Current MRI Results

Last night we got news that my MRI scan (taken a week and a half ago) showed stable results. There's scar tissue, which is to be expected, but because of the fabulous pathology from surgery, and these results, they are not necessarily pushing radiation and chemo at this point. Yay!!!

My next MRI will be in three months, which means I'm safe to heal and continue to recover from surgery, and have some fun!

I've resorted to using my left hand for most things, and my handwriting is atrocious, but I am having so much fun focusing on what I CAN do, rather than what I can't.

When my lymphs started retreating after two weeks of antibiotics, my GP prescribed 4 more for a total of a month and a half. I'm about halfway through and these little nuggets are clearing up! So, maybe this ISN'T some sort of new cancer. Thanks for putting that in my head, Mrs Ear, Neck & Throat Dr.

When I spoke to my neurosurgeon last night about the MRI results, we also discussed the enlarged lymph nodes, and the antibiotics, then she told me about a recent patient who she had to operate on because of a brain abscess. The patient had previously undergone a craniotomy years prior. Point is, the abscess was from a severe long term sinus infection. Wait, what? That can happen!?

It looks like people who have undergone brain surgeries have increased chance of sinus infections. What if I wouldn't have read that report and asked for antibiotics? I was seriously headed for a brain abscess! Frick, that's terrifying!!! I seriously love my brain surgeon, but I DO NOT want to do another brain surgery ever again.

The swelling in the lymphs has not completely resolved, but the fact that they're abating, is huge! As my surgeon, and GP point out, lymphomas do not get smaller with antibiotics. I am so grateful that I dug deeper, that I didn't shutdown when the ENT doc cavalierly threw around the word "cancer". I hope this infection continues to resolve, and that this turns out to be a cautionary tale about personal advocacy and ownership. I wish we didn't have to work this hard to find answers, and heal our bodies, to protect our health, but no one knows your body like you do. And no one has as such a vested interest, that's for sure.

Feet in the sand today, was like coming up for air.

The Plot Thickens

It happened again. I caught another medical oversight, and it could prove to be huge!

For those that have been following the blog for a long time, you know that after every procedure and scan, I request the radiology and surgical notes. I review, and read between the lines, assessing if my doctors are giving me the full scope of each situation. Fortunately, this has saved my ass many times. (I've been prescribed the wrong drugs, I have had information withheld about my tumor growing, I have caught inappropriate procedures just in the nick of time, etc.)

Well, here's another one to add to the books...

My ENT's (ear, nose, and throat) office called to see about scheduling the removal of the largest of my swollen lymph nodes, to analyze if we're looking at another cancer. Before I was comfortable doing that, I asked for copies of my CT and ultrasound reports. I got the usual runaround, "Um....we don't normally do that." After some gentle persuading, I was assured the documents would be uploaded to my online chart.

And this is where it starts to get good...

I woke up, a few days ago, and sure enough the reports were available. I hungrily scoured the pages for medical clues. They start by detailing the enlarged lymph nodes. They talk about the locations, the sizes, their characteristics. Also, when they retrospectively compared my current CT scan with the images from my January brain MRI, they noticed the slightly enlarged lymph nodes. This means that this is not a byproduct of brain surgery. Then, the final curiosity toward the very end of the page, was that they started talking about my nasal cavity, and how it's infected! "Wait....what?", I thought to my self. I mean, I was feeling the beginnings of a tickle in my throat, and a runny nose, but this CT scan showed an invasive situation.

Now, at this point you might be thinking, "Goss. Why is Jess telling me this???" And trust me, I would rather keep it private, but in my research and conversations with a buddy who works in the medical field, I'm aware that a chronic sinus infection can definitely cause prolonged enlarged lymph nodes!!!! And to clear it up, it just takes some antibiotics.

I know antibiotics are a hot button topic. In fact, my own father raised us on garlic, going just shy of calling them murderous, but I kid you not, I have never loved the idea of taking a drug more in my life. What if this whole lymph node mystery could resolve this easily???

So after reading the report, I was lucky enough to sneak in the same day with my awesome GP, excited to with this new possibly. 

The main point of this post, though, is that the ENT doctor didn't catch the infection. And she should have!

It is possible, even probable, that all of this craziness is because I have been dealing with a chronic infection. I won't bore you with all the details, but suffice to say there are many factors that fell into place. Always waking up with a mild sore throat, feeling mildly congested - that kind of stuff.

This infection was not going away, and it had been a huge reason why I've been commenting for over a year about being bone tired. This kind of infection makes you exhausted, just like living with mono.

Now, before we close the case, I have two weeks of antibiotics (paired with probiotics), and thankfully we will know pretty easily if this resolves my enlarged lymph nodes. They're palpable, so feedback will be practically immediate. I realize I still could have lymphoma, but this makes sense, and it is worth a shot!

What if I hadn't requested the report? And read it? And called my GP? And requested antibiotics? (She was pretty shocked, even disappointed perhaps, that the specialist had missed something so obvious.) 

Let's really hope that in two week's time, my lymph nodes will be clear, and my system back to functioning happily. 

I share this post in the hopes that you feel empowered to advocate for your body, and your health. We might not aways know why we need copies of reports, or why we keep getting the same premonition, but try to listen. It doesn't aways make sense right away, but life is a series of puzzles. You get clue after clue, and it's up to you piece it together.

Bing wasn't impressed, either.