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Post Transplant

I am now over 1 year post transplant and doing wonderful! I am off all of my meds, and to be honest I feel "normal'... whatever that means. My experience with this transplant has been for a lack of a better word...easy. I've known of many people who have had a transplant, and to be honest there is no reason for me to have gotten through it so easy. But I will take it as a blessing. And I am grateful.
Z my son is now 2 1/2 and he is still such a joy. He has physical therapy, occupational therapy, as well as developmental therapy once a week. And has been getting it for well over a year now. He uses adaptive equipment like a walker, and foot orthotics. He is still far away from using the walker on his own. But it is something. We have been using early intervention since his birth and I am afraid because once he turns 3 he will be done with this program and these therapists. He will then start "school"... and although I know it shouldn't still bother me, ..it bothers me that he will be be going to a special needs school and be known as handicap. I know it's probably terrible of me. But it's my blog and I am allowed to be honest. I guess at home we treat him so normal it's hard to put that label on him. As much as I know that having a disability or being disabled is not something to be ashamed of I don't feel its that at all... maybe Im just a mom who has a hard time realizing and accepting how her son will be challenged throughout his whole life. Maybe it's not easy. But then I ask you...should it be?
Sorry for my year long absence, I hope to continue to write more. but I make no promises.

Hope you all enjoy the short work week. (for many anyway)

Lucky Girl

amazed...

Well apparently I am doing amazing. I have been in the hospital for 17 days now, and I am day +10 post transplant. Besides a few minor issues, couple fevers, a rash on my legs, headaches, and 2 days of minor backaches this has been *knock on wood* rather easy. I threw up a few times from the chemo, but it wasn't long last lasting, and as soon as I did it I felt better. I know I'm not out of the woods by any means, I mean my white blood count is still only 0.9, but my doctors are impressed and are already saying I could come home mid next week baring any further complications!! Crazy. God has really been watching over me during this. Here I've been waiting for the other shoe to drop basically, and I'm beginning to think that I may actually get through this without any crazy complications! Hope... I think that's what they call it. I almost forgot what it felt like. But I think I could get the hang of it.:) Thank you for your prayers and well wishes.

lucky girl

Thanks

I just wanted to thank you all for your kind comments. I apologize for not responding to each of you. I'm a little busy these days. :) Today was the first chemo infusion and so far it's gone great! I don't feel any different...no nausea or anything! I also wanted to thank Day... I appreciate your blog. With all you have on your plate you still remember others, you are a great person. I am so happy that things have worked out well for you.

Here's the link to my caring bridge site.
www.caringbridge.org/visit/heathermazz

Talk to you soon!

Lucky Girl

tick-tock tick-tock

Well in less than a week my next journey will begin. I am getting more and more excited and more and more anxious and nervous as well. But mainly I am thrilled of the thought of being free from this illness. I go in one Oct. 3rd and start my chemo and ATG treatment, then on the 10th I will have the actual transplant. The doctors are now saying that instead of a definite loss of fertility it is only a possibility now. That also means that menopause is only a possibility as well. This was very good news. I just turned 26... menopause doesn't sound fun. I was also told that I may or may not lose my hair. (Are you getting the picture yet? They basically can't tell me anything definite heh.) My mom works her last day at her job this Friday and will take over in taking care of Z. He has therapy 4 times a week. Luckily PT, DT, and OT are all in home! We only have to leave for aqua therapy. B who had been planning on working during my transplant (only because financially we cant afford for him not to) decided that he doesn't care about the bills and that he's going to take a leave of absence. I cant blame him, God knows I wouldn't want to work if he was going through something like this. I will try to update this site as often as I can. It all depends on the internet connection in my room. I've been admitted there 5 times and 3 of those times I had a great signal. I will ask for prayers if you're the praying kind. Honestly this is all in Gods hands. I have a deep sense of peace that everything will work out... but hey who goes into something thinking that their not gonna make it? ;) Talk to you soon!

Lucky Girl
(Trying to use her "luck one last time at least)

Emotions...

Is it a bad thing that I often think about the possibility of dying? My husband B never wants to talk about it. And I can't blame him really. If the roles were reversed I would be acting the same as him. But I find myself wanting to tie up any and all loose ends... "just in case". I want to write letters to loved ones or even make videos for them. Especially for B and Z. Heck if I died, Z would not remember me at all. And that is a sad thing. People get uncomfortable when I talk about the fact that it is possible I may die when I go through my transplant. I know there not going to agree with me, but I guess I just want everyone to know that it's a pretty serious thing. People look at me and I look healthy. Im not underweight, Im not weak andunable to take care of myself. I still like to go hang out with my friends and even dance now and then! So when people hear Im sick I feel they often think that I simply need to take medicine or maybe that I need a small operation. I always tell people that I honestly don't feel I'm going to die, and truly I DO feel everything will be fine. But when your put in the situation if you don't think about every possible outcome I don't think your preparing well enough.

Ever since getting my transplant date I find that I don't want to talk to people. I dont want to go out. I don't leave the house. It's almost like Im depressed. But I should want to go out now because I'm going to be stuck in a hospital room soon enough. But I can't get outta that rut that tells me to grab my son, and crawl into bed and stay there.

I get excited, and scared, and nervous, and hopeful, and sad all in the same hour. I cry for no reason, then I cry for many reasons. No one seems to be able to make me feel better. And I don't expect them to. But I hate this person. I don't recognize her. And she is getting really tired of being strong. But the months ahead is where Im really going to need that strength.