Jul 2, 2017

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.

Jun 24, 2017

Lymphoma or No Lymphoma

Sorry for the delay. Tuesday we received the results of the CT scan. No large, hidden mass, however, the doctor saw concerning things in my thyroid. She said things like, "Well, maybe what's going on here is thyroid cancer that has metastasized to the lymph nodes. You need an ultra sound."  So we waited a few hours, and snuck in for an  ultrasound. Since then we were awaiting results. 

Yesterday evening, we got a call saying the nodules in my thyroid seem within the normal scope of a woman. Apparently, us women have extra lumpy thyroids.

So where does that leave us? My lymph system is still under the impression that my body is under attack. My doctor keeps bringing up a type of lymphoma, but it's slow growing, and most of the time, it's just monitored. 

Could I find out for sure, if I do have lymphoma? Yep. But, they would need to remove one of the lymph nodes to run it through tests. Thing is, I don't have it in me right now. I can't handle more pain, more needles, and cutting. Right now, I need rest. I need a break, with laughter, and naps, and distractions, and air, with exercise, and a routine. I need to detox, and breathe, go for walks, and meditate. 

I can't handle the possibility of further health problems, and I don't really believe that's what we're dealing with. I just had a fourth brain surgery. My body, from head to toe, my subconscious and mind, even my poor spirit, they have been thru the gauntlet. 

I'm still clawing my way back to normalcy, and it makes sense that my lymph system is completely out of whack.

If I start panicking, if it's too stressful to watch and wait, I'll schedule the procedure to remove one of those enlarged nodes. For now, I need to chill, and give my body some extra love. This could have gone very differently, and I am so freaking relieved! No big old tumors, yay! If I am living with a little lymphoma, so what (which probably isn't the case anyway). I'm living healthy, and happy. And, for right now that's good enough for me.

Now I can schedule my brain MRI. (Never a dull moment.)

Oh, and to clarify, the possible lymphoma, would not be related to the glioma. Also, my doctor is comfortable waiting 3 months before I have to remove a node.

So, in a nutshell, we're going to triage and we'll deal with the current status of my brain tumor, which will help me make decisions regarding treatment. Lymphs are on the back burner, but I'll keep exercising them, and hopefully all that crazy stuff will work itself out. 

Thank you for the love and support - when things get crazy, and I don't know what to do, or what is going on in my body, you guys aways lift me up, and say the nicest things. I appreciate you all so very much! Sometimes I wonder how I'm going to face these obstacles that constantly keep popping up, then I remember I'm not in this alone. So thank you!

I don't have time for health problems, this house won't paint itself!