Since I got out of the hospital it’s been a very very fine line i have had to walk. Actually scratch that, I finally took my first walk today since getting out so that’s a bad analogy or metaphor (I can never remember the difference).
Either way, it’s a fine balance I have to adhere to is probably more appropriate.
The challenge that has presented itself, other than just straight up recuperation, is that we believe the immunotherapy is causing pancreatitis. This is above and beyond the issues with the bile and pancreatic duct being blocked by the tumour which sent me in to emerg three weeks ago, this is more of a straight up side effect.
Which to be honest is easier to handle psychologically. If it’s a side effect then it’s a matter of managing the pain and pancreatic issues till the end of the combo treatment (8 weeks). We can deal with the side effects of just Nivo once they present themselves after the IPI / NIVO has run its course.
And for the record pancreatitis is quite painful. Fortunately I am getting stronger in managing pain through deep breathing and meditation. And by not doing too much activity.
But the pain is really not the big issue. Getting to the next treatment is the only issue I am focusing on. I don’t want to stop early no matter how painful this gets.
To put things in perspective with respect to my pancreas when I went in to emergency my Lipase level was at 243. Last week it was at 283 and put my ability to take the treatment in jeopardy. It wasn’t super painful (pain is relative isn’t it, and the pain of not doing the treatment is certainly the lessor of the two) so we went ahead knowing that the higher level was probably due to the treatment.
This week my Lipase was 401, so it’s getting higher and requires even more focus.
It didn’t help that I was starving so I ate a full beautiful pork chop that Tracey made for dinner the night before the lab test. I probably shouldn’t have eaten all of it but for weeks I have been reducing food intake to reduce inflammation in the pancreas. And I was staring at that darn chop like it was the last pork chop on the planet.
In order to reduce inflammation with chronic pancreatitis you either go NPO (nil per os - or nothing by mouth) and get an IV for hydration or you work your ass off at home to just eat foods with no fat, mostly soups and other liquids like broth, and make sure to stay hydrated. As you can imagine over a course of three months this gets a little thin, as do I, so I venture off and try lean meats and other protein heavy food items like smoothies etc.
So the fine balance is maintaining a nutrition level that keeps weight on me in balance with reducing intakes that cause a further increase in Lipase and Amylase levels. Otherwise the fear is that my treatment all goes on hold.
And that would bite.