I didn’t think it would take this long for me to find the time and energy to bring a second update to the world on my cancer journey. I also didn’t think I’d be writing this from my hospital room on day four of a second unplanned admission in the same month. Let’s just say, plans and expectations don’t get a lot of respect in this new world I’m in.
Since April 29th, the last time I wrote, it’s amazing to see all the things that have changed… as well as some things that unexpectedly have not. I’m not sure I can cover everything in one post, but I’ll do my best to make a solid update.
The First ER Visit
Like all good, dramatic stories, things often have to get worse before they get better; so naturally, that’s how the month of May started for me. At my last update, I had just finished a lung and thigh biopsy at Mercy Washington on April 29, which carried the risk of a lung collapse or infection, even though those risks were low. On Monday, May 4th, I had my first follow up visit with Dr. Ali. At this time, there was nothing solid back from the pathology, other than an unofficial opinion that the samples “looked like sarcoma.” This meant that this visit was another unfruitful one, and that nothing would be done without a definitive diagnosis.
This was a bit difficult to swallow, for obvious reasons. We already have the knowledge that this cancer is threatening my life, so having no timeline for treatment felt almost like capitulation. We were giving it free rein to wreak havoc on my body. I was even told at this point what the most likely treatment regimen would be (which turned out to be accurate). The issue was that the only place I could really receive this treatment was at Siteman Cancer Center / Barnes Jewish Hospital. Now, this wouldn’t normally be a problem, except my insurance refused to let me see the sarcoma specialists at BJC without a final diagnosis. For whatever reason, Mercy also would not start treatment without the final diagnosis even if they sent me to one of their cancer hospitals in St. Louis. We were again, completely helpless.
By this point, the pain in my leg was becoming quite severe. It was interfering with my gait, toileting, and even sitting and standing. I hated to ask, but I did come out of that office visit with a prescription for oxycodone and a referral for palliative radiation with Dr. Spencer. I figured if nothing else, it would help me get some decent sleep, something that I knew my mind and body desperately needed.
The Elusive Rest
That very night, early on Tuesday, May 5th, I woke to a sudden sharp pain across my chest with every breath I breathed in. It was worse with deeper breaths, but it happened even with the shallow breaths. This was not something I could sleep through, and knowing I was less than a week out from my lung biopsy, I was concerned I was having one of the several side effects from that procedure. I knew I should go to the Emergency Department.
Pulmonary Embolism – a blood clot that lodges in the lungs, causing shortness of breath, pain, and difficulty breathing. Can be life threatening.
Pneumothorax – commonly known as a collapsed lung, occurs when air leaks into the space between your lung and chest wall, where it does not belong.
I called my dad so we wouldn’t have to wake up the kids in the middle of the night. He drove me to the Salem Hospital Emergency Department where I got put on the chest-pain protocol. Anything too severe, like a pulmonary embolism or pneumothorax, were quickly ruled out. I was diagnosed with a small pleural effusion (fluid between the lungs and the chest wall) and the pain was subject to “worsening pulmonary metastases”. As bad as that was, buried in the body of the report was something much scarier.
The largest mass in my lung on this day, May 5th, was double the size of the largest mass found in my lung on April 15th, only 3 weeks prior.
If there was any question as to if this cancer meant business, this answered it for good. A doubling in size of the cancer in only 3 weeks. “Since 04/15/2026, pulmonary metastatic disease has
increased significantly.” This… devil… means business. I need treatment right away; at the rate things were moving outpatient, there wouldn’t be anything left to save if we don’t take action soon…
These thoughts pummeled my mind as I sat at home the rest of that day, with pain in every breath. It was at this point that some of my friends who worked up at Siteman started telling me about an option that seemed unorthodox at best; going to the Emergency Department. The rule follower in me hated this idea. I was doing everything I was supposed to on the outpatient side, why should I try to circumvent that by going to the ER? Was that the “correct” thing to do? Well, for that matter, was making me wait though the outpatient process the “correct” thing to do either?
Mary and I discussed it. I discussed it with my parents. I discussed it with my friends. “Surely, we will have a result on the pathology soon,” we argued. “After that, we can get started on treatment.” Everyone oscillated back and forth, no one sure what the right answer would be. Every day counted, but surely the work we put in all throughout April was about to pay off? Or was I just another victim of the becoming a clown meme?
Time would tell.
Wednesday
We drove up to Phelps Health to see what Dr. Spencer thought he could do for my leg. He was great, super helpful, and put the situation into a proper perspective. He was willing to do whatever for me, but he too thought I needed systemic chemotherapy right away. He became my first healthcare provider to advise me to “present to a cancer center emergency department” if I wanted faster treatment. Soon, Dr. Ali advised the same, and he consulted with a sarcoma specialist who advised the same. There were now at least four reputable voices telling me to go. At this point, how could I not? But still, this flipped on its head our last 24 hours of rationalizing to just wait and see. We had undoubtedly become the clown meme.
I think one of the hardest parts of this was realizing that we could have and probably should have taken this route much earlier the in process. Obviously we could not turn back the clock, but it still felt like throwing away all the progress that had already been made. We were fighting the sunk cost fallacy.
Sunk Cost Fallacy – The sunk cost fallacy is a cognitive bias where people continue an endeavor—such as a project, relationship, or investment—because they have already invested time, money, or effort into it. This behavior is irrational because the past resources are gone and cannot be recovered
That evening we made a plan to go to Barnes Jewish Hospital Emergency Department, which is the only hospital on this side of Missouri that has sarcoma specialists. We would execute the plan first thing Thursday morning.
