When Acute Hepatitis is Good News

 I'll start at the end, which is where the good news is, then I'll explain how we got here. We've learned that my liver IS the culprit that's caused my stomach to fill with fluid and many of my other issues. But it's not liver cirrhosis (which would have been very bad). It turns out that my Keytruda treatments caused me to develop acute hepatitis. Now people don't normally get excited about hepatitis. We're excited though. It looks like no permanent damage has been done to my liver and we can hopefully get it back to normal. Wanna guess what the treatment is?

More steroids! So I'll once again get all the great steroid perks like increased energy and appetite, alongside all the steroid drawbacks like insomnia, facial swelling, muscle weakness, and calcium depletion. But if we can fix my liver, it should all be worth it. (I'll also be taking diuretics, which help take fluid out of your body and make you pee constantly. Those aren't treating the liver though, they're just to help keep some of the fluid swelling off my stomach). 

So how did we get here?

My last blog post had us doing a portal vein study. Those results actually came back perfectly normal. My condition had continued to deteriorate though. I was so swollen with fluid I looked seven months pregnant!

About to give birth to 2.5 liters of fluid!

I was struggling to breathe when I walked even short distances. Eating was nearly impossible. My weight was stable, but I could tell I was getting malnourished because my fingernails were starting to come in looking very unhealthy. Something had to give.

So my doctor decided to check me into the hospital. My hospital has a special unit for bone marrow transfer patients that's entirely separate from the other hospital units. It was constructed to minimize places dust or germs could accumulate and catered to patients like me in every way. While there we were able to get a paracentesis done, taking 2.5 liters of fluid off my stomach. And that wasn't even all of it! They also tested the fluid, which came back normal. We did a CT of my abdomen, again clearly showing my liver was enlarged. Then we had the main event, a liver biopsy. Once the biopsy was completed we decided I would go home for the weekend. The results wouldn't be back until Tuesday or Wednesday and we couldn't do much of anything in the meantime.

I continued to feel exhausted at home. I was still getting short of breath at the slightest physical effort and eating was still a challenge, even after the paracentesis. On Wednesday I was back at the doctor for results and it was actually really emotional for me. I'd been so worried about cirrhosis, that even the "good" news of hepatitis struck me weird and I cried. After a day to process it though, and a meeting with a gastrointestinal specialist too, I'm feeling much better about everything. I *did* start 60mg of steroids yesterday too though, so that might be some of what has me feeling better.

As far as the acute hepatitis goes, there was a lot I didn't know or understand at first. This isn't a viral hepatitis and doesn't have a letter associated with it (like Hepatitis A or Hepatitis B). It is a drug provoked hepatitis that can, apparently, be treated with steroids and cured. It's also not contagious in anyway, so that's great too. I will be going tomorrow for another paracentesis to take more fluid off my stomach. If we're lucky, this will be the last one though.

Now we just have to give everything time to work!

When You're Slaying the Dragon, but Get Taken out by a Trap Door

 Let's start with some good news. I went for a PET/CT scan on Monday. My usual hospital is currently replacing their scanner, so I had to go to a new hospital whose scanner is in a mobile unit outside the building. 

Great scanning powers, itty bitty little living space

Although my doctor sent the images from my prior scan over to this new hospital, the radiologist felt that it wasn't his job to compare the films and gave one of the least helpful scan interpretations I've ever gotten. My doctor was obviously not satisfied with that, so he had the new images sent over to my usual hospital. After reviewing them, he said that this scan looks even better than the last one and that it doesn't look like there's any Hodgkin's in my lungs.

That's the slaying the dragon part. Huzzah. For at least the time being, it seems we have the Hodgkin's under control.

But woo boy does it seem like everything else is f*cked. 

Since my last post, I went on steroids to try to boost my platelets. We also tried IV IG to boost my platelets. Eventually we started N-Plate injections for the platelets. After 3 or so months of my platelets hovering around or below 10, we finally saw some improvement over the last 3 weeks. On Tuesday my count was 113, and a week prior it had been 112. That's still low, but it's less scary than single digits.

Steroids, if you don't know this, are like magic. They can give you wonderful things (like energy, an appetite, and the ability to breathe normally), but they come with a price. You also don't just take steroids for a day or two. Depending on what dose you start on, you can be tapering off them for weeks or months. My face had started to swell up a bit, but far more concerning was how large my stomach was getting. Steroids cause your body to take fat from places like your legs and butt, and move it to your stomach. I don't know why. Yes, it is weird. So when my stomach got all swollen and distended, I assumed it was the steroids fault.

I've been off the steroids for like two weeks now though, and my stomach is worse than ever. It's constantly distended and taut. I feel full all the time and eating makes me feel miserable. Today I went for a portal vein study, which is an ultrasound that looks at the blood flow to and from my liver. It seems like maybe my doctor suspects liver cirrhosis, which would actually explain a lot of my symptoms. Swollen ankles and feet, shortness of breath, weakness. We'll have to see what he says at my next appointment though. I've panicked myself about my liver before and that was a false alarm. 

Overall, I'm back to feeling pretty cruddy. Just walking slowly upstairs to go to bed takes my oxygen saturation down to 86-92 and shoots my heat rate up to around 130. I have to keep my legs elevated or they swell and then hurt. And my dry mouth is still so bad that I have to eat soups or very wet foods. I also just don't feel motivated to do anything, even crochet or watch tv. 

But we are going to clench onto that good news about the Hodgkins and keep pushing forward. I refuse (or at least very strongly object) to have battled this cancer dragon for so long and then get beaten by something like low platelets.