made of water.”

As I lay on my gurney waiting. I had the sudden sense, not identifiable by any of the five senses, mind you, but none the less, I had the sense that I was surrounded by such beings as Lewis described. But not just surrounded like I was guarded but as though the surgery had already begun. These beings were generously and fervently working on me. I felt it so strongly, in fact, I kept squinting my eyes and peering on either side of the gurney hoping to catch a “whisper of light” or “diminution of shadow” where it shouldn’t be. I felt it so strongly that my eyes kept welling with tears. I felt immeasurably grateful and unworthy and humbled, but knew it had nothing to do with me and everything to do with an army of prayers and a God who loves to prove He is everything He says He is. So yes, I sat there waiting, but it was so much more than that. This unseen work was undeterred or interrupted by the many doctors and nurses who went about their duties around me. But every minute of silence I felt the unseen presence battling at the cellular level on my behalf. This surgery was a bigger deal than I could have ever prepared for, apparently!

Surgery is a very coordinated effort with lots of moving parts, un-benounced to most, both seen and unseen. I’m still in awe of all of it. The nurses, anesthesiologists and surgeons all work together to bring about the desired result. When the different teams met up at my bedside they would joke with each other which put such a light hearted atmosphere on such a somber, serious affair. While we waited on the final finishing touches to be made in the OR, several teams had gathered around my bedside laughing about this and that. I liked it. I liked them. When they finally told me “Ok, everything is ready! Let’s head to the OR.” I said, “Oh! I’m so sorry I’ll be sleeping soon, I wish I could hang out longer.”

The rest is very fast. It’s a short road to the OR, only a couple of turns, the slow opening automatic doors and you’re there. Surrounded by everyone you’ve met over the last hour and a mass of machines and lights. “Ok Amy, we’re going to give you something to relax you a little bit then we’re going to administer the anesthesia and you’ll be asleep.” “Ok, bye, everyone!” I say as they plunge down the syringe into my IV. I hear gentle laughter as I fall asleep.

Then you wake up. Slowly, and groggily, you fight to stay awake, in and out of sleep, a nurse always just a whisper away. The pain is pretty intense but it’s all so blurry. I was fighting hard to stay awake because I knew the sooner I woke up the sooner they’d let my mom see me. I knew my mom needed to see me. She didn’t care what the doctors and nurses had to say she would want to see that I was alright and had come through it ok and wasn’t in too much pain.

Chest tubes hurt. Don’t let anyone tell you differently. It’s a half inch tube squeezing out between your ribs pressing on a nerve. Let’s not forget your ribs move with every breath which means the nerve the tube is pressing on gets irritated with every breath. Did I forget to mention I had four small one to two inch incisions besides the one with the chest tube coming out of it? Well I did. They felt exactly like what you’d imagine a stab wound would feel like. Like someone took a knife stabbed me, twisted it around, then pulled it out… five time. There’s no way that doesn’t hurt. Unfortunately, I’d already had three other major surgeries so my body tends to laugh at drugs and their attempts to control my pain. It’s amazing how your body remembers narcotics. It was as though my body said, “Only that much? That’s all you’re going to give me? I remember this stuff and I know you can do better!!” So I found the prescribed dose falling short to help control my pain and was in a constant six to nine out of ten pain for the first couple days. Yes, a nine meant I was moaning and crying and often couldn’t get more meds for another hour or two. Finally, a nurse cared enough to recommend to the doctor to increasing the frequency and staggering the narcotics with the anti-inflammatories. Pain management was a journey during this hospital stay, but we finally got it under control.

By the time I would have been able to go home my pain was controlled, four to six out of ten. But the kicker was the chest tube wasn’t ready to get pulled yet. If you pull a chest tube too early, you collapse the lung. So I was cleared to go home with my chest tube! Which is all good and fine but that means there needs to be a receptacle that needs to be emptied. But suction needs to be maintained so the only way to empty it is by sucking the drainage from the receptacle with a syringe. Putting torsion on the tube to attach the syringe then create enough suction to pull the fluid out is a very uncomfortable sensation I would rather never experience again. The next problem with going home was my bowels. Narcotics management doesn’t just relate to pain, unfortunately. It also relates to bowel performance, or lack there of. Narcotics and surgery both slow the muscle contraction of your intestines. Even though I was eating fine there was zero output reflecting it. You can’t go home until they can ensure that your bowels are moving and you aren’t developing an ileus or obstruction. The day of discharge I found myself with pain under control, a portable chest tube in place and stuck waiting on my bowels. The amount of laxatives, stool softeners, and even suppositories I had received to no avail would shock most of you so I wont go into it. Suffice it to say, the hour drive home after finally being discharged was one of the most painful and uncomfortable car rides I think I’ve ever had.

But it’s done now. All those pesky lung nodules are mere objects for scientific research. I’m still breathing. Still fighting. Focusing on recovery and trying to remember how to dream a big full life into existence. This is not a road well traveled, but I’ll keep narrating it as best I can.

Uncertain.

I wrote this a week before surgery and never posted it! To be chronologically consistent I will post it now even though I am post surgery and recovering very well. Here’s some more tension and encouragement to what’s becoming a very long and adventurous tale!

It’s pretty amazing what humans are capable of. Nothing has exposed this better than the pandemic! I know ALL of you know what I’m talking about! We have been placed under the external stress of finances, work, and child care, while adding additional emotional strain of uncertainty, depression, and anxiety! It’s a lifestyle shift for everyone. 2020 has brought down the hammer of turmoil, social unrest, political strife and natural disasters in a culmination unlike anything humans have seen in loooooong time! The way that we process and struggle looks different for each of us but we’re all in the trenches of uncertainty right now and, if nothing else, we’re feeling the discomfort. Two weeks before my surgery was an outward manifestation of my version of this tension. I coached and trained a lot of athletes. My days were long and tiring. Earlier in the week I got to add to the stress of programming, coaching, and managing small group classes my pre-op work up. The pre-op work up was stressful because any of it could deem me a poor candidate for surgery and cancel the whole thing!

In chronological order, I had a pulmonary function test (PFT), surgical consult, CT-PET, blood draw, EKG, more blood draws, and a Covid test to be done forty-eight hours before surgery. I had a full day of appointments and tests (where I wasn’t allowed to eat) that was eight hours long! The PFT looked at my lung capacity to make sure my lungs could handle and recover from a lobectomy. I consulted with the surgical oncologist who specializes in intra surgical chemotherapy to see if I was a good candidate for that. I had a CT-PET scan to make sure there were no surprise tumors anywhere else in my body. I had an EKG to make sure my heart was healthy enough for anesthesia. Finally the multiple blood draws to check my cell counts, tumor markers, and blood type. All that is good and fine but exhausting. Plus I had two migraines and the not eating all day thing… really makes me upset.

But let’s be real, all that stuff is the external. Schedule of hours and hours in the gym, going from one test to another, staying up late to do online programming and coaching, discomfort from migraines, being hungry, smoke from wildfires, wearing a mask… external external external. I’ll talk about that stuff all day. But what adds that true level of difficulty, isn’t my schedule, bodily discomfort or fatigue. The real struggle is in the unseen, it’s the internal stuff. Maybe it’s that way for you too?

The truth is I’m worried about my personal training clients with other coaches or training on their own. I’m worried about my coworkers stress level when I’m not there to support them. I’m worried about the emotional stress my surgery will add to my friends and my family. I’m worried about spending time with people before surgery. I’m worried about how much I’m worried and even more than that my mom internalizes all this even more than i do so, naturally I’m even more worried about my mom’s worry (she’s handling things so well by the way). Then on top of all that, this week I got to add the emotional stress that goes along with all the tests and procedures. I was worried my PFT would show my pulmonary system was actually not where it’s supposed to be and the surgical plan would change. I was worried my immune system was too low and that would affect surgery. I was worried I wasn’t getting enough sleep which, for me, almost always ensures I’m going to get even less sleep. I was worried because my counts were low and I wasn’t getting enough sleep that I would get sick and that would delay surgery. But most of all, I was worried the PET scan would show there was a new tumor somewhere else. That would mean surgery would be cancelled and I’d have to try some new chemo which leads to a whole plethora of rabbit trails of worry.

I think we can all agree that external stress is one thing but it’s the emotional undercurrent that really makes it tough. And emotional undercurrent combined with uncertainty is ALWAYS THE WORST AND MOST INTENSE. Here’s the kicker, send those scary “what ifs” packing! Do not let that worry shape your life or take up more space than it should. The best way to do that is to invite a larger, loving power into your life who can reframe that fear and worry in love! All this is to say, you’re doing great in your life. Battling it out, getting out of bed, making breakfast, managing your schedule, their schedule, work’s schedule, feeding the kids, feeding your dog, putting up that shelf, reorganizing your fridge, folding your laundry, buying groceries, wearing your mask… guys, we’re doing IT!

I could have had all my interactions with athletes strained by my worries. When I was coaching my classes I could have been distracted by my worry. I could have stayed up all night running my worries over and over in my mind (and I have!). My worry could have stolen my joy when I was with my friends, or isolated me from the people who support and help me. Here I am on my soap box again! Guys, the reason it didn’t is because I can trust that loving power outside myself. It’s not the universe, it’s not mental discipline, it’s not even CrossFit. It’s Jesus. Believe you me, if He lets me down in this, you’ll be the first to read about it because I will be irate. Even though I have feared Him failing me many times during this scary, dark, uncertain tunnel of a time in my life, He has not let me down yet! It is my STRONG belief and experience He can reframe your worry and let you have some peace too, if you’ll let Him.

I’m off my soap box now. Annnnnyway, as exhausting and hunger stimulating of a day as my day of tests was, it provided me with some very good, confidence inspiring news! My EKG was normal, blood work normal, PFT above normal (thanks crossfit), and COVID test negative. But the real kicker was the PET scan results. You may recall my tumor markers have been slowly going up, despite chemo, the last several months. Tumor markers have been a very good indicator of cancer activity since my diagnosis. When they go up that has always meant somewhere tumors are growing. With CT scans that show my lung nodules are growing slowly were suspicious that it means there’s cancer somewhere else. That’s why my PET scan could have been a nightmare! High tumor markers could also mean the cancer is trying to spread. It’s never a good idea to go off chemo (like I have to do to recover from my surgery) that suppresses cancer growth when you’re growing cancer. The day of my PET scan, my oncologist text me that my tumor markers are starting to trend down. Finally. Took long enough. That my fear of cancer spreading while I recover from surgery down a notch. Even more so, my PET scan showed no cancer in my colon, liver abdomen pelvis, heart or brain or any other unknown random location. Yes, my left lung lit up like a Christmas tree, saying that the nodules are certainly cancer. With how much it lit up, we can say the cancer is very active. That all means we can confidently the lung nodules were causing the upward trend of my tumor markers. All this reinforces out plan to get the lobe out of there!

My surgery was confirmed for the Friday, September eighteenth. I am thrilled!

PS Expect a surgery post soon!

Big Things.

If you didn’t hear, Chadwick Boseman died of colon cancer last month. He was diagnosed a year before me but was only stage III. That’s sobering. The temptation is to let it scare me. I was diagnosed September 21, 2017 with stage IV colon cancer with metastasis EVERYWHERE. Why should I survive and not him? When I look back, I don’t think I grasped how advanced it was …well, I knew even at the time I didn’t recognize it. I remember saying to myself, “I’m sure I’ll look back and think on how scary this really is.” Knowing now what I know, how serious a tiny one to two millimeter nodule of cancer is, the cancer I had was catastrophic. A tumor almost obstructing my colon, three masses in my liver, one ten centimeters, one seven and one four, it was in the lymphnodes of my pelvis and abdomen and what we didn’t know then was that it had scattered cells throughout both my lungs. It was inoperable. I had stage IV inoperable widespread colon cancer. It seemed like a bad dream and not real. Fighting it seemed impossible and inevitable at the same time. I wonder how Chadwick Boseman looked at, had it ever become real for him? Even though I’ve got crazy scars from multiple surgeries that prove I’ve put my body through hell and feel nauseous and sick most days indicating I’m still fighting… it still isn’t real for me.

Before my third round of Lonesurf we checked my labs (blood counts and tumor markers) like always. They look at the number of neutrophils (ANC) to get an idea of how my immune system is tolerating treatment. I’ve been shown to be very resilient when it comes to chemo. It knocks me down but in my off weeks I recover pretty quickly. It’s normal for my white blood cell (WBC) counts and ANC to get pretty low with the chemo. On the other hand, my tumor markers (CEA) usually reflect that chemo suppresses cancer activity and stays pretty low. My oncologist was not pleased that my WBC and ANC were suuuuper low and my CEA was elevated. No big deal. Don’t start chemo, come back to recheck labs. Per usual, I would probably look better the next day. However, this time that was not the case. My counts were even lower (normal is 1.5-8.0, I had dropped to .4). This happens with chemotoxicity, basically the poison you ingest affects your immune system cell production in your bone marrow (myelosuppression). The result is immunosuppression and neutropenia. Where this isn’t a big problem, it’s never a good thing to have during a pandemic, but all that you need is an injection that stimulates your bone marrow. For me, it had some other implications. Basically, my body wasn’t handling the new chemo well either. So we needed to give me the injection and reduce my chemo dose, making chemo even less effective. Reducing chemo dose in light of increasing tumor markers is not a good pickle to get stuck in. What was even worse, in my opinion, was the injection has a side effect of bone pain so I would have to cut back on training at the gym! Already, I had only been able to train two to three times a week, cutting it back further just makes me sad. Between, low ANC, low WBC, increasing CEA, throwing up, less time training, the theme here is chemo is not viable for me much longer and we needed another option.

Re-enter Dr. Zaheer, my thoracic surgeon that had taken out the first lung nodule a year an a half ago during my lung wedge resection and colostomy reversal surgery. My oncologist set up a referral and I got a consult with him the next week. I’ll say it again, I love my oncologist because she has never pretended to have all the answers for me. She has always been of the mind that the more brilliant minds we can have on this the better and consulting other doctors is the easiest way to do that. We were just going to see what Dr. Zaheer had to say about surgery. Was a lobectomy possible? Too risky? Was it worth it removing half my lung to get a majority of the nodules and leave the rest? What options did he recommend? It was just a consult. Or so I told myself… Of course the secret less rational me knew this consult was actually a really big deal. There was the possibility that he would say yes to surgery and I could turn a corner with cancer, get aggressive again and be done with all of it. But to say that out loud meant that the converse could also be true. He could say that surgery wasn’t an option and that I just have to take my chances with chemos that weren’t working and wait for things to grow and spread, and feel very helpless.

We drove back to Loma Linda to meet with him and hear his recommendations. Where I like Dr. Zaheer and recognize his skill as a surgeon, trust him with my life, know he is the surgeon for me, he lacks bedside manner. All my sarcastic responses and morbid chuckles fall on a dead pan face. He understands my humor, he can see and even recognize when I am joking and never laughs. It’s slightly daunting. As any good surgeon, he patiently went over the options, wedge resections, lobectomies, benefits, risks, approaches, techniques. “Looking at your scans, it looks like seven nodules are in the lower lobe, with one more in the upper lobe.” This sounded like good news to me. I thought there were only five in the lower lobe and a lobectomy would leave three nodules. But this meant there was the possibility of removing almost all of them in one felled swoop. Then he really made my day and offered to perform an additional wedge resection on the upper lobe to get the last nodule. Yet he seemed hesitant and noncommital. He said, “I am hesitant to recommend surgery because we don’t have a biopsy. It’s possible we do a major surgery and they are all benign, that would be no good.” Naturally, as is my way, I started laughing. Which confused him so I quickly explain, “Oh we’re confident it’s cancer. We’re not worried about that.” His countenance lifted, it was like we had given him permission to attack a hated enemy and he drew his sword. “Lets schedule you for surgery then.”

The plan was aggressive and yet simple, just the way I like it! The approach would be similar to the wedge resection surgery we did on the right lung. Robotic approach minimizes how invasive the surgery is. Instead of cutting me open and spreading my ribs they make five small incisions for tools and cameras. Turns out a lobectomy is a much lower risk surgery than the wedge resection I had already had. They follow the fissure lines in my lung and only cut the small part attached to the upper lobe. The risk of bleeding and collapsing my lung are far less. After the lobectomy they’ll go after the last remaining nodule in my upper lobe and perform a wedge resection there. If they can’t find it or “feel” it with the robot they may have to convert to an open approach and do the big incision and spread the ribs and go in to find it. However, they are fairly confident that they can remove it without all that. He was also recommending me to a different surgeon who specializes in a intra surgery chemo technique called HITEC (hyperthermic intra thoracic chemotherapy). FUTURE! It’s where they fill the lung cavity with chemotherapy drugs that have been heated, after the surgeon removes tumors. This way they can make sure no cancer cells that have been dropped or left over after the lobe removal survive. How cool is that?

Of course there’s the risk list that goes along with the benefits list. Pneumothorax, hemorrhaging, weird surgical complications, infections, and death (always on the table). There’s the risk that they don’t get all the cancer. There’s the risk it has already spread elsewhere and is still too small to see. There’s the risk that during my recovery it spreads and grows somewhere else. Risk, risk, risk… But there’s a hope that counters every risk! When that line gets drawn, I’m standing with hope every time! He’s never failed me yet!

At this point, I am two weeks out from surgery and I am only excited. I’m sure when it gets closer I’ll get nervous and nostalgic and start crying when I look at palm trees and mountains and while I brush my teeth, drive my car, open my front door and other normal everyday things. I am hopeful. Part of me really wants to be confident and say, NO MORE CANCER. And part of me doesn’t want to call the game early if there’s more battling to do. Where I am tired and want to move past this, I’m not at the brink of quitting and I am not yet too tired to fight like hell. I am very lucky because God designed me with a very resilient body and an even more resilient heart. I love a good fight, I am always down to get in the trenches and wage war with all that I’ve got. That’s actually a big reason why I love CrossFit so much. I have found that at the point when I most want to quit that I’m able to lift up my head. But guys, I want to be done and there is a possibility this surgery will take a bleak situation and completely turn the tables for me. Stay tuned folks!!

Quarantine.

The week before quarantine became official in Los Angeles, I reached out to my oncologist about me working in a hospital with constant exposure to the COVID-19 virus. Even though, I don’t act like it or look like it, I am one of those high risk people. The people that would be severely endangered by infection. I wasn’t particularly immunocompromised, even though I was still undergoing chemo. The thing that made me … nervous (Concerned? Hesitant? I wasn’t scared, I just wanted to be responsible with my health) was that damned pneumonitis that I still had. You remember, the lung inflammation that was still showing up on my scans and holding me back during workouts. It had been there for a year as a result of radiation I had a year ago on my second lung nodule. Even though I was asymptomatic, not short of breath or coughing, I thought to myself, “if my lungs are already compromised, maybe getting a virus that targets the lungs wouldn’t be good for me.” I mean, the reason it kills people is it causes a pneumonia that doesn’t respond to treatment and basically causes organ failure because the lungs can’t provide enough oxygen. Disconcerting. So like I said, I called my oncologist to see how concerned I should be and if I should go on disability until after the virus runs it’s course in the hospital.

I was at a friends house at a beer club meeting (I’m the Chief Lager Officer, were very official) when she called me back. When I take phone calls, I’m a pacer. I walk circles on carpet patterns or go heel toe on a hardwood floor panel or stagger step across tiles. Naturally, I headed into my friend’s bedroom and began pacing as my oncologist casually reported on her family experience with the virus and her patient caseload. “Of course, Amy, I agree it’s a good thing for you to take time off work until this virus has run its course. But mostly because I have other news.” My stomach dropped. What news? I wasn’t expecting news. As it turns out, we had resubmitted blood for my Circulating DNA and she had gotten the results earlier in the week. Apparently, it wasn’t at zero anymore. There was a little spike, .08. I don’t really know what that means and it’s so small that in isolation it’s not of concern but my tumor markers (CEA) had also gone up slightly. With a pandemic gaining momentum, it’s no time to allow my cancer to also gain momentum. “I want to start you on irenotecan again. I know it makes you nauseous but I want to stay ahead of this and continue to be aggressive.” I swallowed hard as tears began leaking out of my eyes. “Well, yes, ok, I understand, of course.” I managed to sputter in the midst of a thought tornado.

Wearing a mask through my entire chemo session is the new norm.

I was crushed. I had just gotten a lifetime PR on my clean and jerk in the gym. Like you can read in my last post, I had been living a lot of life ignoring I even had cancer. My chemo was so gentle that I was feeling amazing for the first time since my diagnosis and had found my stride living in the unknown. I felt like I was being yanked back into the disease. Of course, I can’t just live in the unknowns of the corona virus and quarantine like everyone else, I also had to have unknowns of my cancer and go back to being immunocompromised. I let fear in, guys. I didn’t even think of what God was whispering to my heart. I felt real sorry for myself and got scared I was going to die of corona virus. That I had fought cancer so hard only to get the virus and fight like hell again, but probably lose. What a horrible state of mind!

My frequent chemo couch view

Then I went and got my chemo hoping only two out of five drugs could have minor side effects and I’d still be ok and functional. Chemo nausea IS SO MISERABLE. There aren’t words. On a scale of one to ten, one being no nausea and ten being throwing up, I had day after day, at a nine. After a week it was down to a four. I wasn’t taking my Ativan or the pre-meds because I thought the lethargy would make me feel worse. I was gagging on my spit and didn’t want to swallow water. I wanted to throw up but knew it wouldn’t make me feel better. The thing about chemo nausea is it’s generated by your brain. The poison center of your brain goes off and tells you to get out whatever you’ve ingested and nausea and vomiting is the body’s gold standard for getting the job done (that’s why when you drink too much alcohol you throw up). Well, when the poison is in your blood, not your stomach and when the nausea is from your brain, not your gut, there is no relief. The antiemetic (anti nausea) drugs keep me from throwing up so I can keep down fluid and food and not get dehydrated. However, I have yet to feel like they help decrease my nausea. I was paralyzed by the nausea and it lasted longer than I remember it lasting during previous chemo rounds. I used to feel better after five days and go into the gym and coach or go to work at the hospital. Quarantine made things worse, I think, because I had nothing to divert me from feeling miserable. I was back to a week on the couch followed by a week playing catch up with my life. I hate that lifestyle. I feel so robbed by cancer when I’m living like that. Not working or seeing my friends was just exacerbating everything.

Quarantine does mean more sun time… that basetan has come in very handy!

I had this resting anxiety coursing constantly in the background. I started having panic attacks like in college. I was being suffocated by the unknowns and I wasn’t handling it well. As I’ve said before, prayer is powerful. What sets me apart in this battle, is the army of people praying for me. In desperation I turned to my worn out duct taped bible hoping to find a verse I’d read before to comfort me. I stumbled upon Psalm 16 and found a verse that cut through my self pity and my perception of the steep cost I was paying in life. Verse 5, “Lord, you alone are my chosen and assigned portion, my cup; you maintain and secure my lot.” And like a light switch, I was ok. It was like my heart said “ohhhh yeah! That’s right, “ and rested confidently. I wasn’t going to die from COVID and nothing in my life was going to be taken from me that I was meant to have and live out. My life’s boundaries, my lot, what I am intended to posses is secure and maintained by the biggest and most powerful force that exists. Despite what a train wreck I felt like, I was shocked there weren’t tears or a major thought battle in reaching this conclusion. But at the same time, when there’s people behind the scenes praying for you everyday, you get to put energy into battles elsewhere, the spiritual leg work sometimes has already been done through other people’s prayers.

My first social distant workout in the front yard!

The battle ground for me turned back to the physical. The gnawing nausea and relentless malaise. After two rounds of irenotecan, for the first time, I asked my oncologist for a treatment break. My body had had it! I couldn’t stand the thought of my body getting wrecked again so soon. I told her about my nine out of ten nausea days, gagging on my spit and the nausea panic I was having for days after chemo. One thing we’ve discussed in the past is the tendency for patients nausea to become stronger because of psychological influences. For example, I’ll start feeling nauseous the days leading up to chemo, or driving the route to chemo, just because of the association and then it makes my day of chemo nausea even worse. My oncologist prescribed Zyprexa, to “help with my nausea” and keep it from becoming too psychological. When I looked it up I found out it’s a big hitter antipsychotic. I hate feeling super doped up but I am not mad about sleeping for two days until the worst of the nausea has past. Chemo has definitely looked different during quarantine than it has in the past.

Quarantine puzzle sessions with my best friends.

Mid May, we had new three month interim CT scans and rechecked the circulating DNA. I wasn’t sure what the CT scans would show. I knew there was increased activity of my cancer from my elevated tumor markers but we had started cytotoxic chemo so maybe we stayed ahead of it as we planned. Were there new nodules in my lungs? Or even new tumors somewhere else? I was ok with any results I got, I just wanted something definitive! I needed a new direction for the battle to go! I was sick of wearing down my body with more chemo! I wanted to have my pneumonitis resolved and the nodules to declare themselves so I could do radiation or surgery! Stay aggressive and fight like hell. Chemo was feeling so defensive and fruitless. That was my prayer, let the scan say something definitive!

We sat down with my oncologist the next day to discuss the scans and next steps (she’s so good to never make me wait long to go over the results). My pneumonitis was gone! Most, if not all, the one to two millimeter nodules in my lungs weren’t visible buuuuut there were two nodules in my left lung that had grown one to two millimeters despite all the chemo. (Side note, my oncologist let it slip just how dire things had been when I had to go back on chemo last June. Apparently there were up to eight tiny nodules in my left lung lower lobe back then! I was under the impression that there had only been six in both lungs combined!! My oncologist is wonderful at shielding me from horrible shadows and keeping me focused on concrete realities and where I need to put my energy. I would have been so disheartened if I’d known it was that bad!!!) So it was good and bad news. Chemo wasn’t working as well as we wanted it to. It was no longer keeping my cancer stable. Growth of cancer is never good news to me. One thing we know, is that my cancer is extraordinarily aggressive and the literature says colon cancer metastasis in the lungs are extraordinarily resistant to treatment. But what was good news, was that there were only two nodules to look at and the scan was definitive! A reminder that God hears your prayers and acts on your behalf is never a bad thing!

We made plans to talk to radiation oncologists and see if we can’t get radiation on these two nodules! The possibility of no more chemo for the time being and changing directions to radiation is so relieving and exciting! I was recently told that up to this point treatment has been pretty by the book, chemo, surgeries, more chemo. But we were branching off now into undiscovered territory. My age and the random genetics of my cancer makes this very unique. We don’t know what chemo will work, how aggressive do we go now at cost of depleting future reserves. If it wasn’t an adventure before, it sure is now. You better believe there’s more to this story!

Lots of quarantine handstand practice!

Cancer Free.

Where do I start? I mean, seriously. It’s like the last year and a half of my life has been a bad dream. Part of me always expected to wake up. So you can imagine, it’s been very strange to have the bad dream resolve itself and not to wake up. If the bad part of the dream is over, does that mean it isn’t a dream at all, or does that make the happy conclusion a dream too? It makes the whole cancer thing seem even more unreal. The entire thing is hard to conceptualize and even harder to communicate.

To put it plainly, the surgery was miraculous. The plan was never to make me cancer free. That wasn’t supposed to be possible. I remember waking up after surgery, very sluggish and blurry, to my parents and brothers next to my bed. There was a tangible excitement that was buzzing in the air, just over my head, outside my reach, beyond what I was able to understand and make sense of. My mom leaned over the bed and said softly “They got it all, Sweetie.” I frowned, internally I think, I’m not sure I had the control or energy to actually frown. I didn’t like my mom saying that to me because it couldn’t be true. The disease was too small in my lymph nodes, it was microscopic. I was almost irritated that she misspoke and my head was too foggy to figure out what she meant to say. But then she continued… “They got the whole chain!” She was very emotional, that much was plain, she was happy and tearful. “The chain?” I questioned groggily. Irritation and hope began wrestling over my heart. What chain? She didn’t mean… “The… ” my brain hiccuped. What was that word? The lymphatic chain, the one the radiation oncologist talked about and wanted to radiate as my best chance for a cure… “My lymph node chain? No way!” I slurred through my lazy post anesthesia fog. Thats all I remember. I fell back asleep? We talked of the cosmos? I don’t remember.

I woke up the next morning, half expecting to have dreamed what my mom said. Rational me didn’t want to talk about it, I’d wait for my surgeon to tell me himself. I wanted an official report, to be told more formally. “They got it all,” HA! The resident came in at some point that day, I’m sure it was the morning but in that post surgical haze chronological order barely exists. But I remember what he said with remarkable clarity. He talked about how the lung surgery went well, it was cancer they removed, but they got the whole nodule and the regional lymph nodes. Then Dr. Reeves and he got started. My intestines were amazing, there was barely any scar tissue. He wasn’t sure why, maybe my age, maybe my diet, maybe how fit I was, it didn’t really make sense taking into account the two previous surgeries. This made it easy for them to find my rectal stump and reattach my colon. I inwardly praised my intestines for handling surgery so well and thanked God because, lets be real, if it doesn’t makes sense to the doctors then it’s God. Then they went after the lymph node they missed during my first surgery. The one that was too risky to go after because of how close it was to my aorta and how little time they had. The resident said, “we wanted to go in up high, by your liver, since the lymph node is so high in your abdominal cavity it made sense to start high. We couldn’t, there was too much scar tissue by your liver from the first surgery. So we went in down by the colostomy. Now, this is where things get a little magical…” My eyes widened. He explained that because my intestines were still out of my abdomen it made my posterior retroperitoneal lymphatic chain very visible. He wasn’t sure why it was so visible but it was. “Im not sure how he does it, I sure can’t, but Dr. Reeves can tell when a lymph node has been treated versus a healthy lymph node. They don’t look any different to me, so I don’t know.” Basically my surgeon can somehow see with his eyes that a lymph node has dead cancer cells in it. But where there are dead cancer cells it only takes one cell to survive to cause a problem in the future, so even dead cancer cells indicate danger and need to be removed whenever possible. They took the whole chain out and whats even better is they were able to trace the chain up to where the peri-aortic lymph node was, the one they were looking for. They removed it without an extensive search. “So you’re pretty much cancer free. It was basically a miraculous surgery.” He concluded.

I burst into tears.

I was in no way expecting to hear that phrase. I was completely caught off guard. Later that day my surgeon, Dr. Reeves, came in and also told the same story. It was much more practical and grounded than the way the resident told it so I’m glad I heard the story from him first. I enjoyed hearing words like magic and miracle being thrown around. But my surgeon was beaming, not so much with pride but with joy, his own version of “magic” and “miracle”. He was so happy that he could do this for me.  His conclusion was better than the way the resident put it. He smiled down at me and said… “so we can say with certainty, you are cancer free.”

What a dream!

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.