This is my emotional post. I've tried not to do many of these in this blog because I wanted it to stay fairly factual in case anyone new to MEN2a came across it. I think I've earned this post though and hope no one minds.
Since this all started in October this truly has been like one long, scary, and hellish nightmare rollercoaster. I HATE rollercoasters. Stinking things have always made me sick! Before my very first biopsy results came back abnormal I always just thought I had a goiter in my throat. No big deal, they would remove it, and I would go on with my life. NOTHING could have prepared me for what this all led to. I'd never heard of MEN2a, medullary thyroid cancer, pheochromocytomas, or hyperparathyroidism before. I didn't know such a thing as a RET gene existed or that there was such a thing as cancer causing gene mutations. Talk about a crash course in reality!
Everyone tells me that they can't believe how strong I've been and how I'm handling everything. A dear friend (whom I have missed dearly over the years) told me that I have "spunk". On the outside yes, I've been holding it together better than I ever thought I would. On the inside though I've just been wanting to curl up into a ball the whole time.
So many questions that run through my head and no answers to any of them. I have layed in bed several nights asking any and all Gods/Goddesses why they hate me and why they would do this to my children. You just get to the point where you HAVE to ask that question. I know I'm not hated but you can't help but wonder what you did that was so horrible to deserve all this. I TRY to keep my chin up and anytime I really get down I remember that it truly could be alot worse. My cancer could have spread to an inoperable area. It could have been a fast moving cancer leaving me only months left to live. My children could have had leukemia or any number of other truly devastating illnesses.
Since we found this early their lives will be harder than most BUT they will now have a chance to be pretty close to normal. I just hate that they now have to decide whether or not they ever want to have children of their own because they could get this too. :( I'm not one of those people who worries about whether or not I will have grandchildren someday but it bothers me now that instead of my daughter wanting to be a mom and raise her children, she has to honestly think about whether or not she SHOULD be a mom. Any person my children marry will have to know ahead of time that they may never have children of their own. How awful is that? Isn't it hard enough in this day and age to find your life partner without adding to it having to tell someone you may never have children with them? *sigh*
Sometimes I wonder if this is all just a cruel joke. Like the tests were all wrong because none of us are really sick. I have alot of symptoms from the things wrong with me but they are all little things so although they are aggrivating they don't control my life. The kids are still the healthiest kids I've ever known.
And by the way, knocking on wood everytime you say that does NOT help. I spent 13 years knocking on wood everytime I said how happy I was my kids were healthy and at times almost too healthy. Now look where it got us. :( I'm not even 30 years old yet for crying out loud. You're suppose to have organs removed and be on medications and have cancer when you are older...not young. I KNOW it happens everyday to children, teens, and young adults but it just plain sucks! Older people don't deserve any of this either but had I had a charmed life or a longer life before this all came about I wouldn't feel so bitter because I had lived. The worst thing I was looking for a few months ago was menopause in about 10 years and I was actually looking forward to that one! Now I feel like a poster child for MEN2a.
This surgery scares the hell out of me. Things have just gone so wrong so far I can't help but wonder if I'm even suppose to make it through this surgery. Our luck is so bad already. If I don't make it through then my children will be seperated and most likely never see each other again. My son would go to his worthless vagabond donor and live the same life as him. The person my son can be would be lost and crushed under the life that sorry SOB lives. My daughter would go to her worthless irresponsible greedy ignorant donor. Oh he'd happily take her because it would mean he would get another social security check for yet another child of his whose mother died (his son's mother died a few years ago from a spider bite). Emotionally though my daughter would be left to her own devices. Just one of his current crowd with the current sucker du joir. My youngest son would stay with Vinny and be raised by him. A court wouldn't care that this is all these children know. A judge wouldn't care that ripping the three of them apart would destroy them.
Besides, neither of the donors would care about getting Big B and Sis the best possible care for their MEN2a. If it cost money, they wouldn't get it. All of this would happen because I have failed as a mother to them. By staying in my little caccoon thinking nothing bad would ever happen I have robbed them of a security that they deserved. "I'm sorry" just isn't going to cut it this time.
Yet another thing that hurts right now is that weaning with Lil Man hasn't been going well at all. I've been trying but we're just getting nowhere. I wanted so badly to wean him gently. Instead I have no choice now but to take nursing away from him full force and listen to his cries and see the confusion in his eyes. Again, I have failed one of my children. :( I can't continue to nurse him while I'm on the alpha blocker the next few weeks. By doing so I could pass the medication on to him and it could shut down HIS adrenal function. That's not even remotely a risk worth taking. Then of course you have the fact that he is going to have to spend three nights away from me when I have the surgery. We have coslept his entire life and I have always been right there by his side. I just hope Vin has patience with him and can be understanding.
I'm excited about the upcoming study at Duke University while still wondering what I'm going to do about Lil Man. As I posted before, I had tried to arrange taking Lil Man with me the first two weeks and at this point two people have had to back out and the two people who CAN still help me won't be able to help until after February 11th. So I'm still trying to figure out what to do about the (tenatively) 4th through the 11th. I had asked my sister...practically begged her actually if she could help. That was in an email 5 days ago and so far I haven't received any reply from her. That one hurts more than anything. Even a "I'm sorry Jo but I can't help" would have been fine but to totally ignore me altogether. And I know I'm being ignored because she usually calls about twice a week and hasn't since I told her the email was waiting for her. :(
I've made up my Living Will, a Georgia Living Will, a Florida Living Will (I'm covering ALL bases just in case), Authorization For Minor's Treatment for Big B and Sis so Vin can get them treated if need be, and my Last Will and Testament. Not that it will do any good if Big B or Sis's donors decide to fight it but it's better than nothing. I've also left certain things to the kids that I know will mean alot to them personally and Vinny knows what I want done with my remains. I'm hoping none of this is needed because I have no insurance on myself and I would really like do have something special done with my remains. I don't want Vinny to be burdened financially with it all. The joys of nobody wanting to insure you once you have cancer. *sigh.
So anyway- I'm strong because I have to be. There is no choice. If I start feeling sorry for myself or have a breakdown who will be left to make sure the kids get what they need? Who will there be to show them how to be strong? When you become a mom it becomes your job to shield the ones you love from the pain you really feel. They have enough going on with themselves without me crying and falling apart. Vin has enough to deal with without dealing with a wife who can't carry her part of the weight.
Don't tell me I'm strong because I'm really and truly not. Just tell me I'm being what a mom is suppose to be and that will help heal my heart. ;)