Hello family and friends.
It’s early Saturday morning, and I’m writing from the car as Kim and I travel to Macon for the final cross-country meet that my daughter, Caroline, will run in this season. It’s a State meet, and she and her team have been peaking. We look forward to hugging her at the finish line.
I thought I’d give a quick update from my appointment at Emory yesterday.
My appointment at Winship was at 2pm, but I was asked me to come in at 1 to get lab work done. This not being my first cancer rodeo, I knew what to do even though the Winship Cancer Center at Emory was a new place for me, this being my 4th cancer treatment center over the past 5 years. So, I gave blood at 1, grabbed a quick bite with Kim, and then waited over an hour just to be called back to a clinic room. I met with a young doctor first, who I presume is doing a residency. He told me that they were faxed over 40 pages of my health records, which is difficult to parse in a short period (I get it), so I tried my best to summarize my story. I was fortunate to get a mini-physical, which shows, so long as one ignores my mid-section, that I’m in great health for a 48-year old (ha). Next, a young woman who is doing some research on patient/physician best practices stepped in. She asked me if I was interested in participating, and I agreed (I’m all about science and research). I filled out a brief survey, and she left, saying she’d return with the oncologist to observe our interaction. Kim and I then waited another 30 minutes. Finally, the doctor stepped in. He asked me how they could help me, to which I responded, “I need a champion.”
I was then asked if I had the document that contains the genetic screening that was previously performed, which would give him the information he needed to determine if they had any available clinical trials for which I might be a suitable candidate. Apparently, they could not find this most important bit of information in the ream of information that came out of their fax machine from my medical group in Nashville. Fortunately, I had what he needed on my phone. So, I handed the physician my phone, and it took him about 1 minute to determine that they really didn’t have anything for me.
Ok, so I admit it was a little frustrating to have spent the better part of 4 hours, including filling out all of the new patient documentation, giving blood for basic analysis (2nd time in 3 days), to have the doctor look at a document attached to one of my emails and determine that Emory wasn’t an ideal place for me.
Can’t we do better than this? Please.
I’m not bashing Emory, because I know there are great people there doing great work, but they don’t have anything to offer me in terms of targeted therapies for GI cancers, at least not currently. For the most and best options for experimental medicine, I’m going to have to return to Sarah Cannon Research Institute in Nashville, which, I learned, is probably the best place in the country to go for clinical trials, because they have the most relationships with drug companies (you can imagine the economics and the politics at work). Further, my doctor there is the head of their drug development unit at Sarah Cannon, and I’ve been told from some of her colleagues that she’s the best, so we can put to rest whether I’m in the right place there. The only downside is that she is 300 miles away.
I had a very interesting but unfruitful conversation about oncology with the doctors at Emory, though the young researcher didn’t join us, for whatever reason. Kim and I got out of there at 5 and made our way through Atlanta traffic to head home.
As it turns out, I received a phone call from the research nurse at SCRI while I was waiting for the doctor at Emory. I called her back from the car after the appointment. She assured me that my name and record number is on a Post-It note on her computer screen. She checks for updates on trial options for me first-thing in the morning and again before she leaves at the end of the day. The latest is that they hope to open the trial that my oncologist is most excited about on Tuesday. If it doesn’t open (they thought it would open a week ago, too), then they’ll put me on a back-up immunotherapy option. Regardless, I’ll be travelling to Nashville next Friday to sign documents and have more testing performed (full MRI).
I’m encouraged that I’m looking at 3 options, all of which stand to give me some benefit: 1) a brand-new targeted therapy for my cancer type, 2) an immunotherapy that is part of a current study, or 3) a standard chemotherapy, which I can receive in Athens, btw, but is not the best option (side effects versus efficacy).
If this post drips of frustration, that is an accurate assessment. I can sense the tumor growing, and it is increasingly causing me “plumbing” problems. I need to get started on a treatment ASAP, but I think it is safe to say that I’ll start something the first week of November.
My prayer life is weak. I hope yours is strong. Jesus never tires.
Oh, and I apologize if reading my previous post was awkward, with a shirtless picture of me showing prominently on your media device…
Also, go dawgs. Beat those gators!