Chemo.

I woke up. I ate breakfast, sliced avocado, scrambled eggs with tomatoes and cheddar cheese, a slice of sourdough toast with appricot jam, and a slice of wheat toast (well Daves to be more specific) as a vessel for my eggs. Then we got things together and headed to my oncologist office. I was told I would have the private room for my first session so when it was offered to me by the receptionist I said yes and made myself at home. I walked past the three walled room with shoulder to shoulder arm chairs and empty IV poles. The private room had an exam table next to radiation machine and a sink, both of which were stacked with those fleece blankets that have the tied together fringe around the edges. They were real big college Christmas presents in the early 2000’s. There was a chair against the wall and a plastic reclining arm chair. Just outside the door is their phlebotomy chair where every chemo patient gets their labs checked before chemo. So I saw the parade of characters sit down and have their blood drawn. The chemo nurse, Lucene, was very nice and friendly. She took my blood relatively painlessly. She also complimented me on my port, recognizing the surgeon who put it in. “Oh yes, I would know his ports anywhere, so well placed, very clean, not a lot of bruising or swelling. It’s a good port.”

My oncologist came by and looked somewhat flustered, although always cheerful and confident. Apparently, over the weekend she was doing more research on adding a biologic chemo agent in case the genetic tests come back reporting that the tumor is sensitive to medication that biologically affect the tumor (attacking blood supply to the tumor, for example). But biological chemo in addition to standard chemo can make things too toxic, too much diarrhea (to the extent of hospitalization, for example). So if we need a biological chemo we would have to drop one of the standard chemo meds. The question this raises is what affects does that have on the tumors resistance or the efficacy of the their chemo meds without it. So she was on the phone all morning talking with specialists at UCI, City of Hope, USC, and the Mayo Clinic. Just because there isn’t anything published doesn’t mean that experiencially doctors don’t have a clue. But I’m a rare patient, the involvement of my liver, as I said before, is also a variable not taken into account during many studies. The goal of our treatment isn’t to irradicate the tumors it’s to get them to a point of resectability as quickly as possible so that too is a variable not accounted for in published studies.

Lucene came in and took the dressing off my fresh, sore, port. She brought out a weird looking thick needle with IV attachment and said’ “This goes into your port. This will hurt.” And basically jammed this needle through my skin into the aforementioned fresh, sore, port. In reality, I’m sure she just slid it into the port through my skin and did not jam it in there but I was still pretty sore. Then she flushed the line with heparin until blood showed up ensuring the line to my subclavian vein was clear. So I was hooked up to pre-chemo drips of anti-nausea medications while we wrestled with knowns and unknowns and weighed costs and benefits and swapped ideas with big deal doctors all over the place. What was amazing is that doctors were calling back my oncologist personally and discussing my case. Lucene came back in and slowed the last pre-chemo drip to allow for more time and to mix the chemo meds. There was a concensus, go with the four standard but aggressive colon cancer drugs. If we need to do a biologic in the future we can but for now let’s stick with what we know shrinks tumors fast and get me to surgery.

I haven’t decicded if it’s good or bad to have your first round of chemo be when you have a head cold. On the one hand, you feel like crap. You have the sore throat and head congestion that makes you feel groggy. On the other hand, do you feel like crap because of chemo? You can’t be sure. Are your cold symptoms just progressing or do you feel lightheaded and dizzy from chemo? There were definite chemo things happening to me like hot flashes (which are so weird! Like an instant fever coming from inside you, but my feet were freezing!) and what I fondly refer to as drunk eyes (they just can’t focus well and are slow to look from one side of the room to the other). Those are the most noteworthy, not, cold like symptoms I attribute to chemo. The rest? Who knows.

So the first drug, izotecan, hung there for two hours, making me loopy and groggy. Then the next two work in conjunction with each other, oxalyplatin and leukovorin, and are hung together, dripping at the same time over two hours. I was assured the next round would go faster. Lucene wasn’t sure how I would tolerate it so she had it drip slowly. The forth drug, 5-FU, was a pump that I would go home with which would deliver the medication over the next 48 hours. The pump was placed in a bag that I wore like a cross body purse and attached to a thin IV line still attached to my port. So basically I look like I have a small space station docked on my chest.

Hopefully we get the tests back on my tumor genes in the next couple of days. With my new cross body purse and space station on my chest I headed home. I had a super relaxing afternoon laying on my bed looking out open windows onto my backyard jungle. It wasn’t until 7pm my old friend the miserable intestinal cramping and corresponding symptoms vamped up. It was one of the worst nights I can remember 7/10 writhing moaning pain with a headache alllllll niiiiight. Goooooodness! It died down to a 4/10 by around 8 am. No nausea though so that’s great. I was instructed to keep ahead of nausea with Reglan and Zofran and keep on top of diarrhea with Imodium. Who knows how I will respond? I might even have latent fatigue and nausea show up four or five days after chemo.

I’m exhausted today, groggy, crampy, but overall doing well. I just needed a day to chill.

Ports.

I don’t really know what a “light” breakfast is. I assume it means no French toast, eggs Benedict, pancakes or bacon. I just had 2 pieces of sourdough toast and coffee to be safe. Then I went the whole day without anything. ANYTHING! Water, crackers, nothing. To make it better I started having a migraine. Could I take any excedrin? Imitrex? Tylenol? Nooooo. Just add dehydration to my migraine.

Got there on time for 3:30 pm “check in”. I had already registered the day before so there were less questions asked after sitting in the hospital gown in the gurney for an hour we asked for an update. Turns out my surgery wasn’t even scheduled till 5:30. They were literally trying to starve me. Of course they didn’t even come get me for the surgery till 6:15. I was almost dead and terribly irritable.

My OR nurse really saved the day for everyone. He says to me, “Your anesthesiologist is doing a clinical trial where he asks the patients where they would most like to go on vacation and then picture that place as they fall asleep and they go there! So love,” (he had a British accent) “where will you be going?” At first I was kind of annoyed but then I saw that he was just trying to make the whole thing easier and really wanted to relieve anxiety about it instead of just go through some humorous routine. I softened instantly. “Well Italy I guess, I always get torn between Europe and tropical destinations.” As he wheeled me down the hall into the OR he asked me why I wanted to go to Italy. I explained how it’s really about food, pasta bread and gelato kinda make life worth living. Each person who walked into the OR he would let them know, “Italy”.

Next thing I knew I woke up after the surgery with a painful spot on my chest where they made the incision and inserted the port.

The following morning I woke up in horrible pain with my meds spilled all over the floor and a miserable migraine making me throw up. Enter, hero and legend Tom Pike. My mom was speaking at a women’s retreat in lake arrowhead. I couldn’t even get out of bed, all I could think to do was cry. My father came and saved the day! Iced coffee, banana bread and prescription migraine medication in tow. He read to me, kept me company until I felt better, and helped me with several small projects around the house. It turned a very miserable morning into a quite a pleasant day. I’m really really the luckiest girl in the world, except for the cancer thing. I have a dad who doesn’t just love me, he sees me and understands me. Not many girls can say that!

Treatment plans.

One thing that’s fun, is surprising healthcare professionals. “Are you sure you’re the patient?” “What’s you’re diagnosis? What studies/procedures did they do?” “You had bleeding for months? But you don’t look pale. Let’s see your labs, oh, you’re not anemic.” “You have tumors in your liver? But your liver enzymes are normal, that’s good.” “Have you lost weight? Look at those arms! You look so healthy.” Then there’s that surprised sadness where they just look at you, stunned. But then they snap back into doctor/radiology tech/nurse/administrator mode and finish taking my history/X-ray/blood/paperwork, what have you.

I had a similar conversation with the surgeon who would put in my chemo port. He was shocked I had colon and liver cancer, shocked I didn’t have more symptoms, shocked I was so fit, but of course, I obviously lifted weights. When I asked about exercise, which I’ve learned means something different than when normal patients ask. Crossfit puts you on a different scale as far as activity levels go. They always assent, exercise, of course, but they always follow up with walking as suggested exercise. “No, no I’m a weightlifter. I do high intensity rigorous exercise”, I explain. Basically, my surgeon said, no, don’t lift anything heavy for two weeks and don’t sweat until after the wound heals. Great. But he showed me the “port”, a fifty cent piece sized plastic looking thing that can be injected with needles on one side and block needles with a metal backing on the other side. It has a thin tube catheter, that gets inserted into my subclavian vein. It will be inserted under my skin on my chest. I’m not sure how this is going to really work or look practically but at least everything I’m explained makes sense in theory.

Before I leave his office I’m told I’ve been scheduled for surgery the following day and could I please get there at 3:30 pm. “Oh honey, we’re sorry it’s so late you can’t eat all day!! But we’re just able to squeeze you in at the end of his day in the OR,” the sweet receptionist instructs me. The smile fell off my face. “You can do a light breakfast no later than 7 am.” This cancer is going to starve me into a tizzy of frustration. Then I go do pre-op things. More of the sad, shocked stare. (Which I should say doesn’t bother me at all! So if you’ve given me that look or want to it’s fine! I find it amusing [sorry].) I give my history, get more blood drawn, get a chest X-ray, and get an EKG, with lots of waiting in between, all of which took about 3 hours. Everyone was very nice, compassionate and concerned. Then I headed over to my oncologist for my scan results and to talk about Mondays chemo.

I won’t hold you in suspense, my PET scan showed my colon tumor, and my poor liver lit up like crazy, but my lungs and brain and everywhere else was clear. I tapped into the secret doctor network (aka got a text from my Aunt Alice who had called my oncologist earlier) and heard in the waiting room of the surgeons office my PET scan results. What a relief! Again, if I’d had other cancer my chemo regimen would have been the same but it sure makes you feel better about all of it. I sent a million texts just so other people could feel relief too.

In all honesty, after talking to my mom that one night in NYC after the wedding, I stopped worrying about more cancer. I put a wall up in my mind and heart. So I wasn’t that relieved. I was so focused on doing chemo and fighting the cancer I did know about. But it meant a lot to my family and close friends. Sometimes I think it’s easier for me, having cancer. I’m fairly sure it’s been much harder for my family and friends.

My oncologist went over my chemo regimen with me. The results from the genetics of my colon tumor still aren’t back yet. That’s been frustrating. My understanding is that there are two ways a tumor can develop in my colon. One way, is if I’m missing some kind of gene and as a result, abnormal cell growth occurs and wam bam tumor. The other way is a gene gets mutated and abnormal cell growth occurs and wam bam tumor. When it gets tricky is if the tumor is smart. A normal immune system says “Hey! Abnormal cell growth! Kill it!!” and takes out the tumor before it’s even a tumor. But a smart tumor produces proteins that either repel or prevent the immune system from doing its job and it continues along its merry growing way. This is important information when deciding what chemo medications to chose. Because some tumors respond better to immunotherapy that get the tumor to stop producing that protein and allow the immune system to do its job. Other tumors respond to the kill ’em all approach. I forget which is which and which acronym goes with which type but the genetic tests will tell me what kind of tumor it is and which type of chemo will kill it. The good news for me is there’s a lot of overlap and I can always start off with some chemo mess and add or change it the next session.

So at this point the plan is to go with the standard three colon cancer chemo medications and add in another one the next session depending on the dumb genetic tests. The main side effects of my chemo were gone over in detail, mucositis, neutropenia, and neuropathy. Blur your eyes, delicate ones… Mucositis will cause diarrhea, my new favorite pastime, my mouth to feel like I have cold sores, and my nose to bleed. Basically any surface lined with mucosa (nose, mouth, throat… well, digestive tract really) is going to be sensitive and upset. Neutropenia, or a drop in my white blood cells, basically means that my immune system will take a vacation. And neuropathy means I’ll get a tingling in my hands and feet that can develop to weakness if I don’t decrease my chemo dose. So basically monitor the numbness and report back accordingly, don’t drink or touch anything cold, don’t eat or drink anything hot or cold. How annoying.

Next stop starving followed by chemo port placement.

Scans.

Again, “please don’t eat or drink for 6 hours before the procedure.”

“But the test is at 11 sooooo….”

“You can have two hard boiled eggs at 5am.”

“Gee. Thanks.”

Something about being told no eating or drinking makes you ten times hungrier and thirstier. Knowing myself and the hungry panick I set my alarm for 5 am and fell asleep with two hard boiled eggs next to my bed. Have you ever tried to eat hard boiled eggs half asleep in the middle of the night? It was hard. And I still woke up later hungry anyway.

My wonderful faithful Aunty Robin drove to the scan again. I found out once I got there that my insurance had denied the chest CT so st least I didn’t have to drink more banana chalky barium liquid. But if the full body PET scan found any suspicious mets in my lungs there wouldn’t be any clear imaging to look at. Like I said, after the liver the metastasis head to the lungs. But I had peace about it, I was no longer worried about them.

The radiology tech took me into a room with nuclear hazard sticker on the door and sat me down in a comfy chair and gave me a blanket. He put in the IV and then went to get the radioactive isotopes that would be injected into my blood stream. He returned with a shiny, frosty metal canister with radioactive warning stickers all over it. Suddenly I was in a science fiction movie apparently. He twisted off the lid and I half expected a suction sound and fog to billow out of the top. But there wasn’t. He pulled out a smaller metal cillinder and this contained the isotope. I like how all this metal shielded him from coming in contact with the isotope that was being injected into my bloodstream. Then he closed the door. Apparently I would wait an hour for it to travel everywhere and then they would scan me. “No reading, no phones, no tv.” But he did bring me a glass of ice water. After which, he closed the door and I took a nap.

I woke up as he opened the door. I was instructed to use the bathroom and then head down the hall to the left. Good thing he gave me that miniature glass of ice water. Still dazed from my nap (I hate naps for this exact reason,) I lumbered down the hall where I found him and he helped me lay on the… mat? bed? plinth? Slightly cushioned table? I don’t know what you call it, the surface that would slide in and out of the scanner intermittently. He then covered me with warm blankets and literally strapped me to bed and instructed me on the importance of not moving. I fell asleep again but woke up every time the bed slid forward or backwards to scan a different part of my body.

Afterwards I had a little bit of a sleep hangover but was soooo ready to eat. And guess what!? National Taco Day! Because I did the PET scan at The hospital where I work in East LA I only had to chose my favorite out of like 10 choices. Naturally I went with, Guisados, voted LAs best tacos and right down the street! I ordered more than my regular amount of tacos, a pescado, a camarones, a quesadilla, and my personal favorite chuleta. Their masa tortillas never disappoint. Aside from, what I later termed my radioactive hangover, I was in heaven.

At around 5pm I got a call from my oncologist office. I thought it was to confirm my appointment tomorrow afternoon. Instead, it was to see if I could make a 9 am appointment with the surgeon who would put in my chemo port.”he only sees patients on mondays but has agreed to squeeze you in between surgeries tomorrow. And he will probably want to do the surgery on Friday so you can have it for chemo Monday.” Well ok sure. I’ll just let my boss know that I was only kidding about working Thursday morning before my oncology appointment and on Friday before being off for chemo. The good news is my work is amazing and flexible with me about when I can work.

I had no idea how tired the San and the radioactive isotope would make me. I felt lethargic and sleepy the rest of the afternoon. I almost didn’t go to Crossfit that night but I knew that I would feel better after I moved. It’s my rule, when I least feel like going to Crossfit is when I need to go in the most. Plus, who knows how I’m going to feel in the next couple weeks after I start chemo? It was a good workout that night, the strength component was a barbell complex, 3 jerks and 1 split jerk. It felt so good! I threw up 135 lbs and tied for top spot on the leaderboard. What radioactive hangover? The metcon was a nasty 21 minute EMOM, the type of EMOM where you’re like ok not bad but then you’re dead. Minute 1: 35 double unders, minute 2: 10 strict toes to bar, and minute 3: 14 dumbbell step ups and then repeat until you reach 21 minutes. It’s important to know I have roughly 3 most hated movement in Crossfit, double unders, bar muscle ups and most of all toes to bar. Basically what this means for me is it transforms the workout from a physical push to a mental push. And I almost broke mentally, as tired as I was. But I finished all the reps and then in true form died on the gym floor at the end.

Live to fight another day.

Second Opinions.

The secret doctor network is amazing. A close family friend, also a doctor, knows someone who works with clinical trials at City of Hope. She helped get me an appointment with their top colon cancer oncologist. He agreed to see me as a consult, look over my labs, scans, and colonoscopy results and make recommendations as to my care. We had some questions about whether clinical trials would be beneficial and what chemo regiment he would recommend.

It’s important to understand what a clinical trial is and how it could benefit me. This was my first question before I even considered talking about clinical trials. The simplified explanation is that it is a chemo treatment that has been proven to be effective with certain cancers but hasn’t been around long enough to be approved by the FDA so they’re still researching its effects on humans. So its basically new chemo that’s theoretically better or more effective than whats on the market now. The problem is my tumor is rare, my age precludes me from most studies, and my liver lesions are another problem as most studies only want to look at colon cancer in isolation.

Are there any clinical trials I qualify for? There is one possibility, but it depends on the genetic testing results of my tumor. However, the chemo in the clinical trial at this point is not more effective than standard chemo treatments. So it was recommended by this specialist to go with a standard chemo trifecta that has been known to shrink tumors 50-70% after 3 months. What’s good news, is that this is the plan for chemo that my oncologist already has on the books.

The other thing that was recommended is that when it comes time for surgery, I have it at City of Hope. They apparently have the most qualified and experienced liver surgeons in the area. Apparently excellent liver surgeons are hard to come by and the most pivotal component of my treatment. So there’s lots to discuss with my oncologist on Thursday.

Tomorrow I head to my PET and chest CT scan. At 5 am I wake up to eat 2 hard boiled eggs and then no food or drink till after the tests. I hate starving, and this whole “nothing by mouth for 6 hours before the scans” is sure to do it. For future surgery purposes, we need to know where all the cancer is. At this point, based on the scans we have, the cancer is isolated to my liver and colon, however, it’s very possible there could be malignant nodules in my lungs or in the lymphatic system around my colon and liver. The good news is it wont affect my chemo but it may affect the future surgery.

No more surprises please body. Thanks.

Weddings.

Not having surgery last week faired really well for me. I got to eat that glorious sourdough bread, go to Crossfit but probably more importantly I got to fly to New York for a friends wedding. Two of my best friends live on the east coast. Both of them were considering flying out to see me but how much more convenient for us all that I already had a plane ticket to NYC. Granted I had to move up my return flight to accommodate doctors appointments, lab draws, and scans but still it was important for me to see their faces and squeeze them.
I was picked up from JFK by two friends and a pizza in the back seat. Things couldn’t have gone smoother. We had a lazy Saturday morning in my friends apartment talking and sharing our hearts and random stories from our lives. We got ready for the wedding and took the drive to upstate New York. It was beautiful. The wedding ceremony was actually really enjoyable and authentic, which, let’s face it is rare. The speaker spoke of the Lords timing. Of course, completely irrelevant to my circumstances. I teared up kind of a lot.
It was so wonderful to be there and witness something amazing that God had done bringing this couple together. But again there was amazing support in the prayers and the hugs of yet a different community. I’ve been visiting my friends in NYC for the past 7 years dipping in and out of her life, the lives of her friends and the lives of the people in her small close knit church. So when they got the news they were pretty heavy hearted. But we’re supporting me in prayer and sending me love. So in part, I came out to New York with the intention of encouraging them, letting them see my face and know that I had a peace. My peace is like a banner I wave. Yeah, I have cancer but I have peace because I know that no matter what happens my God will make good come out of it. I want every one to know that. But I escpecially want people who are praying for me to know it.
I caught up with so many friends and updated friends that didn’t know. I can’t lie to people I know who genuinely care and say to me how are you what’s new? Suddenly cancer isn’t just what’s in my head and in the background but it’s all I’m talking about. A lot of people already knew and they broached the subject warily as though talking about it would make me cry or they would damage some delicate resolve I had. They talked about it as though they were afraid for me. Many were sorry I had to go through it. There were lots of tears. But I felt like a majority of them walked away feeling better about it and with a touch of my peace and hope. I was able to make contact with a friend who is a radiation doctor for liver and rectal cancer. I was kind of excited to ask a lot of questions I’ve been somewhat scared to ask. He sees patients in more dire straights than me so he had some good perspectives for me. But I could see this undercurrent of fear in things he said.
I’m sure it isn’t fear in the sense of they’re literally afraid. But it was more of a universal undercurrent of fear. I’ve spoken before of feeling hunted by a spirit of fear. While I feel tons of peace, it’s not without a fight. I told you how I’m not letting myself think about the “what if’s”. I’m staying present. My community gets it. They want updates but no one is sprinting into worst case senarios. These people are not my people, they aren’t part of my community. They’re not on the same emotional page as I am and I could see fear and pity on everyone’s face. It was exhausting and unnerving. But it was more the undercurrent, this spirit of fear that wanted to get my attention. Don’t dismiss it soon enough and it’s like opening the door a crack and then it gets blocked open and a flood comes in. And you’re overwhelmed.
Well that kinda happened. Suddenly, I was freaked out about my scans coming up. Maybe they would find nodules in my lungs. Maybe it would be in my lymph nodes or maybe the chemo wouldn’t work. Maybe it would spread. Maybe I would need to have chemo and surgery for years and years. Maybe I’d get rid of it and it would come back worse and I’d have to start everything again. Luckily for me, I can call my mom. She made me promise right away I wouldn’t hide my fears or dark thought to protect her. So when the anxiety started to choke me because I was exhausted from smiling and dancing and drinking like a million liters of water I called my mom.
Interlude. As I was about to board the plane to JFK my oncologist called me to say my creatinine was high. Also known as, I wasn’t hydrating enough. Also known as, I was stressing out my kidneys. Also known as, if I didn’t start seriously flushing my kidneys I woulnt be able to take the contrast. Also known as, I wouldn’t be able to get a CT of my chest next week. Also known as, I’d have to wait to make sure I don’t have more cancer. So I’m supposed to be drinking 3-4 liters of water everyday. How is this not killing my kidneys? I have to pee like a million and a half times a day. I hate it.
Back to the story at hand. My mom is the most amazing woman on this side of the planet. Everyone says so. So I called her and told her how I was feeling. Maybe I kinda started crying, but she didn’t crumble along with me. It was like my words fortified something inside her. She said nothing of pity, nothing of agreement, she told me I’d lost perspective. “You’re not in a fight against cancer. You’re in a fight for you’re heart.” Man my mom knows me. I was able to slam the door on fear. Kick the spirit of fear to the curb. I am so deeply loved by my God and He only has good things for this. I’d lost sight of that. Fear gets you all blurry. But my mom cut through it. Moms are the best.
I’m on my flight home to LA. At crossfit that night, I missed Weight lifting and I missed all the squats in the regular wod. Hate hate hate that. My wod BFF text me though that she’s going to have wrist surgery and wants to test out PRs of all her lifts yessssssssssss!!!!!!!! Super stoked for that.

Oncologists.

I went to work the following day craving normalcy. Work never felt so good. I was happy to be at work for the first time in years. Happy to walk the halls of the hospital. Happy to greet and be greeted by tired fussy nurses and doctors. It actually felt good to care for my patients. I had more patience for their hesitation, their confusion, their pain and complaints, their resistance to participate even.
I left work early to go and meet with an oncologist at our nearby sister hospital. I told myself if I didn’t like her I could find someone else at my hospital. Especially since her name was Ami. It wasn’t Amy, but still it was my name and I have a thing about people with my same name. Generally, the joke goes something about me needing to kill them because there can only be one of us. The joke never lands the way I want.

Dr. Ami Patel is wonderful. She’s smart, patient, compassionate, listens and I can tell she genuinely cares about her patients. She made it clear she read over all the results in my chart and clarified things with her senior and was well prepared to explain everything. She clearly thinks outside the box and is willing to fight for the best care of her patients. She spent two hours with me. She was patient and thorough and went into even more detail than I needed. My head had trouble tracking everything. At times things would start to buzz or blur but I focused and always came back seconds later. I don’t think I missed much. My wonderful patient mother was with me writing notes and asking questions. Filtering and processing everything I couldn’t. Will you be our quarterback we asked? “Absolutely! Yes I will be your quarterback,” she replied smiling. My mother and I both teared up once we reached the hall outside her office.
The plan was get some test results back from the biopsies of my tumor, you know, genetic stuff which chemo will work and what kind of genetic defect is causing it (or something). The truth is that this was the part of the conversation where the buzzing was happening and I was calling myself back to the movement of her lips and demanding that my brain focus and process on what was being said. But I knew that I would have to wait on the results of the genetic tests and I needed a CT of my chest and PET scan of my whole body. Nobody likes a surprise tumor.
In the meantime, I updated people. Lots more phone calls. My Crossfit box made a Facebook post and texts and Facebook messages, of the most encouraging, supportive, and heartwarming nature started flooding in. At work I informed my department and found out that not only did I have amazing community at Crossfit but all the “work is family” talk was genuine. Let’s just say nothing makes people cry quite like cancer. Overwhelmed all over again. And again. And again.

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.

First blog post

I’m a little long winded when it comes to posts. I process through writing. I’m emotionally compartmenalized and this blog is going to help me process and provide a venue, if you will, to share my story (so I don’t have to say it a million times). I really love my life and I think as I share parts of it here you’ll enjoy my life too.