A New Normal

In the past, when I learned of someone having stage 4 cancer of any kind of, in my mind it was just as much a gauge of their time remaining as anything else. I would like to apologize to anyone that I made that assumption, because I was wrong. Turns out that is not the case. I, like many people, didn’t show any symptoms until the cancer spread to other parts of my body. I skipped right past stages 1, 2, and 3 without noticing and went to straight to stage 4. Alex Trebek said it best in a recent interview, “I've got stage 4 cancer, okay? Not stage 1, for sissies, that's just beginner's cancer. I've got advanced!"

Most of my first week, of what we were told was our ‘new normal’, was spent in bed. That wasn’t exactly the sort of normal we ever wanted but once I was back on my feet, it didn’t take long until we were back at work and learning what I could and couldn’t do with my special lungs and heart. At first it wasn’t very much, and I had to build back up to doing basic things like taking stairs and, as miserable as it seems, my first goal was to get back to a point where I could cut grass. I did eventually get there and, once again, I hate cutting grass.

Through all the events that led up to the diagnosis, everything moved incredibly fast and we did well, in spite of it, to take things head on as they came. It wasn’t easy by any means but when you don’t know what lies around the corner and don’t have time to contemplate it, there’s a lot of bliss in the ignorance. That bliss remained even after I learned from the surgeon about my diagnosis, because I actually did a pretty great job avoiding any google searches for any and all things cancer related. For a while at least. I had done well by listening to the doctors so far, so why stop now? Plus, what I learned on the phone call was more than enough for the moment.

Aside from that stage 4 bomb that was dropped during the diagnosis call, I was given a little bit of hope from what we learned. The non-small cell version of my lung cancer (NSCLC) was the not-as-bad strain and there was a better chance of it reacting to chemotherapy than the small-cell alternative. But not-as-bad is a relative term. Along with the glimmer of hope, the frightening part of what I learned is that NSCLC, at this stage, was also often found in the brain. It was for that reason the doctors were anxious to have an MRI scheduled to see whether there were more tumors. Easier said than done. Between the insurance pre-authorization and the limited locations in Baton Rouge, it was tough to find an opening. One opened up in another city and I was be able to lay down to hear the wonderful sounds of the MRI machine the next week.

After I was given my diagnosis on Wednesday April 17, 2019 several things happened, and time began to slow down again. The time between learning new things began to get longer and waiting for information seemed to take forever. Because of this, for the first time in a long time, I immediately had plenty of time to reflect on my situation and think about how much it sucked and worse it could still get. The ignorance we had in the hospital faded and gave way to the anxiety of knowing exactly what finding more tumors might mean. So, in a solid attempt to go back to normal and get in the flow of things, Meredith and I went back to work. Looking back, it seems silly to pretend but, while it was helpful, work wasn’t even close to the main thing on our minds.

While we fell back in the real world of work, fielding calls, and hosting visitors who we enjoyed spending time with, a stressful situation got a little more interesting when Cigna, despite several requests, denied the pre-authorization for a PET scan. And since my doctor requesting the service was not an Oncologist, the insurance company did not see a medical need for the scan. I didn’t learn this until much later but part of the reason for their denial included something along the lines of – “Well it’s stage 4, so what’s the point?” Yikes. As much as it sucked to be denied the information the detailed scan could show, it was chalked up as superfluous and we moved on. Plus, since my doctors were confident in the diagnosis, regardless of what else they found it was, as they put it, “already as bad as it could get.” Which somehow actually made sense. By this point I had heard that saying a few times along with the analogy of the horse being out of the stable.

Being denied that PET scan really wasn’t the end of the world though because within 48 hours of learning of the diagnosis and 24 hours from when Meredith contacted MD Anderson, we were already coordinating with a new patient intake person to get all my new medical records in order and finally had something to which we could look forward. It was a new and weird experience filling out the plethora of health questionnaires because I was at a rare cusp of not having any medical history but at the same exact time having a ton of health issues. Example Question: Do you have a history of heart palpitation? My answer: Kind of. Not really a history per se, but it happened a ton last month. It was a completely different experience that I took for granted beforehand and now any normal visit to the doctor would be a long list of issues.

But, with my lung cancer diagnosis that didn’t really make any sense for a 32-year-old, I was scheduled for an appointment at one of the best cancer treatment centers in the world in just over one week. But not only was it at the best place, I was scheduled to meet with one of the best Thoracic Oncologists in the country. And, since I was going to MD Anderson so quickly, all Baton Rouge doctors wanted to wait to see what their opinion was. What was meant to be a second opinion on treatment options would now be the primary Oncologist. I felt a lot of emotion about heading there but mostly I felt extremely grateful and important and hopeful since people wait months and sometimes years to get an appointment there. We were ready.

It had already been a long week and a half. We still had not talked to a single Oncologist but it was time for my MRI. The scan itself was fairly uneventful other than the awful sound that was almost covered up by the headphones they gave me that were blaring 98.1 radio commercials. The 30 minutes that I was in there went by quickly and just like normal, I would, of course, have to wait a few more days for the results.

It was during one of those few days when I finally gave in to my curiosity of why the doctors told me not to search for anything and typed “non-small cell adenocarcinoma” into Google. And kudos to Google for quickly putting the information in my face, it didn’t take more than a moment for me to see enough to stop reading and put my phone down. All I managed to see before my stomach dropped was that what I had was not a curable cancer. That was more than enough to bring me down. I can’t begin to explain the thoughts that ran through my mind but, needless to say, I was anxious to talk to the resources at MD Anderson.

I was listening to Technotronic's "Pump Up the Jam" on my way to work the following Monday morning in a mostly successful attempt to brighten my mood when I got the results from my MRI. I was prepared for more bad news and was ready to continue to move forward. The same person that I knew from college, who helped operate on me, and who made sure I was looked after post-dispatch was who called to tell me that they looked at the results, both with and without contrast, and there was no evidence of anything other than a normal-looking, unremarkable brain. The cancer hadn’t metastasized on my brain yet. I fought back some tears through the rest of the conversation and while I called to tell Meredith when all I wanted to do was hug her. But I also learned one more important detail on that MRI call that would prove to be vital. There was one more outstanding test that was ordered when the primary tumor was removed. There was a section of tumor in Phoenix, AZ for molecular testing to see whether there was a certain gene mutation that may have allowed my cancer to grow. This would determine specifically how my cancer could be treated. I would, of course, have to wait longer before finding anything out.

During this ordeal, there has been a particularly challenging aspect in relaying news to people, and in this instance specifically. The MRI and molecular testing was definitely not bad news but, like I said, it wasn’t good news. I was absolutely relieved with the MRI result and hopeful of this new test, but I couldn’t get too excited that there were no tumors on a very scary part of my body. There were still very scary cells virtually everywhere else. No news could change the fluid, which had tested positive for NSCLC, dripping out of my heart into the plural space of my stomach and the metaphorical horse running around outside of the metaphorical barn. It didn’t change the fact that it isn’t curable.

Unfortunately, we couldn't just keep talking about this forever. The more we got used to everything new, the more our normal changed and we actually had to take action at some point. All the tests that could be done in Baton Rouge were done and it was finally time to start looking at treatment. Enter MD Anderson.

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I promise to not wait this long before posting the next entry. While finding the time to write this has been challenging, the writing has been therapeutic and I hope that by telling my experience I can give a glimpse into our scary, fun, grateful, not-so-normal, awesome life.