Wednesday, May 27, 2015

Keeping the big picture in mind

Being the ADD-scheduler I am, it drove me a little nuts that my scans and infusions were off by a week. “Wouldn’t it be great”, I thought, “if I could get them to be on the SAME week?” Technically, it would be the same week every other dose, as the scans are every six weeks and the infusions every three. I casually mentioned moving the scans to the trial coordinator, and lo and behold, they have quite a bit of latitude scheduling them! Since I was booking them the first day that I could (a Friday), they just figured I wanted to keep them every sixth Friday.

Keeping the big picture in mind

Being the ADD-scheduler I am, it drove me a little nuts that my scans and infusions were off by a week.  “Wouldn’t it be great”, I thought, “if I could get them to be on the SAME week?”  Technically, it would be the same week every other dose, as the scans are every six weeks and the infusions every three. I casually mentioned moving the scans to the trial coordinator, and lo and behold, they have quite a bit of latitude scheduling them!  Since I was booking them the first day that I could (a Friday), they just figured I wanted to keep them every sixth Friday.

Turns out, the trial protocol allows you to move the scans back a few days. Since they always fell on the Friday before an infusion, it made sense to push the scans back to the infusion week. Voila, we’re making less trips to the hospital, with the added bonus of not having to wait over the weekend to get results — or so we thought.

Apparently, the radiologist who reads my scans has a knack for being out of the office when I get them done. Several previous scan results had been delayed because of his unavailability, and while I understand they want consistency in the readings, there has to be a backup plan. What if this guy gets hit by a bus (God forbid!), or decides he would rather be surrounded by sunshine and neon rays on Duval Street than x-rays at Holy Cross?  At the very least, if being read by the same person was such a high priority, you would think that SOMEONE would, you know, make sure this guy is going to be at work that day.

As you can probably guess, the latest scan results got delayed, so after moving the scans back to avoid having to wait over the weekend to get results… we waited this past weekend for the results.  And the 3+ days before the weekend. To make this even more incredulous, the “reader” was still out, but the head of radiology read them himself Thursday morning. Somehow, as of Friday afternoon, the scans we STILL not transcribed and reported in the system.

In the big picture, this isn’t even a blip on the radar – it’s not like my cancer is getting better or worse over the weekend based on when I get the scan results. Adding a few extra days of stress or anxiety over the results won’t help, though. Plus, the texts and emails start filtering in – “Scan results yet?” I’m not even that upset I didn’t get them (Jen was much more fired up); sadly, this is kind of par for the course at Holy Cross. It is more discomforting that the “little things” are being dropped.

When we went with a small cancer center like Holy Cross, it was made clear to us that it wasn’t Moffitt. Moffitt had a cluster of five-story buildings on the campus of the University of South Florida; Holy Cross’ cancer center is a little two-story wing that is smaller than my high school science building. They don’t have the resources or manpower of a mega-cancer center like Moffitt, MD Anderson, or Sloan-Kettering. They cater to a small subset of local cancer patients, most double my age.

Still, you recognize the difference in the level of service, especially having been exposed to a top-flight center first. Stuff like missed scan reads shouldn’t happen; it certainly shouldn’t happen repeatedly. For patients who worry more than I do, waiting a week would feel like an eternity. The laissez-faire attitude on getting results is one thing, but there have been quite a few times where the Holy Cross team had Jen and I exchanging worried glances (or worse). 

To wit: we were told that we knew more about this study than they did when we signed up for it (which I did, on April Fool’s Day – what kind of omen is that??). Another time, the doctor abruptly ended our conversation (and left the room) when we told him that the information he was giving us was incorrect or inconsistent with what his team was telling us. On multiple occasions, someone there has done something (or not done something) that just makes me shake my head and think, “They need to get their sh*t together”.

The attention to detail here is just not the same as it is at Moffitt. Could be that there are fewer resources here; or the ones at Moffitt have a higher level of education or background; or just that the bar has never been set this high at Holy Cross before. Whatever the case, it has been frustrating to occasionally have to circumvent the team you are working with because you don’t trust their ability (or availability) to handle everything to the standards you expect.

Still, we are here now and are staying here for now for two reasons: one, they have the drugs, and two, they have the drugs.  Kidding (sort of). Two, nearly everyone at Holy Cross has been kind, caring, and involved.  The competency of those involved in my care to administer the appropriate dose of the right drug has never been questioned. They are a little more personally invested here, because everyone knows your story. I text the lady who draws my blood to tell her when I am coming, instead of waiting 45 minutes in line for the next available nurse at Moffitt. The staff knows me, knows Jen, asks about our kids. Sometimes, it’s not bad to be the big fish in a small pond. So we soldier on and deal with the minor inconveniences that are mere tests of our patience and ability to navigate through the medical industry.

Oh yea, those drugs they administer? They are still doing the trick. After waiting an hour in the cancer center on Monday (and missing yoga, dammit), we finally got the results, 152 hours later. Tumors are either stable or slightly shrinking; there was a 7% overall reduction from the last scans.  This brings us down to a “measurable tumor burden” of 11.3 cm across five tumors, as compared to 12.2 in September and 26.8 in March – down 58%. The two largest ones continue to shrink, in the spleen (down 8.5% to 4.3 cm) and the liver (down 9.5% to 3.8 cm). Everything is still working, albeit slowly. 

So waiting the weekend wasn’t that big of a deal after all. You can be sure, though, that we will be on top of the December scans and results like Santa on those reindeer.


T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »

About this blog
T.J. Sharpe is sharing his fight against Stage 4 Melanoma. A South Jersey native and Bishop Eustace graduate, he currently lives in Fort Lauderdale, FL with his wife Jennifer and children Josie and Tommy. He was Patient #1 in a clinical trial at Moffitt Cancer Center in Tampa as the first person worldwide to use this sequence of treatments to fight melanoma, and is currently in a second clinical trial at Holy Cross Hospital in Fort Lauderdale receiving Merck’s anti-PD-1 drug Lambrolizumab

The Patient #1 blog will update the progress of T.J.'s fight against cancer, and also touch on many cancer-related topics.

Follow T.J. on Twitter and Facebook. Reach T.J. at Patient1@tjsharpe.com.

T.J. Sharpe
Latest Health Videos
Also on Philly.com:
letter icon Newsletter