I haven't been vocal or forthcoming about some health crap that's been going on. To be honest, there's been so many other friends & family members with health scares, med issues, illnesses, and other not-so-fun things, I haven't wanted to add to it. But now that I don't need vibes or whatever other mystical internet powers I might have once summoned, I thought I'd share & get it out in the open to the 2 people who read this blog :)
Here's the "as condensed as I can get it" version:
3 years ago (ish) I got a CT scan. I can't even remember why..... Add that to some weird blood work results, losing my hair, joint pains, and extreme fatigue, and I started seeing an oncologist/hematologist, and endocrinologist and a rheumatologist to see what was going on. Lots of mystery surrounding the zillion appointments and gallons of blood I was giving over for testing. The CT scan I had showed abnormal lymph node growth, and we decided to monitor it. I was also told I *may* have Sjogren's syndrome, but they couldn't confirm. I don't know why.. It's not a widely tested and known disease, though its gaining in understanding... It was all very weird & unsettling.
Then I got pregnant, didn't have a f/u scan obviously, and just decided to focus on having a happy & healthy pregnancy. No meds, no tests, no nothing. Well, I did have more monitoring than normal - the suspected Sjogren's caused me to be high risk, as there are antibodies present that can cross over the placenta and damage the baby's heart. That was all fine & unobtrusive testing, nothing to do with blood results or lymph nodes.
I didn't call the Oncologist again until last summer. Went back to him, blood numbers were still wonky, CT scan showed that the lymph node had doubled in size - and was in a basically impossible place to biopsy. The only way to get it is to go cut open your stomach & go through to the back. Um, pass. Awesome all around... onto more testing. All my blood tests come back borderline, slightly elevated, etc. It's ridiculous. Nothing is a "hell yes this chick has X disease" but nothing says flat out no, either. Weird.
PET scan showed high levels of activity in more than one area. (Commence freak out). Bring on the bone marrow biopsy... not as awful as I thought it would be, but about as fun as you might imagine. The good news with the BMB was that it was NOT cancer. That was my Christmas gift last year.
Had a follow-up CT scan last week & my oncologist called me last night - over the last 6 months, ZERO growth in the lymph nodes, and no additional spots of activity or weird stuff showing up on the scans!! So I don't have to go back and see him until Oct, where I'll have more blood work and possibly another scan.
Still seeing the rheum for the Sjogrens - but my symptoms are relatively mild compared to others'. Like - more annoying than debilitating, so I'm lucky enough to not have to be on meds right now. Eventually I probably will, but I took the stance with the doc if I don't "have" to be on meds, I don't want to. And he agreed. The endocrinologist said my thyroid was borderline, not enough to do anything about it. I do have nodules on it, and I have to keep monitoring them for growth & changes, but I guess lots of people have them without ever knowing or having them affect their health.
So that's it. I watch the lymph nodes for growth or changes or more of them showing up. I pay closer attention to my body and do some self tests to see if I can feel lymph nodes in any other areas. I monitor my Sjogren's symptoms for changes. I deal with the hair loss, the inability to lose weight, the fatigue & the joint aches and just be happy it's not cancer.
For now. Because, as is my luck, Sjogren's is not only known to cause lymph node abnormalities (lymph node adenopathy, to use the jargon), it is also directly linked to lymphoma. Of which there are over 30 kinds. Ridiculous no?
One of these days I'm gonna wake up with zero pain, bright eyed and bushy tailed, 40lbs lighter, a full head of hair and no anxiety about what's next. One day :)
This was supposed to be an uplifting post about how I got great test results. As I write it out and realize it's doom and gloom, I guess I'm still kinda annoyed at all the testing and crap I went through, all to be told it's probably the Sjogren's that is causing everything, but we have to monitor you forever just in case. Haha, way to go, Cartzy. Always the optimist! Good grief.
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