The Grind.

It’s hard to write these things. Blogs. “Start a blog, it’ll be fun.” “Get your thoughts out of your head and update everyone at the same time.” But then you start to feel accountable to it and it loses its charm? I think I take it too seriously? I know this one takes a lot of energy to write. I don’t like expending my energy outside my day to day life. I’ve become an energy hoarder. However, time just leaks by and next thing you know, I have already been back at work part time for two months and am eight more cycles into folfiri and cetuximab. Basically, my day to day has expanded exponentially and I have an entirely different normal than I did two months ago and a lot less unclaimed energy. Naturally, updating the blog has taken a major backseat.

It’s been more than a priority or time obstacle, however, that’s kept me from the blog. Truthfully, I haven’t wanted to process all that’s been going on. I’ve been pretty mad at God and realized I’ve boxed it up and walled it away, saving up my unprocessed negative emotions for a distant rainy day, or emotional explosion. In the meantime, I enjoy that I get to put my nose down and get things done. I don’t have to think of how to spend my time now that I’m back to work. My life has developed somewhat of a rhythm. I’m either working or I’m recovering from chemo and to top it off, I just started coaching a class at my gym four times a week. It’s easy to get stuck in that rhythm and not have to decide how I feel about it. Of course I’m extremely disappointed that I’m still having to feel so sick and battle so hard. I sincerely thought I had already been through the worst this cancer could throw at me. The nausea, the surgeries, the diarrhea, the pain, the foot hand syndrome, the feeding tube, the colostomy, the almost dying, the sepsis, the wound infections, the un-synced bowel movements, the narcotic withdrawals. Really this cancer has thrown at me the worst of the worst. Aside from how miraculous my body has recuperated over and over again there have been no easy breaks for me. Little hope-dwelling me wasn’t expecting to get dealt another tough hand with more worst case scenarios, but I did.

To summarize, there were at least six, one to five millimeter nodules in my lungs. Without the colon cancer history thing, this would still put me at stage IV cancer. So that’s fun. Having this many nodules means the oral chemo isn’t strong enough, the nodules are still able to grow even while on them. This many nodules also means it’s too much surface area for radiation. What I had dreaded most was before me, full blown intravenous chemo. The same chemo I had already undergone twice for a total of eight months, more or less. But not just the chemo we’d done before, folfiri (irinotecan, leucovorin and 5-florouracil), but folfiri plus cetuximab. (Side note, this next part contains a lot of sarcasm. To be read in a lifeless tone and straight face.) Cetuximab adds in a component of “fun” by way of its mystery. We didn’t know if it would work on the genetics of my cancer. Having rare gene mutations make things so much more unpredictable and exciting! The best part about this drug are the side effects. This drug affects hair growth, nails and skin, not to mention, the sign you can tell it’s working is a painful acne like rash. Well, lucky me, it works. And it works really well apparently because the acne covered not just my face and neck but my back and stomach and upper arms as well. It showed up two days before I returned to work so that made it extra special. The extra facial hair has been fun too, as well as, the cracks in the cuticles on my fingers and toes. Just as the nausea starts to ease up after chemo my skin breaks out and my cuticles start to split. I don’t want to leave out the abdominal cramps and chemo diarrhea! This chemo regimen is by far the worst to date. My body is more wrecked and I’m not recovering as well as I have in the past.

The timing of going back to work was humorous, just five days after starting full blown chemo. Like I said, I enjoy the nose to the grindstone push without having to think. In truth, returning to White Memorial was refreshing. It felt so normal. I put on my same scrubs, I drove the same commute, I parked in the same employee parking lot, I got my old desk and my same wonderful, supportive coworkers. I’d been doing those things for eight years before I went on leave. Eight years is a long time to establish good relationships and a good routine. I was so delighted how easy it was to slip into my old role and how genuinely welcomed back I was by coworkers across departments in the hospital. I was making nurses cry at least once a day during my first two weeks. It feels good, to know that your well being can have that much of an impact on people, people I hadn’t done a great job of keeping in touch with or updating. They could have been, “Hey, Amy! Missed you around here. Good to have you back!” Instead I got excited tears and “Amy! Thank God! I pray for you everyday girl! So good to have you back! What’s been going on?” I mean, for reals, my work could not have been more supportive or made the transition easier. It was kinda overwhelmingly wonderful, if I’m being honest.I didn’t think I would be able to handle working through chemo again. I went in to tell my supervisor I would need to quit and instead walked away with a new flexible schedule. I’m working part time with days of rest between shifts, averaging twenty hours a week. It’s exhausting but doable.

Two weeks ago, I had my interim CT scan to assess the six nodules in my lungs and screen my abdomen and pelvis for any new masses. The possibility for the chemo to be ineffective on my lung nodules was pretty significant since the cancer cells that grew into nodules survived the months of chemo I had already undergone. I am very happy to report the CT scan showed all of the nodules have either shrunk or disappeared! The chemo and all the hellish side effects I have had to endure the past three months has been worth it! Praise the Lord! The CT scan also showed that I have a case of pneumonitis ( lung inflammation, basically pneumonia but not caused by an infection) and multiple PE’s (pulmonary embolism or blood clots) in both lungs, both of which are pretty serious if left untreated. I was completely asymptomatic, no chest pain, no shortness of breath, nothing to cue me in on how tough of a time my body was having. I mean, other than fatigue and malaise, but I’m doing chemo I’m always feeling crumby and tired. I have had to start blood thinners and more antibiotics with more side effects. The pneumonia and blood clots, we initially believed, were caused by chemo toxicity. So last week we held chemo to allow my body to rest in hopes that the blood clots and pneumonitis would resolve. This was only possible because my cancer is stable enough to press pause. Unfortunately for me, my oncologist says the plan is to continue this miserable chemo regimen until the nodules are completely gone and even a month or two afterwards or until the chemo toxicity is too much for my body to handle. So I’m looking at four months more of chemo at the very least, possibly more.
Yesterday, I had another CT scan to check the pneumonitis and PE’s so I could have chemo. I was sure I was better and would have chemo today. However, turns out the pneumonitis is worse. So we held chemo today as my oncologist tried to figure out what’s going on and to set up a game plan. If rest, not chemo, makes the pneumonitis worse then chances are the chemo isn’t causing it. It also wasn’t touched by the heavy handed antibiotics so it’s not an infection or from working with sick patients. We checked in with my radiation oncologist to see if it could be related to the radiation I had in May. Sure enough, she confirms that radiation pneumonitis shows up around three to four months after radiation and she is confident that’s what’s going on in my lungs. So instead of getting another happy week off chemo, feeling better, I start back up tomorrow.
One comforting thought is knowing that chemo is working to shrink the nodules. All the mess of side effects are bearable if they’re working towards getting rid of the cancer. I’ve also been super encouraged as of late seeing God working in the lives of lots of people around me. It’s been super visible and tangible, impacting change in people’s lives obviously. I’m seeing it not just in my body but in my heart and in the lives of people around me more and more frequently. I’ve been doing some major wrestling with God this year. The whole, “I’m cancer free! Wait, just kidding still stage four cancer” thing has really thrown me for a loop. I was so mad at God and doubting everything. But I’ve been really wrestling with these things and trying to soften my heart. Autopiloting through life is great but it’s not really living. So I’m trying to process through some deep things and start living a fuller life again. Anger isn’t a good thing to hold on to, especially not when it’s connected to the source of being positive, having hope, and living life to the full. As I began to thaw out my heart was when I began seeing God work and impact change in the lives of my friends and community. It was perfectly timed encouragement, God still works in the dark and impossible situations. Sure, you can tell me it’s a coincidence, but I don’t have the space or luxury to believe in coincidences. I chose to believe that wrestling with God through deep, dark things is the whole point to life. To see how deep His love goes. I challenge you to take the darkest places of your life and heart and let Him show you what His love looks like in the very depths of it.

By way of encouragement to you, I want to share something else that has greatly encouraged me. Before my CT scan I had a couple of friends that decided to pray for me every hour on the hour for the twenty four hours up until my scan, including through the night. One of these friends shared with me a vision she had while praying for me. She said she had told the Lord that she would pray for my healing every hour until He told her “ok I will.” After which, she would thank and praise Him every hour until my scan. Two hours before my scan she still hadn’t heard from the Lord. She said she got irritated with Him as to why he hadn’t said He would heal me and started to doubt that He would. She has been on a little bit of spiritual high lately and during her daily quiet time has been having a vision of herself, running (not just walking) on the water with Jesus. This particular morning while praying for me she was sprinting like the Flash, dodging swells and breaking through cresting waves unaffected. All of a sudden a huge wave hits her from the right completely unaware and she feels pain and it trips her up. She looked to her right and the wave had rebounded and hit her again and again. She said to herself “this is unusual” and asked the Lord “what is this?!” He replied, “it is your unbelief that Amy will be healed. Turn to it and start praising me!” She turned to the huge, towering wave and began singing the song, “Sing a Hallelujah” (I encourage you to look it up on youtube if you are unfamiliar with it). As she sang, she said the wave got smaller and smaller and turned into a swell and then went flat. As it flattened, she said she saw an army of people. All of them were also praying toward the wave with hands outstretched in ernest. She asked the Lord who they were and he told her they were other people praying for me and praying against unbelief. She said she felt very humbled by how many people were also praying in the same way. She asked me if this resonated with me at all or could be true and I almost laughed even though I wanted to cry, of course it does!! I still believe the Lord will heal me but just like my friend, and I am sure many of you, I have been wrestling with unbelief. A different friend sent me a song and one of the verses says “You fight for the ones you love, and You win every battle you fight“. I believe that is truth! He is not powerless in the face of cancer, He is powerful! He is not powerless in the face of doubt, fear, delay, instead He is powerful! Just you watch! This isn’t blind faith or wishful thinking or misplaced expectations, guys. This is real life! Realer and deeper than the day to day grind and autopilot. He is doing something good. My life is going to prove it!

4 thoughts on “The Grind.

  1. Doubt and unbelief aren’t even in my thoughts when it comes to you…He is able to do more than we ask or think. You have an Army of Christians praying until this Faith challenging chapter of your life is victorious and all the lives God wanted to touch have been healed. Asking again and again for side effects to end. Love you Amy

    Liked by 1 person

  2. Dear Amy, as I read your blog I thought about our war heroes with their medals across their chests. How proud and grateful we are to them for what they have given up and/or lost for us. What do they wear underneath those proud uniforms and medals? Scars, wounds, hearts and minds that have tasted red hot war. Here’s the interesting part; most of them enlisted! Do you see yourself? You do have one huge advantage: Your supreme leader is the mighty God, the declared victor who has guaranteed; you win. He never says,”hang in there, i’ll Get back to you. He does say “I am with you all the way. There is a victors crown and a rich reward and most of all God puts his battle worn hero’s on display as His trophies! What a choice child of His you are; being chosen to bear all the ugliness of war proves you are His most valued soldier. We on the sidelines stand in awe and hold you up in constant love and prayers.❤️

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