It's been nearly a month since I wrote on this blog. I think that somehow if I wasn't writing or updating that I could continue to live in the naive cocoon of my life with a happy healthy baby and not face the odd reality that she has cancer.
I've read too much about other babies with cancer of the neuroblastoma nature but who are high risk and in life and death situations. Grace is low risk and they are casual enough about her situation to wait 6 weeks at a time for check ups.
Speaking of check ups. Thursday the 17th was a day to go in for ultrasound and review Grace's condition. The results were half revealed at the appointment following and half over the phone. Good news, her liver areas are looking like they are in necrosis, possibly involuting in on themselves and dying away. This impossibly good news for me, though I can't help but feel a little low realizing after a phone call today that she in fact had more spots than before so they must have grown.
The phone call also meant to remind us to bring a urine sample and to let us know that some funky language in the report was reviewed and discussed. The radiologist didn't know her right adrenal had been removed, so the language that her left adrenal shrank was puzzling. In fact, it had grown. It's 5cmx3cm. My heart sank. Her other tumor was 5cmx7cm. And yet..... our doctor Blachy was positive and upbeat and reassuring.
"I fully expect this to go away on it's own." I wondered how he could be so confident. I felt dispondent and beaten and miserable. I was also tired. So I went to bed after I phoned Kris. He took Blachy's words and felt reassured. Why hadn't I?
I went to bed after putting a grumpy Grace down, though her attitude likely was a result of my status. I slept for 2 hours and she mercifully let me. And I slept on it, literally.
I think I know why he can be confident and why I'm not. He is operating on new information. The histology and genetic testing was IDEAL, WONDERFUL. She's gaining weight and growing well. So why am I so damn bummed?
Kris and Blachy are satisfied. Kris said he refuses to mourne the baby that is here. Maybe I'm mourning the one that never was. The health of my baby, despite the fact that if you look at her she IS healthy. SO imagine the head trip that is. For weeks when I didn't post I was living in that land where my baby was my baby and just my baby. No cancer involved. And now new developments mean it isn't over and I'm mourning that too.
I get down on myself too for talking about it. I feel like I'm complaining. I feel like no one needs to hear this and I'm just bringing people down... that is depression talking. I know her well and she sure can take over. The fact that since I wrote in October I've had my gallbladder removed and tried to heal from it as best I could while mothering... yeah I'm doing alright. People don't treat me like I'm fragile, which is good, but also bad.
I forget that, well, I am. So fuck big meals for Thanksgiving if it stresses me out. Screw big plans for Christmas. I want meaningful and happy. Not unnecessary anxiety. Anything that produces anxiety for me is like 10x and magnified and blown up and sets me up like I'm a house full of trip wires and no matter where you go there is an issue and it's overblown and people I love become casualties. I don't think everyone understands this because I compartmentalize and try to be as normal as possible. I don't know if I do. I have to be careful. I am a ticking bomb of emotional barbs. I have had to make adjustments to my ideal life... no walks, no working out, just sitting around healing. I need those things. I need balance. My life is out of wack. I want boring.
I haven't eaten well enough. I haven't slept well enough. So yeah. Depression is a danger for me. Denial and indefatiguable positivity is Kris's tools of choice.
Why be depressed when I have a gorgeous, smiley, goo-goo eyed baby? I don't know, but I am sincerely happy 90% of the time. The other 10% I've compartmentalized so I don't wallow and forget what's important. It wears on you though and you don't know it does until you hear un-ideal news like... hey your baby has another tumor.
Again, I'm emotional. But the plan is the same. They didn't say "RUSH IN!" They said, "let us know if she does anything out of the norm. Keep her growing. Keep her healthy. Keep loving her. We'll see you in 6 weeks. We are just watching this." It can grow before it wanes and it could keep waxing and waning. But with the knowledge we have about her testing on her other tumor, I guess they are confident. And I will try to be too. It's hard to be knowing things can keep changing rather than just keep getting better.