It’s been a while. I’ve been working out, lifting heavy things, enjoying margaritas, laying in the sun, lots of friends, even went to Cabo with one of my best friends and her family. That’s the good stuff, spring in full swing and summer just around the corner. There’s been a fair dose of bad stuff to go with all the good, however. I had to start chemo pills again, I had radiation on my right lung and it turns out I’ll be on chemo indefinitely. How did I get here? Is the cancer “back”? What’s next?
The last post ended with a PET scan, turns out it was positive. Some lil nodules in my lungs faintly glowed with the radioactive isotope. My oncologist referred me to my radiation oncologist who agreed to radiate the two nodules, one in my right lung and one in my left lung. “No big deal,” I said to myself, “let’s get rid of these nodules!” I knew if radiation didn’t work then we’d just do another surgery to get them out. Then things got dark… again. I’m so sick of bearable circumstances turning worse instead of better.
The radiology report and PET scan report were somewhat inconsistent as to the location and size of the nodules. So my oncologist went back to her favorite trusted radiologist to determine exactly how many nodules there were and where. When you’re planning to do radiation, it’s best to be specific. My oncologist called me after sitting down with him and going over the scans “slice” by “slice”, and informed me there were actually four nodules instead of two. My stomach dropped. It wasn’t just “a couple nodules no big deal” there were now four and this means we need to be a little more serious about radiation working. She asked me to start taking my chemo pills again. I assumed, maybe optimistically, that the only reason to start chemo pills was to magnify the effects of radiation, as I’d been told in the past. What really makes this the cherry on top of the sundae was this news came the day after I was cleared to go back to CrossFit a hundred percent, push myself as hard as I wanted and lift as heavy as I could. If you remember my previous posts about chemo pills, they make me feel miserable, twenty-four seven nausea, and the hand foot syndrome where the chemo leaks into the soft tissue on the bottoms of my feet and palms of my hands and it’s really painful. It also makes me really tired and lightheaded when I push myself in workouts. Understand, this is disappointing not just because I’ll feel bad all day for two week increments while taking the pills, but because since my surgery in December, my one hope was to have some time to devote to CrossFit before going back to work at the hospital. My plan was to have the month of April to go into the gym and work out twice a day and coach and get strong and feel good and work hard and be with my friends and everything CrossFit! Instead my one month of feeling good before going back to work would be converted into feeling horrible on chemo and having five sessions of radiation.
My radiation oncologist and her team of radiologists and physicists (because radiation is so sophisticated now that it’s literally a science involving physics) had some trouble planning the radiation. The problem is the nodules are so dang small! The largest one is only five millimeters. The regular CT scan is for diagnostics, the resolution is very high to help you visualize things clearly. It visualizes a “slice” every three millimeters or so. The CT scan they use to plan and map out radiation has lower resolution, it doesn’t need for things to be visualized as clearly, but it takes a slice every millimeter. The radiation team had difficulty finding the nodule in my left lung consistently, even with the specific notes from the radiologist. They sent the planning CT, with millimeter slices to him to go over and identify the nodules he had located. This is where plans changed.
As it turns out there are “multiple” one to two millimeter nodules that hadn’t been reported or seen in the diagnostic CT. The diagnostic CT had picked up one of them but had missed the rest. They had conveniently been small enough to hide between the three millimeter slices but were able to be seen when you collect images every millimeter, naturally. At this point we don’t know how many “multiple” is so we’re doing another CT scan to get to the bottom of this.
In the meantime we went ahead and did radiation on the five millimeter nodule in my right lung. What is radiation? It’s basically directing a laser, programmed to a certain tissue depth and searing the tissue there, aka burning a hole in my lung where the nodule is in the hope of killing it. It was risky because the nodule is on the inside border of my right lung, right next to my esophagus and trachea. Which means the radiation will most likely be absorbed by those structures as well. Side effects to watch out for include, shortness of breath, pain with breathing, and difficulty or pain swallowing. I got through my five sessions of radiation without noticing much of a difference in my life or my breathing. I was able to still workout at the gym without difficulty, often only an hour after radiation. The radiation therapist always praised my breathing, he said there was minimal movement of the nodules with my breathing and that helped minimize the damage to my lung. You can image having a laser sear your lung if you’re breathing heavy or deeply, that’s a lot of lung movement and a lot of tissue getting burned. (Another prop to CrossFit for conditioning my lungs so well!) Other good news is my nodules hated the radiation and responded really well. So we know that if the other nodules continue to grow radiation is a good option. The bad news is there’s too many to continue with radiation right now, it would be too damaging to my lungs. Which is how we get to the indefinite chemo part.
Radiation targets a precise nodule at a specific location. Chemo is systemic, it affects all rapidly dividing cells, or all tiny lung nodules. One problem with chemo pills is that the nodule we removed from my lung with the surgery in December, was able to grow from three millimeters to almost seven millimeters while I was taking these same chemo pills. That says my lung nodules have the potential to be chemo resistant. So we’re going to keep a close eye on my tumor markers and the size of these lung nodules. If the tumor marker goes up or if they continue to grow I’ll have to go back to the heavy dose IV chemo. This is my one dread scenario. I HATE that chemo. HATE IT. It steals my life. I’m couch bound for a week with nausea, diarrhea, pain, vomiting and fatigue. The idea that I would have to live one week on a couch one week trying to be normal for an indefinite amount of time is … are there words?
I’ve been very affected by all this. Just sad really, almost depressed. I had a friend ask me how I’m doing. I replied, “I’m ok. I’m not good by any means, but I’m ok. I’ll always be ok because I know Jesus and because of that I have hope.” I heard in a podcast the difference between optimism and hope. Optimism is circumstance dependent, staying positive for a good outcome. But hope is independent of circumstances, staying positive despite circumstances. Ultimately, like I’ve always said since day one, hope is a person for me. As long as I can continue to believe that God loves me and is good, I can have hope despite my circumstances. I know for a fact it’s still because of peoples prayers and a good, loving God that I’m ok. I know this because nothing in my life has gotten better and yet I feel better about all of it. I’m still sad, I can burst into tears whenever I think about how hard I’ll have to keep fighting to have a normal life. But I think God designed me from birth to fight. My body has been so resilient, my will is iron clad, my mentality is stubborn and focused, my spirit is even keeled and peaceful, and my heart is always love driven. I’m a damn good fighter. So the fight still rages!! Please continue to pray and walk with me in the long tortuous valley. (If I sound a little repetitive, forgive me. I need to say this to myself over and over and over. I’m a very skeptical and untrusting human. I’m reminding myself of what is actually solid and true. This scary stuff, that’s what’s not real.)
The next week will say how many nodules I have, if the nodules have grown on chemo pills, whether I do IV chemo or stay on the pills, and I’m meeting with a colorectal cancer researcher to see if there’s any trials I fit into.
But the real take away from this post is that I went to Mexico and I’m really tan now. Tans make everything better. God gets me.