Saturday, November 28, 2015

Initial diagnosis

To say I was a bit nervous between December 16th, 2014 and January 15th, 2015 is a gross understatement. I was more than a bit nervous; I was a wreck and downright miserable. "Acceptance" was not a stage of grief I met during that long, long, long month. When I learned that there was something really wrong going on in my body that might kill me (but "probably" wouldn't), my reaction was not graceful or admirable. I kept it together on the outside for most of those days, but on the inside, I was crumbling. I wondered how some people seemed to face the possibility of death by long-term illness with strength. Actual named diagnosis on January 15th brought much relief, thankfully. No one wants a giant tumor in their pancreas, but the kind of tumor I had was the "good" one. It was surgically curable. I was going to be okay. But the month of living both with and without pancreatic cancer (a fun mental experiment? NOT!) was terrible.

December 16, 2014, I had a CT scan to basically rule out an overtly physical cause to my heartburn, nausea, and anxiety. Within an hour of completing the CT scan, I got a phone call from the doctor's office. General rule: results from a CT scan relayed within an hour must not be good or "normal" results. I was expecting a couple of days until the "you're okay" phone call came.  The results of the CT scan as reported by my doctor said that I had "changes to the pancreas, unlikely to be pancreatic cancer" and that I needed to see both a gastroenterologist and a surgeon within a week. A nurse had delivered the news and could not answer any of my questions; she only could relay the message from the doctor. This was in the evening, so any questions would have to wait until morning. In the absence of a medical professional, I turned to the Internet. While I know that was an absolutely terrible idea, I was seeking reasonable, benign explanations for "changes to the pancreas." Warning: there really aren't any reasonable, benign explanations for "changes to the pancreas." There are relatively benign explanations, but nothing common or reasonable. If you've got something wrong with the looks of your pancreas, you're probably not going to be getting good news. Sure, you could have a benign cyst, but anything Dr. Google could tell you would do nothing but incite terror and dread. Needless to say, I love using clichéed transitions in my writing. I do. But, really, needless to say, I did not sleep that Tuesday night. 

If you know me IRL (in real life), you probably know I am a skeptic and a realist. I believe there is a reasonable explanation for everything and I do not believe in fate or karma. I believe in the hard sciences and statistics. I am a pragmatist through-and-through. You will not find me using clichéed expressions such as "Everything happens for a reason" or "Every cloud has a silver lining" or even "God only gives you what you can handle" (in which case, why the hell did God think I could handle a giant pancreatic tumor?). I know, I know, I'm no fun. However, the stars aligned in such a way I have been forced to re-think my stance on "everything happens for a reason." I still don't believe that, ultimately, but the set of coincidences after diagnosis gave me pause. 

I met a gastroenterologist (digestive system doctor) the day after my CT scan. I would come to appreciate him for his kindness and attention in addition to his expertise. It was a Wednesday (this becomes a relevant coincidence). The girl who took my vitals in the exam room attempted to be reassuring and said something like, "It might not be so bad, our doctors see these things all the time." Boy, was she wrong. Dr. Amar Bansal came in shortly thereafter, sat down and explained what the radiologists saw on the CT in his soothing doctor voice. I don't remember what he said verbatim, or even in what order things were said, but certain statements stood out. Like nearly everyone I encounter, he asked how I knew something was wrong. Heartburn. There were other obvious symptoms as well, but I didn't realize it at the time. Dr. Bansal went on to tell me out of 1000 CT scans on someone my age, 999 would be normal with the exception of a few ovarian cysts. He would not have ordered a CT scan simply because I had heartburn. This is the first coincidence that stands out in my mind. The doctor who ordered the CT wasn't even my regular doctor, and the specialist wouldn't have even ordered a CT based on my symptoms. When I saw the only doctor available that Thursday back in October, he recognized my symptoms as unusual (the heartburn was constant and unrelated to what I ate) and ordered a CT. Why I waited 2+ months to get a CT is a long story by itself, but this detail turned out to be another happy coincidence (or blessing, if you prefer). Dr. Bansal described my tumor as it appeared on CT imaging (sizable, but no evidence of spread), and he first described adenocarcinoma of the pancreas and why he believed I did not have this deadly form of pancreatic cancer. He explained that the radiologist believed I had a pancreatic neuroendocrine tumor or PNET, the "Steve Jobs" kind of pancreatic cancer. It might be benign or cancerous, but if it's a cancer it's slow-growing. Adenocarcinoma, the Patrick Swayze kind of pancreatic cancer, is aggressive and infiltrative (it spreads to other organs quickly). This is distinctly different from the kind of tumor I likely had, the PNET. This was good news, apparently. I would almost certainly need surgery and I should definitely keep my scheduled appointment with my surgeon the next day. As he walked me out of the office to schedule my endoscopy for that Friday, I asked him nervously, "Do you think this is going to kill me?" And he kindly replied, "No, I don't. You might need chemo or radiation after surgery, but I don't think this will kill you." He also told me to stay off the Internet and only look at the Johns Hopkins and Mayo Clinic's information about PNETs. I left feeling a little better. A little. 

By the grace of coincidence, I had an intake appointment scheduled with psychiatry later that afternoon. It was actually a reschedule. The nurse practitioner came to get me a little later than my appointment time; she was reading through my medical charts. This is one advantage to going to a large medical group, no need to explain what was supposedly going on in my pancreas, she already knew. I sat there and cried and talked for the entire 40 minutes I was allotted and left with a prescription for a sleeping pill. I reassured her I would get myself together enough to drive myself home. 

At some point that evening, the surgeon I had with whom I had a scheduled appointment the next day called to cancel my surgical consultation. He did not do that kind of surgery (which I would later find out is called a pancreaticoduodenectomy, or a Whipple procedure) and I should call Dr. Fabio Sbrana at Lutheran General Hospital. After a sleeping-pill-induced and much-needed night's sleep, I called Dr. Sbrana's office that Thursday morning and saw him a few hours later. My next opportunity to see him for surgical consult would have been January 8th, 3 weeks later. To this day, I am so thankful that he had that appointment slot. I didn't realize until much later than Dr. Sbrana only saw patients in his office on Thursdays. I happened to call on a Thursday morning, another happy coincidence. This time I was not alone in the exam room. My husband, probably as freaked out as I was, came with me. Dr. Sbrana came in promptly and in his Italian accent told me that this is something "very strange" and "nearly impossible", and that is a "good thing". The more typical pancreatic tumors are quickly deadly. He said I would have a nasty, nasty surgery, but that I'd be fine. And you know what? I believed him. He turned out to be right. I did have a nasty, nasty surgery, and I'm not dead. He didn't even say I had a PNET. That day I developed a crush on my surgeon. He is pretty good looking, sure, but he was going to save my life. Before we left, he personally spoke to the gastroenterologist who specializes in the pancreas about me over the phone and I had an appointment with that doctor the following Monday, December 22. My husband and I left feeling more confident about my prognosis and we went out to lunch and I didn't cry on the way home (I had spent a fair portion of the last 36 hours in tears). The next day, Friday December 19th, I had an uneventful endoscopy. Dr. Bansal stuck a camera down my throat and saw that the tumor (or whatever it was) was pushing on the exit of my stomach, the duodenum, and that was causing my heartburn. The tumor had not grown unto my stomach lining. More good news. There was still no evidence of spread. I got through the next 26 days until actual diagnosis somehow. It was a very long 26 days that included Christmas, my boys' birthday, and New Year's, so of course lots of gatherings and lots of playing it cool. It was exhausting. Actual diagnosis occurred on January 15th, 2015. It was not a PNET, it was a psedupapillary neoplasm. This was good news. There's a lot more to be said about my life between December 16th and January 15th, but I'm going to save that for another post or two. For now, I will leave you with a Ralph Waldo Emerson quote: "Bad times have a scientific value. These are occasions a good learner would not miss."  

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