Mist.

Immediately following my CT scans I walked over to my oncologists office for a lab draw. I’ve said this before but just to provide background, before every chemo treatment they need to check my “labs”. Labs include, my white blood cells (WBCs), neutrophils, creatinine, and liver function tests, just to name a few. Basically, we need to make sure that I’m stable enough to get chemo. So my WBCs need to not be too high (too high means I’m fighting an infection already); my neutrophils need to be high enough, (if it’s too low my immune system is too weak); my creatinine needs to be low enough (too high means my kidneys are working too hard to filter the chemo out); and my liver function tests need to be within normal limits (too low means the chemo is being too hard on my liver). Any of these numbers not measuring up has the potential to postpone or change the dose of my chemo. All this is to say, we check labs before I get chemo.

The nurse took my blood, no problem (I mean its never a problem, I’ve got excellent veins as CrossFit has helped with vascularity). “I don’t even need the tourniquet!” is a phrase I often hear. I sit twiddling my thumbs in the lab draw chair waiting for my preliminary results (just to make sure I don’t need a neupogen injection to tell my body to produce more neutrophils and make me ready for Tuesdays chemo before I go home). My oncologist pops out of her office. My numbers were all ok, I was a little neutropenic but not too bad. She always checks on my symptoms, how much bleeding am I having in my stool, how is my tingling in my hands and feet, how much cramping and pain have I been having, those kinds of things. After I provide her with favorable answers she replies, “Lets check out the scans, I don’t have the reports from the radiologist but we can still take a look at them.” I can tell she already looked at them is kinda excited as I sit in an empty chair in her office. First, she brings up my last set of scans from November. Every time I see them I get a better idea of the tumors size and orientation and relationship to each other. Then she brings up the new scans, taken only an hour before. I was pretty shocked at how much smaller the tumors seemed. It’s a good sign when my untrained eyes can distinguish differences between the two scans. Heck, one of the tumors was even difficult to see as it was all shadowy. My oncologist agreed, things looked much smaller, we’d have to wait for the radiologist to measure everything but things looked good. “My mom is going to flip!” I tell her. But for me, this is by far the happiest I’ve been at any news I’ve received. You know, when your heart kinda hits the ceiling and you can’t help but smile? That was me. My oncologist was going to wait for the official report to talk to the surgeon at Loma Linda that afternoon and give me a call.

When she called me later she had even more good news! My tumor marker had dropped from 110 before the last dose of chemo to 67 in just two weeks. The radiologist report from the CT scan was back with measurements for my tumors and all the tumors in my liver had shrunk almost 50%. The metastasis in my lymph nodes were both completely gone!  She had spoken with Dr. Reeves, the liver surgeon, (experienced, friendly, within my insurance network, and a complete and specific answer to prayer) and he says it’s time to talk surgery. (!!!) I was scheduled for more chemo Tuesday, as planned, but without the Avastin, the drug I would need to be off for six weeks prior to surgery as it has high risk of bleeding and stuff.

To fully understand how exciting, miraculous and just straight up huge this conversation was, please read the previous post, “Hope”. Then can we take a minute to talk about how ridiculous my God is? Doubt what you want, but this is crazy.

It had been a three month mental and emotional battle, not instantaneous, but that just means it’s a bigger deal. The work that’s been done in my heart has been darker and deeper than the wave of a magic wand. I went from a “stable”, life threatening, aggressive colon cancer, with liver tumors too big to be taken out surgically, that was working its way up to my lungs via metastasis in my lymph nodes and tumor markers not low enough to say that chemo was working well enough … to being a surgical candidate… a “responsive”, curable, aggressive colon cancer with liver tumors small enough to be removed surgically, not spreading anywhere and tumor markers low enough to say that chemo is working. My oncologist grabbed me by the shoulders and looked into my eyes and said, “Amy, you’re going to be cured. You’re going to be my miracle patient!” That took my breath away. Before my scan I had said “Where I’m challenged is to stand in faith on some things I feel are true despite the current facts. I’m believing my scans will say things are ready for surgery. I’m believing that my tumor markers will be within range for the surgeon to say I’m ready for surgery.” Stop it. Shut up. Thats crazy.

When you continue your journey there may be much mist and cloud. Perhaps it may even seem as though everything you have seen and been promised was just a dream, or the work of your own imagination. But you have seen reality and the mist which seems to swallow it up is the illusion. Always go forward along the path of obedience as far as you know it until I intervene, even if it seems to be leading you where you fear I could never mean you to go.” (Hinds Feet on High Places, Hurnard)

I stumbled upon this highlighted passage in a book I read in college. How cute right? Little college Amy, so innocent, no idea how deep that quote could go in her heart and become true in her life. I’m tearing up typing this because even though I’ve been sitting with this news for a week I hadn’t really processed it. To be honest, I still don’t think I have. But whats real? I love a God who trades openly in the currency of the impossible. I’m lucky that I get to have this be my tangible reality. He’s not scared by my anxieties, insecurities, doubts, or shortcomings. Guys, this is really good news. What’s even better is He’s not just unafraid he loves me and knows how to support me and surround me with people in a way that only the language of my heart knows how to speak. Thats so crazy cool. How many people get to watch the finger of God write such clear messages across their life and heart?

I wish I could say everything is better now but the battle for my heart, hope and sanity still rages. I still cried my way through chemo on Tuesday. Meaning my body and heart were like “Please, Amy, no!” and made my eyes leak all day. Which sucks because I’m convinced one of the drugs makes tears burn my eyes like acid. Tuesday was one of the worst chemo days to date. I got more good news though, my tumor markers were down to 45, aka it dropped the amount it normally does in a week in only three days. I can only assume with such light and good news, chemo effects will be darker and I walked out in a severe lightheaded, nausea fog that made the nurse concerned. My parents got the flu so I evacuated their house to my house to hunker down into an illness free bubble. I was pretty worried I’d hate it but its been fine, nice even. Great, I’m still healthy. I haven’t gotten sick since my first day of chemo. But my immune system is still weak and with surgery on the horizon I can not afford to get sick! So no CrossFit for me? No going to work next week either? This whole “super severe worst flu we’ve seen in years” season is really cramping my style. I hate being smart and making adult responsible decisions. I just want to go work out and lift weights with my friends! CrossFit is such a heart breaker!!

Still standing on faith for one surgery not two. When my oncologist talked to my surgeon on Friday he still said he wanted to do two surgeries. I don’t blame him. Two staged surgery is safer, I wont be as likely to die. First surgery get the tumor out of my colon and take out the lobe of my liver with the three smaller tumors, then let my liver regenerate and stabilize and go back in for the huge tumor in my the other lobe of my liver, the riskier surgery. But I don’t want two surgeries! I want to have surgery, recover and get back to life!! But hey, well see what he says on Tuesday…

Hope.

Currently I’m in the waiting room “sipping” my banana barium solution for my third CT scan. The good news is, they were able to schedule my scan for the morning, which means I don’t have to die of thirst or starvation this time. I mean, I still haven’t had anything to eat or drink yet today but it’s only coffee and breakfast. I’m merely postponing it. I’ll pretend I’m having a disgusting banana chalk chemical smoothie for breakfast instead. I checked in, got my patient ID band, signed the consent forms, and now I’m waiting. The Price is Right is blaring on the TV in the corner of the room. The artwork on the walls is multicultural and obnoxious. But I can tune that all out.Yum. Contrast.

I’m kind of excited. What will my scans show? In my mind these are turning point scans. They have the potential to show that the masses in my liver are small enough to be taken out and next stop is to schedule a follow up appointment with the surgeon to see what he thinks about them.

I’ve met the initial goal of three months of chemo. Because of avastin, the fifth chemo drug they added three rounds ago, I’m going in Tuesday, January 2nd, to start the new year right with my seventh round of chemo. After that, depending on what the scans and surgeons say, I might get a break to let my body recover for surgery.

I’m sick of chemo. My head is still ready to take it on but I’m finding my body is over it! I get these involuntary visceral reactions like Pavlov’s dogs. I was watching a movie with a hospital scene where the character was dancing with an IV pole and I got super nauseous. When I think about chemo I get nauseous. When I think about my doctors office I get nauseous. The nausea this last time felt worse, more constant and harder to control with my medications. Chemo is like a flu with a hangover that doesn’t get better as the day goes on, in fact, it gets worse and even more, it gets worse as the week goes on. My mind is like, “Let’s do this! Beat this cancer!! Whatever it takes we’re down!” And my body is like “Wait. Wait. Give me a minute. Wait. I just remembered we don’t want this.” Kinda like when you get a pedicure and they’re scrubbing the bottom of your feet and you have your leg stretched out for them but at the same time your pulling away, almost involuntarily, from the tickling pressure. I hate visceral irrational reactions to things. I want to tell my body to get a grip but then my heart feels so sorry for me and I get an emotional dread. My heart says “Oh Im so sorry! Things in your life are supposed to be so different! How disappointing and sad this is! Let’s just cry.” It’s like my mind alone understands what needs to be done here and my heart and body are teaming up against it. Every week my body and my heart get stronger and louder. This is an example of where being stubborn is a good quality. Not to mention the three years of crossfit training my mind to push past my perceived limits and push my body to do more than it feels it’s able. (Ugh I love CrossFit!!) Mindset is huge but I’m convinced it’s people’s prayers that keep me strong and able to stand against how I “feel”.

Faith is tough. My definition of faith is taking as fact that which is unperceived by the senses. Also know as, believing the invisible is as real as the visible, and believing in things that are even contradicted by what we see, touch, taste, smell, hear and feel. That takes mindset!

Currently the facts are these:

-My tumor markers are maybe somewhere below 100 (the last lab draw before my last round of chemo they were at 110). The surgeon said he wouldn’t even consider surgery for me till it was below 50.

-The masses in my liver are too big to be surgically resected and will most likely require a two staged surgery to prevent me from liver failure and death.

Where I’m challenged is to stand in faith on some things I feel are true despite the current facts. I’m believing my scans will say things are ready for surgery. I’m believing that my tumor markers will be within range for the surgeon to say I’m ready for surgery. I’m believing I’ll have one surgery, not two, in mid to late February (even though part of me wants two surgeries cause that’s way more badass). The thing that’s scary is that faith requires hope, and where there’s hope there’s room for disappointment. I hate disappointment. I structure a lot of things in my life to prevent disappointment. I’ve looked at treatment of this cancer as work to be done. There is no disappointment in work, it’s just a measured effort. But to hope for, even bank on, things outside of my control, placing my heart in a position to be disappointed is scary. Even more, to not just believe these things in my secret heart but put them out there where other people can see my disappointment is scary for me.

These are things that tune out bad artwork and “The Price is Right” and banana chalk chemical smoothie. These are things bigger than me and I’m so glad I am surrounded by people who hold me up in prayer and hope with me.

Regular.

Currently, very few things in my life are regular. The main exception is my new life’s rhythm of chemo, recover, chemo, recover… you get the idea. I love being prepared for things and anticipating and ready for what’s next. Now I get to be prepared to be unprepared and be ready for absolutely anything. It doesn’t really work out well. I don’t really have the most energy for that and certainly don’t have any reserves to tap into. But I’m adjusting. As this whole chemo thing continues to repeat itself I’m getting used to the constant nausea and lightheaded fatigue. I’m creeping closer and closer to what I call normal. Not missing work or dinners or coffees or parties or weddings, because what’s the worst that could happen? Let’s just see how tired I get, and let’s see how crampy my intestines get, and let’s see how exhausted I am at the end of the day, or how hard it is to wake up in the morning. I just have to stay in a functional zone. I’m learning.Chemo day four Christmas party

The previous two rounds of chemo were challenging because they took the one regular thing of chemo, Mondays, and mixed that up on me too. Tuesday for round four and Wednesday for round five. This is tough because it screws up my projected “how I’m going to feel” meter. Normally I start crawling out of my chemo hole on Friday, day five, then progressively feel better and can tolerate more activity by the weekend. Well thanksgiving week I got it on Tuesday so instead of feeling great for that Saturdays wedding it was only day five and I was just beginning to feel better. Turns out mind over matter kinda works and I get a second wind if I push myself hard enough. (I think… I don’t really want to put that to the test or bank on a second wind as a normal occurrence though.) The following round of chemo wasn’t given to me till Wednesday and I had Christmas parties to go to on day four and lots of people I needed to see on day five so I just pretended it was a normal weekend and pushed through. It was ok. My body is doing ok!

A lot of the effects of chemo are cumulative, meaning the more chemo you get the more side effects you experience. For example I’m starting to get tingling in my hands and feet. But overall I would say I’m recovering better instead of worse. My work week was pretty exhausting without those two extra recovery days.

I’m now six rounds into chemo. The plan is to repeat my CT scan in two weeks then see what the surgeons think. My tumor markers have continued to go down, from 193 to 140 to 120 to 110. I started yet another chemo med, three rounds ago, so I’m getting five chemo drugs now. If I didn’t recover so well I’d say they were hammering my body to a pulp with all this chemo. But I am recovering well. My creatinine is great, I’m hydrating enough. My LFT are still within normal limits, my liver is still functioning normally, (hello holiday cocktails). My WBCs are staying within normal to low limits so I’m not getting sick and I’m still able to work and go to the gym.

Workouts have been frustrating. When I first started treatment it was “don’t make yourself too tired”. Now it’s “let’s go slow and see if I can still get through the workout”. My body generally quits before my mind, so my mental toughness is useless. By quit, I mean I almost pass out, it’s not something I can push through, but I still try anyway. I’ve shifted a lot of my workouts and training to Olympic weightlifting instead of workouts with intensity. It’s easier to rest between sets and I feel like even if I’m getting weaker I can still get my technique better.

I’m still mentally in a good place. I’m clinging to hope and focusing on the work to be done now, not drifting into fearful thoughts. For those of you that like to read the Bible I’ve been hanging out in Isaiah 45, especially verses 2-3, but the whole chapter has lots of interesting things to wrestle with. I was inspired to check it out after reading a passage in Streams in the Desert. I mean, He’s mysterious and powerful and so so much bigger than we ever admit to ourselves. I think if I’d have been challenged to conceptualize how powerful and mysterious and big He really is before this, it would have made me uncomfortable. But just now, it’s very comforting to think about.

I have started dreading chemo. Initially I was geared up to take it on but it’s wearing me down. It’s been a war with the pity party every time lately! This is where the people I have been surrounded with are so clutch! I still feel like I’m being held, in a bubble anchored to the side of that cliff that drops into that fearful abyss, by prayers. It’s as though just when things start to drift towards dismal I’m buoyed up amazing people or situations or beverages or a heavy barbell. I get to go out for pre chemo margaritas with my friends. I get to lift heavy weights. Realistically, I’m in super good shape going down the road ahead.

Thankful.

So I’ve had four cycles of chemo now, and I’m really doing so well. As in, beyond my expectations well. I’m speaking strictly subjectively here. My off chemo weeks I’m feeling normal. I’m doing WODs, I’m hanging out with friends, I work full days, I have great weekends. Yes I get tired, (I’ve got this weird fatigue thing where I feel almost dizzy and sometimes I almost pass out). But I just want a quick blip to say I’m doing well. Mentally, spiritually, physically, mostly emotionally (chronic pre-existing condition excluded), I’m doing so well. Granted this is off chemo week Amy talking, but still! Some people say, “Oh Crossfit is so good for you!” Other people are like, “You’re so strong! Good for you!” Let’s be real, there’s so many people praying for me. I’m beyond humbled and so grateful! Crossfit and my pre-cancer strength of body and mind can’t produce this. I hate chemo and feel so crappy during my on chemo weeks but I’m still able to do stuff and function beyond expectations. This last cycle I had no diarrhea and only two episodes of moderate “abdominal refer pain to my back I need some meds” pain. So thank you for continuing to support me and pray for me as I head into about four to five more rounds of this craziness. Here’s to shrinking tumors, good immune systems, less side effects, and no weight loss!

Surgeons.

Here’s the next batch of “drama,” my insurance.  I’m insured through my work, and of course how can an insurance company that insures hospital employees save money? By sending them to that hospital where they work to receive care. Don’t get me wrong, my insurance is great. I mean I started chemo two weeks after my diagnosis, things moved seamlessly with scans and meds and referrals. But here’s the thing, my liver needs a specialist to resect the tumors. What if my healthcare system doesn’t have a specialist? What if they just want me to see some general oncology surgeon? With the first repeat CT scans done it was time to get the input of surgeons on how things look and what needs to be done, treatment wise. We decided to check out the top liver surgeons in the area. So I made an appointment with the in network surgeon at Loma Linda, and a surgeon at UCLA and City of Hope.

I started my surgeon tour out at Loma Linda, the day after my third round of chemo. The facility was nice, orderly, easy to navigate. Every staff member we met was cheerful and helpful. The “Fellow” came in and got a detailed history of all that’s been going on, very thorough, and not bad looking, I’ll add. Then the surgeon came in to go over my scans, offer his opinions, and answer any questions that I had. He had a massive mustache and big teeth that you didn’t lose sight of because of an unfading smile through the entire interview. Turns out as excited and pleased as my oncologist was with the shrinkage of my tumors, surgeons are not impressed. But he did declare my disease “stable”, meaning no growth or spread of the metastasis and across the board shrinkage of all tumors. So it can be said the disease isn’t progressing and is stable. However, he wants for all the tumors to shrink 30% before he’d even consider doing surgery. He also wants my tumor marker to be less than 50 (it was hovering around 250). I wasn’t expecting surgery right away but this surgeon came at me as though immediate surgery was what I was expecting and he was giving me bad news. The entire consult had this negative tone because he didn’t know how much I knew so even things I already knew were tainted as bad news. I did develop a greater appreciation for how extensive and dangerous my cancer is. So the way he tells it, this isn’t going to be some one and done surgery. The danger is that I’ll need to be off chemo for about three to four months, including prep and recovery. Turns out the surgery in the liver looks to be too extensive and would need to be done in stages, or require two surgeries. This is scary because in that time any cancer that isn’t removed can have free reign to spread. This is a problem specifically in the two lymph nodes with metastasis that wouldn’t necessarily be removed surgically. It’s always a little disheartening when a surgery that is supposed to save your life is currently today not even possible. If I had the surgery today the cancer would spread or I would die of liver failure. But surgeons are very good at making the long term the focus and not the current state of things. So he suggested stool softeners to make me more comfortable and decrease the backup my tumor was causing in my colon and adding a chemo med to increase shrinkage rates. He’ll follow up with us after the next set of scans. The really good news though was, we liked him. We felt him to be competent and realistic and without a big ego that can, at times, make what’s best for the patient take a back seat. So it was a huge relief that if my insurance company insisted on refusing another surgeon we might like better at least we had a competent liver specialist who wants to work with us and is approved.

You know what they say another day another surgeon. The following Monday I went to the City of Hope to meet with another surgical oncologist who also specializes in liver surgery. Same as the other doctor he went over my CT scan results with me and gave me a better idea of where my tumors are in relation to each other and how big they are. You see it’s very difficult to visualize a 3-D liver from a 2-D CT scan image. A CT scan basically takes pictures of all the organs in the region that is being imaged. It takes horizontal and lateral pictures and for a mere layperson, it’s very challenging to mentally put together the images so that they can make sense as a whole. It was quite enlightening how this surgeon explained and drew things out for us. The surgeon also gave me a better idea of the extent of the surgery that would be required. Which was very helpful in understanding why surgery right now is not simply “not ideal” but quite frankly, impossible. He says two surgeries won’t be necessary and would bring in an urologist to take out the metastatic lymph nodes in the same surgery as the colectomy. All together the surgery would take about nine hours, six on the liver alone. It was a little unnerving that he felt he could know so much without any idea of how my cancer would look after the two to three more months of chemo he was suggesting. Those kinds of predictions come straight from an ego (generally speaking). It didn’t help that I felt more like a liver and less like a patient. So I appreciated his recommendations, same as the Loma Linda surgeon, add a chemo drug to increase shrinkage rates and follow up after the next scans.

The very next day, Tuesday, I went to UCLA to meet with their surgeon. This surgeon was a recommendation from the secret doctor network. UCLA is the hospital for livers in the LA area. They are the liver transplant hospital of Southern California but the surgeon we were recommended was a general surgical oncologist not a liver specialist. This guy was way more personable, and reasonable, no surgeon ego to note. He came in with the same tone as the other two surgeons, the bad news undertone. No my tumors were not resectable, maybe they would be maybe not, depends on the chemo, add the additional chemo drug. He agrees with the first surgeon from Loma Linda, two surgeries on the liver may be required but perhaps not, depends on how they respond to the next rounds of chemo. He did explain the risks better. Right now surgery isn’t recommended because of the lymph node metastasis and risk of spreading while being off chemo for the surgery. But even when we are ready for surgery whether it’s one surgery or two, the risk is that removing too much of my liver with the tumors can lead to liver failure. Yes, the liver regenerates but one of the chemo drugs I’ve been taking is toxic to my liver so we need to be sure that the part of my liver that’s left after the surgeries is up to the job. If it isn’t up to the job and I go into liver failure, basically, I die. So that was cheery. Then to top it all off he says “yes, there’s the possibility that this cancer is curable, but that’s not guaranteed. I mean I’d like to say you’ll be cancer free and alive in five years but I can’t guarantee that”. That was the first time I’d had that thought, not being alive in five years. Overall I liked him, in addition to the first surgeon, if not more so. If I need a port that delivers specific chemo directly into just my liver then my insurance will have to approve him and he’ll be my guy. Otherwise, it sounds like Loma Linda will be place.

Despite how I felt, there wasn’t any real bad news. I felt pretty heavy and dark after meeting with all these surgeons but they hadn’t said anything I didn’t already know. I didn’t need to feel dark or bummed or sad but I was. It was a heavy two weeks. I felt myself get tired of fighting the “what if’s” and wanting more and more to slip into worry and self pity. I fought against the doom of perhaps not being alive in five years. But this is where I get supported and lifted up by peoples prayers and my amazing community. People to remind me of what’s true and what’s promised, most especially when things look quite the opposite. I do hate dismal undertones to my week though. But I ended my off chemo week feeling so good! I swear, my body is handling this whole chemo thing so well! My immune system is doing great, my white counts bounce right back. My tumor markers dropped to 193 before my third round of chemo. So I have a lot of things to be happy about and not disheartened about despite it all.

Here’s my “moral of the story,” the “takeaway,” the “nitty gritty,” the heart of the real struggle. Skip this paragraph if you hate encouraging things. Here’s some things I’ve read that have recently been encouraging, comforting, and help me be even a little bit brave. “Therefore may we continue to persevere, for even if we took our circumstances and cast all the darkness of human doubt upon them and then hastily piled as many difficulties together as we could find against Gods divine work, we could never move beyond the blessedness of his miracle working power. May we place our faith completely on Him for he is the God of the impossible.” If that doesn’t speak right to the heart of the matter, I don’t know what does. No matter how many of my doubts and fears become tangible reality, compiled with doctors projections and all the things that could go wrong, even then, I couldn’t move my circumstances beyond how powerful and surprisingly kind my God is. Sorry people who don’t believe in a God who does crazy irrational things on a bigger scale than your intellect, I feel sorry for you (and for myself for all the years I made God operate in my comfort zone of expectations and understanding). I’m learning that being prepared for the worst is really just a recipe for anxiety and unrealistic fears. For those of you who don’t know me, being prepared is my bread and butter. Instead, I’m preparing for invisible things to be worked out in my body and in the lives of a lot of other people. Does it mean I question my sanity? Regularly. But the alternative is truly terrifying and really insane. Impossible things it is! Something else I read said there is no reason why we shouldnt ask for great, too big for us, impossible things. Without a doubt, you will receive them if you have the courage to wait with “patient perseverance for Him and meanwhile doing those things that are within our power to do”. I can tell you for sure waiting with patient perseverance is the scariest thing I’ve done in my life!

P.s. Those quotes are from “Streams in the Desert”.

Scan Results. 

Who doesn’t love good news? It’s hardwired into humanity, this affinity for good things. I won’t beat around the bush, chemo is working!

Friday a couple weeks ago I went to have another CT scan. I set my alarm for 7 am again and had a piece of toast and went back to sleep. I woke up hungry anyway a couple hours later. Nothing by mouth till my scan. No coffee, no eggs, no pancakes, no water even. I hate it. My scan was scheduled for 1:30, CT abdomen, pelvis, and the chest this time, to get a clear picture of the lungs. I went for the vanilla barium cocktail instead of banana this time. I don’t think it was a good idea. I’ll do banana next time. What happened to chocolate or strawberry?

I went through the rest of my Friday unconcerned and untroubled. I wouldn’t know the results till I saw my oncologist Monday for chemo round three. In my mind, the tumors would be smaller. But my mother was having another day. I am so struck by how different our journey through my cancer is. She spoke in the morning with my oncologist who said the tumor markers had gone up, from 253 to 274, indicating increased cancer cell activity. Troubling but not abnormal. Apparently, there’s a typical “rebound effect” after a big drop, they attribute it to a flare of increased cancer cell activity. But this can also indicate that some of the tumors are responding well to the chemo and others are not. So the word to my mom was “Let’s wait for the scan results, I’ll call Amy and let her know later today”. Well I didn’t get the call but I wasn’t expecting a call. My mother on the other hand was sick with worry that the chemo wasn’t working and some of the tumors had grown. I didn’t know that was even possible so I was totally unconcerned. However, that’s a classic example of something that could entrap me in fear that I don’t even need to be concerned about. It’s that supernatural shielding I’ve mentioned before.

Thank God for the secret doctor network coming through yet again. My oncologist was so pleased that she text my aunt (the breast cancer surgical oncologist) to let her know. My aunt then called my mom and wam bam I’m getting to know results the day of my scans.  Apparently we’re not too concerned with the colon tumor, it’s pretty easy to remove part of my colon and stitch it back together. But the liver is so much more complicated. One tumor in the liver would be manageable, even multiple tumors in one lobe of the liver is manageable but I have one large tumor in one lobe and 3 smaller, but still large, tumors in the other lobe. The largest one shrank the most significantly, almost 25% and the smaller ones shrank 15-20%. My oncologist is very pleased.

My mother was relieved beyond words. I was pleased, but again, I hadn’t had worry or dread so I wasn’t as relieved. That whole idea of not knowing true happiness until you’ve had sadness is a very true concept. I wasn’t anxious so I didn’t have as much relief. This kinda bothered me. And made me wonder about how well I’m actually processing all of this . I generally look at things as rationally and logically and objectively as I can, putting emotions on the back burner until I can wrap my head around something. Then I’ll release emotions proportional to the facts. However, I want for my heart and mind and body to be working in sync here, not lagging emotionally or letting my mind bulldoze my heart like it always does. I had a good weekend of asking the Lord about it. You know, literally “Am I not processing things?” and seeing if anything comes to mind. So as I question, I sit in the emotions and all the thoughts that I’ve been too sick or moving too fast to feel or think. So naturally, I had to allow myself be a little more sad. I have pretty rigid emotional expectations for myself. I know these expectations aren’t from other people or from my God, they’re from me. It’s my experience that things not from the Lord lead to bondage and limited perspectives and lost peace and joy. I know my expectations for myself are learned behaviors that stem from brokenness and disappointments. Needless to say I’m still working through some things.This is Wallace and that is my chemo pump that hangs out with me for 48 hours after my Mondays infusion.

I was talking to Wallace the other day, feeling sorry for myself, asking “how did I get cancer!?” I had this thought… ok interjection… I’m no theologian, I’m also not a philosophical intellect, and most importantly I don’t pretend or try to be. My thought is my thought and this is my blog. So do me a favor, if you disagree with what follows either talk to me in person (not the interweb) or keep your opinions to yourself. I have cancer. I have wrestled with my fair share of big questions. I believe asking questions is a core to humanity. I also believe that the God I know loves questions and that something he loves more than questions are those willing to wrestle with Him over the answers. There’s a verse in the Bible that says, “It is the glory of God to conceal a matter and the glory of kings to seek it out”. I’m not someone that believes that God is behind the scenes controlling everything. I even hate the phrase “God is in control”. But I do believe that He is sovereign. I believe that he is all powerful and all knowing. I believe he doesn’t just know what I will do or say in any given situation, I believe He knows every possible option of what I will do or say and their resulting life changing paths in any million of possibilities and variables. I believe He is so much bigger and creative and kind than the human imagination can conceptualize. So when I say I believe God is sovereign, what I mean is that everything in this dimension is either (that’s an important word) by His design or (another important word) His allowance. Becaus here’s another kicker, I don’t think that humanity and our universe, or dimension exist in a vacuum. I also believe that He has an enemy. Satan, the devil, demons, call it whatever you want, a force that stands in opposition to His goodness and His purposes and wants to rain on His parade. I choose to believe my cancer is not something by His design, but I do believe it is something He allowed. This cancer is literally in my DNA. Some genetic anomaly, not hereditary, a mutation of a gene that creates extra cells in my colon. Sure, the gene could have been mute or whatever, I’m not a geneticist, I don’t really get how it works. But I know that when I was “knit together in my mothers womb” my DNA was mutated. From what I know about Him, all that I’ve read, and studied and experienced, I can say confidently, He allowed it out love and nothing but good intentions.  Mind blowing and seemingly naive, I know. When he allowed this cancer, he didn’t just look at it and see nausea and pain and heartbreak (because I know He sees those things and is with me in every second of it), he saw a lot of good things. When I imagine the good things that can come from me having to go through this, I get excited. Because I can imagine a lot of good things. Heck, I’ve experienced a lot of good things already. So how much more can God? He who knows hearts and backgrounds and the intricacies of people’s lives, invisible things beyond what I can see and imagine. How much more can He have good things that he can work with this cancer? Cause if He can see the cancer from my DNA, He can see all the ways He’s going to do wonderful, deep, beautiful things. The God I know, that’s like His favorite hobby, taking crappy, messed up, broken, things and somehow make them good, better than before good. He does it all time. I mean isn’t that what Jesus life was all about? So anyway, I can rest and say “ok, fine. That’s how I got cancer”. 

P.s. I’ve got other news and developments but I need to post something so here’s a snippet!

Second Round. 

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. 

Livers. (Written October 2 ooops)

(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. 

Work.

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. 

Post Chemo.

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. 

My view from my bed into the back yard.

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?