November 19, 2008

Relapse.

I had a feeling this time like I did last time. Saying goodbye to Zoe and my parents Tuesday morning was agonizingly hard; like I instinctively knew I wouldn’t see Zoe for a long time. I did some grieving in the car on the way up from San Antonio. I allowed myself the full knowledge of what this relapse means. It wasn’t a maybe to me. I just knew.

They are talking about a 2nd transplant for me. Same chemo routine as well with some modifications.

I get a lovely bone marrow biopsy and a line in my arm today Thursday. Sadly I know the drill. I got some spinal chemo today and will have more throughout the night.

My heart just hurts, but I was not surprised by this outcome. Please pray for my family and my daughter. I feel really defeated and am trying to rally. I think my chemo this time might be named Chuck Norris or Chemobama. I need some cancer ass kicking meds, similar to my Uma chemo.

I’m tired. And I can’t tell you how much I really just want to go home.

I can do this, but it really really hurts. II is so much harder than before. I’m now no longer considered a survivor. I have a long road ahead of me and am much more afraid this time.

I love you internets. I miss and love my wild bird-talking daughter ever so much.

Headed To Houston

Today was bizarre. I woke up to get Zoe ready for school. Dad has Monday’s off, so he took her to school. I went right back to bed and then slept until 1pm. I ate a bowl of Grape Nuts and then passed out until 3pm.

I sent a message to my docs at MD Anderson. They told me to come in right away. If I’m really bad off, I will go to the emergency room, but most likely I will head to my doctor’s office on Wednesday.

These new symptoms are totally similar to relapse symptoms of leukemia. I’m still trying not to freak out.

I can do this. My bird talker needs me.

Your assignment today – send prayers and good vibes my way (once again) please. Thankyouverymuch.

Hahahahahaha

This is something to think about when negative people are doing their best to rain on your parade. So remember this story the next time someone who knows nothing, and cares less, tries to make your life miserable.

 

Negative People

A woman was at her hairdresser’s getting her hair styled for a trip to Rome with her husband. She mentioned the trip to the hairdresser, who responded: “Rome? Why would anyone want to go there? It’s crowded and dirty. You’re crazy to go to Rome … So, how are you getting there?”

“We’re taking Continental.” was the reply. “We got a great rate!”

“Continental?” exclaimed the hairdresser. “That’s a terrible airline. Their planes are old, their flight attendants are ugly, and they’re always late. So, where are you staying in Rome?”

“We’ll be at this exclusive little place over on Rome’s Tiber River called Teste.”

“Don’t go any further. I know that place. Everybody thinks it’s gonna be something special and exclusive, but it’s really a dump, the worst hotel in the city! The rooms are small, the service is surly, and they’re overpriced. So, whatcha’ doing when you get there?”

“We’re going to go to see the Vatican and we hope to see the Pope.”

“That’s rich.” laughed the hairdresser. “You and a million other people trying to see him. He’ll lo ok the size of an ant. Boy, good luck on this lousy trip of yours. You’re going to need it.”

A month later, the woman again came in for a hairdo. The hairdresser asked her about her trip to Rome.

“It was wonderful,” explained the woman, “not only were we on time in one of Continental’s brand new planes, but it was overbooked, and they bumped us up to first class. The food and wine were wonderful, and I had a handsome 28-year-old steward who waited on me hand and foot. And the hotel was great! They’d just finished a $5 million remodeling job, and now it’s a jewel, the finest hotel in the city. They, too, were overbooked, so they apologized and gave us their owner’s suite at no extra charge!”

“Well,” muttered the hairdresser, “that’s all well and good, but I know you didn’t get to see the Pope.”

“Actually, we were quite lucky, because as we toured the Vatican, a Swiss Guard tapped me on the shoulder, and explained that the Pope likes to meet some of the visitors, and if I’d be so kind as to step into his private room and wait, the P ope would personally greet me. Sure enough, five minutes later, the Pope walked through the door and shook my hand! I knelt down and he spoke a few words to me.”

“Oh, really! What’d he say?”

He said: “Where’d you get the shitty hairdo?”

Black And Blue

Went to a school fundraiser tonight. It was really great to get out for the night and wear grownup clothes. I could never be a model because a) I hate taking pictures of myself and b) I always have the worst facial expressions!! My makeup looks much nicer in person although I was feeling pretty but realized when I got in my car to go home that when I reapplied my lipstick I had it all over my teeth and no one told me – GAH!

All my pictures look about the same because I take them in my car with my dumb cell phone. I can’t figure out the viewfinder when I take my own picture. But here they are.

 

Insurance stuff is very very slowly detangling. I need to see a doctor for some labs, but cannot incur that expense; especially when hope is on the horizon. (and thanks for the paypal donations. I can’t see the info, but hopefully will get email information to thank you personally. How awesome of y’all.)

I can do this. I’m bruising, but not giving in.

Your assignment today is to say hi. Pretty easy, huh?

A Black And Blue Mess

Still uninsured. Still a mess.

Still have weird scar tissue on my lower back. I think it is in the spot where they do my left bone marrow biopsies. I’ve lost so much weight you can actually see it poking up.

I am bruising like crazy too. It worries me a little bit because that is a symptom of leukemia. I have a five inch bruise on my stomach. I took a picture but it looked too gross to post.

I was sort of glad to read about the marrow foundation running out of funding. That means many people responded.

Pretty remarkable story!! Doctors Say Marrow Transplant May Have Cured AIDS.

 

BERLIN – An American man who suffered from AIDS appears to have been cured of the disease 20 months after receiving a targeted bone marrow transplant normally used to fight leukemia, his doctors said.

While researchers – and the doctors themselves – caution that the case might be no more than a fluke, others say it may inspire a greater interest in gene therapy to fight the disease that claims 2 million lives each year. The virus has infected 33 million people worldwide.

Dr. Gero Huetter said Wedneday his 42-year-old patient, an American living in Berlin who was not identified, had been infected with the AIDS virus for more than a decade. But 20 months after undergoing a transplant of genetically selected bone marrow, he no longer shows signs of carrying the virus.

“We waited every day for a bad reading,” Huetter said.

It has not come. Researchers at Berlin’s Charite hospital and medical school say tests on his bone marrow, blood and other organ tissues have all been clean.

However, Dr. Andrew Badley, director of the HIV and immunology research lab at the Mayo Clinic in Rochester, Minn., said those tests have probably not been extensive enough.

“A lot more scrutiny from a lot of different biological samples would be required to say it’s not present,” Badley said.

Marrow Awareness Month – Join Online Free!

Thanks Rachel Y

Save a life. Sign up on the National Marrow Donor Program Registry.

Join Now


You can join the donor Registry online today at no cost to you. In honor of Marrow Awareness month, Otsuka America Pharmaceutical, Inc., has provided an unrestricted grant to cover the cost of tissue-typing tests for potential donors who join online.

 

Join online for free while funding remains. Usually it costs $52 to tissue type the donor.

It’s easy to join:
Step 1. Confirm you meet basic donor guidelines.
Step 2. Complete the online registration form. This step will take about 30 minutes. To join for free, you must complete your online registration before November 30 or while funding remains.
Step 3. Use the kit mailed to you to get a swab of cheek cells. These will be used to test for your tissue type.

Seriously, it’s as easy as a cheek swab. If any of my readers end up donating stem cells to a patient, I’ll come hold your hand or send you a pie. You never know. You might save an adorkable girl’s life one day.

Mom’s Little Alarm

Ok. During the week, Zoe is a pain to get up and get moving. I usually tickle her or breath my stink dragon breath on her thereby melting her face.

But on the weekends, she’s always up at the crack o’ crack.

This afternoon we have a soccer game at 12:00pm. So Zoe walks in at 8:15 and says, “Hey mom, you still have two hours to sleep. Okay, bye bye.”

Went to dinner after soccer practice and took this picture. Not the most flattering to me as I have zero makeup on, but my hair is getting longer (touching my shoulders) and we had a fun time.

 

I’ve been having some problems breathing lately. My insurance is still messed up and hasn’t kicked in yet (long story) so I haven’t seen my doc. I also have some kind of knot or scar tissue over my left bone marrow biopsy site. It really hurts. I’m a vicodin kind of girl lately. Still sleeping a lot, but overall I feel much much better than I did a few weeks ago.

I can do this. But why is it still so darn hot here?? Isn’t it November already?

Your assignment, enjoy the outdoors. Even if it is freezing or raining, just get up and get out.

Gain Some Perspective, Geniuses

Uh. Yeah!

I’m going to tell a few of you off, but read this over and over until you can admit to yourself that you need some help. I love you. I always will. All of you, please remember this:

As long as I’m living, I’ll be waiting
As long as I’m breathing, I’ll be there
Whenever you call me, I’ll be waiting
Whenever you need me, I’ll be there

[deb_bitch]

 

I’m in a bad bad bad mood.

Conversations with me:

“Why is it that I’m the suicidal one, yet you get the terminal disease.”

“Funny, but for as much as you and Jeanne fear death. I would almost welcome it.”

“If I were in your position, I wouldn’t go through treatment. I’m already ready to die.”

“I’d rather be dead than in so much pain like you are.”

HERE YOU GO!

1-800-273-TALK Suicide Hotline

1-800-448-3000 Depression Hotline

I’m sick of it. I’m sick of your self-pity. Quit piling shit on your head, as Momo G would say. You all may never ever ever speak to me again, but it’s much better than listening to how you have such a horrible life that you’d rather die. I’m here for you, but I can’t take that crap anymore. It makes me sick to my stomach. It hurts my heart and hurts my feelings.

I’m trying so damn hard, and so many of my friends are trying to live through treatment. Trying to live through surviving. I have seen so many of us fight like hell to live. Just to live. Live through pain. Live through sickness and poverty, nausea and agony without giving up or losing hope. And it’s not just cancer. There are so many that live day to day with chronic illness. With severe depression. With disability. With mental illness. My military friends see so much death and destruction, I don’t know how any of them don’t lose their minds. It’s not an easy thing, but we still do it because our will to live is overpowering. It just is.

I don’t even pray anymore that they (or me) thrive. After what we’ve experienced, it’s enough just to ask that we be allowed to grow old. I have given up on love, on feeling great again, on feeling powerful and strong physically (at least for now). But I will never give up on life, even if I know I’m dying. Or on finding joy. Or being alive! I just want to have more days where I’m not in severe pain than not. I will fight death so I can watch my daughter grow up and laugh and find joy. I falter sometimes, but not that often, and not for long. Zoe MAKES me not give up. She truly is the keeper of my hope.

And YOU have the fucking nerve to tell me that you want to die? FUCK YOU! I mean it – FUCK YOU. Even jokingly, still, #^&@# you!!! If you had any sense whatsoever, you’d apologize to me. I don’t feel your apology when you say you are sorry you affronted me. I want you to KNOW why what your said is inappropriate to say to me or anybody actually. And really feel sorry that you didn’t get that point. That you don’t get that point because you have your head up your ass feeling sorry for yourself all the time.

And then you should send me flowers because I’m awesome or make a donation to the Leukemia Society in Brenda’s name. I’ll forgive you because I know your agony, but I still am pissed at you. It’s not about you. It’s not about me scolding you. It’s about ME getting angry. Tell your priest or counselor, but if you constantly Eeyore, leave your friends and loved ones out of it. You’re basically telling everyone to fuck off because we aren’t important enough to live for. I know how that feels, I’ve been there. But I also know that I am resilient, that I was being unfair, and I will persevere. I will try as hard as I can not to hurt my loved ones. That I also owe it to all my friends who didn’t make it.

I’ve seen them die. So many of them. I’ve mourned. And agonized over people that died too early. People who just couldn’t survive. They didn’t make it. Their families who lose so much. For my army penpal, Stephen Maddies, who was 18 days from coming home before he was picked off by a sniper.

I can’t tell you how many nights I prayed and prayed and cried for my friends. For my daughter and my family. For my beloved friends who want so much to live. When Brenda was dying, I thought God was going to cover His ears just because we all prayed so hard for her to live. I tried to will her to live and Paula and Ashley and Pam and all the many others. Knowing that one day people might be doing that for me. That in a heartbeat it could all happen to any of us. Dying really isn’t anything you can control. So I try not to worry about it. It just makes me cry. And I give my worries up to God. I let people in. I find the joy instead of constantly dwelling on the sorrow. Be grateful for the things and people you do have instead of balling up into yourself and becoming so self obsessed and absorbed. You all have children for God’s sake and many many people that love you.

Honesty, I think my life is pretty damn great. Even through all of this, I still think I’m lucky, blessed, grateful, etc. I have my family. I have friends. My life isn’t always perfect, but sometimes I just want to say FUCKING COWBOY UP! Everyone has problems. I know my family takes care of me, don’t tell me I’m spoiled. I’m entirely grateful for that. But I am the one in pain and I’m the one taking meds and seeing doctors all the time. I’m the one that KEEPS me alive. Don’t you even think that for ONE DAMN minute that I wouldn’t trade everything to get my old life back. To being able to take care of myself and feel better and normal. To working. I’m not lucky. I’m grateful that I do have people that are willing to help me, but it all starts with you allowing people in. By asking for help when you need it. And by getting the help instead of being so damn stubborn and try to do it on your own.

I know that your problems are serious and seem overwhelming. But sometimes you just have to deal. If it’s something you can change, then change it – make a point to change it and DO it, don’t just talk about it.

But if there is nothing you can do, don’t let it shut down your entire life. Stop freaking out. It’s not like that will help or make it go away. If you can’t function or cope, then GET SOME HELP!!! Not only that ACCEPT HELP from people that love and care about you. No man is an island.

Maybe if you did get help, or allow people in your life, rediscover your joy and what you are grateful for, you might actually BE able to cope with your problems. Not that it will make it go away or change anything, but it might help you deal with it instead of freaking out and losing your focus.

I think one of the great things I inherited from my mother is the ability to persevere through the hard times. Of course everyone gets down once in a while. But even when it’s been hard, I still can find something in myself to get through it all. I think coming to the realization “that it is what it is” (thanks Sis #1). I know that everyone deals with things differently, but when people tell you … hey, maybe you need to get some help and you refuse, then you need a kidney punch. Stop wallowing. You know you’re wallowing. Stop piling shit on your head and feeling sorry for yourself.

Because, you know what? WE LOVE YOU!! But even people that love you don’t want to hear about your issues if you don’t deal with them and constantly talk about how shitty everything is. Fix it or shut up. Maybe it’s time for some therapy or some pills.

I know that there are people who are way worse off than I am. I’m not starving. I have a roof over my head even if I don’t own it. I can see and hear and laugh and talk and write. I’m not dying, but guess what, I’ll still find joy until I stop breathing. I will find things to be grateful for every day. I will still laugh and read jokes and find humor in the absurd.

Tell jokes when you are getting a bone marrow biopsy and then I’ll tell you HELL YEAH! If you are sick and you can plant tomatoes and walk your dog – HELL YEAH! If you can wear full makeup when you’re bald, barfing and unable to walk and still have some attitude – or work part time and raise your child and kiss your husband when you feel like crap – or take gorgeous photos when you are dealing with depression — HELL YEAH!! If you get your ass to the gym, even if you weigh 300 pounds… Well you know what I’d say. Do it! I’ll high five you. Stop and “accept the good.”

Now that’s called perspective.

I love you, but I want you to try. Please get help.

Just this very moment I heard Lenny Kravitz’s song “If You Want It.

Looking through life’s window pane
Don’t you sit around wasting time
That would be a crying shame
There’s a power that’s deep inside
And it burns just like a flame
Just believe and you will see that God
Will shower you like pouring rain
If you want it
You can change your world today
If you want it
Just break free and walk away
There’s a reason
For you to explore
Why you’re here
What do you say
And the beauty is that you’re the one
Who controls just how you play

There’s a choice that you need to make
One is ore and one is clay
So drop your chains and take up your cross
And let Jesus make your way
If you want it
You can change
Your world today
If you want it
Just break free and walk away
If you want it
You can change your evil ways
If you want it
Just break free and walk away

If you want it
You can change your world today
If you want it
Just break free and walk away
If you want it
You can change your evil ways
If you want it

Just break free
And walk away
—————–
I can do this. I won’t give up. And I won’t give up on you. [/deb_bitch]

Your assignment. Check yer perspective today.


 Create Your Own

Songs that came on while I was writing this:

Life Without You – Stevie Ray Vaughn
I’d Rather Go Blind – Etta James
Beatles Covers – Imagine by Jack Johnson
Oh My Love – Jackson Browne
Beautiful Boy – Ben Harper
For the Weary – Allison Sattinger
Why Do I Love You – Jesse Dayton
Reservations – Wilco
Dumb – Nirvana
Christmas Time is Here – Vince Guaraldi Trio

Christmas Time Is Here
Written by Vince Guaraldi, Lee Mendelson

Christmas time is here
Happiness and cheer
Fun for all that children call
Their favorite time of the year

Snowflakes in the air
Carols everywhere
Olden times and ancient rhymes
Of love and dreams to share

Sleigh bells in the air
Beauty everywhere
Yuletide by the fireside
And joyful memories there

Christmas time is here
We’ll be drawing near
Oh, that we could always see
Such spirit through the year
Oh, that we could always see
Such spirit through the year…

Love love and more love.

paypal – a nifty new button

Thanks to Sis #1 for this:

 

Support this blog. Pretty pretty please.

I don’t like ads on my site. I don’t like to mess with my blog a whole lot (e.g. the horrid orange experiment change). I just like to write. And I like to blog. I want to write. And I’m not working anymore. There are lots of reasons for that, but they hurt my head just to think about. So here I am. I hope to be here for a heckofa long time too!

I can do this. My brain is on overdrive and it’s like that scene from Jerry Maguire where he stays up all night writing his mission statement. It’s a great scene. I love that movie.

I have a vision and I’m going to be recruiting soon. I have a whole debu_team behind me!

 

Nabbed from my writing guru Jeanne:

But I still need to make some money from the blog, which takes the best hours and the best energy of my day. [aside] not as much of my energy as Jeanne. I haven’t been putting much time into blogging lately, but I love it. And eventually I know that God has a plan for me and somehow my writing and blogging and passion about leukemia awareness will be in that plan. Anything can happen. I just have a feeling.[/aside]

The result? The donate button.

Thank you for any cash that you might be able to spare. I appreciate it more than you will ever know.

A special thanks to the cancer patients who have sent me donations, and then apologize for not being able to send more!

 

I know who my audience is, so I expected that if people were able to send a donation at all, it would be in the $10 to $20 range. Those $20 contributions are keeping me at the keyboard, blogging away.

A note about using PayPal: You can make a donation by clicking on the donate button and going through PayPal without setting up a PayPal account if you don’t want one. There is an option to simply pay with a credit card.

Man-o-gram – More Parity in Cancer Awareness Advertising

No lie.
And I’m sorry if some of these ads are explicit, but gosh, if we can have the kind of pinkgasm with Breast Cancer Awareness to the point where it is in grocery stores, charity races, clothing, kitchen kitsch, schools, ribbonsgalore, decorating entire buildings swathed in pinkstink, why not make other cancers more accessible and talk about them as well? When will it be ok to speak the word “prostate or colon” cancers without the usual *whisper?*

The Google. She scares me. I just found my favorite new site. The gofugyourself.com of advertising. I have yet to reach the end of the internets. Must sleep soon.

 

Some parity for the boys. Again, some very sad, some ridiculous, some surreal, some informational, but it doesn’t seem quite as humiliating as Jingle Jugs for Life. Then again, check out Carpe Testes: Be a Man – Self Exam. Looks like men perhaps are more visual and need videos?

Dead-Men-large-v3.jpg

Prostate Cancer Earrings?? They will make anything just to make a buck!
prostate cancer awareness earrings.jpg

prostateman_02.jpg

ccs_balls280.jpg

I liked this ad:

Song Lyrics

Prosty the Spokesgland
Is a prostate gland, we’re told
Buried deep inside largely out of sight
He’s ignored by young and old

Prosty the Spokesgland
How we hope that lump’s benign
But it’s hard to say
Cause the only way
To diagnose and treat is blind

There might just be some cancer
In that lump they found today
But we really can’t be sure right now
Cause you can’t trust the PSA

Prosty the Spokesgland
Spreads the word on what we need
No more pokes and prods
No more biopsies
How about some imaging?

Prosty the Spokesgland
It’s time that we all gave a damn
Cause we know he needs
New technologies
Like a hi-tech Man-ogram

Lumpety lump lump
Lumpety lump lump
Look at Prosty grow
Lumpety lump lump
Lumpety lump lump
No more bending over so