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!
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”.
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.
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!