CT scan was quick and painless. The technicians were great and friendly and I was making them laugh – especially prior to the scan itself. Once it was over, and they were sending me on my way, I sensed a marked change in their demeanor. They didn’t make eye contact after the scan, and there seemed to be a troubled tone in the way they sent me on my way with a “good luck.” It was probably unreasonable for me to “read” too much into the way they were acting after performing the scan, but I left the hospital that day thinking for the first time that I was a very sick man. This was a Thursday afternoon, and I would spend the entire weekend dwelling on this feeling. Thankfully, I had my wife and our friend Karen to distract me and remind me that at this point we still know nothing. But that was one rough weekend of fear.
I should point out that throughout this early process, I had been taking copious notes on my Blackberry rather than watching the clock as I sat in all those waiting rooms and/or waited for the phone to ring. It was my distraction, and it’s also the reason I’m able to recount all these details for the pre-diagnosis narrative.
I’m about to discuss the post-CT Scan period. This was a frustrating couple of days. After having spent a week undergoing 3 tests, I needed to know what was next and when I should expect to hear something. If nothing else, I knew that the “biopsy” tests from my abdominal fluid had been made available to the doctor. I just wanted someone to tell me what to do next – do I need to schedule an appointment to talk to the doc? Is there something that can be done on the phone? What should I expect and when? That’s all I needed. I got conflicting answers from the each of the three different office workers that I spoke with. I nearly flipped out.
Rather than drafting some complete sentences and assembling a paragraph, I think I’ll just copy/paste the notes I wrote on my Blackberry during that period. Here you go:
Hosp says the CT scan and report will be ready, and doc is in their network -- able to read it all online. I should expect a call frm Gastro’s office on afternoon of Fri Mar 6.
Friday, Mar 6: spoke to main reception person. Sees my results are in docs
”cubby” and will leave a message for someone to call me with results today. I make follow-up call - what do I need to do?? sched an appt? Can anyone else read the test to give me any info?? Answer: no sir, looks like Monday. FUCK! All weekend to deal with the unknowns.
Monday, 9: spoke to yet another secretary(?) at , told her about all the tests that have been performed and the complete lack of answers or follow-up. They'll call me back (yeah, sure) today on cell phone. I called back at – and got an answering machine/service. Total runaround and lack of attention is taking a massive toll on my mental state. Falling apart, quietly and privately. Must stay strong for B.
Tues, March 10: I just completely begged and hassled doc’s personal secretary by phone . Threatened to be in their office all day Wed. if I don’t get someone to tell me what to do next. Told her I’m never more than 10 minutes from their office. Not sure if she took that as a threat.
Gastroentorologist calls my cell phone at and explains that he had to do a lot of research and make some calls to determine my condition. He explains that it has taken him quite a bit of time -- “well, this was a tough one to figure out. I’m sorry to call so late. I’m just trying to catch up on things. Uhhh, ummmm. Well, this is a very rare….” etc. -- before he finally tells me that I have cancer. I have to walk HIM through the “conversation” – and I’m the patient! Weeks later, I can empathize with the guy. He was clearly in way over his head in diagnosing this rare disease. But after days of silence I had lost all confidence and patience. So, when he began stammering his way through the early parts of the phone call, I’d had enough. Just give me the damned facts, I recall saying. Why do I have to be the one to hold his hand through this?!?! What an ordeal. I finally make him spell the name of this thing, tell him to get all my records and tests together and ready to be transferred by mid-day Wednesday. I then say let’s both work (independently) on finding an oncologist for my next steps. Thanks, doctor. Good night.
I do not sleep that night. I would barely sleep at all over the next few weeks.