Friday, June 4, 2010

My worse news yet

I never would have imagined that one day I would hear the news that my daughter has a brain tumor. It’s not something I was prepared for or had researched. When I thought of the major things that I would have to deal with as a parent with Naiima, I assumed it was going to be coming of age type of stuff like the influence of her friends on her thinking and behavior (didn’t really happen); losing sight of goals because a boy has clouded her vision and focus (didn’t happen); if what I think of as the best of me had or would somehow be made manifest in her as she became the best of her.

I had started thinking that I had somehow had the enormous luck to get through raising her without the normal/standard teenage drama (ok, occasionally she is moody or says things without thinking and she can be spoiled) and that we are almost home - the bench mark for Home being High School graduation..even though I know that parenting doesn’t stop there. We have one more school year to go!
And then this curve ball comes along – BRAIN TUMOR. Naiima has a brain tumor. Its location has affected pituitary functions and as a result she is not producing and/or is producing low amounts of 4 of the key 8 hormones the pituitary controls. Her kidneys are unable to conserve water (diabetes inspidus) and she may not be able to have children.

Being a lover of Google and information, I immediately started to research. What is a brain tumor? What types of treatments are available? What are the side effects? What are the success and rehabilitation rates? Then it’s made even more frustrating because with her brain tumor, they don’t know what it is? So they don’t know how they are going to treat it yet or even if they are going to treat it. The size of a brain tumor matters because there is limited amount of space and even a small and benign brain tumor can trouble the areas near it just by being there. Thankfully, hers is relatively small. So it is possible that it could just sit there and not cause any further damage?
The not knowing has been excruciating.

It is so hard to get this news and have to wait for “real” action. I have read probably hundreds of case studies and survivor stories and they give me hope and the knowledge that people get it and deal with it and make it. There are blogs of people with brain tumors describing treatment or describing survival only to have reoccurrence years later. There are other stories of loss and grief; of parents who have lost children and surviving spouses. I have stopped torturing myself with reading those.

I do believe that eating “real” food without additives, antibiotics, pesticides, etc is necessary and I’m transitioning my family to that. I have also been reading up on articles and people who speak about alternative cures and treatment. Some of them I believe. Some I do not. People have cautioned me about allowing my daughter to receive chemotherapy and or radiation. And I have to say at this point, we don’t know if it is malignant or benign and not even sure if they are going to treat it or watch it. I don’t believe that doctors know everything and I don’t accept their words as absolute. However, a lot of doctors today recognize that diet, spirituality and attitude play a huge factor in treatment and her doctor sounds like he does. But I would say this – when it comes down to it..when its life or death..when its my child..I want the best available treatment and if that’s chemotherapy, then we’re doing chemotherapy. I have read a lot survivor stories of teenagers who have had conventional treatment. Keep in mind that brain tumors that are malignant (and primary) are not like other cancers.

This news makes you want to prepare for battle. You gear up, read all that you can, talk to who you can, get the support that you can and prepare for the coming onslaught armed to the teeth. And then I’m waiting..and waiting and waiting. In the meantime, I’m trying to be very strong. I don’t want her to know that I cry about it a lot. I don’t want anyone to know the possibilities that sometimes invade my brain that I don’t really want to think about but can’t help but do so. When I talk about it to people or type about it as I’m doing now, it’s like I swallow all of my emotions. Sometimes there is literally a lump in my throat as I swallow my emotions. Put them away and speak about it as if I’m clinically detached researcher. “Yes, that’s what they said,” “In my research, I’ve come across,” “No, we don’t know,” “Our next appointment is..” “Oh, she is holding up fine,” “Yes, I’m ok”.

I can not cry and talk at the same time. So talking or typing about it, keeps me from focusing on it if that makes any sense. But I find that if I am not talking about it then my emotions are taking over and I don’t like that. So I would put a status update on facebook and reading the comments helped me not focus on my own feelings, but the concern of others.

I have gotten lots of support and “if you need anything”s and even if I haven’t called on you for that particular anything..I’m still glad to know that it/you are there. This posting is just about my thoughts/feelings dealing with this as the parent. It has been very hard. I feel helpless and at times overwhelmed.

I am prepared for battle, but I don’t know the details to come..I’m just waiting. After I had previously blogged about coming out of the holding pattern, I am now in a holding pattern. So I’m tense. I’m tired. Sometimes, I am over compensating.

I keep thinking, after this is over then I can really talk about it. Then I can give my “testimony”. Right now, I’m in it. In the battle and I’m preparing and I’m READY. and I’m waiting. I’m doing what I can – reading, changing our diet, showing her my support and giving her my love and not focusing solely on this. We are not sitting at home dwelling on a brain tumor. We are living our life. It’s just in the quiet moments, when I’m in the car alone, when I go to bed at night and sometimes when I wake up in the morning. It is there. (mothers worry).

I have not mentioned God in this posting up until now. People give me great scriptural references to help get me through. We’ve been prayed for and prayed over. I do believe in the power of prayer. I am not a Christian in the traditional sense. I always say that I practice “tenisiaism”. I’m not really a traditional person anyway. I believe in God and I believe that my purpose is to explore my personal relationship with God and live my life accordingly. With that said, I want to say that of course I pray to God about this. And of course, I expect God to work it out. But at the same time, I have let go and am letting God on this one (as they say). This one is bigger than me. I can’t reason it out (yet). I can’t claim that I have faith that if I do not “claim the tumor” that it is not there. It is there. I have seen it.

My belief in God and my spirituality have not been tested. I believe in everyday miracles. And try as I might to find the answers to everything, sometimes I do not have them. And thats ok too.

I hadn’t wanted to blog about this because I didn’t want to say, “I think its just a small, benign tumor that they are just gonna monitor and it will probably cause no further damage” and then later have to recant my words. I don’t want to jinx it. I also don’t want to blog speculating about the worse when it is the best case scenario (even with brain tumor, there is a best case scenario).

I was able to blog about it right now because last week, I really talked it out and released some of those emotions that I had been swallowing and today Martha sent me an email that sparked something in me today (this is the second time I think Martha).

Honestly, I can not even describe the feelings that I’ve been going through. This whole blog posting is just an attempt to convey it but somehow it can’t come close.