The countdown is on! On June 21st, I will be going to the hospital for surgery, that will hopefully lead to relief of some of the pain I go through daily from pancreatitis. It is a major surgery, anywhere from 4-8 hours, with a very long recovery. In the end, it may not fix all of my pain, but will hopefully mean the end to the flare ups, that have led to a couple of hospital stays a year, for the last 5 years. I am excited, scared, going through times of great relief, that this may finally help, and worried about what I am about to go through, without any real guarantees.
Let me back up to a couple weeks first, and then we will get into the pancreas surgery. On May 22nd, I had surgery for a cyst on my thyroid. The cyst has been there for a few years, it started off fairly small, we did a couple of biopsies, and both times it came back benign. Both times, they also drained the cyst, which worked well, for a while. This year it started to grow, and grow….. and grow! After seeing the throat doctor, he told me that it was now 5 centimeters, which is pretty large. He told me that these cyst’s can be small, medium or large, and in extreme cases extra large, which is when they absolutely need to come out. Dr. Bunn told me that mine was easily in the large category, and was getting near the extra large size. After talking about it, how it was making it difficult to swallow anything, including fluids (This is a weird sensation, I think most of us have been eating, and taken a bite that was tough to swallow, it feels like you are choking for the longest few seconds of your life, then it goes down and you feel total relief. I was getting that same feeling drinking a glass of water), so we decided that rather than waiting for it to grow anymore, we should take it out. The surgery meant taking the cyst, and the left side of my thyroid out. The nerve wracking thing, pun intended, is they are working right next to the nerve that controls your vocal chords. This meant that coming out of the surgery, there was a chance my voice would end up like Louis Armstrong. Fortunately for me, not so much my future as a blues singer, my vocal chords seem to be fine. They are irritated, so my voice is a little inconsistent right now, going from normal, to a little high, and a little low, it’s like a less embarrassing version of puberty. The surgery went well, in the end, the cyst was the size of a lime, I will likely have a scar on my neck, the incision is nearly 4 inches long. It is healing nicely, and the recovery was so much easier than I thought it would be, if you find yourself having the same problem, I highly recommend Dr. Bunn at Spokane ENT. He did an awesome job, and I was super comfortable with him.
Now, smash cut to today. We are 10.5 days from the big one. My pancreas, over the course of the last five years, has suffered a ton of damage, its full of stones in the tissue, where the pancreas has digested itself, and the duct has strictures, dilation, and constant inflammation. My pancreas doctor took my case to a board of the GI doctors in the area, to try and get a collective idea of how we will move forward, they all agreed that surgical intervention was my best chance, as stents are not tolerated by me, they make my pain worse, and a nerve block that we did, had no effect on me. So an appointment was set with the surgeon, and they gave me the new plan.
I met with the same surgeon that removed my gallbladder. He is a great surgeon. In the entire Providence Health System, which runs hospitals all throughout the country, he operates on the pancreas more than any of the rest of the doctors. He is always calm, and collected, and very patient (which I will explain further on). He is confident too, without coming off as cocky. Basically, he is everything that you want in a surgeon. Dr. Mejia, my surgeon, explained that they will perform a couple of types of surgery. The first is called a Peustow(sp?), where they will filet open my pancreas, pull up a section of my small intestine, and try to connect the two. This means that my pancreas will drain directly into my small intestine, preventing the strictures from creating a back up of enzymes in the pancreatic duct. It is a complicated surgery as is, but further complicated because I am not an ideal candidate for this. They generally don’t perform this procedure unless the pancreatic duct is dilated to 1centimeter(10mm), my duct, at its largest point is only at 9mm, a difference so small that in most things, its nearly imperceptible, however in surgery, that is a pretty big difference. They will have to make a game time decision, once they are in there, and if they don’t think its going to work, they will change gears, and perform a total pancreatectomy.
The total pancreatectomy means they will remove the entire pancreas, parts of the jejunum, part of the duodenum, and a part of my stomach, they all share the same blood supply, so will have to come out. If all goes well, I should be out of the hospital in one week, which would be great, with complications, that could turn into a few weeks, so, fingers crossed. After coming home, I will begin the real recovery. This will be my summer, and likely take the rest of this year, and part of next year.
I have mentioned the pancreatectomy in the past. It is the procedure that we thought we were going to have to temporarily move for. The part that can’t be done here in Spokane is called an Islet Cell Transplant, there are only 4-5 facilities that have a lab capable of separating the islet cells to transplant back into the body. The consensus from the pancreatic board was, with the dose of insulin I am on, and the amount of enzyme pills I am having to take, is that my pancreas is basically not working anymore, so the islet cell transplant, which we weren’t sure insurance would cover anyway, would just create more stress, both physically, and emotionally. In other words, Spokane is our place!
Allow me to pull out my soapbox for a moment. Talking with both surgeons, I wasn’t sure what to do, which operation was more important to get, if I would be able to have both surgeries, and other things like that. Knowing that I have been disabled and not working for 2 years, and that the only insurance I can currently afford to have is a Medicaid plan, through the state, the pancreas doctors told me to move forward with the thyroid surgery first. The recovery is much quicker, for one, but the big push for that was this horrible excuse for a health care replacement. With how quickly it went through in congress, they didn’t even wait to hear how many people could lose coverage, they said 14 million, when the real numbers were actually 26 million, most of which would lose coverage for current condition, or pre existing conditions, that were not disqualifying pre ACA, will now be, one of those conditions added to the list is thyroid problems. The urgency for the thyroid surgery was to get it done before I lose my coverage for it. This new bill drops coverage for mental health issues, for those that need it the most, it also drops coverage, and makes it possible to disqualify people with diabetes, which is an epidemic here in the U.S., these changes are not likely to effect those in the middle, or upper class brackets, but completely take away the chance to live a long and productive life, for those who make, and have the least. This bill will kill people, there is no argument that it won’t, and thanks to my health issues, I will be one of those that it kills. I guess what I am asking, is can we put all the political bullshit to the side, quit worrying about republicans or democrats winning, and start concerning ourselves with America winning, please, for the sake of the millions of lives that we are considering to be not worth saving, including my own life, shut up, and start trying to find a solution, one that will actually work. Politicians are supporting this shitty deal, because they know it will get them reelected, after they campaigned so hard about the ACA failing, though none have explained, in the slightest, how it is failing. Anyway, enough on that for now, the last thing I will say about it, is remember, it is your friends, family, coworkers, and neighbors that will feel the effect, the politicians, and their families will be just fine, the blue collar workers, the people that are the most vulnerable are the ones that will suffer. Without The ACA, it is pretty certain I would have died already, it just isn’t right. If you believe that is okay, you give up your right to call yourself Christian, the right to hide behind that when you oppose gay marriage, or Planned Parenthood. Once you start thinking that it is okay for millions of people to die, just to save an average of $25.00, you are no longer practicing the religion you claim to be. You don’t get to pick and choose what parts of the bible you follow, and which you don’t. Excuse me while I put this soapbox away….
All of this being said, I am scared, and nervous, for what is to come in the next weeks, and months. I am also very excited to start towards progress, and hope that it will mean that at some point, I will be able to work again. In the midst of all of this, I am having to fight with disability, they say that despite the words of 6 doctors, I am still plenty healthy to work in different fields that they say are “abundantly available” to me. But that is a story for another time. In the meantime, prayers and positive vibes are gladly accepted, and I will let you all know when I am getting to a point for visitors. To those that I have had to break plans with, who I haven’t been able to see, I hope that this will get me back to the point that I can start making, and keeping, plans.
I would, quickly, like to say thank you to some people. First off, my mom and dad, in a lifetime, I could never repay you for everything you have done for me. Without you, I would be homeless, and broke, I am broke, but that is easier knowing that I have a place to rest my head. Thank you also for all of the help taking care of Bella, that dog has become an important part of my life, she brings me so much comfort and joy, she is not the easiest for people in their 70’s, but you two have done so much for her, and myself. Johnny, thanks for getting me out a few times, walking with me, going on little adventures, you, Zoe, Eme, Laura and Uncle David have been great friends, and I love you all. My cousin Missy, who sends me the greatest, and funniest cards, which always seem to arrive when I am having a rough day. They always bring a smile to my face, and usually a good laugh, thank you for being so thoughtful. All of the Warrick family, and Lindsay family, you have been so wonderful. Coop, thank you for keeping me presentable, and reminding me that I am needed, you are amazing, Annie, and your strength honestly inspires me! Last, but in no way, shape, or form, thank you Cubby, and Meghan, and Buddy Bongos. Your hospitality, and friendship leaves me in awe. Thanks for picking me up, running errands with me, and just spending time with me, on good and bad days alike, has been a life saver. It has been such a blessing to have you guys in my life, and you’ve set the bar of friendship very high, I can only hope that one day, I show you guys the same love that you have shown to me. I love all of you guys, and I hope to see you all on the other side of all this. That is it, for now, if I tried to thank everyone that has been there for me, it would take me days, weeks, and even months to write this, if I failed to mention you here, it was not a slight, the way you guys have rallied around me, moves me beyond words, I will never forget it, or you.