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.

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!