NO CANCER!

I got the preliminary biopsy results in and....NO cancer! No lymphoma, no pancreatic cancer, no rare crazy pancreatic cancer! Imagine that! The doctor was definitely shocked, after looking at the thing on my pancreas he was convinced it was cancer. In fact, the only thing they could find in the biopsy sample was "some sort of possible infectious process" but no identifiable infection, bacteria, virus etc.

I am SO relieved, I think E almost passed out in relief. It was like a weight lifting off our chests. I am hoping this is it and there is no further treatment needed but I might not get that lucky. The assistant who called said they might still want to pursue some sort of treatment because of the location and the fact that the "thing" is still present. I'm thinking of asking for another ultrasound to make sure it's disappearing and in the meantime I'm hoping it skedaddles post haste. 

Then, the next day, another assistant called back to say the infectious disease specialist wants me to come back in and get tested for more weird things. I've already tested negative for every "usual" infection so now they'd like to go tropical. If you've been reading this blog, you know how ludicrous this is - I've been doing nothing but fertility treatments and work. I haven't gone anywhere exciting or risky lately because hello, fertility appointments! They're practically every other day! I think it's highly unlikely that I picked up Dengue Fever at my Beverly Hills fertility clinic or squeezed in a secret African safari between monitoring appointments.

And the tests he ordered were not just obscure, they were really obscure. I went into the lab and they couldn't even figure out what type of fluid the tests were asking for. Blood? Pee? Poo in a cup? They weren't in the reference book, the main lab they didn't recognize them, and although the techs gave it their best shot, the labs got bungled. Another phone call and it was back to the lab for more vials of blood so they could try again.

When these tests come back negative, which I fully expect them to, we are officially jumping back on the TTC wagon with what I'm thinking will end up being an April transfer. My RE Dr. D is on board with something sooner but since the tests wont be back before the March cycle starts, I think April is a safer bet.  That gives me another month to start up my vitamins again too since they made me stop everything when I got sick.

In the meantime, it's hard to be worked up or upset about anything right now. Every time something goes wrong or doesn't work out according to plan, E and I kinda shrug, look at each other and go "eh, no cancer!" and all is well. It's a wonderful feeling :)

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.

Liver Ups and Downs

Well it looks like things are getting better and worse at the same time. My liver enzymes that indicate inflammation are going down slowly but surely which is wonderful.

• ALT:  Normal less than 54:  435 --> 371 --> 170
• AST:  Normal less than 30:  249 --> 162 --> 90
• GGT: Normal less than 42:  444 --> 370

On the other hand, my liver damage and bile duct blockage numbers appear to be going up, when we can't find anything blocking my ducts.

• Alkaline Phosphatase: Normal less than 125:  275 --> 325 --> 432
• Bilirubin: Normal less than 1:  1.2 --> 1.4 --> 4.0 

The results of my MRI are in and they looked at every duct in my gallbladder and liver etc. Not a single stone or blockage or any physical reason could be seen for my crazy numbers and liver symptoms. The doctor knows something is wrong, my liver cells are obviously being damaged but they're just at a loss. There's a chance that maybe the biggest lymph node is pressing on a duct but it seems weird that it would only do so now when we know it's been enlarged for so long. My alkaline phosphatase was normal on January 8th too so the cellular damage appears to be somewhat recent.

Up next is the PET scan which they don't expect to show anything now. It was mostly to look for lymphoma and my primary care doctor is fairly sure it's not lymphoma at this point. After that, I have an appointment with another liver specialist who will hopefully have some insight the others haven't. In the meantime, I've been told again that they have no help for my itching, fatigue and orange pee. Lovely.

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.

Liver Limbo

When we left off, I was waiting for a call back from the single person who scheduled and performs CT guided needle biopsies. I left my information on Monday and when he hadn't called me back by Thursday, I was started to get a bit annoyed. I then got a cryptic message from my doctor's assistant telling me that she had a message for me. I know there are strict regulations on how to deliver medical information but really, a message to say I have a message? I finally got through to them and was told that my doctor had changed her mind and I would be going for a PET scan instead of a biopsy. Another nuclear test yes, but at least this one didn't involve a huge needle so I wasn't about to complain.

I scheduled my PET for the next available appointment, January 22nd and prepared to wait. The chest pain was gone, and aside from the fatigue, pain when I yawn, and cold symptoms I felt much better - no more crippling pain in the middle of the night. It seemed like I was on the mend until I started having weird, fairly mild stomach aches. I powered through them and figured it was just my body being a pain in the ass until I started to notice some weirdly dark pee. It's a TMI subject but I usually pee clear, so it was a noticeable change when it started getting more and more yellow until this morning when I woke up to nearly orange pee. I also woke up itchy, like I have a bad case of winter skin, especially in my hands and feet. I emailed the doctor who has been most helpful thus far and she told me to take myself post haste to the lab to repeat my blood work. Ugh.

Still thinking it was probably winter skin and my stomach being weird, I finished up my plans for the day and dropped into the Kaiser lab around 5pm. It was pretty busy so I listened to my Harry Potter audiobook while I waited and after a 30 minute wait finally got called in to give blood. I can still only draw from one good vein and after all the IVF tests and lab work I've had done, I swear this vein is going to give up and refuse to give any more blood.

I finished up, headed home, and maybe an hour later my test results came back. They were not favorable. My liver tests were perfect on 12/28 when I first went in to urgent care with the horrible pain, but somehow in the past two weeks they've exploded.

AST:  19 on 12/28, now 249 on 1/13
ALT:   27 on 12/28, now 435 on 1/13
Bilirubin:  0.4, normal is less than 0.2
Alkaline Phosphatase:  50 on 12/28 now 275 on 1/13 

Of course my white count panel, my kidneys and everything else came back perfect, so no signs of infection.  It looks like the lab test results finally caught up to the visible swelling on my CT scan and my liver is angry.  Since my labs were done after hours, I have to wait until tomorrow for the doctor to respond to my email and in the meantime, I'm still itching all over like a crazy person. I still think this is the Lupron but regardless of what it is, my body is not a happy camper.