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.