2 weeks ago I had the liver biopsy for the NCI MATCH trial. All in all I was told they took 8 core needle samples. I was "told" this because I truly can't recall the procedure. I remember checking in and being incredibly anxious. I was super fearful of the procedure because my last biopsy in 2010 was not fun and I still to this day remember very vividly how it went and how I violently trembled on the procedure table. I remember everything and I feel like I felt everything, despite any meds they may have given me back then. So of course I researched how the liver procedure would go and of course it scared the crap out of me. They numb the area and then push the needle through with the help of a CT scan to guide them. They have to push through the liver capsule and there's supposed to be a "pop" as the needle breaks through. This right here - is what freaked me the fuck out. So the entire time I'm sitting in pre-op, I'm quite, anxious and teary eyed.
Let me talk a little bit about how peculiar pre-op was. The nurses that prepped me were incredibly sweet. One of them took her first look at me and just came over and embraced me. She could read the worry and fear all over my face. She whispered in my ear and told me it was going to be OK. That I was going to be OK. She stepped back, held my shoulders and smiled at me. Then she continued with taking my history, entering vitals, etc. She asked me what my favorite color was, told us about her two sons, one of which is in medical school, left and came back with a handwritten note and a handmade angel (in my favorite color). She told us the doctor would be stopping by soon.
And he did. The interventional radiologist came in just a few minutes later. He was a tall man, medium-blonde hair, medium-to-large build. He was wearing a magenta (yes magenta) button down shirt with the collar open (quite open), blue jeans, cowboy boots and notably lacked the traditional, white lab coat. He set his perrier down on the table and sat -- not casually leaned or a half-cheek semi-sit, no - a full on seat, with both legs hanging off - and his bottom on - the end of my hospital bed. He covered the procedure, made sure I understood what I was there for and assured me that they would have good meds for me. So good in fact, he said, I very well may wake up with a tattoo on my ass and not even know it. But it will be fine. He's a pro.
After he answered my questions, he left and the nurse that gave me the angel came back. She grabbed my and Mike's hands, asked us to close the circle and she said a prayer for me. It made me cry. Once finished, she hugged me again and left. And just when I didn't think things could go any more differently than I what I was accustomed to - shortly thereafter - the nurse who was going to be with me during the procedure came to greet me. Her name was Glenda.
It was official, I thought. I was in OZ. And not at the beginning of the yellow brick road. No. I was in the Emerald City. The nurses were the people of the city and the great and powerful OZ himself wore a magenta shirt and Glenda the Good Witch - she was the one with the "good meds."
They wheeled me back to the procedure room. Mike stayed with me as long as they allowed. The CT Tech - a larger hispanic man who spoke really quickly and was seemingly irritated by whomever kept ringing the procedure room phone with questions - told self-deprecating jokes in an effort to calm me down and break the nervous tension that was rolling off of me. No such luck munchkin. Your time is better spent peering through the square in the large emerald doors to the city.
After about 30 minutes of bad jokes, it was time to move me onto the CT scanner table. It was the gatekeeper's turn to drive. The room was all set. He adjusted my position in and out of the scanner, assessing position, drawing on my ribcage and marking areas that indicate "do not cross." Glenda hooked up oxygen and secured some straps around my hips and legs so I didn't roll off the table. When it was all set, she leaned over my ear and whispered "Ok, I'm starting the good meds now." I remember feeling them hit - similar to that buzzed feeling you notice when you have a few drinks - you recognize the relaxation and distortion. And that's it. I don't remember what happened next.
My next memory of the procedure is waking up to Glenda telling me "Ok sweetie, we're all done." I replied with, "What?" And then my conscience mind registered the pain in my side. We weren't in OZ anymore. I started shaking - either from the withdraw of the meds or the pain or both but all I could say was it hurts, it hurts, it hurts. They shimmy me back onto the CT table and do another quick scan to make sure that it indeed I just hurt and aren't - in fact - internally bleeding. Nope. It just hurts.
I'm back in the same spot in the pre-op room - which is now my recovery room. I'm not sure how long I was there, how long I was out. I remember Glenda floating back in to hand me a norco because I kept saying it hurt. After that, I most likely passed out again for a bit more. I'm not sure. When it was time to leave, they wheeled me out to our truck and I was almost motion sick from the ride to the curb. It was an hour and a half ride home. Glenda sent me with a puke bucket and bag, just in case. We only made it out of the hospital parking lot before I puked.
After about an hour Mike indulged me by stopping at Dairy Queen. I got a plain vanilla cone - and I managed to keep it down the rest of the ride home. Mike put me to bed, rested for a never-long-enough minute for himself, and at 5 pm went to pick up the boys. I got up when they got home. We managed dinner for them and bedtime. I managed to eat a bit more - some fruit, strawberries specifically. Once the kids were down, I stopped at the fridge, took a swig of orange juice and went to get ready for bed. After about 3 minutes of laying down in bed, I jump up, run to my sink - and puke. everything. Hence my vivid memories of strawberries and juice. I should had stopped at the berries.
I threw up one more time that night, kept nothing down. I turned out the light and figured I'd try again tomorrow. Tomorrow was better. I woke, ate, had coffee, water ... all was much better. I just felt super hungover - just all over icky from all the memory-erasing and pain-erasing meds they pumped through me during that brief procedure.
It's been two weeks now since the biopsy. Every day I felt a little bit better. Every day I felt more crap clear my body. I've tolerated a lingering side-ache however. It wasn't bothersome until two nights ago. I rolled to my left side in my sleep, my preferred side, and it felt like a bubble or something surfaced into my right rib-cage. It hurt. And was alarming. So I rolled back over flat, let the pain dissipate and went back to sleep. Some time during the night I did it again two more times, and again the pain woke me each time. At 6:30 AM I decided I would let Mike sleep until Cam came in the room as per usual, and once Mike was kinda awake - I'd tell him that I think we need to go to the ER.
So I did. And he asked, "It's that bad that you need the ER?" No. I tell him, "I thought about urgent care but they don't have a CT scanner so they're just going to refer me, so I figure going straight to the ER is the fastest way to resolve this and be back in time to get the boys from school." Yeah. Cuz that's how people who are dealing with this crazy kind of medical shit and who are also raising two very young children and who are also working full time - have to think when it comes to an ER visit. It's not about the pain - it's not about remedying the situation at all costs - it's about balance and negotiation. How can we take care of potential internal bleeding and still be back in time to be parents? Oh - and we should probably bring our computers with us because we know ER visits are minimum 4 hours with 3 of those hours usually spent idle in the treatment room. Might as well get some work done while we wait.
We check in at 9 am. They take me back right away. I change. They set an IV (painfully). They take some blood. The doc comes in to talk to me to get his understanding of what's going on. He taps on my back. He says OK. We'll get you set up for a scan. He leaves. They try to take more blood because something happened with the first sample during processing. It's even more painful than setting the IV. Finally I get called back for the scan. They wheel me over in the hospital bed - because again - no one is allowed to walk in a hospital. We get to the CT room and the tech tries to flush my IV to test it before he hooks me to the contrast injector machine. I nearly jump off the table. The saline push burned so bad it was like my fucking vein exploded in my hand. He tries again - still hurts. Tries again but slower ... still freaking hurts! He calls in the nurse. She tries it. STILL HURTS PEOPLE. I finally break and tell them listen - set another IV if you have to because this is painful. So they do. And it doesn't hurt nearly as much and pushing saline through it doesn't hurt any longer - it just tastes bad. My hand - on the other hand - feels like it was hit with a hammer.
Long story shortened - they scan me, we wait for results, we finally talk to the doc. There's a small sub capsular hematoma (bit of blood) in my liver, but that's most likely not causing the pain. There's also a mild to moderate pleural effusion around the base of my right lung, which most likely is the culprit. Especially because it feels the worst when I'm laying down and that side is up. The fluid can move around and can be painful as it does. Think of it like a level ... the air bubble always rises to the top. Well, that pocket of fluid between my lung and the lung lining, rises to the top when I lay on my left side. And what's the cause of the pleural effusion? Most likely mets he says. Mets in my lung that is irritating that delicate lining. Most likely not caused by the biopsy.
That's what I get for asking to get scanned. The pleural effusion wasn't noted in February. It's been 3 months without "effective treatment" as my doctors would call it. If this little bit of scan is any indicator of what is to come during my next PET CT - which is supposed to happen in the next couple weeks - then I need to get my mind right and ready to receive some shitty news.
Do I believe the fluid is from new mets? I don't. I honestly believe it's from the biopsy. I believe they either nicked the lining or just the procedure itself irritated my liver which in turn irritated my lung because it's all in the same area. The fluid pocket is in the bottom, back portion of my right lung, centimeters away from where they took samples from my liver. I believe it's from the procedure. I could be completely wrong - but we'll see I guess.
Currently I'm waiting for the NCI MATCH central lab to finish processing my biopsy and assign me to the drug arm that matches the genomic mutation and correlating drug. Hopefully we'll hear back from them next week. The trial coordinator thought it would be this week, but so far, nothing yet.
In the meantime, today is Good Friday. Camden was home from school today, but Nicholas' daycare was still open. So while Nicholas was at care, Camden and I caught a mother-son movie. We haven't had a mom-son date in a while. He's currently into Power Rangers, so of course, we saw Power Rangers. Someone should have warned me that they don't even morph into their armor and start really being "Power Rangers" until the last 20 minutes of the 2 hour movie! Add to that the 15 minutes of previews before the damn thing started - do you know how hard it is to keep a 4 year old seated for 2.5 hours while we wait for 20 minutes of monster growing, sparks flying, karate-chopping, 4 year old attention-holding action? It's freaking hard! Thank goodness the movie has been out for a while and there were less than 10 people in the theater. I finally moved us down to the entrance row and let him go bananas in the walkway until the movie was enough to capture his attention. Talk about stressful.
Earlier this morning I tested laying on my left side, to see if the pain would return. It surprisingly didn't. It still wasn't normal feeling - but it was painful like yesterday. I could be a fluke, it could be not. Either way, I'm sure I'll be testing it again and again until we get new scans to tell us what the frick is happening inside. Those scans will set the baseline for the trial - what we'll measure success against.
I cannot tell you enough how incredibly hopeful I am for this trial drug to work. I seriously can't. I try not to put all my eggs in this basket - but it's hard not to. Really hard.