Shove a little camera down my throat to find out what is wrong with me. Yay!
I met with Dr. B yesterday. I'm still not eating and always feel pretty damn sick to my stomach. So he is scheduling another endoscope thing to see if I have graft vs. host in my stomach again. I hope that's not it, but I am really tired of feeling like this. It's been about a month.
I have been trying really hard not to let it get to me. Zoe is here and I don't want to frighten her, but I feel downright awful. It is starting to affect other areas of my health. I barely sleep and I feel like I have the flu. I'm having problems walking again. I'm so achy. And I'm extra grouchy. Honestly, I'm really pretty scared. I know it's not stress, as when I'm stressed I usually eat more. But I can barely eat anything without feeling like I'm going to be sick. Nothing sounds good. No sweets, no veggies or fruit. Nothing. It's agonizing.
I'm tired of reading about all these people dying from leukemia and bone marrow transplants. The latest was Susan Butcher. The woman who repeatedly won the Iditarod. Her death is the equivalent to Lance Armstrong dying. I'm sure the death rate is not any higher than before; I know I'm just sensitive to it now. But it seems to me as no one gets better. Or they die. All the ones that have been around for a while have had big time complications.
It's beyond discouraging. I have never really thought that it would be me dying, but lately I am just afraid. I feel like I will never be healthy again. No matter how hard I try or want it. Yesterday I was in the clinic with a guy 3 years out who is having some serious complications. The other guy basically has no chance. He's going to die. Today I just broke down. I cried and cried and felt awful because Zoe was there. She hugged me. For a long time and I told her that I was sorry I was sad, but it wouldn't last long. I lied.
And then today just got worse. Because I had to say my final goodbye this morning to my Monkey Boy. My rock. My love. It was a complicated and intense relationship. One that I will always cherish. I rarely wrote about him because he was so precious to me. Like if others knew, it would be jinxed or doomed. And it was. Obviously it was. One of those sounds too good to be true things. Who the hell would fall in love with a single mom, bald cancer-ridden, no job-havin' chick? I really just guess God sent him to me to help make my ordeal more bearable. Which he totally did. Then my time with him would just be done. I hate it. I totally hate it. And don't understand it. One day I'm the lovliest, most wonderful woman, then the next it's just done.
I can't imagine him not in my life. I can't and I don't want to. We used to talk for hours every day. And tons of text messages - usually either funny, loving or encouraging (or all 3). It's harder to lose a best friend than a boyfriend, but he was both. He really was. I will love that man my entire life.
He was the best boyfriend ever. So loving. So supportive. And so funny. He knew when I needed comfort, and he knew when I needed a kick in the ass. I don't think there is anyone else on this planet that knows me better than he does. Not even my own family.
He deserves true happiness. But I am positive the path he is on is going to lead him eventually again to misery. And I just can't watch it. I can't be second best. As I said, it's beyond complicated. I don't think I could even explain it all if I tried. But he was one of the biggest joys in my life. I know he loves me. I know he misses me. And I know that we would be happy together. For a long time. We were going to get married next year. We talked about it every day. But I can't do it anymore. It's too complicated. It's not good for me to be this sad. And it just really is completely out of my hands.
I know everyone out there tells me that there is someone for me, but I really don't think so. You don't find your one true love more than once. And he is mine. I felt blessed to know him. I miss his sweet smile. No one but us will ever understand the incredible and loving relationship we had. I know he (and other people) want him to forget me, but I also know that he never will either. I really know everyone wants me to forget him too but I know that will never happen. It's just one of those things.
I know my priority is to get better, but this heartbreak is worse than when I split with my husband. Or any other man for that matter. Ok. I'm not going to write about it again, but I am truly devastated. I am going to be alone for a long time. And that's just that. I'm meant for other things.
I really dislike San Antonio. I think it's mostly because I feel so lousy. I miss my MD Anderson team. I miss my friends, of course I miss my Boy, and mostly my Houston family. I am so unmotivated. My parents are so sweet, but it's just not the same. I feel like I'll end up living here forever. I know my folks hates the idea of that, but I guess I can't see past feeling so horrible. I wish it was like when you have surgery. You're sick. You feel like crap. Then eventually you start to feel better. Right now, I can't imagine ever feeling better.
It's hellishly hot here, like Houston, and it makes you want to sleep all day. I also still look like a boy, so people either look at me with pity or like I'm invisible. My new doctor is sweet though. He actually gave me a hug. I think he knew I needed one.
[aside]
Zoe is playing with this really grotesque automated toy. It's this weird fake raccoon thing that is attached to this ball by it's nose. It rolls around on the floor and does these creepy flips. We live in the burbs, but apparently mom saw a skunk on the porch and we saw some deer the other day. Freaky.
[aside over]
I hate writing when I'm in the dumps. It feels so against my nature.
And no, Dad, I know you read my blog, but I really really really don't want to talk about it. My preference right about now would be to crawl in a hole and sulk for a while.
I can do this. But I think I'll have to talk myself back into it again.
Your assignment for today is to send some motivating vibes my way. I'm feeling sorry for myself. I know I am. I hate feeling sad. I hate being sick. This crap is getting really really old. I just want to go play.
I will not forget
How much you love me
Humangous Infinity +12 you said
Our Grace
Our joy
Our sadness
Our sunshine
How could I forget you
And your great capacity to love me
motivational vibes successfully sent. wish i could give you a big hug & some type of food that actually sounds good to you.
Posted by: beautifulmess at August 9, 2006 03:41 PMBoy,it sounds like your having a lousy day.
I read somewhere tears are how we deal with overwhelming stress. You have met you quota in that catagory. Time to get happy.
I know there isn't anything I can say about your heartbreak. Though I do know that many people think they will never find love again and when they are 100% sure someone special comes into their life. Do know when or where I just know it happens. It happened to me a long time ago and I am confident that it will happen to you.
Yesterday my daughter and I watched some Silly Symphonies on DVD. They brought me back to a more innocent time. If even for a hour of escape.
That racoon thingy I think is supposed to be put inside an empty bag of chips to look like a real scavenger. But I agree, yech!
Sending positively inspired vibes all the way across the pacific over the desert to you in sweltering San Antone. I am praying that you get your appetite for food and life back pronto.
Aloha,
EV
what a crappy day you're having -
these things are all CRAP.
of course, tomorrow is another day.
a day in which there COULD BE less crap, and perhaps a diagnosis for feeling so unwell.
AND how could a person not have a CRAP DAY when the person doesn't feel well?
Do you have the patience of a SAINT?
I think so.
I think if I were in your shoes I would be FUCKING MOANING all the DAMN time.
(I do hope you are amused with my use of the caps)
It's all CRAP. But you are here, and you must make the most of it all - and not even for ZOE
FOR YOU.
DO IT FOR YOU.
ONE LITTLE STEP AT A TIME.
see you tomorrow.
I send a hug.
bb
Posted by: blackbird at August 9, 2006 04:23 PMHi. I have been reading your blog for a few days. I found it through another blog. Funny how that always happens. Anyway, when I started reading your blog and your illness and Zoe and your life and your unsinkable optimism...I was inspired. Really, really inspired.
I don't even know but you've been on my mind for the past few days. And it kills me to come here today and read your pain. It really does. I wish I could reach into the computer and hug you and squeeze you really hard to send that extra bit of love.
Everything is through God. And I am asking you, as I will do myself, to talk with Him and ask Him over and over again for what you want. His answers will come to you. And He will give you what you need.
I really truly believe that a good portion of your pain is due to your heartache. And I can feel the love between both of you through your written words on your blog. And I must say that you never ever truly know what lies ahead. God works in strange ways and what may seem to be really isn't.
I am thinking of you and Zoe and Monkey Boy and praying for you and your health and your happiness.
Sarah
Posted by: sarah at August 9, 2006 04:27 PMi'm sending good thoughts your way. i, too, found you through another blog (blackbird's, naturally) and have been reading your stories for the last few days.
consider this an e-hug.
-kwh
Posted by: kilowatthour at August 9, 2006 04:43 PMthinking of you and hope tomorrow is better
Posted by: Nancy at August 9, 2006 05:56 PMI got nothin' but a buncha old cliches' so I'll spare ya.
I just came over to check on your progress. I know someday I will come here and you WILL be well. I feel it. Hang in there baby.
I will spare you the platitudes and just say HANG ON and HANG IN there. When things suck they always suck all together at the same time don't they. Even through your pain and heart ache I hear you doing what is best for you. Whatever it is you are never anyone's second best and that is the Deb-U that motivates me everytime I come to your blog.
All good vibes coming your way!
Posted by: Michelle at August 9, 2006 07:55 PMI am sending good vibes your way. You sure have a right to feel the way you feel and you aren't feeling sorry for yourself. You have lots and lots of mountains to climb, but take one step at a time.
I found out that one of my daughter's skating teachers had a bone marrow transplant several years ago. He was helping her retie her skates and cut his finger on the lace. He just casually mentioned how his skin is a lot drier since he had a bone marrow transplant and sorry about bleeding on her lace. He is the kindest and most wonderful man. I think that he has a gift of appreciating life and little things just like you. I hope tomorrow is better.
Posted by: Carol at August 9, 2006 08:04 PMYou don't see the ones who made it thru transplants in good shape because they are in good shape and don't need the hospitals & clinics anymore. Believe me, they are out there but you wouldn't recognize them because they look so healthy. You've made it way past 100 days, after you pass the 1 year milestone you'll look back on this as just a bump in the road.
Posted by: Kathy at August 9, 2006 08:24 PMLong time lurker, first time poster sending positive vibes your way. Once you feel a bit better (read: like eating), you'll start to like San Antonio more. How can you not like the birth place of Taco Cabana? I used to live 3 blocks from the very first one, on Hildebrand and San Pedro. I could smell the carne from my back porch. YUM!
Feel better soon, Deb.
Posted by: Kat at August 9, 2006 09:29 PMGood vibes sent your way. We all love you, Deb. Things WILL get better, healthwise.
Posted by: Jessica at August 9, 2006 09:30 PM*sending a truckload of e-hugs and good vibes your way*
We love you, Deb!!!
Oh man, you're just feeling down because of STUFF. But the stuff will pass, and you will get better, emotionally, physically, whatever-ly.
Sending good vibes your way.
Posted by: Karen at August 9, 2006 10:43 PMSorry about the boyfriend. :(
The SAT can be good. Next time I'm down that way, we'll have to hook up.
Posted by: Kami at August 10, 2006 01:20 AMSending love, sunshine, happiness and joy your way in oodles!
You can do this, you are going to beat this and every complication and 100 years from now you will still be amazing us!
alan
Posted by: alan at August 10, 2006 02:22 AMMotivational vibes coming your way right now my dear. I'm sorry you feel so crappy like. Peace.
Posted by: Traci at August 10, 2006 07:49 AMI had this feeling about the boyfriend...secret messages that were too odd to be for Zoe.
You deserve to be loved even if you feel you don't. Don't let the distance separate you if that's the only reason you are giving up.
Posted by: ieatcrayonz at August 10, 2006 08:46 AMDeb, hugs.
I'm sending you all kinds of love and good mojo. I know it's rough now - so waller all you need in it. But know that there are many of us (silent and strong) who love and adore you.
xx
Melissa (snit)
You can do this. You will feel better! I know someone that had a bone marrow transplant and she is doing great! She made it! As we know you will too.
Enjoy your time with Zoe. Enjoy your time with your parents. There will come a time when you will be so thankful you had this time off living with them. (believe me, I know that is hard to believe now) You are going to live again. You are going to feel well again. And Zoe and you will conquer the world on your own again. For this I am certain.
And that boy, well, hugs.
Posted by: Alison at August 10, 2006 09:40 AMMy motivating vibe is this:
There's blessings in the bad stuff! I am the friend that Alison is talking about. I too had a bone marrow transplant. I'm here, I'm alive! I too had graft vs. host. I'm here, I'm alive! (not a Lance Armstrong or a Susan Butcher) But I'm alive!
There's blessings in the bad stuff! I too am a single mother with two children. And still single. There's blessings in the bad stuff.
As I read I see the joy, love, inspiration that you got from monkeyboy.....you grew you became who your are through him and others....There truly are blessings in the bad stuff!
You can do this. I count my blessings everyday. Even the ones in the bad stuff! The blessing is there, you just have to find it!
My thoughts are prayers are with you.
Posted by: Lee Ann at August 10, 2006 10:09 AMHi Deb,
Just wanted to send you some virtual LOVE and HUGS. I am sorry you are still feeling so icky and can't eat. I'm also sorry to hear about your Monkey boy :o( I know you are sad but stay strong and you'll get through this as well.
Posted by: Claudia at August 10, 2006 10:31 AMSo sorry to hear how much sucky stuff is weighing on you right now. You deserve the best -- you are strong and smart and wise and clever and funny and such a loving mom with such a beautiful daughter...oh, and a great writer.(Trying to lay some good stuff onto you) :) Hugs and good vibes for some happy play days coming your way.
Posted by: Red Hamster at August 10, 2006 12:59 PMHang Tough, You know you can do it!
What counts is not necessarily the size of the dog in the fight - it's the size of the fight in the dog.
- Dwight D. Eisenhower
BIG HUGS TONS OF KISSES FROM AUSTIN! YOUR LITTLE SIS LOVES YOU VERY MUCH!!!
Posted by: Lil' Michelle at August 10, 2006 04:57 PM> Who the hell would fall in love
> with a single mom, bald cancer-
> ridden, no job-havin' chick?
Deb, you're *brilliant*. I can't help but think "who wouldn't fall in love with her?" You have to put up with so much crud, but you hang in there and you're just.. brave, smart, funny, loyal, and all the rest. Really - don't put yourself down :-)
Also - and I know this doesn't really help, but - I'm 27, and I've been single for 8 years, so you're not the only one on your own. Bah! :-)
Everyone has said what I think. You are strong,
and I think you got a crappy hand of cards.
But you are so full of life, and so loved by
so many. I pray every night you will find your
place in this new world of yours. Somehow I know
you will.
You've got all of us...why do you need a man?
Hehehehe...
~Hugs~
Posted by: Shell at August 12, 2006 10:17 PM