The news yesterday wasn’t horrible, but could’ve been better. Ana’s primary tumor (the largest tumor in her left lung) appeared to be a couple of millimeters larger since 12/9. It’s now about 3 cm (1 inch), which is pretty big as far as lung tumors go. He didn’t see any new tumors or anything that got bigger besides that one tumor. He also said the artifact in her liver is unchanged and he’s no even sure if that’s a tumor. What else could it be, I wonder?
I’m so damn tired.
We spent a good hour trying to clarify what the hell to do next. Dr. Yamashiro feels the Votrient may be working, but not as well as he’d like it to. I guess when cancer responds to treatment, the result is pretty rapid and astounding. I can only guess though, because THAT’S NEVER HAPPENED WITH ANA. So, nothing has really changed. This exact same thing happened with Jakafi – tumor progression slowed then seemed to stop, until it didn’t anymore. Since Ana doesn’t seem to be experiencing side effects with Votrient, Dr. Y increased Ana’s dose from 400 mg to 600 mg per day. The higher dose is associated with a higher risk of side effects including extreme fatigue, so we need to watch her closely.
We discussed other options including surgery to remove the largest tumor(s) and revisited the idea of radiofrequency ablation (a type of targeted radiation that can zap the biggest tumors). I’m not exactly sure why Dr. Yamashiro hasn’t spoke to the radiologists about this option since our last visit (when we also brought it up), but I guess it’s kind of a one step at a time approach. We’re trying Votrient now. That’s what we’re doing. If that doesn’t work, we do something else. But there’s a window of opportunity for this type of radiation. If the tumor gets too big, then it’s off the table. So I’m pushing for Dr. Yamashiro to follow-up about this next week.
We discussed hemp oil. Yes, hemp oil. Because several people have approached me with this option (hemp or cannabis oil), and as Ana’s advocate, I need to make sure I explore every option. Dr. Yamashiro isn’t opposed to this, but he doesn’t know anything at all about it except where cannabis is used to alleviate symptoms (as opposed to shrinking tumors). They have an alternative therapy department at Columbia and he’s going to approach them about it, but my sense is that it’s not something we can do in any controlled way. Research into how cannabis inhibits tumors is in its infancy. It’s basically another “shot in the dark” approach that is on the back burner for now. But, we’ve started the conversation and I’m prepared to revisit it at some point in the future.
He gave his blessing for Ana to travel to California in February for her New Girl wish, but I’m still waiting to hear back from my contact on the week of 2/16 for that trip (the girls have that week off from school). I also emailed my contact at Hope & Heroes Children’s Cancer Fund – the charity associated with Columbia’s pediatric oncology department – because they’ve got a donor that has generously offered to fund one of Ana’s travel wishes. If we end up going the week of 2/16, then they’ll book our tickets and hotel which is pretty incredible.
Ana was NOT happy yesterday. She doesn’t want to talk about chemotherapy. She’s sick of all of this, and she wants to be left alone. Adolescence sucks on a good day, but to be a 13-year-old with cancer is truly a new realm of hell. There’s no comforting her, except to let her be angry at me, which makes me feel awful and ineffective. It didn’t help that the day was particularly long and fraught with annoyances. They moved the pediatric CT offices and failed to tell us (or the guard who checked us in and directed us to the old office), so we had to scramble to find it (behind unmarked double doors without a sign to be found…) The new office had a bad nurse – meaning, she was terrible at putting the I.V. in, caused Ana pain, then told her she shouldn’t cry when it hurt.
You know what? If a nurse or phlebotomist says the words, “It doesn’t hurt! Why are you crying?” to a child with cancer who is getting an I.V., they should be required to drop everything they’re doing, sit the fuck down, and get an I.V. placed in their own arm. Yes, I know it’s a plastic tube and not a needle sticking into her vein, but THAT’S STILL PAINFUL.
Her CT was at 9 a.m. and her appointment with Dr. Yamashiro was scheduled for 10 a.m. which makes no damn sense since it takes at least an hour and a half from the time you check in to the time you get the scan (it takes an hour for the contrast to soak into her veins).
She didn’t get to see Dr. Yamashiro until about 1 p.m. or so and by that time she was starving, I was starving, and we were all exhausted. We could’ve gotten lunch in between the scan and the appointment, but instead we sat in oncology for two hours. How do they not know it takes a good two hours to get the scan?? So we sat there since she missed her 10 a.m. appointment. We sat there and watched toddlers without hair walk around pushing I.V. poles. We sat there and listened to the bored receptionists answer a million phone calls. We sat there ENDLESSLY waiting for Dr. Yamashiro to appear and deliver more horrific news.
If I sound angry it’s because I am. Ana’s had a scan every single month since June. Normally I roll with the punches and accept all the little inconveniences associated with being at the hospital and getting her the tests and treatment she needs. But I couldn’t do it yesterday. I couldn’t be positive and grateful for the experts at Columbia. It’s bad enough she has cancer. It’s bad enough she has to be in pain. It’s bad enough that people stand and laugh and go to lunch together while we sit and wait for more life-shattering news.
I mean, Can’t they put a sign on the door when they move the pediatric CT office to a completely different corner of the hospital?
Can’t they schedule her appointment at a realistic time so that I can get her a decent meal before she gets more bad news about the tumors in her lungs? Can’t the nurse who puts the I.V. into her arm smile and tell her she knows it hurts, and she’s sorry, and aren’t you brave? Well, whatever. I’m angry at the universe. Every inconvenience was like salt in the wound yesterday.
Her next scan will be after we get back from California (assuming we actually go the week of 2/16), which is 5-6 weeks after yesterday’s scan. If she needs chemotherapy, it will mean two courses of in patient chemo about three weeks apart and a four day hospital stay each time. Then another scan to see if it’s helping.
Did I mention I’m exhausted?