I spent another week in the hospital. Went in with chills and a fever and ended up staying for 6 days. Had a 39.6 fever for four days, not fun. Just got out on Friday.
Fortunately I have learned that the second I have a fever I need to hightail it to the emergency ward and I need to start educating them that one of my ducts, most likely bile duct, is blocked and is causing coliangitis. And this is serious stuff not to be messed with, each hour counts and I have to be vigilant. If anything is going to get me I suspect this is it.
As I mentioned in my last blog I have begun scienceing the shit outta myself (pun intended) and now better understand some of my biology/chemistry so that I can be proactive. In a perfect world I would have a direct line to ERCP (endoscopic retrograde cholangio-pancreatography) also known as GI, that would say "I have a fever I'm on my way, get the roto-rooter ready I'm coming in hot). They would then grab me from emerg quickly, do the surgery and voila I may get out of the hospital in three days instead of my last two runs of 15 and 6 days.
Actually, I need to back up bit. I got into the scienceing part a bit deeper than I wanted - this blog was meant to be focused on a tough decision I made last week when we showed up in emerg.
As I was in the emerg bed the Oncologist showed up to discuss my situation and I ended up introducing an 'end of life' discussion with him. I needed him to know that while I understood the challenge was most likely a blocked bile duct (we all assumed this based on previous history) I also needed him to know that there was a decision being made on my part that he most likely wasn't going to enjoy hearing.
There are two ways to get to my bile duct - through interventional radiology - IR (incision and tube through ribs) and through ERCP (through a tube in my throat). I explained to the kind hearted doctor that I was taking IR off the table and the only option was ERCP.
I knew this meant that the only way to solve the issue was the same process that was complicated and blocked last time. I knew I was putting my life at risk and the odds were not necessarily in my favour.
But I also knew that for the past seven months I have been getting shorter stints of good days and longer stints of hospital stays and bad days. And a tube outside of my ribs was painful as hell and would mean limited access to playtime, baths, kayaking etc. It would mean a downgrade in quality of life. And it hurt a lot, the last one still sticks with me as I cannot sleep on either side.
In short the life extending activities are doing just that, they are extending my life but it does not have a direct correlation to living my life.
I want to LIVE. I don't want to endure, that's not living. That's enduring, which is different than endearing. This is not endearing, but it certainly makes others more comfortable to see me around and trying.
And this is important, this isn't me giving up on my life. This is me making sure whatever life I have is being well lived. That's a very important distinction.
And yesterday I lived. I went kayaking with my pal Chris, and last Saturday I went on a date with the love of my life. I saw many friends, helped Aman raise funds for an important foundation he has started and I watched my good friend Michael play a set on stage. I got to put my hand on Bij's baby bump and feel life. Even had a late night pizza.
I'm living. And that's what counts. Live your best life my friends, and sometimes that means making some really tough decisions...but you can trust me when I say they are the best decisions you will ever make.
PS The conversation opened up dialogue on palliative home care in the event I ever get to that stage. I now know what my options are if I decide that enough is enough.
PPS After they roto-rooted me I felt great. I'm pain free and gaining weight back. I may have gotten lucky this time but I'm willing to roll sevens again if it means I can be at home having fun with my family and friends.