Tuesday, March 31, 2009

How Did I Get Here, Part 2

March 5:

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:
10am 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.
4:40 pm 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
1pm, 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 4:30 – 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
midday. 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.

Tuesday March 10, 2009:

Gastroentorologist calls my cell phone at 10pm 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.

How Did I Get Here, Part 1

This rather long first post will be devoted to a narrative of the process before my diagnosis - the symptoms I experienced, the actions I took, and my reactions to how my case was handled.

In all of my research and tracking of symptoms, I had NEVER come across mention of PMP, my eventual diagnosis. So, I’ll offer this initial long-winded narrative in the hope that documenting the symptoms may provide some help in developing an understanding of the condition. There are only 1000 cases a year of PMP, I’m told. If you’re one of the “lucky” few facing this possibility, I hope this may help.

“Something is wrong with my body” - Fall 2008.

The only real symptom that I ever really experienced throughout this process was a big belly. For the past 7 years or so, I’ve been in fairly good shape. Not in consistently great shape, mind you, just healthy compared to my earlier days. You see, I was a chubby kid, then I was a somewhat overweight adolescent, and then I was maybe 20 pounds overweight during my college years. In 1997 at age 26, I was looking better but was still a bit chubby.

I really got in shape in the early 2000s. Side note: a big factor for this was actually a prolonged period of unemployment. In October 2001, I was laid-off from my job at a small project management firm who lost all their big clients after the 9/11/01 terrorist attacks. I found myself with lots of time on my hands, no money to spend in bars and restaurants, and very low self esteem. The only outlet for my energy (and way to feel good about myself) was to start a fitness regimen. I was a temp, worked a few side jobs in construction, did some free-lance writing, and built a few websites for cash. It barely paid the bills, but I still collected enough money to buy a kayak. So, I spent a summer kayaking and enjoying the outdoors with my other unemployed friend Ryan (who would eventually get cancer, too, DAMN IT). Working on physical fitness was rewarding when nothing else seemed to be. I felt good about my body for the first time. And I stayed trim and at a good body weight for quite some time.

In August of 2004, I finally landed a permanent great job. For the next few years, I worked long, often stressful hours and spent most of my time in front of a computer screen. Gradually my main exercise became stress-relieving walks around a college campus, replacing the treadmill and weight training I’d previously done 3 days a week. So, I was less fit than during the unemployed days, but I still succeeded in staying active and eating a healthy diet. 5'7" and around 145 pounds. Maybe 150 during football season. Sunday beers, you know.

The bottom line of this long-winded narrative (get used to it, folks!), is that it became surprising (but not entirely unheard of) when, in the fall months of 2008, I began to develop a belly. Hey, it happens to all of us as we get older, right? What seemed strange was that I still had pronounced abdominal muscles. Granted, I was in my mid-30s and never really had 6-pack abs or anything like that, but I had relatively low body fat and was carrying no excess weight anywhere else on my body.

My good friend Nikki dubbed the belly my “beer muscle” – my gut had the general shape of a “beer belly” but I still had visible abdominal muscle definition and was still skinny in my arms, legs, butt, etc. It was as if my abdominal muscles were being pushed from behind – as opposed to being covered by a layer of stored fat. Turns out that was exactly the case, when months later the problems were finally diagnosed. Patience, dear readers - all will be revealed.

Despite this weird phenomenon, I was still trying to convince myself that I was simply getting older and my body was responding by storing “hard fat” deep in the tissue rather than as subcutaneous fat. Here’s the kicker: around September-October, after some intense dieting and increased exercise, the belly was actually getting bigger while the rest of me was shrinking. Clearly, this was something different. Something is wrong with my body.

In November 2008, I started to develop recurring heartburn for the first time in my life. I’ve always had an “iron stomach” – I’ve always loved to eat very spicy food and never suffered for it, and I could drink alcohol and never have an upset stomach or a hangover. I would vomit only on the rarest of occasions. Heartburn or acid reflux? Never! So, now I had a big belly, a skinny body, and bad heartburn. Again, it was if my insides were being crowded – my theory was that there was just such pressure in my abdomen (from fat... bloating... something else?), that the stomach acid was now being forced up into my esophagus. There was simply nowhere else for it go. The refrain repeated: something is wrong with my body. Thus began the search for a doctor (I hadn’t seen one in years), and more intense research into these symptoms.
Side note: I had a great team of friends helping me with research into my symptoms. One of my dearest friends is a highly accomplished university professor with a stellar record of scholarship – medicine is not her primary field but she knows how to conduct research. And her mother is a retired nurse with a life-time of medical experience and medical research books in her home. These two were researching and “discussing my case” several days a week throughout the process, and I was doing my own amateur research using Google and the hundreds of medical sites on the web. Let me state the obvious: all that web-based medical info in the hands of a paranoid half-wit like me is an invitation to torture. Everything seemed within the realm of possibilities: an ulcer, gastritis, liver disease, stomach cancer, you name it. It was driving me insane, but I knew that thorough research was necessary - I wanted to be fully informed and ready with practical reasoned questions for the doctors I was to see.

Enough is Enough: “The Medical (Mis-)Adventure Begins” - Jan and Feb 2009

After being unable to fully enjoy the holidays, I decided I’d had enough. It wasn’t getting better, and it was time to get some answers, solve the mystery, and fix myself. New Year’s Resolution: Find a good doctor and be back to normal by the end of the year. That was the resolution then, and it remains in effect to this day. Even now, as I’m staring down the barrel of a loaded cancer gun, I know that I WILL be well again. I may be missing a few parts, but I’ll be well.

The first week of January 2009:
I hadn’t seen a doctor in many years, so I had to find a doc. My wife’s doc was too busy to schedule me for a few months -- no thank you, I need to get the ball rolling now! So, I went to a doc that my mom seemed to like. The doctor heard me out, palpated my distended belly, ordered full blood work, and took some abdominal and chest x-rays. An H. pylori infection (ulcer) seemed plausible, and the blood test results would tell us in a few days. Meanwhile, he offered this: “take Prilosec for the heartburn. You know, you’re in your late 30s now and our metabolism tends to change around your age. I think you may just be getting fat.” My response: a desperate chuckle. Then I took off my shirt, showed him my visible ribcage, reminded him of the muscle loss, pointed to the distended belly, and said, “I’m not fat. I look like I’m 8 months pregnant! I don’t think you should ever mention metabolism to me again. You just call me as soon as the blood tests are in.”

It was a few days later that some person from his office called to tell me, “The blood tests all came back good. No infection, no ulcer.” Uhhh… okay. “So what now?” I ask. Her response: “Is the heartburn medication not working? We could try another prescription or maybe you could see another doctor if you want. If you’d like, I could tell the doctor to call you tomorrow to talk about options.” Well, yeah. That might be nice – please have him call my cell phone the next day, and we can move on to the next step.

Well, the following morning, I got the call during my drive to work. A call not from the doctor -- from the same woman with whom I’d spoken the previous day. Her greeting: “So, what’s going on?” As if we’d never spoken. Ugh. My response: “What’s going on?? Well, the same thing that was happening about 15 hours ago when I spoke to you. You offered to have the doctor call me to discuss the next steps and options to explore. So... what? I suppose I’m ALLOWED to talk to YOU only? Do I need to make an appointment to actually speak to an M.D.?” Her response was essentially the same: “Well, ummm… do you want me to see if he’ll give you another heartburn prescription, or recommend a gastroenterologist?” Uh, no. Thanks for all your help. I’ll take it from here, thanks.

My reintroduction to the medical world was valuable – from this point forward I would have no expectations, and I would be prepared to fight for any and all information and attention. A valuable first lesson.

Deciding to blog

A blog?? My personal information on the internet?? Uh… I’m not so sure about that.

I’ve always been a rather private person. After a childhood of general “shyness,” I grew up to be a guarded and private adult. Even in the most public of settings and social situations, I’ve always been more prone to sit back, observe, and listen those around me than I am to interrupt a conversation and say “ohhh, pay attention to me! Check out my story!” That’s just the approach I prefer. After all, I find other people to be much more interesting than I am – I KNOW my own story, tell me something new!

I know a few people whose lives are an open book – who freely share intimate details with even casual acquaintances. I am NOT that type of person. So, the decision to take my story to the web was not an easy one to make. I’ve been on social networking websites since they first hit the scene years ago, and for the longest time, I used an alias and never even posted a photo of myself. For years, my avatar or profile picture has been of a cartoon: Brian the dog from Family Guy. So, it’s quite a leap of faith for me to choose to reveal my personal thoughts and stories in a public space. But I’m glad I reached this decision. In the weeks and months ahead, the blog will be my best opportunity to actually “be myself” and spend time with my people. So, here we go…