See this meme? I love it. It comes from a site that basically tells me to stop fucking procrastinating, to own my fucking failures, to just fucking write. I particularly like this one: Stop fucking around, because I say this shit to my body ALL. THE. DAMNED. TIME. I just wish I could say this to my body and have it actually listen. But no… no one listens. Especially not my stupid ass cancery body.
After this last appointment with my oncologist it doesn’t seem like my body is heeding my call to just stop fucking around. In fact, it’s kind of like my body is flipping me the bird and telling me to stop telling it what to do. It’s starting to piss me off.
I’ve no idea if I can have this actually be a “long story short”. But I’ll try:
Last Monday I had my latest PET scan. The last one I had was 4 months ago. Up until this one I had been getting PETs every 2-3 months and my doc wanted me to have a longer break this time so hence, the 4 month hiatus period between scans. It was nice. I had a summer of only going to the cancer hospital for my monthly butt shots and that was basically it. It was a blessedly (almost) free summer of doctors and appointments. Doesn’t look like that’s going to happen now.
At the last PET scan, we had been tracking the nodes in my body that have been popping up. They have been relatively small and only mildly active so my oncologist basically has taken the “wait and see” approach to see what would happen. It wouldn’t make sense for me to get treatment on spots that were only mildly active and could potentially be controlled by my monthly lanreotide shot. For reference the areas in my body we have been tracking are as follows:
- Cervical (neck) node: This has been lighting up mildly active, relatively small. If you recall, I also had Papillary Thyroid cancer. My total thryoidectomy was done along w/ a lateral and central neck dissection (meaning they took the lymph nodes out of my central neck and the right side of my neck). 62 nodes were taken. 8 had cancer. As of my last blood test following THAT cancer my T3 and T4 levels were good and my tumor suppression numbers were good meaning my Thyroid Cancer was still dormant.
- Liver: I have had 2 treated notes w/ chemo embolization. There is an area just at the edge of the last embolization that has been lighting up again.
- Breast: I have had a spot light up there. We have biopsied and scanned and mammogrammed. It appears to stable.
- Mesenteric Lymph Nodes: This one is tricky. Last year, I had one light up. We had been tracking it for about 6 months. It was small and only mildly active. Then it disappeared and another popped up in another place but same size and activity. I was told that if the mesenteric nodes got bigger or more active we would need to treat it via a pill. Similar to chemo w/o any ports or iv infusion but with all the fun side effects that chemo has. (I’m being facetious here. I in no way believe chemo is in any way fun)
I believe those are all my areas. Sucks right? But relatively speaking, I’m not RIDDLED with cancer but that shit is there. It’s not as bad as it could be. I have carcinoid cancer which is slow growing but isn’t treated the way other cancers are treated. Hence a type of “chemo pill” (not really chemo) instead of actual chemo. It’s still toxic and a systemic treatment which is why they hesitate to give it to me when my nodes are few and only mildly active.
So when my doc walked in and he looked all concerned and then said, “well it looks like…” instead of “everything looks ok” I knew there was some stupid shit about to come up. Also I had read my PET report the day it was available to me and knew there would be issues. I didn’t even have to ask questions because he basically went right into the shit. Here is the deal from this latest PET:
- Cervical (neck) node: It’s slightly larger and more active now. They are puzzling over this and unsure if this is a result of my Papillary Thyroid cancer or part of the whole neuroendocrine cancer action.
- Liver: the area at the edge of my last embolization is still lighting up. Now larger. Over a centimeter and with a SUV (Standard Uptake Value – the amount of radioactive glucose attracted to the cancer cell) of 5.5 which is more active than the slightly reactive amount last PET which was only at 3.0. They are concerned about this as well.
- Breast: Didnt mention it. Looking at my report it seems to be stable. And the last mammogram didn’t appear to alarm anyone.
- Mesenteric Lymph Nodes: This is the kicker. Remember those last two I told you about? The one that popped up, mildly active then replaced w/ another mildly active one at the last scan? Well, that last one wasn’t present at this scan. The SUV numbers on that were only about a 3 (3.3 to be exact) and small. Measuring under a centimeter. Get this… there is A WHOLE NEW NODE LIGHTING UP MY SHIT. Yeah… another one. Only this one has popped up at a whopping 1.4 cm (still relatively small) but with an SUV of 9.7. The max is about a 17 or 18. That’s the one that is causing them concern now because it “came up hot”.
So what now? Well, I need an Octreotide scan. This will determine whether or not the cervical node is either a new neuroendocrine met (metastasis) like the liver or part of my whole Papillary Thyroid madness. He mentioned a needle and an ultrasound. I’m getting an ultrasound on my neck at City of Hope in a couple of weeks anyway for my meeting w/ my endocrinologist who has been following up on my thyroid bullshit. After that scan is done my oncologist will meet with the tumor board at Norris to see if I will now require systemic treatment because of the stupid mesenteric node that showed up hot in PET. I meet with him again in 3 weeks to go over what the tumor board is recommending.
I asked him specifics about what would be involved IF I require that kind of treatment next. He said it’s a fine line regarding treatment because I don’t have that many spots lighting up and treatment would be much like having chemo. The side effects will be rough. I will not be enjoying much. If it does go in that direction, I’m looking at only one bright side: that I won’t require a port or hours of infusion. Everything else will suck though. Basically the pill with all it’s side effects, continuing the lanreotide shots and all those side effects, and possible focused radiation on the spots in the mesenteric nodes and the liver. Chemo embolization? Fuck, I hope not. Biopsy on the neck. FUCK THAT SHIT. Please no.
Anyway, sorry for not writing for a while. I was kind of enjoying my summer with my kid and not having to go to the hospital so damned much. I was dealing with some medical stuff but that was just my usual fatigue and nausea. I didn’t really go anywhere like a vacation or anything (only now, after all this, my ass REALLY wants to go on vacation somewhere). I didn’t actually really do much of anything. But I did write. A LOT. Just not here. I finished a script. I wrote out ideas for more scripts and a book. And then lists. Lots of lists. Because I love lists. As evidenced in this here blog post.
So what now? You’ll hear in about 3 weeks. Until then:
- Have fun and enjoy life and love with my kid, my husband, my family and friends
- Go to more concerts
- Take a vacation
- Make more lists
- Make more stupid doctors appointments
- Research treatments
- Tell my body to STOP FUCKING AROUND
- Continue surviving and just LIVE.
Thanks for reading you guys. Much love.