Biopsies and Confusion

I know it's been ages since I last posted, but we're still woefully in the dark about what the fuck is going on in my body. Thus far, my doctors "think" they've got a handle on what physically happened to cause my symptoms, but we still don't know what the node/mass/thing in question is.

Going back to the beginning to form a coherent timeline:

• Christmas eve I inject my first Lupron dose into the right side of my belly. An internal lymph node? mass? thing? between my liver and pancreas, or on my pancreas? starts to swell immediately and put pressure on the branch of the common bile duct right by my liver. The "thing" is basically right under where I injected.

• Christmas day I take my second dose of Lupron on the right again, the "thing" swells further and presses down completely on the duct, effectively closing it

• If you've ever had a gallstone or gallbladder attack, you'll know how painful they are. Because my duct was being pushed shut, I basically experienced a gallbladder attack without the usual stones for almost two weeks. After about 12 days, the "thing/node/mass/alien" shrinks a little and the duct becomes partially unblocked so I stop feeling like I'm dying.

• At this point, the bile has been backed up into my liver for several weeks and the liver cells are being damaged. I start peeing orange and itching horribly all over which is super fun. My billirubin goes up to 4 but I somehow don't turn yellow - this perplexes the doctors.  

• Two ultrasounds, a CT, an MRI and a PET scan later doctors determine that this "thing/lymph node/mass/alien" is the culprit and want to put in a shunt to open the bile duct that is being squashed shut.  They start suggesting the "thing" might be a cancerous lymph node because it flares on the PET scan, although  infection and inflammation will also demonstrate the same uptake of florescence. The argument for this theory is thin, it's basically that they think it's lymphoma because they can't think of anything else it could be.

To tackle this "thing", the doctors devise a three procedure plan, each of which requires me to go under general anesthesia, have a tube, scope and various other instruments down my throat and which have the usual risks of surgery including an increased risk of pancreatitis. To prevent further liver damage, they want to put in a shunt asap in the first procedure. While they'd normally combine the shunt placement with a biopsy, the Kaiser near me is still establishing permits for their GI clinic so the biopsy has to be done at a separate hospital. Thus, the second surgery is scheduled to biopsy the "thing", followed up by an eventual third procedure remove the shunt.

This plan is set in motion and all seems full steam ahead until they run my labs the day before the first surgery. Somehow, on their own, my elevated liver numbers have dropped way down. My bilirubin is only a little elevated, around 1.4 when it should be under 1 which is a huge improvement from 4.0.  It appears the "thing/mass/lymph node/alien" has shrunk some on its own and the duct is opening a little more. Given that my liver is no longer being actively damaged, we decide to cancel the first procedure and go straight to the second to biopsy the node. I start to feel normal again, less tired and am actually able to eat real food again. This brings us to today. 

Today was biopsy day and as far as I can tell, the procedure went very smoothly. I got to the hospital, had vitals and info taken, changed into my gown, and met with the anesthesiologist. There was a slight hiccup because I'm allergic to latex and the balloon they use on their endoscope has to be latex, but we tried to head off any issues with a massive dose of Benadryl before the procedure. I really hate IV Benadryl, it burns like a mofo when it's injected and always makes me feel incredibly loopy, but it's definitely better than swelling up and itching.

While I was hoping against hope that the "thing" would have shrunk down to nothing at this point, and the doctor agreed that given my improvement it might just not be there anymore, "the thing" was still present in all it's questionable glory. It appears to be on?/near?/in?/adjacent to? my pancreas and is still 2.5-3cm. The doctor decides here to refer to it officially as "the mass" because he's no longer sure it's a lymph node or lymphoma at all. If I was a 70 year old male, he might suspect pancreatic cancer, but even then you'd see some deterioration of the pancreas and mine appears to be in otherwise perfect health. He takes several biopsy samples of it, using a needle passed through my stomach and into the "mass" and I wake up in recovery with a slightly sore throat, but otherwise good health.

Just to confirm the improvement in my liver function, the doctor ordered another round of labs. I had them drawn right after my procedure and as expected, my liver function is back to normal. This is wonderful news, really great evidence that points to healing and recovery. I just wish it could eclipse the gaping "could this be cancer" sun that's in the process of blinding me. Since there's nothing else I can really do at this point, now comes the waiting game where we wait and wait and wait for the biopsy results to come back. Most of the tests, including those testing for pancreatic cancer, should take about a week but the tests for lymphoma will take up to two weeks. I really hope this isn't cancer. I was thinking it might potentially be a cyst, but at this point I just want the mass cut out. Even with an ultrasound right next to the damn thing in my stomach, the doctors are still completely stumped.

ER Miseries

After flunking all my liver tests on the 13th, my second doctor called me up and insisted I go to the ER Wednesday since it was the only way to get an "urgent ultrasound". She wasn't sure if this was the beginning of a bigger liver problem or the resolution of my existing problems and felt that given the dark pee and itching, things needed to be evaluated asap.

I went in, told the doctor exactly what she asked me to say and sat down to wait. And wait. And waaaaaaait. And wait. It took about 5 hours for the first doctor, the triage doctor, to actually see me. Urgent my ass. After explaining everything again,  the triage ER doc gave me an IV of Benadryl for the itching and drew maybe 10 or 11 vials of blood. I asked for some lidocaine before they put the IV in but was told they don't do that, and to make things more fun, they prefer their IVs in the inner forearm where the tube leaves a nasty, painful bruise. Then, you guessed it, back to waiting. And waiting. And listening to the other people waiting complain about waiting.  I'm sensing the theme here.

Another hour later, there was an opening in ultrasound and off we went. They insisted on wheeling me there, probably not a bad idea since the Benadryl made me feel so loopy and lightheaded. The ultrasound tech was super thorough, he actually pushed crazy hard with the wand and I was sure I'd have bruised ribs, but better to be a little sore with a a good picture. Then it was back to the ER triage waiting room. To wait. Again.

I was hoping they were just waiting on someone to read my ultrasound before I could leave but the ER nurse said they had to admit me. So more waiting, more listening to this lady I'm fairly sure was just looking for pills complain, and another hour later, they finally had a bed for me! Huzzah!  I went in, put on my gown, and just a little bit later the official ER doctor came in to see me.  I explained everything again for the third time and just for fun, the ER doctor had them draw another 10 vials of blood. I was less than impressed since I already had two holes in my arms but she wanted to run the hepatitis tests for a third time.  She then looked at my ultrasound and since she couldn't see anything but my swollen liver, spleen and lymph nodes, she insisted it must have been an invisible gallstone that you somehow couldn't see in an ultrasound, CT scan or labs. I was less than impressed, my primary card doctor, second doctor and two specialists had already ruled out gallstones. I asked her how a gallstone could be possible, if the pain occurs when a stone is stuck and my pain continued several days after I had both the ultrasound and CT, wouldn't a stone be visible? Shouldn't I have other markers like high cholesterol or a high fat diet? She gave me more BS about an invisible stone and advised me to lose some weight. I wanted to hit her. She may have sensed this because she ordered an MRI "just in case".

Thursday morning, my primary care doctor calls me up after reading the ER report and essentially reams the ER doctor, dismissing gallstones which they've already ruled out because "there has never been any hint of gallstones or a problem with your gallbladder on either of your two ultrasounds, CT scan or labs". She is upset they won't schedule the PET scan sooner (they only do it once a week, it's not a popular test) and thinks I should have another super exciting ultrasound with a tube down my throat so they can ultrasound from the inside.  Unfortunately, she wasn't a fan of the liver supplements I'd just purchased and also dismissed my acupuncture herbs as "herbal crap".  My acupuncturist has me doing just the treatments themselves and after all of this, says I'm likely done with herbs for good.

I went for the MRI the ER doctor ordered Friday morning even though my primary care doctor said it was unlikely to show anything. I'm still itching like a crazy person and peeing orange but some of my liver enzyme tests came down a little so I'm choosing to see those as positives even if some of the other liver levels went up. All of my other labs are perfect, it's the strangest thing seeing my liver throw a fit as if in a vacuum.