I know I abandoned this for a while but I didn't know much of what to say! So now I've had another scan and wrote a long note to a few friends, and I figure I can share that here too. Hopefully this is clear - I wrote it to people who are pretty familiar with a lot of what I do, but I still wanted to try to add in all the details too.
Just finished my usual two-day rounds of scans. I went into this one not expecting any good news, because it's been almost a year without any available treatment. I haven't been taking anything at all that could possibly help, so we just knew this was going to be one of the hardest scans yet. This is going to get really wordy, feel free to read what you want and skip what you want, too. The first day of this scan process is just the day when I get an IV placed and then get the nuc med MIBG dye injected. That's the full day. The dye needs 12 hours to sit in the body before the scan. So the next day is the actual MIBG scan - 45 min of laying on a tiny board literally taped to it so I don't move. This is actually easy. I usually fall asleep or I can watch a movie if I keep my head tilted to the side the entire time. Unfortunately I now also have to get another scan too called a SPECT scan. The scan itself is amazing and takes incredible 3D pictures. The process is painful. I have to lay on the same tiny board but now with my hands above my head for an hour. After 30 minutes, it starts hurting. After 40 minutes, I usually start crying. It's pretty brutal. But the images are the most detailed ones they can get, so it's pretty crucial right now. After those scans are done, I wait a few hours for all the necessary doctors to look over the images, compare them to all others I've ever gotten, and then come tell me what they've determined. Yesterday went more or less smoothly at first, even though they had some computer issues and trouble with IVs. But in the end, they got the labs drawn that they needed, they got the IV in me, I got my injection. When I get home later though, I have an email from my nurse practitioner who tells me that my liver enzymes test came back "a bit off" and they'd have to redo them tomorrow. This was really weird because my liver enzymes are ALWAYS "a bit off" - or a lot off, really. My main tumor presses against my liver, always has, and has always meant my liver function tests (LFTs) come back elevated. So it was weird of her to mention them. It got me freaked out. There aren't too many reasons why she'd even bother mentioning them. But she didn't explain beyond that so I just had to wait until the next day (today). Today, I got my MIBG scan and it went fine. I was bracing myself for the SPECT scan when the radiologist decided I didn't need it. We actually argued about it at first because I knew my oncologist really wanted them done, but the radiologist was firm about it and I guess in this case he has final say? Idk. But hey, no 1-hour-long torture session for me! Then I got my labs redrawn and had to wait for all these results to come back. The final news: My LFTs came back today normal for me, aka elevated, but that was actually a good thing, because yesterday, they apparently came in with a reading of absolutely nothing. They were very very worried that my tumor had finally punctured my liver and caused it to start to shut down. Based on the "normal" reading today and the scan images, which show slight growth but nothing toooo much larger than my last scans 4 months ago, they think it was a fluke. But I'm going to have to be really really watchful of that. They also can't be sure. The SPECT scan would have been able to show better whether there is any puncture there, but for whatever reason, I was being unallowed to get it today. The lab technicians did, however, draw more labs to do some tests to see if anything shows up in my blood. So, the good news here is that I seem to have narrowly averted a major crisis. The bad news is, that same crisis can still occur, and there's really nothing I can do to stop it from happening right now. Still no chemo available. Still nothing to do to shrink the tumor. The small tumors I have and the main big one do appear a light bit larger and brighter/more active, but thankfully no new spots have occured. I'm still considering doing another MIBG treatment - the one that leaves me radioactive in a lead-lined room and causes a lot of side effects for months afterwards. It's not certain if that is even a viable option because I still have a slow internal bleed and the official cause of that has never been determined. I'm probably going to get another bone marrow aspiration/biopsy (super quick procedure where they extract bone marrow from my hips) to check to make sure no cancer has gotten into the bone marrow and to determine if there's any preleukemia. That last one is fairly common in long-term cancer patients who have been exposed to a lot of chemo and radiation - aka, people like me. While preleukemia could explain away both my internal bleeding and my vision loss, it would not be a good thing. I've had this test many many times and it's always come back clean, but it's one of those ones that can have a lot of false-positive readings so it's best to keep getting them. It's an easy simple procedure that'll probably leave me bedridden for a week but that doesn't bother me in the slightest. If it comes back clean, I'll be able to do something about the preleukemia and slow that down and probably get rid of these other side effects. It it comes back negative, I now know what is causing my internal bleeding and vision loss, but it'll completely rule out my ability to get the MIBG treatment, which is really my last chance option right now for the neuroblastoma. To be perfectly blunt, things are not good. But to also put everything else simply: I still feel well right now. I am not the strongest I have ever been, but my day to day living is still of a high quality. I'm not willing to lose that just yet to try the MIBG treatment which I know will make me feel awful. For a long time. I don't even have any pain on most days. My thinking right now is to get the bone marrow biopsy done and out of the way, and then still just keep holding on. If something else occurs - if I become jaundiced again (which will indicate more severe liver problems), if I start feeling pain frequently or strongly, if something just happens - then I'll rethink the MIBG treatment. But not right now.
And just to let you all know too, my mental health was bad this past year, but it's actually been a lot better recently. Pretty much because I've finally just made this decision, such as it is, to hold off on treatment until I am absolutely forced to reconsider. If I haven't seen you during my bad months, you'd probably not even realize anything more serious has happened. But it has, and I was really struggling, and I appreciate the help and love from you guys.
