Hello, my loves, and welcome to my CaringBridge site. Why did I make one? Read on to find out more.
Disclaimer: The story detailed below is Maya’s Story of just the past couple of years, certainly not her life story and not even like, the complete story of her illness, either of which would take eons to write. Maya is assuming the majority of visitors to this site know her history at least a little bit but if there are visitors who don’t, feel free to ask questions! That is the entire purpose of me, I mean, her being so open about this - to start conversations. :-)
As you may know, I had to stop working full-time last spring and then stopped working part-time this summer, both due to my chronic pancreatitis. Anyone who knows me well knows that my career was one of the last things I was holding onto, adamant at giving it up after 15 years of sacrifices for chronic pancreatitis. Once I was forced to stop working, my quality of life declined pretty rapidly. I know to most people I seem very stable, but (a) looks can be deceiving - my body betrays me on a daily basis, providing the world with the image of a strong, upbeat, put-together Maya that doesn’t reflect how I really fee, and (b) the reason for my perceived stability is the fact that I’ve given up on or significantly minimized nearly everything else: my work, a social life, dating, my hobbies, traveling on my own, and so on. Additionally, I’m able to be stable at home these days with no trips to the ER only because of the pain medication I’m on - something I would desperately like to decrease - and because I’ve learned the hard way that ER’s doctor’s don’t know how to manage my illness the way my specialists do.
Given all of these factors, I have been exploring the option of having a major surgery, called a total pancreatectomy with islet auto-transplant (or TP/IAT for short). It is a serious surgery in which my entire pancreas, spleen, and gallbladder will be taken out and where my own pancreas’s islet cells will be transplanted to my liver in the hopes that they will begin producing insulin. After spending the summer and fall getting multiple expert opinions around the globe, doing my own extensive research, and speaking with others who have had the TP/IAT due to chronic pancreatitis, I have made the difficult decision to have this surgery.
This operation will be my third and will take place at the University of Minnesota in Minneapolis (where the TP/IAT was originally pioneered in the 1970’s), on Monday, January 22nd. The surgery is at least 12 hours long, after which I will be in the hospital for up to two weeks. After I get discharged I need to stay in the Minneapolis area for six more weeks, for a total of two months: mid-January through mid-March. Once that time is up, I will be able to continue my recovery in Chicago with my doctors here. Given how consequential this surgery is, the recovery is lengthy - at least a year, according to my medical team and others who have had the TP/IAT.
However, the above doesn’t really answer the question; it just provides context. So once again, why did I create this site? Well… -- I needed to find a secure way to update loved ones immediately, particularly since I knew I’d be in Minnesota and not Chicago. -- I wanted a calendar function in which I can make requests for help (for example, Skype sessions with my mom and/or I (to prevent the two of us from driving each other crazy) or meals for my dad, since he’ll be going back and forth after the initial dust settles) and receive help within our own community. -- I plan on documenting my recovery via photos, videos, and journal entries. -- My site should be something anyone can subscribe to easily but I also wanted people to be able to choose to follow or not to follow. CaringBridge met all four of those requirements, so it was a no-brainer, really.
Oh, and you’ll notice that my main photo includes my parents: this is because they are going to need just as much support as I do. I'm going to write more about this in my first journal entry, so check it out if you are so inclined.
Anyway, if you actually read my ramblings and got to this point, thank you so much for reading and caring! I know my parents and I are lucky enough to have a great family and wonderful friends who are like family, and that gives me the confidence to kick this surgery’s ass! :-)