Monday, April 16, 2018

Tu-mor or Not Tu-mor…

Warning: Long story that I promise circles back around and makes a point. 
This is also a look into life with ongoing medical appointments. Yes, it gets stressful, but it’s all to make sure that I’m healthy, which is the goal! 
My doctors are excellent and work hard to stay on top of my health. I have a really great team looking out for me.
CliffsNotesπŸ…‘ version listed at the bottom under "Takeaways" 

I saw a Gastroenterologist in January. Having Dermatomyositis (DM), any Gastro Dr. is on high alert for dysphagia. 

Dysphagia is when your throat muscles weaken and you have difficulty swallowing and is a potential risk for someone with advanced DM. 

I had been having some trouble swallowing pills. This on top of thinking that I was having a heart attack at one point (long story) and feeling nauseous after eating led my general practitioner (GP) and I (after a few tests to make sure that my heart was healthy) to assume that I was experiencing GERD. 
My heart is fine, so my GP recommended that I take Zantac twice a day, which I have been for a few months and feeling pretty great. 

I did want to discuss the whole GERD thing further with a Gastroenterologist however, so I made an appointment. 
“Gut” health and auto-immune disease have been closely correlated and I wanted to make sure that I was as informed as possible of how to best care for myself and my own potential dietary needs. 

As I mentioned though, any Gastro Dr. will basically freak out at the word “Dermatomyositis” (which he did) and want to first rule out Dysphagia (which we did). 

I had a “Swallow Study” done in February, where a radiologist and speech pathologist had me eat/drink barium-laced foods/beverages and watched/analyzed via x-ray.

No dysphagia! 

So we were to move ahead further discussing GERD. 

Then in March I got the most terrible, sharp pain in my left side that radiated to my back, waking me up at night. 
It lasted over a week and prompted me to visit urgent care where they did a CT scan of my abdomen and found two mass/lesions on my liver and pancreas. 

I discontinued Azathioprine/Imuran right away per the advice of my Rheumatologist (which I have been taking since my last big flare in 2015 and wondered if I still needed, but was too afraid to alter meds since I’d been feeling good) and went in for specialized blood tests from the Gastroenterologist, all of which were in the normal range. πŸ‘

An MRI the following week revealed a 3.3cm focal nodular hyperplasia (FNH) in/on my liver and “stranding” at the tail end of my pancreas. 

I met again with the Gastroenterologist last Friday. 
FNHs are benign tumors that are usually nothing to worry about. We’ll look at it again in 6 months (via MRI) and see if anything has changed and go from there. More than likely we can just ignore it! YAY! πŸ™Œ

The not so awesome news, but nothing to be seriously worried about is that I do have pancreatitis. 
This is what has been causing the ongoing pain in my abdomen and was caused by my Azathioprine.

Pancreatitis may have been causing my GERD symptoms as well (nausea after eating and abdominal distention). The FNH can also cause GERD-like symptoms, but the Gastro Dr. feels pretty confident that mine is asymptomatic and the pancreas is what is causing my discomfort. 
So we table the GERD talk for another 6 months… 

The pancreatitis is what we’ll mostly be looking at in 6 months on the MRI. The Gastro Dr. is confident that with a few adjustments to diet and not taking Azathioprine, that it should resolve on its own. 

The diet adjustments are similar to what I have been attempting (semi-successfully) for the past couple of months, but now need to kick it up a notch (or fifty).
Avoid fatty, salty, high-sugar, processed foods and alcohol. An anti-inflammatory and auto-immune diet is also recommended and that just so happens to be my ongoing 2018 goal! 
Wooot! πŸŽ‰

The day after learning this, I decided to have a cider beer and a cupcake which resulted in almost instant stabbing pain in stomach. Okay! Point taken! 

I feel good about the current plan, especially since it gives me motivation and accountability for health goals that were already important to me. Hopefully, I’ll be able to really contribute to my own healing! 

Takeaways from this post: 
I have a healthy heart and throat muscles. 
I have benign FNH tumor in/on my liver that is likely nothing to worry about! 
I have pancreatitis, that [while a little uncomfortable] is not life-threatening and should resolve within the next 6 months. 
I may need support from friends and family to help me resist the fried foods, sugar and booze! 

In other news, I got my energy back last week and have been feeling energized and like myself!
We got 17” of snow over the weekend (yes, it’s APRIL)! 😱
Therefore, we unfortunately didn’t make it to the golf dome to try to hit some balls for the first time since shoulder surgery, but I’m ready and raring to go! 

My guess for an early April opening day at the course was just a little off! Haha! πŸ˜‚

Friday, April 6, 2018

April Check-In

Infusions are done. I’m exhausted.
These past two were a little rough, but I made it and now gladly on my way to feeling great again for 6 months!

Infusion #1 broke me down. My veins weren’t cooperating and my main nurse was passive aggressive and frankly just awful. The stress was just too much. I cried. Recovery was just a few days of resting.

Infusion #2 was much better, although the recovery has been more than I’m used to. I’m on day 18 post infusion and still feeling like I was hit by a train. Like in Ghostbusters II when the ghost train drives through Winston. That’s how I think I feel. Haaha. (click here if you don't remember that scene πŸ˜„)

So, now I’m good until end of September. Then, I’ll be on track for infusions in April and October, avoiding summer completely! Hooray!

Waiting 7 months instead of 6 was tough. The Rituxan really started to wear off at just past the 6 month mark and I was really fighting through exhaustion. I’m thankful that I didn’t flare (although you should see my hands right now!) and I’m glad that I won't need to do that again!

Now summer can be for me! Golf, gardening and all the things that we Minnesotans do when we emerge from hibernation time!

I have had a few additional tests/findings that I will save for a separate post. One of those findings has me holding off on Azathioprine/Imuran until further notice, which could be a reason for some additional fatigue.
I hope that by the next time you hear from me, I won’t be fighting falling asleep while typing!

Happy Spring!