The first step on a long journey like this is incredibly scary. It's like stepping into an abyss with only your faith and love to get you through to the other side. We don't know if there are any other spots in my body that we need to deal with. We don't know how my specific tumors will react to the various types of treatment. We don't know a lot of things and we also don't know if knowing those things will help us at all right now. Fear, right now, is our biggest emotional hurdle. Fear of the unknown. Fear of the statistics.
The first oncology appointment was rough. My oncologist repeated the information, the statistics, that we've all been scouring the internet for. It's really difficult to read and digest ... even more difficult to have it said to your face, directly applied to your situation.
What we do know is that the lesion on my spine is a concern. It's pushing into the epidural space and threatening my spinal cord. It's also threatening the stability and strength of my vertebrae, which also threatens my spinal cord. My case was presented this morning at the spine tumor board at Stanford and they will determine if surgery is necessary to stabilize my vertebrae, or if we can just start with radiation. The other lesion that's pushing on my windpipe is also a concern obviously. Two really important structures of my body are the priority as well as getting a full picture. Once we have a full picture, we'll know what the treatment path is going to look like.
For me, I think these early stages are the most difficult for me. I'm a planner, a project manager, a compartmentalizer ... and not having all the pieces right now sends me into discovery mode, question mode, research mode ... what are my options mode. A constant weighing of new information against known information, trying to navigate to the best plan of attack for the situation.
For my family and friends ... my heart breaks for them. I know what it's like to be in my shoes - where I can go through treatment and feel like I'm doing something to combat this. But for them, I can't fathom what it's like to be in their shoes. For them it's a feeling of helplessness in a situation where all they want to do is help, help, help - where all they want to do is take it away, go through it for me, or find the secret to success. It's a paralyzing position to be in - on the periphery.
When we finally left the hospital and walked into Teresa's house to get Cam - those first steps up the walkway - I had to stop myself from running inside. Not out of fear or worry, but out of joy and excitement. After an agonizing few hours before, just the thought of scooping him up in my arms, hearing him yell "Mommy!" "Daddy!" and running to us with open arms, and then launching into a tirade description of what he's doing, what he's building, what he did today, asking us to come play, yanking on our arms to come into the playroom ... it drove away so much sadness, filled me with so much joy and relief. He is a healing balm to my spirit.
Getting home, Nicholas was in Lulu's arms (as usual) and had just finished his 6 pm bottle. His bright little eyes were open and alert. Evening is supposed to be a fussy time for young babies - to release any extra energy from the day. (Cam took advantage of his fussy time with dedication ... and without hesitation.) But Nicholas ... so far his fusses are easy, half-hearted ... as if he's saying I'm fussing, but I don't really mean it. He's such a happy little guy, easy to settle and actually demonstrates a minute or two of patience when he knows the bottle is coming. Holding him, looking into his eyes, feeling his energy- his spirit - brings me calm.
And that's the clash of this whole situation. You bounce from sterile and impersonal, devastating statistics that threaten your future existence to being mommy and daddy - to play time and rocket ships, and bottles and burping, to pajamas and storybooks and bedtime routines.