I have always been pretty open and honest with my health stuff because I don’t really see the point in not being open and honest with it. I generally find a lot of comfort and information from people who have “been there, done that” and I hope that maybe someone else can feel the same way regarding me. That being said, things are a bit in the air right now, and I’m being asked a ton of questions that I really only want to answer once because, honestly, I’m really having a hard time talking about any of this. So, in an effort to continue my open dialogue regarding this stuff, and also the desire to only have to really say all of this once, I’m going to lay down what’s been going on here.
This year has kicked my ass. I really can’t put it any other way. I had severe bleeding issues early in this year, which resulted in a surgery which seems to have fixed the problem, but who knows, in April. Then, in May, I went to my routine cancer screening with my cancer doctor.
I’m in remission, after three battles with that particular beast, so neither of us expected anything. He wanted me to get an ultrasound of my neck, and a ton of bloodwork done (because I’ve been battling severe, extreme, incredible exhaustion recently and we wanted to see if I had anything, like anemia to explain that). He also changed my hormone medication, to see if maybe that could help with my tired-all-the-time-ness.
My doctor and I both had the same thought. I’d do all these tests but I’d be fine because it’s been nine years since my tumor was removed and yeah, I’ve had lots of drama with recurrence and all that stuff but my scans for the past two years have all been clean and the chance of it recurring were so slim they were laughable. Basically, we were doing these tests because we had to do them for ten years just to make sure everything is clean. Once ten years after my second “all clear” PET scan is past, with ten clean scans in ten years, I’ll be considered “cancer free” rather than “in remission” and I won’t need to do these tests anymore.
He ordered a “full chemistry workup” because I’ve been so exhausted recently. Basically, he wanted to see if I was severely anemic, perhaps due to the bleeding problems I’ve had earlier this year (which was so bad, I almost needed a blood transfusion. This year has been spectacular.). I mean, it’s almost impossible to wake me up in the morning, and then I just spend the entire day in a complete fog because I’m so tired. Not like *yawn* tired, but tired to the point where I have to take a nap each day with my kid just to make it through the day, and she wakes up before I do. and then I’m ready to go to sleep for the night around five o’clock.
So I schedule the ultrasound of my neck with the hospital and get my bloodwork done on the same day. I felt really relieved after it was done. Like, “Woo! One more year down the tube, and now I start year three of remission. I’ve got this! Maybe I’ll need iron pills but so what!”
My hospital, as it happens, has an online portal for patients where we can get all of our test results, radiology reports, doctor notes and everything on it. So I logged in (because years of health drama has taught me to be on top of all of my reports and come prepared with them because a patient must ultimately advocate for themselves). So I log in, and my radiology report is there, and my blood tests are there and life is good.
Now, I expected nothing. Maybe anemia to explain my exhaustion, but nothing else.
Instead, I got a report of two “pathologically enlarged nodes” on the right side of my neck with a whole bunch of jargon attached that basically amounts to, “these suckers show all the signs of being cancerous.” The radiologist recommended a CT scan with contrast for further evaluation. My bloodwork was fine, except I’m borderline anemic, not even anemic enough to need iron pills, just kind of “meh” anemic. The reports on my red blood cell count, or whatever the hell it’s called, was kind of weird in the tests, but that amounted to “We don’t know if that’s to do with the bleeding issues you’ve had, or if something is going on with your blood that we’ll need to investigate.”
So I waited, and my doctor finally called yesterday.
He is not comfortable with basically anything that my tests showed. My exhaustion isn’t due to anemia. My red blood cells are kind of wonky. He’s sending me to a surgeon to get these cancer-looking lymph nodes removed, and possibly get a bunch of surrounding tissue biopsied. I go to my surgeon to meet with him and discuss next steps on June 7. Essentially, it’s up to the surgeon what he wants to do, but my cancer doctor faxed a long letter to my surgeon saying he is advocating surgical removal and soon, along with biopsies and necessary further testing.
While the radiologists recommended “a contrast-enhanced CT scan for further evaluation” my doctor just wants this crap out of my neck. Period. We can do tests and etc later, but right now it’s bad enough that we should skip all the in-between steps and just slice and dice that stuff out of me.
The problem in all of this is, my thyroid (which was the cancer I fought three times) is fine. My thyroid-related blood tests were fantastic. There’s “no pathology in the thyroid bed” and my TSH, which is the hormone that marks cancer and is watched very closely in people like me, is 0, which is where it should be. This basically means, I do not have thyroid cancer.
Which means, whatever is hanging out in the lymph nodes on the right side of my neck is not thyroid cancer. It’s very likely another cancer. And there can be things assumed by the placement of the pathologically exciting lymph nodes, but really, no one will know anything for sure until the lymph nodes are removed and dissected/tested, biopsies are ran, and further testing is done. Essentially, all I know right now is that I’m really, really tired all the time, and I most likely have cancer but we don’t know what it is, or where it is and we won’t until surgery and more tests are done.
So that’s my update. that’s all I know, and that’s basically 2019, so far, summarized. I’m really upset. Really raw. Lots of tears, but otherwise I’m okay. I won’t know more until after I meet with my surgeon in about two weeks. I think if this had to do with my thyroid, I wouldn’t be this upset because I’d know what to expect (seeing as how I dealt with that beast three times, for five years), but this huge “signs of cancer are there but otherwise here’s a gigantic question mark” that I’ve got hanging over me right now is the worst feeling ever.
More updates as I get them, but if you’re wondering why I’ve been so quiet, this is why. And if you’re wondering, it’s basically completely constipated my creative flow. I’m sorry, but it seems I can’t really produce anything when I’m feeling like this. Not reviews. Not writing. Not photography. Nothing. I’m just… blank.
And screaming. Inside, I’m doing a lot of screaming.
The internet is hard, you put everything out there and people who read your stuff, read this too and are touched and want to give you a hug. But it’s the Internet. And they want to say something but don’t know what to say. In person we would probably just commiserate quietly.
I don’t know what to say….but I hate the idea of a blank combox and you feeling like no one heard you. I heard you and it sucks! I hope it all works out and is easily treated.
Damn. I don’t even know what to say. This just sucks and is so stressful. It sounds like you have a great doctor who is advocating for you. Man, this sucks. Just know that you’re in my thoughts and thanks for letting us know what’s going on.
You don’t know me. I’m just someone who reads your blog on and off. But like Chad said above, know you’re not talking into a void. Cancer totally sucks. Questions without answers suck also. Best wishes