WE ARE DONE (for now)!
NO MORE CHEMO! Yesterday was officially my last dose. While I still have a table full of other meds I’ll still have to take, the daily poisoning that I’ve endured for the past two-plus years is over! I want to give a HUGE THANK YOU to Kat and everyone else who has endured and put up with me over this less-than-fun journey. This is a trip that I do not care to repeat, ever, though that is, in reality, highly unlikely. Still, my oncology team is convinced that my numbers have been good enough for long enough that we can consider my leukemia to be in remission! PARTY TIME!
Well, okay, maybe hold up on that party thing a little bit. The doctor was careful to explain that being in remission doesn’t mean I immediately stop showing symptoms. Doing daily chemo for over two years means I have a lot of the drug in my body. The poison isn’t going to suddenly go away just because I stop adding to it. Recovery from the drug could take just as long as the chemo did, and there are some symptoms, such as chronic fatigue, that may never go completely away.
One of the things the doctor warned about was symptoms seeming to disappear for a while and then suddenly returning without any warning. While nausea and night sweats are the symptoms most likely to reappear, he warned that I should always keep my cane handy because there’s no way of knowing when my muscles might decide to shut down and stop working. He said the symptoms can also mimic a cold or the flu. Should such symptoms reappear, he requested that I call the cancer center before calling my GP to consider whether what I’m experiencing might be a leftover from the chemo.
What does ‘being in remission’ mean if I’m still going to be just as sick? Let’s start here:
The doctor emphasized that there is no way to be absolutely sure that CLL is in complete remission. There is a test that can be done with a bone marrow sample, but it is still considered highly experimental as no one is quite sure what to do with the results. As a result, he recommended against the rather painful procedure. Instead, I’ll do quarterly check-ins with the nurse practitioner, and as long as those pesky numbers don’t start to climb again, we’ll assume that the remission is holding.
There’s also no way to accurately predict how long the remission might hold. Five years is pretty much the max for most people, but there’s always the chance it could be as little as six months. His recommendation was pretty standard: get plenty of rest, eat well, exercise when I can, and avoid any serious stress. Apparently, the doctor hasn’t been reading a lot of news lately.
In the meantime, I have a fine needle biopsy of a nodule on my left thyroid this morning. My anxiety wishes that Kat could be there with me, but she has other things to do and, by any means of accounting, this is a rather low-risk procedure. I just have to stay completely still.
HAVE YOU MET ME?
I don’t think I’ve ever stayed completely still for anything! A local anesthetic will be used, and then they carefully poke a needle into my neck. I can’t imagine anything going wrong there, can you? I’m told the whole thing shouldn’t take more than two hours, and then I can come back home and sleep off the anesthetic.
Having a nodule is not necessarily indicative of yet more cancer. Should the biopsy come back positive, thyroid cancer is typically handled by an endocrinologist, not an oncologist. Same building, different floor, different doctor. The nodule has sat there untreated for the past two years, though, so chances lean more toward it being benign.
Where do I go from here? Assuming the whole thyroid thing is a nonissue, I have an appointment with the neurologist that may be rather involved. There could be a surgery or two involved there. I’ll need to see a urologist again, and there could be a surgery involved there as well. I still need to be in an assisted living facility, but as Medicare/Medicaid budgets get tossed around, who knows when that might happen?
A part of me wants to get back to work taking pictures again. I would have to make a lot of adjustments, though. I need to be able to sit down more often than standing. Indoors is better than outdoors. No extreme weather in any direction. No chasing breaking news stories. For that matter, probably no chasing static news stories. Still, I feel like the photo ideas have just been piling up for the past three years. I want a camera in my hand again.
For now, we’ll just worry about this whole FNA thing, get through it, then chill for the weekend. I’m sure next week will bring a whole new set of problems. There’s never any shortage.
So, who’s down to party?