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 start writing this from my hospital room on day four of a second unplanned admission in the same month. And I also didn’t think that a week later, I still wouldn’t be finished with it. 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.
Thursday – BJH
As anyone who has worked in an ER would know, “Chest pain” were the magic words. In no time I was in a triage room being interviewed, EKG’d and having my blood drawn. Not long after, I was in a room. Within an hour I was in a CT scanner. All the while, I still struggled to find a comfortable way to lay on the stretcher or the CT scanner. Eventually, after looking at my records, speaking with me about the underlying condition, and consulting oncology on me, I was told I was going to be admitted. It was bittersweet; I mean who wants to be admitted to the hospital, but at the same time, we were finally going to get something done, or so we hoped.
Since I was stable and just waiting on a room, I was moved to the hallway to await my upstairs transfer. It’s amazing how busy that emergency department is! And really, I didn’t wait too long. Just before they came to take me a to a room, the oncology team came and visited with me for a few minutes. They explained that they’d like to admit me and do their own tests and hopefully get me started on chemotherapy. Finally, someone was doing something.
The rest of Thursday was uneventful, so we’ll skip a head a bit.
Friday (Test Day)
Friday was a full day of testing. I was scheduled for a bronchoscopy (to sample the growths in lungs), another biopsy of my leg, an echocardiogram, and an MRI. That also meant I had to go a good portion of the day without eating. Probably the biggest difference I noticed having these procedures at BJH instead of other places was the number of people involved… it was easily double, sometimes triple what i had experienced before.
The worst part of all this was not that it was all repeat testing, though that was annoying enough on its own. The worst part was the pain and discomfort it put me in. The bronchoscopy came with a small bronchoalveolar lavage (BAL) where they literally wash out a small portion of the lung. This caused me to cough excessively when I woke up from the procedure. The cough took several days to get better. During the MRI, I struggled between the pain in my leg from being locked still for over an hour and suppressing the urge to cough from the bronchoscopy. It was truly miserable.
The Waiting
It was now the weekend and time again to play the waiting game. They couldn’t start treatment until they have confirmation of my diagnosis. And so I waited.
Saturday.
Sunday
Monday
Tuesday.
I thought I would be waiting forever. This hospital room and hospital food had become my new reality. I had several visitors during this time, which, in a way, made it the most pleasant part of the stay, but the pain in my leg was the reminder that always brought me back to the reason I was there in the first place.
As a “cancer patient,” I was subject to a few new rules that didn’t exactly fit me yet, but would later. That included no Tylenol and no NSAIDS. Now, there are good reasons for this especially after you start treatment, but that didn’t change the fact that I had relied on these medications to help me with the pain for weeks now, and adjusting to being without them was not going well. I went from taking 10 mg of oxycodone at home to over 80 mg in the hospital, and still not feeling much relief. Opioids just don’t work very well.
Finally, in the midst of visitors and arguing with nurses about pain treatment strategies, on Tuesday afternoon, oncology came in to say, “today is the day.” They still didn’t have a precise diagnosis, but they were sure it was a sarcoma and they knew that the regimen “AIM” (Adriamycin (doxorubicin), ifosfamide, and mesna) would be effective, so there was no reason to wait any longer. I would start chemotherapy that evening.
Chemotherapy
I received “the red devil,” doxorubicin, first. Ironically, I seemed to get fewer side effects from it than the ifosfamide, despite the scary nickname. But what an appearance on that drug! Dark red, delivered in two syringes. It was interesting to see if nothing else. The second part was the torturous one, that seemed to get worse every day I received it. The ifosfamide started with a liter of fluids to protect my bladder. This takes almost an hour on its own and makes you have to get up to go to the bathroom. Then it’s a 15 minute infusion of mesna, which isn’t that bad except for further delaying the worst part of it all, the ifosfamide, which starts next and goes for four hours. After that’s done, you have another dose of mesna, then a few hours off the pump before a final, third dose of mesna 8 hours after ifosfamide starts.
It’s a marathon of beeping pumps, running to the bathroom, nurses prodding and asking you questions, collecting your own urine for analysis, and sleeping on edge all night. Not my favorite way to spend my evenings from 6pm to 2am or so.
This went on for four total nights, and by my discharge day (Saturday) I was simply miserable. I was in a lot of pain with my leg, the medications had made me feel like total crap, and all I wanted to do was sleep. It was the longest day and longest car ride home ever.
After a Sunday of rest, I was feeling a bit better. My little cold with nasal symptoms and cough was getting more and more bothersome, however. I attempted some work-from-home on Monday and went into the office on Tuesday and Wednesday, but I went home early Wednesday not feeling quite right, which is a silly thing to say given how everything has changed. Nevertheless, this was different.
Febrile Neutropenia
I went home and took a nap and felt a bit better. Just a bit tired I presumed. Later I took another short nap, just before bedtime, and woke up feeling a little hot. I decided I should take my temperature. 100.4 F in one ear and 100.8 in the other. I was annoyed to say the least… this was the cutoff for suspicion for febrile neutropenia.
Febrile Neutropenia – Febrile neutropenia (FN) is an oncologic emergency defined as a fever in a patient with an abnormally low count of neutrophils (a type of white blood cell). Because neutrophils are crucial for fighting infections, their absence means even a minor infection can rapidly become life-threatening.
I called the after hours oncology call line, but I already knew what they were going to tell me. I packed a bag and called my dad to prepare for a ride to St. Louis. Sure enough, when they called me back, I was instructed to go to the nearest ER. I may have disobeyed that slightly; I wanted to be back where I was familiar and where my oncology team was, so we went all the way up to BJH ER again, where we had just been 2 weeks prior. The ER was packed this time and the experience was quite a bit different, but eventually we made it in and up to a room.
I was diagnosed with human metapneumovirus (HMPV), given fluids, and prophylactic IV antibiotics. Thankfully, it wasn’t anything more severe, like a bacterial pneumonia. Still with virtually no immune system, the virus proved quite difficult. I often felt like I was “drowning” in snot. I spiked fevers a couple times a day, often causing renewed panic in the healthcare team. All in all, I was there another 5 days before finally being discharged on Monday (Memorial Day).
One good thing started to happen during this hospital stay; my leg pain started to improve immensely. I didn’t have to ask for any extra pain meds during my stay, and once I got home I started to wean myself down even further. Friday, May 29th, I didn’t take any pain meds. An amazing turn of events!
Now
In the days since my discharge, I’ve continued to undergo further changes. I’m still having some lingering symptoms from the HMPV, which is obnoxious, but I’ve also developed a very unpleasant feeling of cold all the time. Worse yet, my hair started falling out. This wasn’t unexpected, and I thought I would handle it okay, but by Tuesday my beard was so sparse I felt I had no choice but to shave it. It was the first time I had done so since… I don’t even remember. Sometime in college. Undoubtedly since before we were married in 2015. I didn’t even recognize myself in the mirror. I don’t consider myself particularly concerned with vanity, but this was different. When I looked in the mirror, I saw a sick, beardless, sunken-eyed, stranger. I was nowhere to be found.
I sit here today, on Saturday, finally finishing this update nearly a week after I started it, trying to rest before we do this all again next week. On Monday, I am getting a port placed, which is very welcome compared to getting poked and prodded a million more times. Wednesday I am visiting the oncologist in her office and if all goes well, I will be direct admitted to BJH again shortly thereafter to start my second round of chemo. Hopefully, this time I can stay healthy and not end up with round two in the hospital.
I’m thankful to everyone at work, in the community, and especially my wife Mary and my parents who have helped pick up my slack while I’ve been unable to do what I normally do. I’ve never been as helpless as I am now, and I can’t help thinking about the old adage: “It takes a village to raise a child.” While it’s not a direct analogy to my situation, I am thankful for the support of community. I may be an adult in no need of raising, but I am in need of all the love and prayers my gracious community is sending my way. It’s humbling to be in the position I’m in, but I’m looking forward to recovery. Thank you all for reading.
