I need to journal. It’s therapeutic and I like that I have this feeling of doing something that will help me in the future… journaling for posterity if you will. But my mind is so muddled and so many of my thoughts are incredibly ugly. Do I really want to record all that? I’m holding back a lot and I think that’s a good thing because I don’t want my children to look back at this one day and hate me for some of my thoughts, especially because I don’t know how temporary many of my feelings are right now.
I have a few appointments coming up that I made today. I have an appointment for counseling for myself because I’m concerned about Marc. I wanted to make the appointment for him but they said it has to be me first. That’s probably for the best. The center I’m going to also gave me the name of a child psychologist and they recommend I go ahead and get a diagnosis for Marc. I made that appointment as well. I believe Marc has a mild form of Asperger’s but we’ve never had him diagnosed because we’ve dealt with it through diet for the past 5 years and he’s done very well with that. We’ve never had him medicated as we just didn’t feel it was necessary but now I’m questioning if it might help us get through this time. Not that he has changed but I am feeling this incredible lack of patience with him and maybe a little extra help for right now would be okay. I don’t know. It’s like a freaking impossible decision and Tom and I are not on the same page so right now so we’ll just go one step at a time and I’ll go to this counseling and we’ll try to get him diagnosed.
Pray for my son. Pray that I can love him the way he needs to be loved because that is really hard for me right now. A good friend of mine said something to me that I have been repeating to myself and others for two days now. She said, “Danielle, you should feel sorry for him because he cannot feel something that he should be feeling.” That’s why I think we need help. He cannot feel things that he SHOULD feel. And it makes me feel other things than compassion right now. So yeah, we need some help.
If anyone local feels led to pour into him a little, I will take you up on any offer you suggest.
I spoke with another mom tonight with a little girl who has stage 3b melanoma. Her daughter is 6 months past interferon and we talked for about two hours. That was so good for me and I am incredibly grateful to her and her willingness to open up and share with me. I could hear her family in the background the whole time and she just stayed with me. It was a sacrifice for her and words aren’t enough to express my gratitude. I don’t like the unknown but I also don’t want to be unnecessarily scared witless so though google is bad, talking to someone who can give me the lowdown on the ugly truth of this disease is very good.
I don’t know why but this stuck out to me. People who have melanoma can never be blood donors. What a minor thing but it’s just like a mini kick in the pants. I keep wanting to go back to “this is no big deal, we’re just being preventative. Careful, if you will”, but no… this is cancer. Cancer. I keep thinking that she has like, the pretend cancer. The almost cancer. The not really cancer. The no big deal cancer. The past few days the truth that she has the capital C Cancer has been sinking in and the more it does that the more muddled my brain gets.
I keep clinging to the “you will have grandchildren through her” speech but I’m in this limbo stage of “Okay then, IS IT a big deal or IS IT NOT?” Would ignorant bliss be a better state to stay in where I can laugh and joke and not be scared or do I need to be hit with a healthy dose of realism and deal with it so I can move on?
Her oncologist is pretty much the most cheerful guy I’ve ever met. Is he cheerful with everyone or is he cheerful because finally he has a cancer patient he can feel confident about? I told Tom tonight that I think I would do better with a doctor with horrible bedside manner who was telling me my daughter would grow old because I would trust it more. I think because the way we came into this was so lackadaisical, I’m having a hard time now trusting the “good news” that she will be “just fine”.
If she’s going to be “just fine” then why are we putting her on a medicine that will make her sick for a year? If she's going to be "just fine" then why does she have a three inch scar that she called "evil" tonight? If she’s going to be “just fine” then why are we at MD Freaking Anderson? Or is it BECAUSE of the interferon and the surgeries and MD Anderson that she will be “just fine”? Or are people just trying not to overwhelm me and keep me in high spirits that they won’t tell me the truth that we HOPE she will be “just fine” but really, it’s possible she won’t?
I think I am going to request to see another doctor. If two doctors tell me she will be “just fine” then maybe I can concentrate enough again to actually buy groceries that make sense together. I joked on facebook today that we were going to have Peanut Butter Bisquick Pasta for dinner. With the hodgepodge of groceries I brought home though I’m not sure how far from the truth that is.
Are worry and being scared the same thing? I don’t want to worry but I am scared.