Summer 2016 Updates
Sorry I’ve neglected posting my updates to the blog. Here are the last few – I didn’t update much in August.
Ana had labs drawn this morning in preparation for starting Ibrance (Dr. Y always wants to get a baseline before starting her on a new oral chemo drug). Labs are so routine for Ana now that I barely think about them after she’s gotten them drawn, so today I was surprised to get a call from Debra (one of the Pediatric Oncology P.A.’s that works with Dr. Y) saying that Ana’s hemoglobin is very low…so low, in fact, that she needs a blood transfusion. Her hemoglobin is 6.5 and normal is about 11 – 13 for children and 12 – 14 for women. I guess this is so low that it’s not something that will easily come back quickly (by feeding her red meat and iron pills, for example). Also, I made the mistake of Googling her hemoglobin level and…BIG MISTAKE. That was scary. *scrubbing my brain of all bad thoughts*
Let’s just say that 6.5 is considered severe.
So, she’ll have to spend the day at the Infusion Center at Columbia on Monday because it takes roughly 6 hours for the entire process – including getting a blood type test, but at least she’ll be an outpatient. As usual, I asked to schedule this around Rock Academy rehearsals and performances (she’s going to be performing with Rock Academy at the Phoenicia Festival of the Voice next Thursday). Honestly, this really took me by surprise because she seems fine – beyond shortness of breath (which I assumed was all due to her lung tumors) and maybe a bit more fatigue than usual (again, I thought this was because of her lungs).
Anemia can also cause shortness of breath, so my hope is that once she receives blood, she’ll feel better than she has in a while. In the scheme of things, this is pretty minor but it is a wake up call that although Ana looks good and feels good (mostly), she’s not really okay. I did ask if the anemia could be due to her oral chemo or her tumors, and Debra said it was probably from the chemo. I hope that adding a third drug doesn’t knock her flat.
Ana’s home after a very long day. She’s playing the Wii with Emily and has a healthy appetite (I’m picking up Chinese food for her in a couple of minutes). Dr. Yamashiro stopped the Jakafi because he was concerned how low her counts went and tonight she’s starting Ibrance. I’m always nervous when she stops a medication or starts a new one, and now she’s doing both. Fingers and toes crossed that Ibrance is our miracle drug (I’ll even take a half a miracle)
It’s been nearly a month since Ana’s blood tranfusion and she’s still struggling with anemia. Dr. Yamashiro thinks it’s the combination of Ibrance and Everolimus (she finished her first course of Ibrance on Sunday and now she gets this week off).
Her white blood count (WBC) is 1.6 as of Tuesday which puts her at a high risk for infection. Normal range is 4.5 – 10. She also still has low hemoglobin, but not quite as low as when she had to have the transfusion (it was 6.5 then, now it’s 8.4 – normal range for her is 11-14). So, she’s struggling with fatigue and she currently has strep throat again which is making it hard for her to function as well as she’d been functioning all summer.
Finally, she is in pain from sores in her mouth and nose. I’m not sure if the nose sore is from being so stuffy (or something strep related), but it’s causing her a lot of discomfort. The mouth sore is bad enough that she’s using magic mouthwash again (this is a prescription mouthwash that contains the numbing agent Lidocaine). Her lips also hurt, though they aren’t chapped as far as I can see so this must be from the drugs too – or possibly because her entire system is so depleted at the moment.
It’s hard to watch her suffer like this, to see her exhausted and in pain. She has begun feeling much better as of yesterday (after 4 days on antibiotics), but she looks very pale to me (she hates when I mention this) and I won’t be surprised if she’ll need another transfusion soon. She’s getting weekly labs at this point (which she also hates) but it’s necessary because Dr. Yamashiro is watching all her counts very closely. He may need to reduce the Ibrance, or possibly the Everolimus. The issue is that Ibrance effects the way Evero is metabolized in Ana’s body, so the level of Evero has actually doubled making all these side effects pop up.
And, to add stress to stress, I lost my main client in July and we’re crazy broke. I’m beginning to get new work to replace it, but we’re nowhere near where we need to be. This means I’ve been working a lot more (trying to build new business and also start a new project) and I’m unable to do as much for the girls as I want to. Ana feels the added stress – she’s super sensitive to it – which I hate. I don’t want her to worry about a damn thing right now.
Sometimes worry takes over. No matter how hard I try to stay positive and live in the moment, I just…can’t. This worry has been building since Ana’s transfusion on 8/1, and at this point I’m feeling totally drained, absolutely depleted. I can’t find the optimism to look forward to the new school year. The truth is, I don’t want anymore time to go by. Can we just freeze everything right here in a place where Ana’s mostly feeling okay? Please?
Well, I know we can’t do that, so there’s no use wishing.