No Easy Answers
I wish I could say we got definitively positive news from Ana’s PET/CT scan yesterday, but as is often the case with cancer – things are rarely clear. Ana had the scan around 2 p.m. (the facility is nine floors below ground – I assume because of all the radiation). Jim couldn’t even take Emily down there – he wandered around the city with her while I stayed with Ana.
We met with Dr. Yamashiro around 4:30 and I’m pretty sure I was having a full-on anxiety attack at that point. My heart was pounding, I had to force myself to take slow deep breaths and even so I felt like I was suffocating. That’s never happened before, but I was TERRIFIED of what he was going to say. Luckily I held it together in front of the girls (I think).
I’ll start with what I’m interpreting as cautiously good news. Her lung tumors are stable and there are no new ones that were visualized on the scan. He also thinks there may be some reduction in metabolic activity compared with the last scan – both of these things could mean that the Jakafi is doing something to inhibit disease progression. Also, the smaller pelvic nodule that was visualized in the PET/CT scan on 7/11 (but not in the ultrasound of 7/25) was not present on this scan…at all. Dr. Yamashiro had no explanation for this. So, I’m going to go with the Jakafi again as the possible reason this tumor is now gone (although that wouldn’t explain why everything else is still sticking around – but I figure my lack of medical knowledge should work in my favor in terms of optimism for once, shouldn’t it?).
Now for the bad. The large pelvic tumor is even larger. It’s measuring close to 7 cm x 5 cm at this point which is alarmingly big in cancer-speak. Here’s a rough approximation of the size (this toy is described as being 7 cm round.)
Right, so…Dr. Yamashiro wants it OUT. Ana will likely get it removed on 8/29. She’s already on the surgery schedule as I mentioned in my last post. And, in fact, Dr. Yamashiro thought Ana’s surgery was going to be sooner (it had originally been planned for 8/18). He’s going to circle back with Dr. Middlesworth to clarify why it was moved and if they can’t do it sooner, he may have us start her on Celebrex again – which leads me to the next “not good” bit of news.
Dr. Yamashiro is disappointed with tumor response to the Jakafi. He’s clearly not seeing the rapid response he’d hoped for – he didn’t say this exactly, but he did say that he isn’t sure it’s going to be enough and he’s now looking for other drugs to pair it with. He mentioned “less aggressive” chemotherapy – of the oral variety – which he could try and it’s clear these drugs cause hair loss because he said, “we’d hope that in the lower doses this won’t happen.” At which point, I pulled Ana out of her iphone-induced stupor and asked her if she heard that last bit (she had her headphones on). Let’s just say she is not at all open to this right now. Obviously I know that hair loss is much preferable to death, but I didn’t push it. We’ll have that battle (and it will be a battle) if and when we need to.
I asked a million questions including exploring targeted radiation (e.g., gamma knife radiation) or interventional radiotherapy for the larger lung tumors (rather than thoractomy). He assured me that his pediatric patients do very well in recovering from thoractomy – but my concern is that her lung tumors could come back rapidly after they’re removed. Dr. Y said this was a good point, but he feels they can get many more lung tumors with thoracotomy. I realized in that moment that we weren’t really talking about tumors, we were talking about buying time. Will thoracotomy give her more time than radiotherapy? Probably. Maybe it’s enough time for them to discover another miracle drug like Jakafi. This is the road he’s taking now – he wants to do more blood tests and examine the second half of the gene fusion that’s causing the tumors to grow.
I asked about reducing her immunusuppression again (because in a recent episode of House – which I’ve been binge watching – someone had a live liver transplant from her brother. Only problem was the brother had liver cancer and didn’t know it – so when the diseased liver was transplanted, the immunosuppressants caused the tumor to grow way more rapidly in her than the brother). I was thinking if it’s common knowledge that immunusuppresants create an environment where tumors can grow, then maybe if we kick her immunusuppression down a notch, it will help the Jakafi do its job. To my credit, I didn’t mention House…Dr. Y feels that we can’t really mess with her immunusuppresants because she obviously needs her liver to work while he tries various treatments on her.
I feel like there’s so much more to explain – we spoke with Dr. Yamashiro for over an hour – but it all boils down to a couple of next steps. She’s getting surgery on 8/29 (or possibly 8/18). The progression of cancer is slowing…for now…and she doesn’t have to start chemo again (yet).
Ana’s taking all of this in stride. She’s not overly concerned about the surgery. “Whatever, mom – as long as it doesn’t interfere with The Mazerunner movie premiere…” and so is Emily. I keep asking her, “Are you worried? Do you want to talk about it?” She gets annoyed with me when I push her like this and seems genuinely baffled about why I’m making such a big deal about all of this to which my response is..huh. Okay.
I wonder if Ana was just young enough when this all started that she can’t really remember what it was like before she got sick. She’d just turned 11, so I know that’s unlikely. But kids are elastic – they go with the flow way more than adults (or even older teens) do. Ana’s original tumor was discovered exactly two years ago this month. Since that day, I’ve been waiting for things to return to normal. But yesterday – with all of us laughing in the car (even on the way to the hospital) and on the way home (after stopping at the Palisades Mall, of course), it suddenly occurred to me that this IS normal. Another scan, another surgery, another day in the pediatric oncology ward of Columbia Presbyterian.
She doesn’t think of herself as brave and strong – but she is. Emily doesn’t think of herself as supportive and loving – but she is. I’m proud of both of them – my heart settled down the minute Dr. Yamashiro came in to talk about next steps. I’m starting to think about what this illness has given us as a family – not just what it’s taken away. I realize that I’m feeling relieved because the news wasn’t worse and that the dark places are still there, lurking behind the results of the next scan, but we’ve got two…maybe three..weeks of hospital-free living to do before Ana’s surgery.
So I guess it’s time I got back on my bike again. Thank you all for your kind words of support and love on Facebook. I reached out and you were there, as always.