Monday, October 24, 2016

New Tumor, Denial, and the Fears that Haunt Me.

Sometimes I am absent from blogging because I am too busy, sometimes I am fighting logistical nightmares like technology, and sometimes I have nothing to say just yet. This absence was all three.

I had created a bubble. It was pleasant. It was a bubble where Emma was a cancer survivor and Gracie was only monitored every few months. After I saw her new tumor on the MRI then promptly cried in the arms of my Oncologist I went to my "happy place" - sorry you have reached a Mommy that is not in service, please hang up and try again. We didn't talk about it. Not with Emma, not with each other, not much at all. Then I went to drop Emma off at school and her sweet Principal asked about her new results. I gave her my brave face and rehearsed response I give out readily to people who ask. She dug deeper, then deeper (out of concern for us of course). I heard myself say to her, "We knew three years ago when we found her first cancerous tumor that this is not a fix it game, this is a extend her life as long as possible and make her comfortable." Suddenly I burst into tears. It caught up to me. What I have feared for three years is happening. This is not something I can cure or cut out surgically or give her medicine to maintain. This is something that will haunt us and taunt us. It will give us a year of quiet then come back thrusting us back into chemo and surgery. Then one day it might win...or the treatments will kill us. Now that's depressing.

With NF children doctors follow a protocol. Before jumping into treatment or surgery they want to see the tumor,
1. Grow by 25% from one scan to another
2. Impede functions (eye sight, mobility, etc)
This new tumor is about the size of a pea and deep in the middle of the right side of her brain. It would be very very difficult to remove surgically but it might be possible to biopsy if we have to at some point. Her team is positive it is the same cancer we fought before.

This time Emma is older, more aware. She is asking me about her mortality, if this will kill her, if she will need more surgery, more chemo, more needles. In the spirit of positivity and not projecting too far into the future I just told her that we might have to fight again but we will win and left it at that.

This time I am afraid. I fear that I am too broken to be strong for her. I fear that the treatments will hurt her, make her lose her hair again, and put us back in the ER every week with an unknown fever. I fear the long commute to Stanford in Bay Area traffic. I fear finances will not be available because we are depleted from our last fight. I am frightened that I am alone with out family here locally to help me and that I have over used our friends who do help. I fear the strain this will put on my marriage, we survived one battle but will we survive another?

I feel like when I try to process this news I open up a can of worms. Problems spilling out everywhere. So I just do not think about it. I keep living like we are healthy. Then the hospital calls me to remind me about an appointment I forgot we had (because I wasn't looking) or a sweet friend asks about the girls, or I get a moment alone and suddenly tears are uncontrollable and I feel that I might die from sadness.

I am going to do something I have not done in awhile...I am going to ask for specific help.
- Prayer and lots of it.
- Keep the coffee coming.
- If you can watch the kids (and my kids know you well) please offer to take the twin who is not going to an appt on days we go to Stanford.
- If you live in the Bay Area and you are willing to let us crash at your place if we are too tired to drive home or need to wait out traffic can you please message us your address?
- If we go back on chemo it will be around the holidays so any help getting things set up for Christmas way before that happens is great.
- Lastly understand there are some days I just can't talk about Emma's medical stuff. Just brining it up sends me into anxiety and panic and sadness. It is best to just let me bring it up, then you know for sure I can talk about it.

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