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!

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!

Waaaait… cancer?

My name is Amy. I am a physical therapist and a CrossFit athlete and yesterday I got diagnosed with colon cancer. It’s pretty crazy, very surreal, and so absurd I keep laughing and shaking my head. I’m 32 years old. I’m in the best shape of my life, the healthiest and strongest I’ve ever been and somehow I have cancer?

Heres the back story, if you’re squeamish just squint your eyes and blur the words on the page.

About 6 months ago I started noticing blood in the toilet after I’d poop. I’m in healthcare. I’ve worked for the past 8 years as a physical therapist in a hospital. I see patients who are the sickest of the sick, after a stroke, a heart attach, surgery, comas, in ICU, med/surg and telemetry. So I’m no stranger to illness, blood, vomit, drool, or wiping other people’s butts. I work closely with an amazing staff of nurses and doctors and surgeons. I read all their notes in detail, and beyond what I learned in college and graduate school have learned a lot about the human body and what it looks like when things go wrong.
I know it’s the dark poop that’s bad, the “tarry” stool, the “coffee ground” stool. That kind of blood means there’s a bleed somewhere in your upper digestive track. Bleed too much and you get anemia and hypovolemic shock. I’ve seen it at work plenty of times, gotten it smeared all over my gloves even. I know that red blood is much lower in your GI (gastro intestinal) track, no serious risk of anemia, most of the time it’s hemorrhoid or an anal or external cut. So when I started seeing red blood on the toilet paper and in the toilet bowl I shrugged my shoulders and flushed. “Ugh weightlifting,” I thought. Probably hemorrhoid from all the straining I do under a heavy barbell in Crossfit.

I started Crossfit 3 and a half years ago. I’m one of those people who had a gym membership for a year and went 5 times. I hate and cringe at the word exercise much less do it. I tell people that if I’d heard about Crossfit or known what it was when I started there’s no way I would have joined. The hype would have scared me away for sure. But instead I walked in, out of shape but with a strong athletic background, totally clueless. The intense workouts, where I could compete against myself, drew me in. I told everyone, I was doing Crossfit so that I could eat whatever I wanted. I explained to skeptics that I was sipping the koolaid with my eyes open. Then my competitive edge and semi perfectionist tendencies collided with weightlifting and intense workouts and this amazing community of people (I know everyone says that but it’s truuuuuue!) and I was hooked. I got addicted to the satisfaction of finishing workouts that seemed impossible, getting stronger, and my personality and character being challenged and stretched. I started doing extra training and joined the weightlifting club and doing competitions and all of a sudden fitness was a passion. I started eating clean because my crappy eat whatever I wanted diet wasn’t fueling my workouts and I kept feeling dizzy or hungover.
So all I knew about fitness and health and the human body said occasional blood was no big deal. When it got more consistent instead of resolving I went to see my primary doctor who agreed that it was probably hemrrhoids. But the bleeding continued and increased in frequency even. Then my low back started aching at night when I would lay down. I tried stretching it, rolling it out with a foam roller, digging my fist into the muscles at the small of my back. There was no relief and I also couldn’t reproduce my ache. “I know, I strained my psoas somehow!” But stretching and smashing my psoas didn’t help or reproduce the ache. It was diffused through my lower abdomen too and that’s when I realized “Man these are intestinal cramps!!”
Its important to interject here, and again, blur your vision sensitive ones, intestinal cramps are no stranger to me. I’ve had IBS (irritable bowel syndrome) since I was a kid. ” I carry my stress in my bowels” I always say. Before school plays, soccer games, midterms, finals, diarrhea was the norm. Granted, these cramps felt different but still that’s what they were. They started waking me up in the middle of the night a couple times a week. I don’t remember when the mucous started but my 5x a night trips to the bathroom went from stool to just blood and mucus. I was moving, starting a physical therapy business out of my Crossfit gym, I was pretty stressed. Things slowed down but my bowels didn’t. I went on vacation with my family even and it went from a couple nights a week to every night of the night of the week and during the day too. There were days when I would make 15 plus trips to the bathroom and 5-10 times a night. This was obviously not my normal IBS. Google said it was ulcerative colitis or Crohn’s disease. Both of which are lifelong diagnosis requiring medications. From my perspective there was just no way. As things kept getting worse I had made an appointment to see a GI specialist. I wasn’t losing weight, my appetite wasn’t affected, my symptoms didn’t change with diet changes, I was competing in Crossfit competitions and PR’ing my WL (weight lifting). It couldn’t be anything that bad.
After 9 weeks of consistent aforementioned symptoms, I got in to see the GI doctor. After describing my symptoms and answering his questions he took me through his line of reasoning as to what could be going on. Bacterial or viral infection could be ruled out by the duration of my symptoms. Food allergy could be ruled out by the presence of blood. Ulcerative colitis was the most probable diagnosis because it matched all the symptoms. The colitis, or inflammation of the colon, causes diarrhea because the colon is too inflamed to absorb water. The ulcers or lesions often bleed and secrete mucous. Both can cause pain and intestinal spasms. No one knows what causes it, generally an autoimmune response treatable with medication but not curable. It can only be diagnosed with a colonoscopy, biopsies are taken of the ulcers and a pathologist diagnoses the lesions and the appropriate medication is prescribed based on these results. So a colonoscopy was scheduled 3 days later.
download It’s important for you to understand how much I love food. I would say CrossFit has made this worse. When I get hungry or get that hollow stomach feeling, I get what I call the hungry panic. So you can only imagine how miserable I was during the pre colonoscopy liquid diet… it was AWFUL!! I loved getting my wisdom teeth out, that kind of diet is my jam! Jello, ice cream, chocolate pudding, smoothies, send it my way. But a clear liquid diet?! Almost as bad a the dread “colonoscopy prep”. I decided to go to work, per usual, staying home would just drive me crazy. At least if I’m seeing patients I’m distracted. I was counting on free jello and sympathetic coworkers. I wasn’t counting on the cafeteria to be out of jello. Instead I had to eat these citrus flavored gelatins they give to patients on a clear liquid diet. So by the time I got done with my work day I was low energy and definitely had the hungry panic. I had made myself a vat of lime jello the night before and thank God I did. I ate half of it in 5 minutes. That helped but my stomach knew it was fake. I just wanted carbs, crackers, toast, anything. Instead I got to start drinking the “prep”.
For a colonoscopy you can’t have your intestines with any “stool” in there obstructing vision so they flush it out of you with medication. This medication comes in a gallon and you have to drink all of it, one cup at a time every 15 minutes. It’s best chilled and over ice. I discovered it was also preferred with ginger ale, like a bad cocktail. In fact, if I pretended I was back in college and needing to chug light beer it also made it more bearable.
The next morning I headed into my colonoscopy. Pretty uneventful. What wasn’t uneventful was WAKING UP IN THE MIDDLE OF MY COLONOSCOPY!!!
Here’s where you have to know that I am a Christian. But not a religious Christian. What’s the point of that? I believe in a relationship with the Creator of the universe that gives me hope that I am never alone and faith that I am deeply loved in the darkest dingiest corners of my heart and that most importantly, nothing in my life is too trivial to go unnoticed or too big to be unmanageable. (Run-on sentence much?) So I think I woke up in the middle of my colonoscopy and remembered it because of what I saw. It’s important to understand the set up of a colonoscopy. You lay on your side and the doctors and nurses and nurses are behind you with the screen projecting what the scope is seeing in front of them… also known as in front of my face. But I’m knocked out, “conscious sedation” they call it. Until I’m not. I have 3 thoughts as I wake up…

“So this is what it feels like having a scope in my intestines.”
I hear the word “mass” being discussed amongst the doctor and nurses, “Aww bummer.”
As I look at the screen in front of my face and see the tumor taking over my colon “Oh dear, that’s cancer.”

Then I’m somehow back asleep. When I wake up I laugh and tell the nurse about how I woke up and saw the mass but it must have been a weird dream. She’s very guarded in her response and just tells me that I should wait for the Doctor who will go over all the results with me. I was concerned that she didn’t laugh with me and dismiss it. “Oh shoot. It was true then,” I think. When the doctor does come in he’s also guarded, “Surprisingly, we found a mass. Based on the size and appearance I’m 99% sure it’s cancer. ” “Oh.”
I know that the only reason I believed him and was able to process what he said is because I had woken up and seen it with my own eyes. It’s beyond crazy that I woke up and beyond crazy that I remember it since one of the side effects of conscious sedation is amnesia. I’d say that’s a lot of coincidences to not be specifically designed for my benefit.
What’s even more strange is my disordinate amount of peace. How on earth do people who don’t know Jesus and believe that He can bring good out of even the most grueling situation and circumstances get through it!? I am actively choosing not to let my mind wander to “what-ifs” and places where fear rules the day. I am staying present and only taking on what I need to take on today.
images I get a CT scan tomorrow to make sure I don’t have more tumors and in 3 days I meet with a colo-rectal specialist. Then I will have a lot of my questions answered as far as recovery times, surgery recommendations and treatment.
I know this was long winded but it’s a lot to take in, a lot to process, and a lot of backstory. But this is only the beginning.