Chemo round two. I’m a little more prepared, able to anticipate better, overall sitting better mentally because I know what to expect. I headed to the lab draw chair straight away, gave ’em some blood. I sat down in one of the pleather recliners and pretended to get comfortable. I took my deep breath as the port needle went in. They gave me the “pre-chemo” drugs, an hour long IV infusion of antinausea meds. Once the chemo drip started my oncologist came in beaming. “So good news, your tumor markers are down!” Initially, she thought they had decreased 50% but she got a couple of her numbers mixed up. 

Let’s talk about tumor markers for a second. I, for one, didn’t really know what it was. For example, it’s not something that marks the size of your tumor and when it’s down your tumors have shrunk. It doesn’t say anything about the size of your tumor at all. Basically it’s a way of monitoring the effectiveness of treatment. Cancer cells can produce a certain protein into your blood stream. So if you measure this protein through blood tests the extent of its presence can speak to the extent of the cancer cells that produce it. The particular protein they are measuring in regards to colon cancer is called CEA (carcinoembryonic antigen). A normal value is less than 5 nanograms per microliter (a very tangible and useful measurement, I know). Before I started chemo my blood was saying that protein was 442. Oh hello, yes that’s high. (Thanks so much liver for taking this whole metastatic thing and really running away with it. But to be fair also thanks for doing such a great job and functioning at 100% even though only 30% of you doesn’t have tumors. Please keep up the good work!). The good news is after only one round of chemo, it dropped to like 293. Yes, that’s a huge drop for only one round of chemo! What does this mean? Practically, this means that cancer cells aren’t able to produce as much of that protein. What I can confidently say is my blood test results indicate chemo is working very effectively on my cancer. 

So that’s pretty good news to get as the chemo symptoms start drifting into play. Like I said, I was paying attention and ready for them. The lightheadedness, the grogginess, the hot flashes, the cramping, the headaches all showed up again during the six hour chemo infusion. I expected the fatigue and nausea to follow me like a cloud as I left the oncologist office. I know I was told, “nothing cold”, that if I ate or drank cold I would get a spasm of my throat that would make me choke. But milk shakes are just one of my favorite things and I wanted one. So we went straight to Chick-fil-A from the oncologist office. I tested out my tolerance to cold with some ice water. It. Was. Crazy weird. It felt like I had something stuck in my throat all of a sudden. Then I drank room temperature water and it was normal! There was nothing in my throat! It was my throat muscles spasming with cold and my tongue feeling extra cold and also food tasting weird. I thought the symptoms were made up, so weird, sensitivity to cold. But it’s real. Later I developed horrible heart burn that stuck around for four days. But I was feeling pretty skeptical of the fact that my intestines were mostly mute all week. No cramping, no diarrhea. During round one of chemo this was the symptom that made me the most miserable from post chemo day three through five. During round two, day three to five and I was needing long naps in the afternoon but my intestines were just doing normal cramping things not post chemo cramping. I was beginning to think this whole chemo thing was really going to be ok. I did the noon wod on Friday because I could battle fatigue ok, it was the cramping that knocks me down and makes exercise impossible. 

This is a Crossfit paragraph, consider yourself warned. The workout that day was perfect, nothing for time, emphasis on quality and unilateral stability (A: 2 rounds of 10 DB step ups, 30 sec hand stand hold; B: 3 rounds of 6 RDLs, 12 KB front rack lunges, 10 barbell rollouts). I super scaled the weight but did all the movements, parts of it as prescribed… during chemo week!! It was a big deal. The fatigue thing was tough to deal with though. It’s not like normal fatigue. My strength is still there so during the movements I’m fine, they feel good, but after the movement or between sets is where I feel so unlike myself. I get super lightheaded and nauseous and feel my heart racing. It’s ridiculous, I only did six slow paced RDLS at 65# a super scale, why should I feel lightheaded? This is super challenging for me because I’ve been conditioning myself for three years to push past fatigue and pain, to enjoy it even. All of a sudden it’s disproportionate to my efforts and recovery is impossible. That’s what it is, it’s not a matter of fatigue it’s that I can’t recover. Let’s call chemo a recovery depressant. 

Then on day six, Saturday, the cramping started, bad cramping. I had a dream once where I explained to someone my one to ten pain scale. Zero is no pain, ten is I should be in the hospital, five is the threshold for writhing, if I can have pain but lay still it’s a five, six I need to writhe, seven includes occasional moans, eight, its past writhing to paralyzingly, nine, I start crying uncontrollably. Saturday morning started out at five. But I used round one day six data to determine how my day would go, things start looking up! But I should have looked at day six round two as new data. I went to work out anyway. The owner of my Crossfit gym and coach watched how slowly I was moving between movements and cut me off three quarters of the way through the WOD. That was tough, mentally, my heart loves to finish hard workouts. But I knew he was right. I had a lot I wanted to do that day so it would be worth it to not use all my days energy on a workout. But I get so sad!!

I was expecting to feel better as the day went on and I rested. Lucky me, instead things got worse. The cramping  was an eight, that took my breath away and kept me from moving… for hours! Praise God for college football and brothers who come up from San Diego just to lay with you on the couch. Later in the day I went home to shower but was trapped on my couch with body wracking spasms, these were new. I finally just manned up and got in the shower, the hot water helped and I even pulled myself together enough to make it to my Crossfit Halloween party (after resting up and watching the World Series of course!).  

I think sometimes the narrative for my life sounds more dismal than it really is. But here’s my takeaway, overall, round two was better than round one!! Tumor markers are down, my immune system is doing great, my kidneys are doing fine, and my doctor is pleased. I had less diarrhea and cramping which meant I was taking less medications and could do more. I do have new medications to add to the pharmacy I carry around in my purse but I’m managing them all better. I’m learning what my symptoms are, how to manage them, and what I can and can’t do. My heart is still peaceful and I’m still unafraid of things to come, I’m upheld and shielded by an army of prayers. 

(Somehow I just found this post in my drafts. It never got published but is such an important piece of the story!! I’m a little irritated at myself. And it’s going to be out of order ruining everything! GREAT!!!)

Insert between posts “Wait…I have cancer?” and “Oncologists.”

At this point the plan was, surgery Tuesday, five days after my colonoscopy and discovering the tumor. Straightforward plan, eiminate the obstruction, get the tumor out, heal, get back to CrossFit and life. 

The day after my colonoscopy, I had a CT scan of my abdomen and pelvis. So after a painful night with lots of aching and cramping I woke up in time to scarf down a little food because, again, these doctors were trying to starve me… no food or drink for 6 hours before the procedure, not scheduled till 3:30 that afternoon. Another day of no food, but today, also no fluid. The worst. 

My best friend, Mary, my aunt Robin came with me to keep me company and entertained. I showed up, checked in and waited, because of course, things were behind schedule. After about 30 minutes I was given the barium, a chalky milky beverage to drink, to make sure the contrast reveals what it’s supposed to. The tech brought me out banana flavor. I barely like bananas. Only when there’s a little green on the stem and no spots am I even interested in eating them. A freckled banana just tastes too much like a banana for my taste, and artificially flavored banana? Gag. But after ruining ginger ale with golytely for the colonoscopy prep I wasn’t about to ruin a flavor I actually liked. The stuff wasn’t that bad. It tasted like the outer shell of banana flavored runts. That plasticy, chemically, overly sweet taste. I chugged it as best I could. The CT went on without a hitch and I made sure to get the disc of the imaging for the specialist I would see Monday. 

What specialist, you might ask. It’s important to understand how incredible my family is. My aunt is a breast cancer surgeon. Whenever someone in the family gets sick or something in their health goes wrong she snaps into action and taps into, what we affectionately term, the Secret Doctor Network. She had contacted a colo/rectal specialist who had agreed to see me as a consult on Monday. 

I had a great weekend tinged with sadness. I’m not a phone person. For years I’ve said I’m allergic to talking on the phone. Texting and email I can do. I hate the notifications though so I keep my phone on silent. Not on vibrate. Silent. But I have a massive life. It’s almost too big for me. I love a lot of people and they are important to me. Community is important to me and I know that as much as this cancer broke my heart my communities and people I love would take it hard. So I was one my phone a lot, calling people, texting people. It was important to me that people hear it from me, hear the hope and the peace in my voice or see it in my face. I have a strong bias toward people pleasing. I want people to be happy. Making people cry and sad was really hard for me. And I was filling my weekend with inflicting disappointment, shock, and sadness all over people I love. But because I love deeply I am loved even deeper. The response and support I received has been overwhelming. Entirely overwhelming. Heartbreakingly, undeserved, disproportionately overwhelming. I wouldn’t be able to keep my head up without it. 

My favorite story to sums up how people took the news happened Saturday morning. I attended my best friends bridal shower. Near the end of the shower the bridesmaids were summoned for pictures. As I walk towards the gathering group, the bride to be spots me and we make eye contact. Immediately her eyes well with tears and she mouths the words “I’m so emotional!” I rush towards her and hug her and assure her “I’m doing good. Good will come from this”! But it’s too late, she’s crying. The bridesmaids assemble on either side of her following the multiple photographers instructions and it takes a while before anyone notices that I’m not following instructions and that the bride to be is crying. Then the questions start, “what’s going on?” ” whys she crying?”. The bride looks at me tears streaming down her face and says “No one knows!” To which, naturally people turn to me, “Amy? What’s going on? What is it?” To which I with the utmost sensitivity blurt out “Oh I just got diagnosed with colon cancer and shes having a hard time with it.” ” You can’t just say it like thaaat!” she replies as she wipes her eyes and serval bridesmaids start to cry. Somehow we manage to pull it together for a very nice picture. 

Immediately following the bridal shower I headed down to San Diego to go to my nieces 1rst birthday party. My two brothers live in San Diego and I needed them to also see I have hope, I have peace, I’m ok. I ate on Saturday, but not enough. I woke up Sunday morning to start what was planned to be a 3 day liquid diet before surgery Tuesday. Coffee and water, oh boy. I spent the morning on my brothers king size bed with both brothers, the baby, my sister in law and the dog while one of my brothers played the yukeleley. It was pretty damn idealic. 

This a “Crossfit paragraph” so if  you’re one of those people who gets annoyed by Crossfit, for starters why are you reading my long winded blog posts and secondly go ahead and skip this paragraph. But I had this problem of not having a “goodbye wod”, a last workout before my surgery! This was what I was most sad about. It was my tangible be sad about this because cancer is intangible and unknown. I was having surgery Tuesday and was on a liquid diet and doing more colonoscopy prep the following night so a wod would be impossible. So… I called up my workout partner, my WOD BFF, and we “broke” into the gym. We did a partner WOD, event 4 of the Crossfit team series, if you must know, 50 wallballs, 30 power cleans at 95#, 50 wallballs, 20 power cleans at 135#, 50 wallballs, 10 power cleans at 155#. It felt amazing, I teared up a couple times. When would I get back here? When would I feel well enough to wod after my surgery? When would I be able to eat solid food to feel strong enough. There were so many things I didn’t know. But I wasn’t letting my head wander down those paths. 

This is a “Christian paragraph” so if you’re not into that then I strongly suggest you read this paragraph. There’s this verse in the Bible that says “We have not been given over to a spirit of fear, but that of power and love and a sound mind.” I had prayed that verse for lots of people. That they wouldn’t be taken over or make decisions based on a spirit of fear but would instead take ownership of a sound mind. But now the verse was real for me. Alive even. Totally tangible and practical despite its seeming mysticism. I felt like I was standing on the edge of a cliff and that a spirit of fear threatened to knock me off into an abyss of fear and anxiety and “what if’s”. I felt like people’s prayers and this Power and love was anchoring me to edge of the cliff in a bubble with this clarity of thought. It was mystical and mysterious. Jesus is my spirit of power and love and a sound mind. I had peace and hope and clarity, while fear and dread whirled around me. 

Monday I met with the specialist. I was hungry and irritable but was eager to know more. To bring my hope out of the clouds to concrete facts. What were the treatment options? What did the biopsy results say? What did the CT scan show? How extensive was surgery? The specialist walked in and started with the path report, the results of the biopsy. Yes it was malignant, and it was almost completely obstructing my colon which is why I was having so much pain. Two of the three polyps they removed during the colonoscopy came back positive for pre-cancer, given more time they would have become two additional cancerous tumors in my colon. There would be more tests to be done but this indicated that there was something in my genetic makeup that allowed for these abnormal growths in my colon. Next he went over the CT scan results for my abdomen and pelvis. Tumors on my liver. I got hot and tingly, I felt nauseous and lightheaded. He made mention of one rather large lesion on my left lobe and thee smaller lesion on my right. This means that the tumor in my colon had been there long enough to spawn and set up shop in my liver and then start a franchise. It was not guaranteed that the lesions on my liver were cancerous but given the rarity of their presence in someone my age and the presence of cancer in my colon it was most likely cancer. Cancer in my liver complicated things, a lot. It meant no simple surgery to remove the mass from my colon. It meant an extensive surgery, probably removing a lobe of my liver and multiple portions of my colon. But almost as quickly as I felt hot and sick it left because I was struck with positive implications of not having surgery on Tuesday. I would be able to eat and go to Crossfit that night!

More importantly, liver tumors meant chemo. I really really really hoped I wouldn’t need chemo. I have this really thick, wavy, often curly, unmanageable hair that has been long since I was two years old and is kinda probably too much of my identity than I care to admit. This would be what I would focus my sadness on now that I could exercise as much as I felt I could. Hair was hair I knew but my hair was always my best accessory. My statement without saying a thing. Ok. Let it go. Like my WOD BFF and hair stylist, Lauren said when I later called her in tears, “Fuck your hair. I’m sick of the color, I saw we scrap the whole thing and start from scratch.” God I love her!

Buuuut I could eat! We went to some sit down place in a nearby mall. That’s not important. What’s important was they had sourdough bread. Not just sourdough bread. Half round partially sliced, warm spongy soft with a flacks crusty crust and real butter. Sourdough bread is one of the five substances I decided I wanted on my desert island that I couldn’t live without. And it worked its magic on my digestive system and soul instantly. 

The other magic worker I needed was my box, my people. I didn’t care that no one knew. I just needed to be around them. I walked into my regular 6 pm class and could be normal. I could take it all out on the work out and be cheered on by my friends. I teared up looking around the box and just soaked up the atmosphere. My gym is incredible. I know, all CrossFitters say that, but we’re special. The people, the way we get along and support each other, there’s a breath of heaven in it, a fragrance of Jesus. That’s what I love and why I need to just be in that space. 

So I’m meeting with an oncologist tomorrow to talk more about my tumors and more about chemo. 

Monday’s hydration session at the oncologist was great.  Last week my liver and kidneys got a little stressed by the chemo (who can blame them). My creatinine went up again and my liver function test numbers were… high? low? I can’t remeber, let’s just say off. That was part of the reason for going into the oncologist office, redraw labs and recheck my numbers. Turns out my numbers were already back to normal, creatinine, liver function, and my white blood cells (meaning my immune system was still at full force). I was like, “Damn, way to go body! Getting yourself back to homeostasis (normal) in only 1 week!” I mean, let’s be real, that’s kind of a big deal. Miraculous, you could even say. And there it is, miraculous. Indicating it’s not me, it’s not Crossfit, it’s a God who loves me and people praying for me. Kinda stabs you in the heart, huh? Nevertheless, I was still pretty nervous about going in to work the next day. 

Tuesday, I woke up easily with my alarm. Whenever that happens it means I didn’t sleep deeply enough, nerves. Driving to work felt so normal I wanted to cry. I love my commute. Call me crazy but I love everything about LA culture, even traffic. Maybe it stems from a deep seeded fear of missing out but I love having a commute. I love that everyone else is also braving the commute, it’s us against the traffic. I love how traffic, try as you might, is unpredictable, a wild untameable beast. I love that without traffic my 13 mile drive takes me 20 minutes but when I go to work when school is in session it normally takes me as little as 35 minutes and as long as 1 hour.  I even like that slight panic in the pit of my stomach when I’m late and there’s nothing I can do. I love my commute on the old 110 freeway on my way downtown. I love the hills and the trees and the curves and the history of it. I like that I’ve been doing it almost eight years and I know every crack and pothole. So as I merged onto the 110 and then caught up to the traffic it felt good. 

I walked into my office after having disappeared for 3 weeks with a “Guess who still works here!!” and was met by happy coworkers that echoed my delight at seeing them. It was nice to bring relief to people instead of sadness. They all knew I had started chemo last week and were so relieved that I was still myself and feeling good. By noon I was exhausted. I ate lunch and rested, then documented for my morning and rested more. At three I said to myself, “I can see a couple more patients, only an hour”. I saw three more patients then documented and went home. I actually met productivity standards for the day but I was super dead. I was even nervous about driving home. But I didn’t crash. I only fell asleep at two stop lights, (red lights, and only for a millisecond). I barely had the energy to walk into my parents house. I collapsed on my bed and slept soundly for an hour and a half. I woke up groggy and still tired. Too tired to go and pretend to workout. Great. I only teared up a little bit while eating dinner. 

Wednesday, I saw even more patients, exceeding the productivity standards. A little more energy, a little less tired. I also told myself I wasn’t going to be as tired. I went to box straight from work, my old routine. I can’t do wods because I can’t do intensity. I did some accessory work instead, you know, unilateral work for my legs. I’m still only 7 months after my ACL surgery. A couple rounds of KB front rack step ups, and Bulgarian split squats, and banded side steps. Ummm it was hard, which was super annoying. 

Thursday was even better. I made it through my morning and even through PT activity during lunch without a break and felt ok. I also went into the box ready to jam! The way I saw it, I could do the WOD with the class. It was a 10-9-8-7… descending reps all the way to one of med ball cleans, sit ups, and hand stand push ups. Umm I can do all of that! So I did! I wasn’t the fastest, I certainly wasn’t my fastest, but I did the WOD RX and didn’t even die. My port site was fine and I felt good. I think I needed that wod more mentally and for my heart than anything else. At home I died with fatigue, it crashed on me like a wave and I passed out on the couch an hour before I normally would. Sorry shower. 

Friday I felt practically normal. I even went out to lunch with a coworker and walked like half a mile or something for the best bean and cheese burritos in LA since 1976. I was only a little tired when I got back. It’s tough thinking about how good I feel and knowing that next week I am going to feel so not good. Part of me wishes I could make my response to the chemo less severe and feel less normal in my off weeks. But the other part of me knows that I’m going to crave feeling normal and having energy so it will be worth feeling crumby if I can get to feeling like this. It’s very strange to feel very much my old self but be in the middle of cancer and chemo and know that I’m poisoning myself again in a couple days. But I’m happy for the normalcy. My body is handling this chemo thing great!!

Another challenge for my week was that none of the nurses had found out about my diagnosis. All I heard all day is “Amy! Where have you been? I haven’t seen you lately! Did you go on vacation?” All I wanted to say was “No I got Diagnosed with cancer actually.” But multiple people have told me I can’t tell people that way. It’s hard to tell nurses. They’re in the middle of their shift, they have patients to take care of, cancer is distracting.  If I’ve learned one thing about having cancer it’s that telling people upsets them. I don’t want to upset nurses when they have to take care of other people! But I managed to tell a couple people. Three out of five nurses teared up despite my best efforts and humor. One nurse even politely corrected me that I have stage four not stage three. I burst out laughing because he was totally right. I felt like someone put a brick in my stomach but it’s still just so absurd! Stage four cancer!?!  “Stage one is localized malignancy, stage two is multiple tumors in the same organ, stage three is lymph nodes and stage four is another organ.” “Oh well I definitely have stage four then.” He teared up as I laughed. Thank God I have a sense of humor. My heart wanted to panic and start crying with him. I felt myself slipping toward sadness, like I was losing my footing. I began scrambling for things that are true…. One important truth, nothing has changed. I don’t have any new tumors, chemo is still Monday, the treatment plan is the same. There is no reason to be more sad now than I was two minutes ago. Then I told Him my most important truth. The truth that keeps me straight of heart and mind and anchored to hope and peace.  “Dude, the reason I’m ok is because I’ve got this relationship with God and everything I know about Him says that no matter what, He’s going to do good things with this. So I’m ok.” It’s a solid anchor, let me tell you. When it wavers, I remember all the people praying for me, keeping me in this space by their prayers. But, man, I get sad sometimes about it. 

I’m fairly compartmentalized emotionally, my natural state. And thus the sadness comes in waves. On Tuesday I was laying in bed trying to fall asleep and my normal fall asleep position was uncomfortable because my port site was sore. (Before all this cancer get up a million times in the middle of the night thing, I was a very good stomach sleeper. I am a fall asleep within two minutes wake up in the same position every morning stomach sleeper. So I obviously have a position that knocks me out with comfort.) I lay there trying to use pillows, trying other positions, getting irritated. And I just thought “Man! I don’t want this stupid port. I don’t want to have cancer,” and my irritation turned to sadness and I started to cry. Don’t worry it wasn’t as pathetic as it sounds, well ok, it was, but I immediately thought of truer and bigger things than sadness, stopped crying and fell asleep. But I get sad when I think of how much my life has changed already and how much it’s going to change still. 

But like I said, I can have 3-4 days of feeling normal, working out like “normal”, working and eating like normal!!! This is a huge deal and a mercy that I do not take for granted. 

Monday night after chemo, I was ok. The pump was uncomfortable. Of course, my stupid and really severe intestinal cramping started up around 7 pm and lasted all night. I mean like 7/10 writhing in pain cramping, all night. My poor parents were at their wits end. I did feel much better by around 10 o’clock the next day though. 

Tuesday was a good day, especially in retrospect. My workout friend and coworker, Carmen, came and hung out with me. She drove me from my parents house to my house and we just camped out, listened to podcasts, talked, read, I tried to get some blog posts done (unsuccessfully). Then my parents came over and we installed a shelf in my kitchen. I’m telling you, my little house is really coming together! I love being over there. It has such a relaxing vibe! It was just a pleasant, low key day, not feeling horrible. I was like “Ok. Chemo. Doable”. I thought about going into crossfit but was worried my intestinal cramping would start up so figured I’d rest more. 

We had called my oncologist and discussed my horrible abdominal pain. The prescribed pain medication wasn’t working and my oncologist says sleep is really important. So Tuesday night she suggested we double up and see if that helps. Well doubling up knocked me out for sure! But it also made me wake up feeling super hungover and extra lethargic. Nothing remedies lethargy like getting a chemo pump out! At 2pm my 48 hours were up and I could get it out.  

Taking out the pump was simple as disconnecting the line but taking the needle out was a little more painful than I thought. “Take a deep breath” they say and then yank. “If you time the breath right, it doesn’t even hurt.” Uhh ok I’ll work on my timing. Maybe it hurt because it is sore from the surgery still. After the pump came out and I walked back to the car it hit me. They say day 3 is pretty bad and turns out whoever “they” are, they’re right. It was like my energy had been sucked out of me and I felt nauseous and had a headache and had more cramping and abdominal pain. All I wanted to do was lie on my bed. 

I scrounged up enough energy for a shower and looked at the incision and port in the mirror. “Ew. How was this my life?” A friend who had been through breast cancer told me she hated her port at first because of what it stood for and meant and she resented it, but over time she loved it for its convenience and all it symbolized that she had already overcome. I liked that. I still hate it but I can see that in time I might grow to respect it. 

As the night wore on I kept expecting to perk up, feel better. I had all these aspirations of going to crossfit that night and just being in the box around all my friends. I was pretty disappointed when I felt worse instead of better. I got a little fever even, which just made everything worse. 

I refused to double up on pain meds because I didn’t want to feel horrible the next morning again.  I woke up about four times with diarrhea and intestinal cramping. Not a bad night. The next day I felt mildly better. My oncologist said my creatinine levels were up. Aka, my kidneys are working too hard, and I needed to start drowning myself and drinking three to four liters of water again. She asked that I come in for IV hydration and to recheck my labs. So my best friend Mary picked me up and waited 2 hours in the waiting room at the oncologist office while I waited for an open chair in the arm chair chemo room and then got dripped one liter of normal saline. I don’t know how that stuff makes you feel better but it does. I didn’t feel good by any means but I had a little more energy. 

I was quickly figuring out as the chemo caught up to me, what people meant by “chemo is a full time job”. Chemo isn’t as barbaric and awful as if used to be. By that, I mean that for almost every symptom and side effect there’s a medication to counter it. What gets tricky is monitoring your symptoms and timing it with medications. I had been given two medications for nausea, one causes diarrhea to be taken every 8 hours as needed, the other one causes constipation to be taken every 6 hours as needed. One medication for diarrhea but you can only take 8 pills in a 24 hour period. Then there’s Tylenol and tramadol for pain and cramping. So the nausea, the intestinal cramping, the diarrhea all need to be managed and timed with medications. Don’t have too much diarrhea but don’t get constipated! Manage your pain but be able to stay awake! All the medications make me feel a little groggy and sleepy so I have to take that into account too. 

The conclusion I’ve reached after my first week of chemo is I’m bad at drugs. I hate the way they make me feel but I need to stay hydrated and not be in agonizing pain. This chemo thing is going to be tough. 

Each day I’ve tried to do a little more, activity wise, testing out my tolerance. Saturday was a good day. And thus, I paid for it Sunday. I woke up ate a breakfast snack (one small pancake), and went to the box for the first time (!!!!). I laid around, cheered on the class, had diarrhea, I even sat on an airdyne for 20 minutes, (pedaling under 100 RPMs most of the time), ended up going 2 miles. But I felt ok, normal intestinal trepidation, normal groggy brain, so naturally I went out to post wod brunch. (We went to a spot I knew had well maintained bathrooms and I was hungry which is a big deal.) Thank God my parents drove because my energy level tanked. I came home and napped for an hour because I could do little else. 

I hadn’t driven anywhere in over a week and had plans of going to a friends house but needed a ride, (pain meds and such) but then I realized I hadn’t taken any meds all day and had napped and rested 4 hours so I decided to drive myself. It felt amazing! Driving has always been a stress relief for me anyway. (Even traffic is cathartic cause …Tetris. Duh.) Managed to go to my friends bbq and watch the Dodgers. It’s one of the best things to go to a friend house and be around their family and be treated like family, like you belong. People talk about worrying about being pitied or treated weird, I haven’t worried about it nor have I experienced it to an extent where it mattered. Basically I’m killing it in the friends department. So I lasted two hours and came home to a full on family party. 

Family parties probably deserve a post individually. So I’ll just say I loved seeing all my aunts and uncles and cousins and eating good food and it being completely acceptable that I was exhausted. Saturday was a good day. 

Sunday I was knocked on my ass, balancing the diarrhea and the meds was way more challenging and took a lot more out of me. Walking around the house was exhausting. I hate naps and naps are becoming the norm. But my brothers and niece were in town and we watched football and sat on couches and it’s a good thing I didn’t have plans cause I would have cancelled them all. 

In summation, everyday I’m learning more and feeling better. The plan is workouts and work this week? 

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! 

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. 



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. 

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. 

 

 

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.