Rumors.

I hesitate to put words to it. What if I jinx it? What if I’m wrong? But I hate “what if’s” and also this is my blog. If I look foolish here because I’m wrong, it will only serve to let you experience more of my emotional roller coaster and show you the reality of how I feel. I’m believing I’m cured. Woah, woah, woah! Cured is a big and serious word in the cancer world. I’m not supposed to say that yet. It’s only been just over two months since my surgery. I haven’t had any follow up scans. I don’t think you can use words like “remission” or “cured” for years. However, since this entire thing has been a big faith (taking as fact that which is unperceived by the senses) walk, why not just keep walking that track? Heres the back story…

I was scheduled to start “maintenance chemo” a month ago. The problem was, you might remember, my body hadn’t been tolerating chemo well. We would have needed to find a new chemo that my body could tolerate at an effective dose. At this stage of treatment that would mean going into experimental territory. Experimental simply means using a chemo that wasn’t indicated for my specific cancer to see if it could have a therapeutic effect, obviously, without guarantee of success. Do I even need to tell you what the risks and the compromise to my quality of life would be? My oncologist, being the wonderful and straight forward human she is, told me, “There really isn’t a precedent here and I don’t know what to do.” Goes without saying, I really didn’t want to do more chemo and had a sense, for the first time since diagnosis, that I didn’t really need to. My oncologist asked her panel of experts and they all agreed, as there was no measurable disease, to pursue a “wait and see” approach to further treatment. Meaning, no treatment, to just wait and see if anything shows up. I have blood tests monitoring my tumor markers once a month and CT scans and circulating DNA blood tests once every three months. We’re keeping a close eye on what’s going on. My tumor markers the first couple weeks after surgery were unremarkable, my circulating DNA was zero, and post op scans showed we had gotten all the known cancer. My next scans will be sometime in the middle of December. We’re literally waiting to see. I don’t think we’re going to see anything so I’m not really waiting. What if I’m done with cancer? What does that even mean? What does that mean for my life?! 

I get to recover from surgery like a normal person and not be rushed back into chemo and radiation! After all my other surgeries, I’d started treatments within six weeks. I’ve never actually recovered fully from surgery without feeling pretty sick from restarting chemo. At this point in my recovery, I feel great! I am two months post op. I’m off my narcotics and past that uncomfortable narcotic withdrawal thing. In truth, I hate withdrawals so much that I went off the pain meds a little early so I could just get past them and stop worrying about it. Managing withdrawal symptoms is basically a full time job. I am definitely ahead of the curve when it comes to recovering from major surgery! I’ve even returned to workouts and coaching with a mask on (which is quite a lung workout, let me tell you!). My strength is already coming back and I’m starting to push and lean into the discomfort of cardio workouts. I cough reflexively like crazy at the end of workouts and feel like I have asthma when I go a little too hard. Pulmonary capacity can be strengthened just like any other muscle. If you know me at all, you know I’ll work for it. I want it to look like I still have two lungs during training in six months. If COVID clears up I’d like to test my limits in a competition. I’m excited by the prospect of training without feeling sick and weak and look forward to seeing how much ground I can gain with my fitness.

This is where I run out of words and don’t really know what to say. Can it be that I am actually done with cancer? I am still hesitant to “call the game”, say I am “healed,” “cured” or “cancer free”. Where I absolutely believe that God will be the one to heal me and that once I am healed I won’t live my life looking over my shoulder, does that mean I have to be the one to say when that’s happened? Is that day really here? Do I minimize God’s power somehow if I call it early? Does it mean I doubt His power if there’s still a whisper that there’s more to come? What I have been saying with trepidation is I believe they got all the active cancer that was in my body and I don’t believe I am waiting for any cancer to show up. And just saying that means I risk being more heartbroken than I have yet been to date and looking very foolish if more nodules show up. I think that’s the crux of it, I’m very scared to be disappointed in the Lord. He’s been so gentle and kind to me as I stubbornly cling to Him. We’ve worked through a lot along this journey. It’s not what I would have chosen for myself or for my family or friends, or an enemy even, but as I’ve said before I’ve seen unspoken treasures.

I went to my oncologist to check my tumor markers two weeks ago. I was nervous. I didn’t really want to go. I’ve never been really nervous about tests before. It’s always seemed like it was something bigger than me, outside of my control, I trusted I was being taken care of, the path was set and I would be ok. (I don’t know how people live when they don’t understand or believe how much they are loved by God. Makes me feel sick to think about.) So to be nervous now is to say something has changed. Am I not as taken care of? Am I less loved? Is there, all of a sudden, something within my control that I can do? Well, no. So in truth, I shouldn’t be nervous. Yes, yes, it’s natural to be nervous about these things, but for me, it’s important to continue to wrestle for a bigger perspective than my own. In the big picture, nothing has changed. So practically, what does this mental stance look like? The blood test two weeks ago showed a slight elevation in my CEA (tumor marker) from 1.6 to 1.8. Anything below 4.0 is within normal limits so no big deal. But as things go with me, normally, any increase has meant an increase in cancer activity. So what does it mean? In my mental rules, I can’t let it mean anything other than a slight fluctuation. There are too many possibilities that can explain it. It could be due to lab error, systemic inflammation, my immune system responding to a virus, orrrr it could be because of increased cancer activity. Why would I commit myself to worry and doubt and focus on cancer activity and “what-if’s” over other possibilities? Instead, I am going to continue to wrestle for that bigger perspective. I am completely taken care of, deeply loved, and I still feel really good and am recovering well from a major surgery. Since life and God don’t operate independent of each other or in a vacuum, I also need to remember that the second I decided to settle my heart into a course of faith, there would be opposition to that course. Opposition to peace, trust, and joy. This season is full of it, fear, doubt and depression. Here’s the thing, peace, trust and joy are worth fighting for, so I will fight for them, against odds. He isn’t called the God of Hope for no reason, after all.

In two weeks I’ll recheck my labs and tumor markers, and we’ll schedule more scans. I should know by Christmas if I really get to start 2021 without cancer. What a dream that is! Guys, stand in peace and trust and joy with me! Let’s fight for those to reign in our lives! We all have our own versions of opposition to these things. Our own fears, doubts, and sadness. Guys, we need to fight to keep them in perspective and wrestle to have that bigger perspective of our life. Hope will always rise and there is always a dawn that ends the darkness! The story isn’t over. Your story isn’t over either.

Lobectomy.

I expected to get nervous, scared even. A lobectomy sounds like such a big deal! I mean, a surgery that removes half your lung? How does one even breath after?! After my last surgery, the wedge resection of a tumor in my right lung, I remembered vaguely (as is the way with things after surgery) having so much pain that I didn’t want to breath. As I would take shallow, less painful breaths the machine that monitored my pulse oximetry (the amount of oxygen in my blood) alarmed so loudly it repeatedly woke me up. All I wanted to do was sleep without breathing but repeatedly nurses or family members told me I needed to take deeper breaths. It was irritating because clearly, no one understood how painful it was. During that surgery they also reversed my ostomy and had cut me open from my pubic bone to my sternum for the second time so that may have played a role in how much pain I was having. But I healed. Pain is no longer an issue I struggle with so I knew that I would also overcome any pain from this surgery since the incisions would be just as invasive as the ones on the right side but this time, I wouldn’t have my abdomen cut open. So I wasn’t nervous about pain. The last two surgeries, I grieved what I would lose in strength and capacity for my CrossFit training and that was the saddest and most troubling thing to me about them. As I had already had an almost full recovery from both those surgeries, I knew I could do it again. Lifting heavy is my favorite part and I know I can get back to that. My surgeons had told me functionally I wouldn’t notice much of a difference and would be able to get back to training in only six to eight weeks. That’s a blink of time! I’d be back before people would even notice I was gone! So I wasn’t nervous about my recovery. I had already lived through two other more invasive and dangerous surgeries so I wasn’t nervous about dying. I really wasn’t nervous at all. The worst part for me was having to watch the people I love have to watch me go through it. My closest friends and family, although very supportive and happy for me, were not excited to watch me go through another surgery and watch me be in pain. I think I was nervous about the post op narcotic withdrawals somewhere at the back of my mind. I could tell I was stressed even though I couldn’t pin point exactly what the source was. I’m pretty disconnected from my emotions overall, I don’t know how I feel at any given point in time. Generally speaking, a way for me to identify unacknowledged emotions or stress is by how busy I am. Let me tell you, the week before my surgery I was BUSY.

I had taken the weekend before my surgery to go down to San Diego and visit my brothers, my sister-in-law and my nieces. My aunt and cousin came down and we stayed in a nice hotel with my parents. It was a very pleasant weekend with my family, laying by pools, sipping Palomas, and laughing. I stayed till Monday and came home just in time to drive straight to the gym for a personal training client and to coach my evening classes. I had eight to ten hour days scheduled in the gym Tuesday through Thursday and surgery Friday. I didn’t realize I was stressed until late Thursday when after a full day coaching, my gym family threw me a surprise happy surgery party. I was overwhelmed by fifty-ish masked athletes, friends and family members, many I hadn’t seen in months since quarantine began. I cried. People were shocked that they had pulled off the surprise but I was so focused on coaching and training and every thought being occupied with not thinking about surgery that I had let things slide. Suspicious activities that caught my attention weren’t investigated or questioned because I had a full plate already. I think a lot happened that week that I was oblivious to because I was focused on staying busy and avoiding how I felt and what I thought. As things in life do, surgery came as planned whether I was ready or not, processed or not, emotionally engaged or not.

I didn’t sleep the night before. Not because I was nervous but because I was busy! To be fair, I needed to be up at three in the morning to leave by four, to get there by five to start the surgery at seven. I’m someone who would rather not sleep than wake up early so that’s exactly what I did. I had some friends and family stay over till one in the morning because they wouldn’t be able to visit at the hospital (Covid) and couldn’t bear the thought of saying good bye yet. But we finally said goodbye and I headed to my house to pack and clean and shower. I was on the gurney in my hospital gown in what felt like the blink of an eye. One minute I was laughing with my mom and the very next minute they were taking me to pre-anesthesia. This part is the hardest part of surgery for me. It’s the part where you say good bye to your family in a hurry and don’t really get a good good bye because there are people waiting for you and watching. It’s the part where the reality of surgery hits you and it’s hit you too late! Maybe it’s not that way for everyone but for each of my four surgeries that’s how it’s gone. And my heart breaks every time. It hits me that this might be the last time I squeeze my mom’s wrist and hear her voice and its too late to take all that in. I always try to be brave and smile so she doesn’t worry but I always do so through a stream of tears.

I don’t know how it is at other hospitals but the Operating Rooms at Loma Linda are through a labrynth of hallways. I always get distracted from my sadness by imagining that I am on some strange ride at Disney Land and make a joke about it to the guy pushing my gurney. We always laugh. Then I say something about how I’m glad they know where they’re going because I would be sure to get lost. Then we laugh some more. Literally, we turn right and left and roll past these double doors and those double doors, left then right, and pass people fully masked, capped and gowned, down a long hallway, the fluorescent lights whiz overhead, some of people we pass say hello, others don’t even see us, left then right, some of them walk past us casually, others dart out of the way, then we pause in front of some automatic double doors. These slowly open and I’m wheeled to a curtained area and a friendly nurse asks me my name and birthdate. If you’re going to have a surgery just be ready to tell people your name and birthdate a million times.

Pre-anesthesia waiting room is where the real waiting happens. The nurse hooks you up to an EKG so they can get a good baseline for what your heart rate is doing, it starts casually beeping along with your heart. They attach the pulse oximeter to your finger, it’s very annoying (you can’t bend your finger well). Then they put in the IV. It’s very important they chose a good vein because this is what is going to deliver the anesthesia that will knock you out and keep you out. I have said it before, I’ll say it again, I have excellent veins. All the nurses say so. This day was no different. The needle they use is huge so they numb you up first with tiny lidocaine injections. I hate them. I’d almost prefer just the jab with the huge needle because the residual numbness that lingers is just as irritating as the pain would be. Then you wait. This room is where you meet the anesthesia team and they discuss their plan. Then you wait for the surgery team to come through to confirm their plan. Then you wait more for the anesthesia team to follows through with their plan. Which in this case includes a thoracic nerve block. They lay me on my side and using an ultrasound basically inject, I can’t remember what, between the sheaths of muscle between my ribs. It was very fun to watch the ultrasound screen as the needle went in and then ballooned the tissue with the fluid then go in deeper and create another balloon. All the while my ribs and armpit are getting progressively numb. Then the OR nurses come and introduce themselves, and confirm your name and birthdate.

Between all of this I had the most amazing experience of my life. You might believe it, you might not. It’s my experience and my blog. If you don’t believe in supernatural things or a God that loves you and works actively on your behalf you might want to skip this paragraph all together. Weirdo. I feel like I have words for it thanks to C.S. Lewis. I had been reading Out of the Silent Planet, with friends just before surgery. Lewis has a way with words that just broadens my understanding of experiences in the most unique way. But anyway, in this book he describes eldil (we might commonly call them angels, heavenly hosts, messengers/servants of God, what-have-you) and the chief eldil, Oyarsa, as shades of light.

“… Oyarsa was coming up between the long lines of sculptured stones. Partly he [Ransom] knew it from the faces of the Malacandrians [Marsians] as their lord passed them; partly he saw– he could not deny that he saw– Oyarsa himself. He never could say what it was like. The merest whisper of light– no, less than that, the smallest diminution of shadow– was traveling along the uneven surfaces of the ground weed; or rather some difference in the look of the ground, too slight to be named in the language of the five senses, moved slowly towards him. Like a silence spreading over a room full of people, like an infinitesimal coolness on a sultry day, like a passing memory of some long forgotten sound or scent, like all that is stillest and smallest and most hard to seize in nature, Oyarsa passed between his subjects and drew near and came to rest, not ten yards away from Ransom in the centre of Meldilorn. Ransom felt a tingling of his blood and a pricking on his fingers as if lightning were near him; and his heart and body seemed to him to be made of water.”

As I lay on my gurney waiting. I had the sudden sense, not identifiable by any of the five senses, mind you, but none the less, I had the sense that I was surrounded by such beings as Lewis described. But not just surrounded like I was guarded but as though the surgery had already begun. These beings were generously and fervently working on me. I felt it so strongly, in fact, I kept squinting my eyes and peering on either side of the gurney hoping to catch a “whisper of light” or “diminution of shadow” where it shouldn’t be. I felt it so strongly that my eyes kept welling with tears. I felt immeasurably grateful and unworthy and humbled, but knew it had nothing to do with me and everything to do with an army of prayers and a God who loves to prove He is everything He says He is. So yes, I sat there waiting, but it was so much more than that. This unseen work was undeterred or interrupted by the many doctors and nurses who went about their duties around me. But every minute of silence I felt the unseen presence battling at the cellular level on my behalf. This surgery was a bigger deal than I could have ever prepared for, apparently!

Surgery is a very coordinated effort with lots of moving parts, un-benounced to most, both seen and unseen. I’m still in awe of all of it. The nurses, anesthesiologists and surgeons all work together to bring about the desired result. When the different teams met up at my bedside they would joke with each other which put such a light hearted atmosphere on such a somber, serious affair. While we waited on the final finishing touches to be made in the OR, several teams had gathered around my bedside laughing about this and that. I liked it. I liked them. When they finally told me “Ok, everything is ready! Let’s head to the OR.” I said, “Oh! I’m so sorry I’ll be sleeping soon, I wish I could hang out longer.”

The rest is very fast. It’s a short road to the OR, only a couple of turns, the slow opening automatic doors and you’re there. Surrounded by everyone you’ve met over the last hour and a mass of machines and lights. “Ok Amy, we’re going to give you something to relax you a little bit then we’re going to administer the anesthesia and you’ll be asleep.” “Ok, bye, everyone!” I say as they plunge down the syringe into my IV. I hear gentle laughter as I fall asleep.

Then you wake up. Slowly, and groggily, you fight to stay awake, in and out of sleep, a nurse always just a whisper away. The pain is pretty intense but it’s all so blurry. I was fighting hard to stay awake because I knew the sooner I woke up the sooner they’d let my mom see me. I knew my mom needed to see me. She didn’t care what the doctors and nurses had to say she would want to see that I was alright and had come through it ok and wasn’t in too much pain.

Chest tubes hurt. Don’t let anyone tell you differently. It’s a half inch tube squeezing out between your ribs pressing on a nerve. Let’s not forget your ribs move with every breath which means the nerve the tube is pressing on gets irritated with every breath. Did I forget to mention I had four small one to two inch incisions besides the one with the chest tube coming out of it? Well I did. They felt exactly like what you’d imagine a stab wound would feel like. Like someone took a knife stabbed me, twisted it around, then pulled it out… five time. There’s no way that doesn’t hurt. Unfortunately, I’d already had three other major surgeries so my body tends to laugh at drugs and their attempts to control my pain. It’s amazing how your body remembers narcotics. It was as though my body said, “Only that much? That’s all you’re going to give me? I remember this stuff and I know you can do better!!” So I found the prescribed dose falling short to help control my pain and was in a constant six to nine out of ten pain for the first couple days. Yes, a nine meant I was moaning and crying and often couldn’t get more meds for another hour or two. Finally, a nurse cared enough to recommend to the doctor to increasing the frequency and staggering the narcotics with the anti-inflammatories. Pain management was a journey during this hospital stay, but we finally got it under control.

By the time I would have been able to go home my pain was controlled, four to six out of ten. But the kicker was the chest tube wasn’t ready to get pulled yet. If you pull a chest tube too early, you collapse the lung. So I was cleared to go home with my chest tube! Which is all good and fine but that means there needs to be a receptacle that needs to be emptied. But suction needs to be maintained so the only way to empty it is by sucking the drainage from the receptacle with a syringe. Putting torsion on the tube to attach the syringe then create enough suction to pull the fluid out is a very uncomfortable sensation I would rather never experience again. The next problem with going home was my bowels. Narcotics management doesn’t just relate to pain, unfortunately. It also relates to bowel performance, or lack there of. Narcotics and surgery both slow the muscle contraction of your intestines. Even though I was eating fine there was zero output reflecting it. You can’t go home until they can ensure that your bowels are moving and you aren’t developing an ileus or obstruction. The day of discharge I found myself with pain under control, a portable chest tube in place and stuck waiting on my bowels. The amount of laxatives, stool softeners, and even suppositories I had received to no avail would shock most of you so I wont go into it. Suffice it to say, the hour drive home after finally being discharged was one of the most painful and uncomfortable car rides I think I’ve ever had.

But it’s done now. All those pesky lung nodules are mere objects for scientific research. I’m still breathing. Still fighting. Focusing on recovery and trying to remember how to dream a big full life into existence. This is not a road well traveled, but I’ll keep narrating it as best I can.

Quarantine.

The week before quarantine became official in Los Angeles, I reached out to my oncologist about me working in a hospital with constant exposure to the COVID-19 virus. Even though, I don’t act like it or look like it, I am one of those high risk people. The people that would be severely endangered by infection. I wasn’t particularly immunocompromised, even though I was still undergoing chemo. The thing that made me … nervous (Concerned? Hesitant? I wasn’t scared, I just wanted to be responsible with my health) was that damned pneumonitis that I still had. You remember, the lung inflammation that was still showing up on my scans and holding me back during workouts. It had been there for a year as a result of radiation I had a year ago on my second lung nodule. Even though I was asymptomatic, not short of breath or coughing, I thought to myself, “if my lungs are already compromised, maybe getting a virus that targets the lungs wouldn’t be good for me.” I mean, the reason it kills people is it causes a pneumonia that doesn’t respond to treatment and basically causes organ failure because the lungs can’t provide enough oxygen. Disconcerting. So like I said, I called my oncologist to see how concerned I should be and if I should go on disability until after the virus runs it’s course in the hospital.

I was at a friends house at a beer club meeting (I’m the Chief Lager Officer, were very official) when she called me back. When I take phone calls, I’m a pacer. I walk circles on carpet patterns or go heel toe on a hardwood floor panel or stagger step across tiles. Naturally, I headed into my friend’s bedroom and began pacing as my oncologist casually reported on her family experience with the virus and her patient caseload. “Of course, Amy, I agree it’s a good thing for you to take time off work until this virus has run its course. But mostly because I have other news.” My stomach dropped. What news? I wasn’t expecting news. As it turns out, we had resubmitted blood for my Circulating DNA and she had gotten the results earlier in the week. Apparently, it wasn’t at zero anymore. There was a little spike, .08. I don’t really know what that means and it’s so small that in isolation it’s not of concern but my tumor markers (CEA) had also gone up slightly. With a pandemic gaining momentum, it’s no time to allow my cancer to also gain momentum. “I want to start you on irenotecan again. I know it makes you nauseous but I want to stay ahead of this and continue to be aggressive.” I swallowed hard as tears began leaking out of my eyes. “Well, yes, ok, I understand, of course.” I managed to sputter in the midst of a thought tornado.

Wearing a mask through my entire chemo session is the new norm.

I was crushed. I had just gotten a lifetime PR on my clean and jerk in the gym. Like you can read in my last post, I had been living a lot of life ignoring I even had cancer. My chemo was so gentle that I was feeling amazing for the first time since my diagnosis and had found my stride living in the unknown. I felt like I was being yanked back into the disease. Of course, I can’t just live in the unknowns of the corona virus and quarantine like everyone else, I also had to have unknowns of my cancer and go back to being immunocompromised. I let fear in, guys. I didn’t even think of what God was whispering to my heart. I felt real sorry for myself and got scared I was going to die of corona virus. That I had fought cancer so hard only to get the virus and fight like hell again, but probably lose. What a horrible state of mind!

My frequent chemo couch view

Then I went and got my chemo hoping only two out of five drugs could have minor side effects and I’d still be ok and functional. Chemo nausea IS SO MISERABLE. There aren’t words. On a scale of one to ten, one being no nausea and ten being throwing up, I had day after day, at a nine. After a week it was down to a four. I wasn’t taking my Ativan or the pre-meds because I thought the lethargy would make me feel worse. I was gagging on my spit and didn’t want to swallow water. I wanted to throw up but knew it wouldn’t make me feel better. The thing about chemo nausea is it’s generated by your brain. The poison center of your brain goes off and tells you to get out whatever you’ve ingested and nausea and vomiting is the body’s gold standard for getting the job done (that’s why when you drink too much alcohol you throw up). Well, when the poison is in your blood, not your stomach and when the nausea is from your brain, not your gut, there is no relief. The antiemetic (anti nausea) drugs keep me from throwing up so I can keep down fluid and food and not get dehydrated. However, I have yet to feel like they help decrease my nausea. I was paralyzed by the nausea and it lasted longer than I remember it lasting during previous chemo rounds. I used to feel better after five days and go into the gym and coach or go to work at the hospital. Quarantine made things worse, I think, because I had nothing to divert me from feeling miserable. I was back to a week on the couch followed by a week playing catch up with my life. I hate that lifestyle. I feel so robbed by cancer when I’m living like that. Not working or seeing my friends was just exacerbating everything.

Quarantine does mean more sun time… that basetan has come in very handy!

I had this resting anxiety coursing constantly in the background. I started having panic attacks like in college. I was being suffocated by the unknowns and I wasn’t handling it well. As I’ve said before, prayer is powerful. What sets me apart in this battle, is the army of people praying for me. In desperation I turned to my worn out duct taped bible hoping to find a verse I’d read before to comfort me. I stumbled upon Psalm 16 and found a verse that cut through my self pity and my perception of the steep cost I was paying in life. Verse 5, “Lord, you alone are my chosen and assigned portion, my cup; you maintain and secure my lot.” And like a light switch, I was ok. It was like my heart said “ohhhh yeah! That’s right, “ and rested confidently. I wasn’t going to die from COVID and nothing in my life was going to be taken from me that I was meant to have and live out. My life’s boundaries, my lot, what I am intended to posses is secure and maintained by the biggest and most powerful force that exists. Despite what a train wreck I felt like, I was shocked there weren’t tears or a major thought battle in reaching this conclusion. But at the same time, when there’s people behind the scenes praying for you everyday, you get to put energy into battles elsewhere, the spiritual leg work sometimes has already been done through other people’s prayers.

My first social distant workout in the front yard!

The battle ground for me turned back to the physical. The gnawing nausea and relentless malaise. After two rounds of irenotecan, for the first time, I asked my oncologist for a treatment break. My body had had it! I couldn’t stand the thought of my body getting wrecked again so soon. I told her about my nine out of ten nausea days, gagging on my spit and the nausea panic I was having for days after chemo. One thing we’ve discussed in the past is the tendency for patients nausea to become stronger because of psychological influences. For example, I’ll start feeling nauseous the days leading up to chemo, or driving the route to chemo, just because of the association and then it makes my day of chemo nausea even worse. My oncologist prescribed Zyprexa, to “help with my nausea” and keep it from becoming too psychological. When I looked it up I found out it’s a big hitter antipsychotic. I hate feeling super doped up but I am not mad about sleeping for two days until the worst of the nausea has past. Chemo has definitely looked different during quarantine than it has in the past.

Quarantine puzzle sessions with my best friends.

Mid May, we had new three month interim CT scans and rechecked the circulating DNA. I wasn’t sure what the CT scans would show. I knew there was increased activity of my cancer from my elevated tumor markers but we had started cytotoxic chemo so maybe we stayed ahead of it as we planned. Were there new nodules in my lungs? Or even new tumors somewhere else? I was ok with any results I got, I just wanted something definitive! I needed a new direction for the battle to go! I was sick of wearing down my body with more chemo! I wanted to have my pneumonitis resolved and the nodules to declare themselves so I could do radiation or surgery! Stay aggressive and fight like hell. Chemo was feeling so defensive and fruitless. That was my prayer, let the scan say something definitive!

We sat down with my oncologist the next day to discuss the scans and next steps (she’s so good to never make me wait long to go over the results). My pneumonitis was gone! Most, if not all, the one to two millimeter nodules in my lungs weren’t visible buuuuut there were two nodules in my left lung that had grown one to two millimeters despite all the chemo. (Side note, my oncologist let it slip just how dire things had been when I had to go back on chemo last June. Apparently there were up to eight tiny nodules in my left lung lower lobe back then! I was under the impression that there had only been six in both lungs combined!! My oncologist is wonderful at shielding me from horrible shadows and keeping me focused on concrete realities and where I need to put my energy. I would have been so disheartened if I’d known it was that bad!!!) So it was good and bad news. Chemo wasn’t working as well as we wanted it to. It was no longer keeping my cancer stable. Growth of cancer is never good news to me. One thing we know, is that my cancer is extraordinarily aggressive and the literature says colon cancer metastasis in the lungs are extraordinarily resistant to treatment. But what was good news, was that there were only two nodules to look at and the scan was definitive! A reminder that God hears your prayers and acts on your behalf is never a bad thing!

We made plans to talk to radiation oncologists and see if we can’t get radiation on these two nodules! The possibility of no more chemo for the time being and changing directions to radiation is so relieving and exciting! I was recently told that up to this point treatment has been pretty by the book, chemo, surgeries, more chemo. But we were branching off now into undiscovered territory. My age and the random genetics of my cancer makes this very unique. We don’t know what chemo will work, how aggressive do we go now at cost of depleting future reserves. If it wasn’t an adventure before, it sure is now. You better believe there’s more to this story!

Lots of quarantine handstand practice!