As always, I have been negligent about blogging. I left off with the possibility of radiation looming. My pneumonitis had resolved and all the nodules in my lungs were no longer visible except two, which had managed to grow. It meant I could pursue a course of radiation, via “Cyberknife”. The Cyberknife can learn and match ones breathing pattern and hone in on nodules 1-2 mm w/ 200 laser beams. (Futuristic, I know.) But of course, it can’t be simple and straightforward, no no no! My cancer has to be obstinate and difficult! One nodule is millimeters away from my esophagus and aorta and the other nodule is in the lower part of my lung, which moves the most with my breathing. Because they are still small (5-7mm) we need to “tag” them, in order for the Cyberknife to be accurate. They get tagged with gold “seeds” the Cyberknife can lock in on and ensure the least amount of damage to my esophagus and the most accuracy with lung motion during breathing. An interventional radiologist will inject gold into or very near where the nodules are with a needle. During the lung “tagging” there is risk of a collapsed lung and nicking my aorta or perforating my esophagus. FUN! I met with a radiation oncologist via zoom who specializes in Cyberknife radiation and he had agreed to treat me and my insurance had already approved my treatment. It wasn’t going be without difficulty or risk, however.

The next step was getting the getting the gold seeds injected. I met with the interventional radiologist who had performed my lung biopsy before my lung wedge resection surgery over a year ago. I knew he would not be excited to see me since that procedure had caused a pneumothorax and he hadn’t managed to get a good sample of my 7mm nodule despite 2 hours of attempts. But he’s honest, highly skilled, good humored and I just plain like and trust him. When he entered the room I could see on his face that he wasn’t pleased with the scenario laid out for him. However, it wasn’t for the reason I assumed. “Turns out, upon close inspection of your most recent scans of the left lower lobe, where I was told you had the two nodules, I don’t see two. I see five.” My stomach dropped. “I understand this might change things for you.” Ummmm, yeah. Yes. Yes it does. I know it means that the radiation oncologist wont want to perform radiation. Two nodules is fine, but not on five nodules, as that damages my lung too much. The interventional radiologist although willing to tag all the nodules, recommended more systemic therapy, i.e. chemo, first. I knew my oncologist would agree. I even agreed even though I HATED the idea. Upon inspection of my scans for the last 6 months turns out you can see all the tiny tiny tiny nodules they were just so small that they were missed. Oh, and turns out there are three more for a total of eight nodules in my left lung. Too many for surgery or radiation which makes chemo the most viable option. But what chemo to test out is the question. It was clear my body wasn’t tolerating Folfiri anymore and it wasn’t even working.

Around the same time I had initially met with the radiation oncologist about radiation, I touched base with my clinical research oncologist. She’s on the forefront of research with colon cancer and knows all the available clinical trials and experimental chemo out there. She had suggested some possible alternative chemo regimens that would potentially have milder side effects. In her mind, I can only manage my cancer and in the best case scenario prevent it from advancement. So My oncologist began work with her to come up with an alternative to the big gun chemo I had been taking.

I was started on Lonesurf (I’m all about the name it’s like lone star, and oceans… it vibes with me.). The problem with Lonesurf is it isn’t for shrinking cancer or killing cancer it’s for cancer that is resistant to chemo and its purpose is to stop growth of cancer. Its purpose is the definition of maintenance chemo, stop disease progression. With how aggressive my cancer has shown itself to be and with my poor response to all maintenance chemo in the past, I, personally, wasn’t too hopeful that it would be effective.

At this point, Ive been on two rounds of Lonesurf. I’ve been able to tolerate the correct dose. The side effects are more tolerable, moderate, constant nausea, some vomiting, lots of diarrhea and the worst fatigue!! But I’ve been able to be functional! I workout three to four times a week and can even manage a descent showing on the leaderboard. I’ve started writing curriculum for a coaching program to equip coaches better to address movement, injury, and strength imbalances. I’ve been able to take on more physical therapy/personal training clients at the gym and coach more classes since I don’t need to be drugged into unconsciousness every other week. Where I didn’t have high expectations of Lonesurf being effective, I’ve appreciated the break and the semblance of a normal life. I’ve got most of the world fooled into thinking nothing is wrong. As the pattern with my cancer goes, if I’m feeling good it wont last long. Like clockwork, last week’s blood test shows my tumor markers are up, the highest they’ve been in a year. This indicates that my cancer activity is increasing, a normal response to chemo that doesn’t work. I have a CT scan today and I’m expecting it to show growth in all eight of my nodules.

My scenario is bleak from the outside. I’ve got eight nodules in my left lung that refuse to respond to chemo and continually threaten to spread elsewhere in my body. My oncologist even joked about needing to remove my left lung. Should this scan show more growth and deem the Lonesurf to be ineffective I’ve got three options. At this point in the game, having options is fantastic! The first option is an experimental chemo regimen, probably not covered by insurance. Another option I’m looking at is going ahead with the radiation at the risk of long term pulmonary fibrosis and reduced lung capacity and more pneumonitis. The final option we may have to consider is surgery with the possibility of removing the lower lobe of my left lung. Who knows what the future holds! Life in the unknown is so exciting. They say I wont ever be rid of this cancer. However, I still don’t subscribe to this perspective. I just think the Lord is doing bigger things and miracles and impossible situations are His territory. Most remarkable of all, I’m not scared yet. I’m still very anchored to hope and stubbornly believing this is just a dark tunnel I’m walking through and pretty soon I’ll come out the other side. Stick with me on this adventure guys, its about to get even better! I may just have to start blogging more!

10 thoughts on “Meanwhile.

  1. Continue being positive and steadfast in your belief that god has more in store for you! Praying, and you sure did have me fooled!! Your strength is so admirable!


  2. Amy, I always wonder, “How can I encourage Amy?”. But whenever I read your updates, I am the one who is encouraged. Blog on! And about that “Stick with me on this adventure…” comment. There is no shaking us. We are sticking with you till…forever! We love you sister.


  3. So sorry about this stubborn cancer. We will continue to stand with you in prayer. The Lord knows what he’s doing. We love you very much. 😘


  4. Sun family is hanging in there with you and saying our prayers. You’re amazing! Love you and appreciate you.-carrie


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