Friday, December 2, 2011

What to write about?

Writing has become hard for me. This blog was a baby blog and now it feels like it turned cancer blog. I don't want cancer to define us.  I've wanted to fully insulate myself from negative thoughts. And over the past few weeks, even the last two months I've wanted to sit down and write at the same time that I hated to. I wanted to tell Grace in my own words what life is like now, how she is, how I am, and share stories.  Then I realized I needed to make those stories. So off the computer I went and I played with her till the cows came home. I didn't want to miss a second. Which is odd, because I still spent time on my computer, but I did it out of desparation for an outlet. I just needed to selectively reflect and usually that was to a few select people. Insulate.

What should I write about this time? All my worries. The reality. And maybe how my worries are worse than reality. Let's just face it. I'm a fatalist. Yet, here is a wonderful healthy child trying to prove my fears wrong everyday all day long.

How about a medical update? November 17th. OHSU. Doernbecher. We had an ultrasound. We saw both our oncologist doctors.  I was extremely nervous prior to the visit. The days leading up I was inconsolable. I am a wreck sometimes, especially the times leading up to another contact with docs or the reality of her illness. I love that I have all this time with a normal and healthy baby. It makes the reality seem less real.

I get gut feelings and follow them. I should too since most of the time I'm right. But I'm also wrong. I was inconsolable because I knew they'd find something new.  The initial in-appointment response was positive and joyful even. The spots on her liver have darkening spots in the middle suggesting they are dying off. The docs said this could wax and wane. I left in a complete state of elation. My bubble was burst the next day when the doc called to say something looked funky on the scans and after looking closer at it found another suprarenal or liver mas 5cmx3cm. My doctor was positive and upbeat. I was devastated.  But why though? I knew things could wax and wane. I felt vindicated, because I'd been right about something being off with my intuition. I was wrong though too. I was right that something was up, but it's not something that changes any plans or any treatment.

I lived in a fog of tears and depression for a while. I let it roll over me and consume me. Then I smacked myself in the face and asked, "What are you doing!?"  I emailed my doc and said I needed a prescription for the positivity he possessed over the phone. He emailed me back the very next day (since I emailed him at like midnight):

It is definitely normal for you to still be a little nervous. Like Dr Lindemulder said, that is a common reaction for you as parents. however, what we said yesterday over the phone still stands.
Both me and Dr. Lindemulder feel the same way as we did before. 4s is known to go to liver and adrenals, so this is not outside of the norm.  It is also frequently seen that the neuroblastoma waxes and wanes during this time, like it seems to be the case now.
All of the pathology came back as favorable, as we discussed, and there is no reason to believe that this new mass, whether it is coming from the liver or the adrenal, will be any different. I am glad you think I sounded optimistic and confident on the phone, because I am!! Even with the waxing and waning, I fully expect we won't have to do anything else!  Odds and percentages are grossly in you and Gracie's favor!!!
hope that helps.
So what I take away from this is that my little girl is being watched closely but her condition is under control (nothing has changed). To be sure of that I have nurses and docs regularly checking her liver to make sure it isn't changing in size.
What else do I take away? First that the pathology is what changes their perspective about this particular mass. They know that it doesn't have all of those nasty genetic and chromosonal aspects of the nastier cancers which precede the harsher therapies.

Second, our doctor has always been careful and deliberate. Any kind of excitement and positivity is so out of his norm and that it is in itself uplifting. He is a positive person but he is very careful to not make promises. He has consistently been so. So for me, to see it in writing and reread it a million times, I think I finally believe it. We'll see about tomorrow. Hard to beat that fatalist out of me. That's why I married an optimist.

But how about how the ACTUAL little girl Grace is doing? Well she is super chubby now. She is smiling. She is laughing. She loves to looks at things and talk to them, a new thing just this week. An excited grunt escapes her over and over and over, and it warms my heart to hear. She rolls over. She nearly rolled from back to front, which is super early. She is teething. She loves her books. She has a good schedule down most of the time. That is until she is teething. We are going to sleep train soon so she can soothe herself and not be as dependent. She is amazing to talk to and play with and I feel so special when she looks at me. She looks at me and recognizes me. I'm her momma. It was just months ago that she was doing that but it feels like yesterday. It's going so fast. She's growing so fast. Does it look like she has cancer? Heck no. Does she ever act like it? Heck no. So while I was worried, still am worried, and while life has dealt us a hard hand I can't forget that my baby isn't dying from cancer. She's living through it just like a cold, or gas, or teething. She can fight it all on her own.

Look for yourself.

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