Time is such a fascinating concept isn’t it?
It can be measured, it is exact, it is vast, it is achingly short, it is profoundly versatile. Mathematicians and physicists use it as a variable, individuals use it to schedule their day, and some of us whine about when we have to lose an hour for Daylight Saving Time. A few of my friends here might recall my countdown to wrap up my doctoral internship, where the steady passage of time was most welcome.
As a psychologist, time has a powerful connotation. We can look back to a time, when we felt normal. We can look ahead to a time when things feel more fallen into place. For certain issues, namely trauma, it can feel that time has taken a more sinister form-it can feel lengthened, where we feel trapped to experience a pain we don’t feel any control over. We can think about how long it has been since we lost someone we cared for, or how much time we have left with those we love. Time can feel cruel. Taunting us with its enduring nature, when we no longer are capable of enduring.
I’ve been thinking a lot about time lately. It’s pretty inevitable when you’re given a diagnosis that makes you feel like a ticking time bomb. According to the American Liver Foundation’s website: “PSC advances very slowly. Many patients may have the disease for years before symptoms develop. Symptoms may remain at a stable level, they may come and go, or they may progress gradually. Liver failure may occur 10-15 years after diagnosis, but this may take even longer for some PSC patients. Many people with PSC will ultimately need a liver transplant, typically about 10 years after being diagnosed with the disease. PSC may also lead to bile duct cancer” (Assis, 2017)
So. Let me break that down. I have a disease where approximately 10-15 years from now I may need a new liver. Or maybe not. Maybe that won’t happen for far longer than 15 years, maybe (hopefully), it will never occur. Or, it may be less than 10 years. Time, in that moment of diagnosis, and to some extent still, feels like some type of experiment. To what degree of decay is my liver, or more notably bile ducts, and what will that “inevitable” future look like? I hear liver transplants are not exactly simple. So here are my stats, for times in which I need to monitor this bad boy:
- Every three months: Blood tests (LFTs-liver function tests)
- Every six months: MRCP (fancy way to say an MRI of my liver)
- Every twelve months: Colonoscopy/Endoscopy (to check for cancer)
Theoretically, all three are to check for cancer, but only the last involves biopsies, which is really the tried and true way to really get that info. Also, the fun part about having Crohn’s disease already is that the combination of this and PSC really ups the Colon Cancer risk (Wang & Leong, 2013); PSC alone ups the risk of bile duct, liver, gall bladder, and pancreatic cancers (Ponsioen, 2013).
Right now, I’m not thinking about cancer (I’ll likely write a post on that topic in the future). I am, however, thinking about time.
I have zero control over what will occur with time. Like I tell my patients, We don’t have a crystal ball. We don’t have time machines. What we do have is now. And now matters. So much. For what we do now, undeniably resonates with our future. My decision to stop alcohol use and limit Tylenol is small, but meaningful. My keeping up with screening, will be helpful. I will also allow myself to rest when I need to, because that rest may help me do more tomorrow. I can sit and ponder what time I have left until this liver fails, or I can enjoy the liver and life I have now, and appreciate all the great things I may take for granted. That’s really the key thing. Not taking things for granted.
We only have so much time. Why not make the most of it?
David, Assis (2017). Primary Sclerosing Cholangitis (PSC) https://www.liverfoundation.org/Ponsioen, C. (2013). Diagnosis, Prognosis, and Management of Primary Sclerosing Cholangitis. Gastroenterology & Hepatology, 9(7), 453–465.
Wang, R., & Leong, R. W. (2014). Primary sclerosing cholangitis as an independent risk factor for colorectal cancer in the context of inflammatory bowel disease: A review of the literature. World Journal of Gastroenterology : WJG, 20(27), 8783–8789. http://doi.org/10.3748/wjg.v20.i27.8783
Feel free to click on the links to the references for more info, the articles are not too long and very informative. 🙂