Rare & remarkable

I’m still going to die.

Well, yes in fact we all are but the fact of the matter is my premature demise is still in the cards. The five year survival rate for stage 4 pancreatic cancer is less than 1%. That’s very striking. But, its also just a statistic, and today I’m going to tell you about another statistic. Less than 20% of patients with pancreatic cancer have a positive response to chemotherapy, and I found out Tuesday I’m one of those rare cases in the positive camp. To me that means I just made a giant leap towards the ultimate goal, and that is being that last one out of 100 cases to succumb to this disease.

So Tuesday was a day I had been on edge about for awhile. This was results day of the follow-up scan I had last week to see if any progress had been made from the chemotherapy. Bad news and it was time to start closing up shop. Good news, and it was time to stop thinking so short term and try to think ahead more normal again. Before nearly a week passed from scan to results something else happened that sidelined me a bit, perhaps a bit of a setback.

I got a call about my scan the following day, rather unexpected, and my first thought was that they were going to give me my results over the phone instead of waiting for the doctor visit. Cool! But instead it was something more serious. They found a blood clot in my lung. I had to go to the Cancer Center right away to obtain of all things, blood thinners…via injections…

MºtherF*cker exactly.

Now all that spinach and vitamin K I was taking I was told could cause a blood clot, and yet my doctor tells me that didn’t cause my blood clot, cancer did (cancer raises your risk 25%), but regardless my spinach lunches are over. But, instead of just remembering to take all my pills everyday, now twice a day I have to shove a needle into my belly and push a plunger! A week in my belly is sore, bruised, and shoving that needle in isn’t getting much easier. Optimistically after 1-2 months I could switch to pill form, but I’ll have to see how my chemo responds with my platelets with blood thinners in the mix. If they drop to dangerous levels (40-50) I’ll stop the injections. Regardless I’ll be on blood thinners for the rest of my life.

So as I ended my week pissed off about these shots I had a pretty quiet weekend. I worked some overtime since it was cold out and I wanted some extra money for my upcoming trip. Late Saturday night I had an email popup from my UC Health account. I clicked on it not thinking it could be my scan results, but there they were. Should I look? Of course you look!

I only read the first few lines and from what I could gather it was good, but then I closed it. I didn’t want to get all gung-ho and think that I was reading good news, and then have the doctor tell me on Tuesday ‘not so fast, blah, blah, blah’).

abdomen scan

Lung scan

So those are my scan results. The first is abdomen/pelvic, and the second my lungs. I didn’t even know until Tuesday that I had cancer in my lungs. Those spots though now are ‘no longer evident’. That highlighted “!” is the ‘pulmonary emboli’; fancy word for blood clot that would have never found if it hadn’t been for my scan. Lucky. The rest though is significant that all spots either decreased in size or were unchanged.

Anyhow, my secret Sunday through Tuesday was I knew the keywords decreased and unchanged. I told no one.

Dr. Latif finally shared my scan with me in my appointment. I got to see my deformed/swollen pancreas from December, and how it actually looked mostly normal now. How the spots on my liver looked then and now, etc. He also mentioned how remarkable the change was, I had mentioned in my previous post, about my tumor markers going from 43,000+, a number one doctor had mentioned had never seen so high before, to just over 200.

Now really I went into this follow-up hoping that maybe I could get a break from the chemo for a month, or that I could stop taking these injections, but cancer doesn’t take a break and neither can I. My treatments will continue on schedule as before, 3 week on, 1 week off for another 3 months, and we will see where we are again.

Just like with Mom we had several wins, but in the end we knew we were going to lose. I realize I’m in the same situation, but as many have mentioned I have a reason to celebrate. I suppose I go home and share my news, have a beer, and enjoy the moment, but the reality is still very real.

I had decided to put off the planning about death and such till later perhaps when I’m more disabled perhaps, but I was offered a packet on Tuesday that included information regarding a living will and POA. Given my brush with a blot clot that could have traveled elsewhere and ended things a bit more abruptly, I suppose I should prepare better.

But I’ll get around to it. 🙂

In the meantime I’m looking forward to another weekend with family, a weekend in Cincy next week to enjoy the blooming of Spring, and finally that trip that will finally take me farther west than Oklahoma City. The biggest question that lies is; will I make it to the ocean?

Thanks again everyone for all the likes and comments on Facebook; especially for respecting my wishes (If you see PNP in the future, it reiterates ‘Please No Prayers”). More on that later.


About jeffbedel

Indiana native that moved to Cincinnati in January 2012. Former trivia host, beer snob, foodie, non-conformist.

Posted on April 2, 2015, in Uncategorized. Bookmark the permalink. Leave a comment.

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