Waiting for my real life to begin.
The metallic stench permeated my nostrils, chin tucked tightly in place, head pointed downward leading the way into the dark descent of my current situation. After months of anxiety and chaos, the grinding wheels have finally come to a screeching halt. What lies ahead is where this part of the journey will begin. I think I am ready, I have to be, there is no other choice. Let me catch you up on what has happened.
I thought I could write during all of this, but it turns out I could not, the words that followed each fall from grace as my world fell apart sounded so dramatic, so pathetic and just so incredibly sad that this was my current reality. The truth is, I was exhausted both physically and mentally still am, but I am going to write now. This is something I am not going to be able to go through alone, and to be honest I don’t want to carry this stuff with me, so I am lying it down here, with you. Not sure I have ever been more scared, or more hopeful than I am now.
August would prove to be fairly awful. I could barely walk, the pain in my knees was at times too much to bare, searing pain, like being struck with a hot iron every time I would try to stand, take a step or bend my knees at all. Everything proved to be a struggle, I was overwhelmed, confused, as I became desperate for relief, as the dark depression began to seep in. I had no idea my knees would end up being the least of my problems.
Lying on my back staring at the cold glow of the dingy, yellow tinged florescent lighting resonating in the sterile room where the doctor was about to shove a needle through my belly and into my liver for the biopsy. Three tiny samples would reveal on a cellular level if I had cirrhosis, cancer or any signs of liver disease. I had already been diagnosed with Portal Hypertension and the number one cause of that is cirrhosis. I was terrified. It would take three weeks to get the results, as I tried my best to forget that inside I felt like a ticking time bomb. We sat in the small exam room of my liver doctor’s office, it was late afternoon and the sun streaked through the window to my left, I wondered in that moment if it would be a harsh winter. My friend Leslie, who is a fabulous doctor herself sat across from me and next to her, my lifelong buddy Bob, who had recently moved up from Florida to stay with me for awhile.
Dr. Ravi began to speak, the words floating around the room as they escaped his mouth, intently I watched his face, dark eyes dancing, making eye contact with each of us as the corners of his mouth turned upward. “You do not have cirrhosis, there is no scaring at all, no cancer, you don’t even have fatty liver disease.” Relief spread across my face, but that reaction was too soon, and I knew it the moment he continued to speak. “You have some severe congestion with the small blood vessels inside your liver. There is a venous outflow obstruction of the hepatic venules, which is post-hepatic portal hypertension. Most commonly happens to people after a bone marrow transplant (which I have never had.). Officially called Sinusoidal Obstruction Syndrome or SOS, which I find hilarious…SOS, ain’t that the damn truth, I thought to myself. The cause is unknown, it could be from toxins ingested at some point in your life but we will never know how or when it happened.
Great, now I had the Police’s song “Message in a Bottle” playing in my head, which I found hysterical, but did not choose that moment to share my thoughts. I looked over at Leslie who was feverishly taking notes, thank god because I was never going to remember anything except the words “venous system”, and only because I thought that sounded kind of dirty when he said it. I am also wondering what the hell I could have ingested that was so toxic. Sure, I was that kid who would lick the neighbor’s pretty fruit designed kitchen wallpaper hoping it would taste like snozzberries in Willy Wonka and the Chocolate Factory, or the first one to eat a dirt covered juicy earthworm plucked fresh out of the ground on a dare from kids I didn’t even know! I pulled my focus back into the conversation with Sting’s voice still echoing in my head “Sending out an SOS to the world…” suddenly I am yanked back into the conversation when I hear the word jugular thrown out. That is because to fix this pressure issue they will go in and perform something called a Transjugular intrahepatic portosystematic shunt. Down the hatch through your jugular vein they run a line down to the liver, feed the shunt through the line and connect the shunt into the liver and then build a bypass into the large portal vein, therefor relieving the pressure. My eyes grew wider, brows raised as he spoke calmly, explaining each step, kinda making the whole thing sound as easy as buttering your breakfast toast. I thought differently, “Jugular vein?” I just recently found that sucker after losing more weight and now you want to cut into it? Then you want to shove a garden hose all the way down into my liver? Are you out of your mind? I tried to remind myself I don’t have any of the really awful stuff they were initially worried about, and for that I was very grateful but this sure didn’t sound like a picnic but better than a diagnosis of late stage liver disease or worse and I remind myself of this each and every day.
More waiting would happen. My beloved Rheumatoid Arthritis Doc wanted me to get checked out by a pulmonary specialist just to rule out anything was going on with my heart or lungs adding to the liver problems. So off I went to see, what would prove to be yet another amazing doctor at the University of Cincinnati Medical Center. It was there I would meet Dr. Elwing who proves to be a brilliant doctor in regards not only her amazing knowledge, but bedside manner, and being able to communicate the scary stuff, in the best way possible. I am so glad UC is a teaching hospital because it made me feel very good to know that she is teaching others how to walk in her footsteps. She ordered a bunch of tests, including a echocardiogram with a bubble contrast, which is just an IV where they shoot in gas filled micro bubbles in and they can check for abnormalities in the left side of the heart, which would play into my liver issues. I also had a chest x-ray and something called a VQ lung test, it can show if you have blood clots in your lungs. Winner, winner chicken dinner! The test came back positive for what they think are blood clots in my lungs, but you know what they had to do….more tests. So on Monday they did a CT scan with contrast on my lungs to confirm they are blood clots and then we proceed with blood thinners and treatment for the clots. I try hard not to look at the test results that just come to me automatically without talking to the doctor but it’s very hard to resist. Seems like every hospital has that feature called “My Chart” and a more accurate name should be “My Anxiety Attack”, because they send those test results out in a set rollover, scheduled to hit your inbox at the worst possible time. First the e-mail comes to you from the hospital with the blaring announcement, “You have a new test result” now what it should really say is this, “You have a new test results, but don’t even think about opening this sucker without talking to your doctor first, because this thing has scary words inside like pulmonary nodule, left lobe, and further testing.” I am a patient woman at times, or maybe not, but I certainly try to be, this however was too much, it feels never ending at this point. Sitting at my desk as fresh tears dripped down on the crisp, white, blue lined paper sloppily scrawled with the notes I had taken from a work meeting the day prior, ink smeared and swirled, invaded by my salt stained heartbreak as I clicked out a desperate response to the information I had just read. Each sentence began with words like, What, How, Why, and when I hit the rock solid wall of the 750 character ball and chain limitation I hit the send button.
Another e-mail response came into my in-box within an hour, the doctor would be in contact soon, with answers to all my questions. Soon. I thought about that word. Soon. I have been waiting for three months for someone to figure out what is wrong with me. What is not working, what is flawed, clogged, broken, awry inside of me? Yesterday, the mid morning the call came from the Pulmonary doctor’s office, they still don’t quite know what is going on, they need more time. The plan is over the next four days they will gather a team of folks to look at all my tests and scans , then decide what is next. Answering the big question of how to take care of what is going on in my lungs, when can I be cleared to have the transjugular intrahepatic portosystemic shunt procedure to my liver, and if my left knee can be replaced in December.
The waiting has become comfortable in a strange way. I know nothing will happen till Tuesday, so I can go through the motions of things being normal, as normal as one can be without being able to really walk unless I am on my crutches. I laugh, I chat and make jokes, I manage to cook dinners for mom and Bob. I even do a few chores, play with the dogs and give lots of hugs and love to them. I go out less, okay not much at all, but if there are high stools for me to sit on, and if I can navigate myself and I am feeling pretty good, then I can go, or in the last minute I can’t because I am in too much pain. I have grown not to expect too much, and it’s okay to be good to myself even when that decision comes with disappointment. Tuesday morning I will wake up and find the familiar feeling of dread is waiting for me, not knowing what the doctors will tell me.
This newest development with my lungs throws a bit of a wrench in the liver/shunt procedure and the total knee replacement currently scheduled for early December, but one thing at a time, one day at a time and sometimes one good cry at a time. My blessings are many, and I remind myself of this each and every single day, there is always so much to be thankful for. I get up each day, I get dressed and I do the best that I can. That is something that does not change. Thank you all so much for your patience while I figure this all out, I promise I will get back to writing more frequently very soon. More importantly, I will foster again someday, I simply refuse to think otherwise.
“Any minute now, my ship is coming in
I’ll keep checking the horizon
I’ll stand on the bow, feel the waves come crashing
Come crashing down down down, on me
And you say, be still my love
Open up your heart
Let the light shine in
But don’t you understand
I already have a plan
I’m waiting for my real life to begin
When I awoke today, suddenly nothing happened
But in my dreams, I slew the dragon
And down this beaten path, up this cobbled lane
I’m walking in my old footsteps, once again”- C. Hay