How I got here

Now that you’ve found your way to this site…

As you may or may not know, I have been diagnosed with pancreatic cancer. This website is an effort to keep everyone up to speed with what is going on with me during this fun-filled adventure of a lifetime.

What follows is a brief summary of my experiences over the last several months, from the onset of my symptoms to my diagnosis (four months later), to where we are today…

Once upon a time, in December, I started having mild gas pains, which got progressively worse, developing into what I thought was acid reflux.

I spent a couple of weeks taking various acid remedies, which didn’t seem to help, and experimenting with dietary changes, which had uneven results at best. Overall, the symptoms were getting worse; it was getting to the point where I could not eat or drink without pain. Someone mentioned the word “pancreatitis.” I went to see a doctor.

Because of my overall good health, when I went for the physical exam the doctor didn’t even seriously consider the idea of pancreatitis, let alone pancreatic cancer. She was leaning toward acid reflux. In addition, she balked at doing the pancreatitis test because it was, she believed, very expensive. I have a high insurance deductible, and she wanted to avoid me paying for it out of pocket unless it was absolutely necessary. As it turned out, it was not only absolutely necessary, but the test for pancreatitis runs about $17. It is to date the least expensive test I have undergone.

All these factors conspired to further delay my diagnosis and treatment, ultimately by three weeks. During this time I found myself unable to eat or drink anything without crippling abdominal pain. Even white rice would cause me to double over. Hot towels on my abdomen helped somewhat. But I was clearly getting worse.

I returned to the doctor and demanded the pancreatitis test, which came back positive. I was told by the sheepish doctor to go to the ER immediately.

In the ER, a CAT scan showed negative for cancer, but positive for pancreatitis. Or rather, the scan indicated that I had had pancreatitis (past-tense), but was recovering from it. This did not jibe with my symptoms, which were getting worse by the day. I was by this point taking 8 Vicodin a day just to be able to eat. I was rapidly losing weight.

OK, more tests.

I was released from the ER after I made an appointment with a GI specialist the following week. Part of the delay in diagnosis resulted from the difficulty of getting an appointment sooner than a week in the future. They also seemed to always fall on a Friday, further delaying the results until after the weekend.

This was the case with my GI doctor. He ordered my first MRI, and when the results came back on Monday, they showed a dark mass on my pancreas. Either the CAT scan in the emergency room had somehow missed it, or it hadn’t been there a few weeks earlier.

(ominous kettle drum sound)

A biopsy was scheduled (again, for the following Friday). Because of my problems eating and managing my pain (which by this point was totally incapacitating), I stayed in the hospital for the 5 days it took the results to come back.

On March 7th, I was told I had pancreatic cancer. Doctors would need to administer three more tests, to determine if it had spread, if it was operable, and if it was treatable by chemotherapy. I got all these tests within the week.

Now, for anyone unfamiliar with the grim statistics of pancreatic cancer, last year 45,000 people in this country were diagnosed with it. Of those, 38,000 have since died. Needless to say, waiting for the test results for those several days was pretty terrifying.

It turned out, however, that for however unlucky I had been to contract this disease in the first place, I won the lottery when it came to operability of the tumor. . in that the tumor was operable. The tumor’s size and location make it a good candidate for “cut to cure.” and a PET scan showed it had not spread anywhere else in my body. I can’t describe the relief I felt at the news.

After the results came back, I was connected with a surgeon (see photo) and an oncologist who put together a chemotherapy regimen. The rationale is to shrink the tumor before operating, reducing the area needed to cut and better defining its edges. Chemotherapy will also ensure that any wayward cancer cells too small to be picked up by the PET scan will be killed.

Again, the fact that I am so otherwise healthy comes into play. While before it was a negative, obscuring the correct diagnosis and substantiallytdelaying my treatment, now it is a strong weapon in my corner: The doctors are able to be very aggressive with the chemo regimen, which will allow me to have the surgery sooner than I would otherwise and dramatically increases my chances of a total recovery.

I began chemo on Friday, March 18th. Since then, I’ve actually been feeling somewhat better, and can feel the results of the tumor’s shrinking: I’m in less pain generally and I’m able to eat. I’ve already gained back a few pounds. I’ve got another 3 rounds of chemo, every other Thursday for the next 6 weeks.

While this is all (relatively) good news, there are some serious obstacles still ahead. My immune system in a severely compromised state, and will be so for some time. Combined with the fatigue brought on by the chemo, the doctors have told me I should expect to be unable to work for at least three to six months. This, combined with my medical expenses (my deductible alone is $5,000), has prompted me to reach out to my community and ask for whatever assistance you can afford to give.

On this site you’ll find regular updates from me and others about my progress, as well as photos chronicling this and other adventures. There’s a link to email me directly.

I want to encourage everyone who visits this site to please leave a note in the guest book, no matter how brief. It means the world to me to hear from you.

As difficult, humbling, and shocking as this has all been, I strangely feel more alive than I ever have before, and so fortunate to have the ability and the opportunity to fight this.