NEWS From The Tract Hole

Got a card from Z. you can talk and record messages.

HI MOMMY! I LOVE YOU. I HOPE YOU GET BETTER

PLAYS YOULL BE IN MY HEART BY PHIL COLLINS
I MISS HER SO MUCH

I NOW HAVE A TRACT IN MY NECK AND CANT TALK OR EAT.. SO WEAK. NO FOOOD SINCE NOV.BEINNG TRANSFERRED TO A REHABB HOPEFULLY TODAY TO LEARN TO BREATHE ON MY OWN AND WALK N STUFF.

TIM, THAT COMMENT IS WHY I ADORE YOU.

Missing You

cant type well, but thought i’d try it.

will update when i can. still accepting prayers1

love goes out to Alaska Rachel, who lost her son at 40 days. sweet baby.

miss my sweet birdtalker

Houston Battle Red

First, yay for the Houston Texans winning on Monday Night Football. Second, hey, they are going to have a big blood drive too. Sis #1 wrote about it on her Texan’s blog at the Houston Chronicle. If you go there, you also can give them my information so I get credit for that donation.

Here is the link:

Http://Blogs.Chron.Com/Texanschick/2008/12/I_need_your_help_for_the_most_1.Html

Thanks Sis # and the Texans!

And thank you to anyone that donates blood products, regardless of if I get the donation credit or not. There are thousands of patients like out there like me. Waiting every day and being so overwhelmed that people really do take time out of their days to donate my blood.

In the past, I’ve made people who have donated blood cry before. They say that they just do it because it’s kind of a habit by now, but they forget that someone actually receives those blood products. It still amazes me. I am always thankful for when I get a transfusion.

 

Today has been kind of a slow day. I am so hungry, but I can’t keep eating ice cream and softee icees. It just doesn’t feel like food to me. The mouth sores are really pretty bad and it’s no longer a taste bud thing, but more of a when I chew, no matter what it is, it feels like I”m chewing broken glass.

I still am craving an Arby’s Roast Beef sammich.

ok. Just got off the phone with Zoe. We hadn’t really talked in a few day, so we did some catching up. At one point, I thought she started to sound sad. I told her, “Honey, please don’t be sad. You know that I”m always in your heart not matter where I am.”

“I just don’t want you to die, Mom.”

” I said me, either kiddo. But everyone dies someday. It’s just that I don’t feel like it’s my time yet.”

“Me either too.” I hope that she and my mom had a good bedtime routine tonight. Some praying, reading and singling and lots of squishes. I miss that the most. Just being and snuggling with that girl.

But today I was seriously wondering, what if after this round of chemo, my body just won’t go back into remission. What if they can’t kick its butt? My muscles are so much weaker this go round and the chemo is stronger and not quite as tolerable. I’m only on the first round too. I get a biopsy in a day or two. Hopefully I will be able to get some results that make me feel a little calmer.

I can do this. Just lining up some ducks in a row. Next to my sammich.

Your assignment today is to thank a blood donor, or recruit some new ones.

More Blood Products

Any suggestions on healing bruises? Like big ones that trauma patients get?

I got 2 pints of red blood today. I always say prayers for the person that donated.

I’m tired
Still unable to eat much
Mouth sores (will try the tea, thanks, Bren/Cody’s mom) Snaggy looking rats nest in the back of my hair, but I can see that it’s thinning and falling out. I need to walk more, but I’m a peeing machine (I hate lasix!) I am finally able to stand up on my own and walk around the room a little bit.

Thank you all so much for checking in on me. I feel so weak now it’s crazy. I really just wish I was able to eat without everything tasting like fire. Unfortunately the only good thing is Gatorade.

Reading comments. Going to bed.

Mucho much love!

Donate blood if you can or make someone donate for you. It truly has been life saving for me lately.

Fast Entry. Not Much Energy

This chemo has just opened such a can o’ whoopass on me. I finished up the inpatient stuff last week and lo and behold (just because I wanted some stuffing and pie) the extreme bodily fluid explosion decided to keep me up all night. I dry hurled for hours and now there is some speculation that perhaps I inflamed a rib. I’ve never broken a rib, but I can imagine that is how this feels.

I got way too dehyrdrated for my own good and Sis # kindly drove me to the ER, where they made me HIGH!!! So they just kind of gave it the good ol’ college try and then admitted me to the hospital. A day later I got some additional chemo and have had quite a few transfusions of platelets and red blood cells. I got some additional chemo again this evening. Yet, dangit, I still have had not pie. Not that I could actually enjoy it because el diablo rojo has given me crazy sores in my mouth. So basically mashed potatoes tasted like jalapenos.

I feel way too weak this time. My muscles are just bruised and battered. I swear I do look like I’ve been beaten up. I should call Zoe’s uncle (former pro boxer) and ask how to heal the stutf.

My numbers are spooky low to me. My platelets have been in the 200′s for yers. They are supposed to be at least 140, and today they were 11. ELEVEN! I wish I felt up to eating steaks because I just would just eat a filet at every meal.

I do get pretty much dailly transfusions or bags of blood. I would much rather eat steak.

Sis #1 and Sis #2 have been visiting mucho. It’s just nice to have someone come in your room and tidy up a bit when you are weak. Sis #1 made the magical muffins again and Sis #2 helped me out with a major power shower. It’s the closest thing to a massage I think I am allowed with such low platelets.

It felt sad to miss Thanksgiving with my parents. I don’t think I have missed even one before. Zoe had a great time with the cousins that she practically passed out last night. I haven’t spoken to her often, but I am the only one that can update her list on Amazon. I don’t think she really needs much as she has so much, but her dad is buying her a bike and a DS game to replace the one she lost. I would just have to ask what games she likes. Personally, I know she likes to shop at Target and Marshalls and Blockbuster, but the girl gets way more than she needs. She’s starting to ask more questions than we can really answer. It hurts to know I can’t see her little face. I used to always drag my photos of her with each hospital stay.

Me? I need nothing except prayers, which I totally have to make myself hear sometimes. I’m trying but it’s hard to feel so scared and vulnerable to God’s will.

I can do this. It’s trying to kick my ass, but I just can’t let it.

Your assignment today is to drink something just really tasty. Right now the greatest thing I have had so far was an icy cold Gatorade. I wonder how an Icee would do on sore mouth? More 7-11′s need to make Crystal Light Icees. Then perhaps a hot tub of soda wouldn’t give you the tub with it.

Love you. Thank you so much for the comments. I”m still too out of breath to talk much on the phone, but trust me, I hear the power of the internets loud and clear!

A little humorous and a little bittersweet.

“Zoe, you know mommy is getting medicine again, right?”

“Like for cancer?”

“Yes, but I think this time I will let you draw whatever you want on my bald head. My friends want you to update your Christmas wishlist on Amazon Make sure you do that, ok?”

“Can I get that double Barbie Dreamhome? (like I have a clue what that is even though she already has the big castle).

“It’s possible, but we will have to see. Make sure you take Papa to Academy to pick out that bike you wanted. I want you to be able to ride before Christmas.”

anxious pause on her end…

“I’m not sure when I can come home, but you know I’m always in your heart, don’t you?”

“Yep. Of course.”

“Mom, I will call you back later tonight, ok? I’m watching tv.

“Sure. I will sing to you.”

“Good. I like when you sing even though you aren’t a very good singer.”

I can do this. I’ve been dreaming of my bedspread. And a dark, quiet room.

Your assignment today is about the same. I’m taking it a day at a time. I wish turkey sounded appealing though.

A Long Night With El Diablo

Ok, these Chuck Norris jokes are cracking me up.

I had more platelets today and I always try to pretend that some studly, tri-athlete, handsome doctor has donated my blood products to me. So I get extra POWAH!

I’m now hooked to my least favorite chemo, nick-named El Diablo Rojo. It gives you the worst heart burn of all time and nothing makes it go away.

I am so bruised I look like I have been in a bad car wreck. Even tape bruises me now. I hope I don’t get hit in the face, because then people might stare. *rolls eyes*

 

I tried hard to take a cute picture before my hair falls out again, but I smell kind of rank like chemo meds and my hair is getting wig-ish. It’s creepy!

Zoe has a cold, but Momo G has magical powers.

I can do this. Thoughts of home and my bed bring me home.

I’m going to try to sleep. Your assignment today is to enjoy your week and be thankful. Thankful with pie.

PS – My Bro #1 who was my donor said that I’m just having a grudge match vs. the cancer.

More Blue Than Black

I took that picture in the ER because I had just recently got a blood draw that gushed blood for 20 minutes down my arm. It’s how I ended up in the ER. I had one more blood draw after my appointment with Dr. Q where he told me I had relapsed. He was so sweet and usually jokes a lot with me, but he looked like I felt. He touched my hand when he told me, “You know what this means?” and I tearfully replied, “Yes, I’ve relapsed, haven’t I?” He said a few more things and I waited around and made some of the hardest phone calls of my life. It was so much easier the first time I found out because I was surrounded by my women of courage. It was gut-wrenching to hear this alone.

My platelets were only at 11 (they are supposed to be in the 140 range) and the transfusion room was booked. I was going to have to wait another day. (For example, my platelets have been in the 250 range for about 2 years now, so this was freakish to me) They had to do some additional tests and I got a blood stick and then walked to the lobby to go pick up my car. I was exhausted and carrying my purse and meds and sat down to look for my $15 valet ticket. It was then that I noticed I had blood gushing down my arm and all over the new purse I got for $20. I had never carried that purse before too. What a giant bloody waste now.

There was a very kind security guard and a cute occupational therapy nurse who grabbed a bunch of big towels and wrapped my arm. The guard wheeled me to the ER where I waited to be admitted to the Big House for about 24 hours. You can’t sleep there – not comfy whatsoever, but the staff is the sweetest. I feel safe here. Which makes me incredibly sad.

I am sad. Very sad. I prayed and hoped that this day would never ever come again. That I would never receive another ounce of chemo in my life. That I could use my superpowers for good to get people to donate blood, understand stem cell transplants and sign up on the marrow list to save lives. That I would live long and write and give speeches and find out my place in this messed up little world. That I could be a change for a cure for this hideous disease. Not just a ribbon pushing, consumerism wanna be cure, but one that would really finally change how they solve this disease and how they can treat people without half killing them in the meantime. Where people can live at least a better life after treatment instead of slowly re-dying. I have a faith for this cure. I know one can be found and I always felt like it might come in my lifetime. Now I am afraid that it won’t.

As I sit here and watch 8 pumps fill me up with chemo and meds and antibiotics and fluids I can’t imagine that I will still be here. My faith and your love and prayers are what I am living on this moment. My family’s care and love and support. If they could will me better, I know they would. Even my lovely Tim and Jeanne want to come see me. That means so much to me with all that they are both going through.

But mostly I am sad because my heart is in San Antonio. I barely got to drop her off at school Tuesday and I so badly wanted to jump out of the car after her to give her more and more hugs and squeezes. I don’t think she even looked back; just her usual byemom wave and skip with her ponytail blowing in the wind.

 

I would give anything to be in my cozy comforted bed snugged up with my gorgeous bird whisperer. To drive her to her first basketball practice tomorrow. Or even sit with her and watch insipid Disney shows just to be with her. I live to cheer for her team at soccer and basketball and take so much joy in watching her little body move and that fun spirit she shows with her friends. I adore them all and the parents are so welcoming and warm and just plain cool.

She is doing ok, although getting a little sinus thing because of the wonky weather, but she doesn’t really want to talk on the phone. I’m not sure if she, or any of us, understand the extent of my stay in Houston. I just want to make it all go away so I can see her. To hold her little hand in mine when she sneaks in my bed just to be next to me. I know she is there, but sometimes I just pretend not to notice so we can snuggle.

To eat popcorn and make sugar free icees and sneak off to the movies just so we can sit in the dark and laugh and giggle. When she doesn’t know it, she pulls up my shirt over my stomach a little when we watch tv in bed and she rubs my tummy and says soothingly, “Belly. Belly. Belly.” Because she knows that it’s hers. When I’m sick, she sometimes resents it and gets mad because I can’t do more, but she also can be so caring and kind and little nursemaid to mom. Her little signs, “I love my mom because I love my mom” says it all. She’s always been my girl; my mini me.

Many months I had a bad feeling about what was about to be on the horizon. I kept feeling worse and worse. And seeing one doctor after another who would blow me off. I kept having symptom after symptom and felt weak without much reason. Then the breathlessness and bruising started getting worse and I knew it was happening again. The extreme fatigue; wanting to sleep all day. The overwhelming feeling of wanting to do so much and spend time with my family and Zoe and her friends. I just don’t want to miss out on my life. On her life. I can’t. She is in my heart.

That’s why when they did my heart scan, it was huge! They were impressed by my numbers as they usually are in the 50% range for most people. But with my MUGA scan, mine used to be 76% before, but two years later, they are now 79.5. I think I impressed the staff. But it helps to have a little piece extra to help you fight.

She is the reason I must do this. I know, and will always know, that I need her more than she needs me. Her name literally means Full of Life and it’s on that strength that I must pull all of my power and resources and faith.

I can do this. I have many many reasons to.

Your assignment is to spread the word. I know from before I can’t do this alone. I may not always be able to talk on the phone or answer email or comments, but I know they are there. I am always behind on thank you notes and correspondence. But I feel your prayers. I feel your strength. I appreciate blood donations and financial donations of every amount. I don’t think anyone could understand how much your power of the internets really helps me not feel so alone. They help me in that way (like him or not) that Chemobama makes people want to scream and shout, “YES WE CAN!” When I get down and blue, I need to feel that. I need to feel the power of Chuck Norris, the strength of Uma and the power of the internets.

And I have my loves. They are the most powerful of all.

I love you Zoe love. I miss your sweet face. I promise to come home to you. I will make it happen. I will make it happen with your bird talking help. Love love.

Chemobama

Day 2 of Chemobama.

I got platelets yesterday and 4 pints of blood today. It’s helped with the breathlessness. Sis #1 brought her amazing muffins and Sis #2 is going to drop off some laundry and maybe dinner. I love my family so so very much. I’m completely blessed.

Thanks for the comments. They really mean so much to me. This has been really hard and I”m sooo so missing my sweet bird-talker. She still doesn’t know the full extent of all of this. My heart is breaking over that, but I don’t know if she’s ready to understand that I might not see her for months.

I’m still big time black and blue and it’s getting worse. I got some lasix today and man, it was crazy pee pee day too.

I’m going for a walk today. I may not be able to answer all comments and email, but thank you Interwebs. You still rock and I still love you all very very much.

I can do this. I have the POWAH of Chuck Norris.

Your assignment today is to leave me your favorite Chuck Norris joke. I also would appreciate the spreading of the word. I am back to taking the donations for the deb_fund because my insurance fell through. We are hoping to fix it on Monday because it is totally a clusterfuck. Also thanks so much for the prayers for my family. It’s so hard on them, although this time I’m still pretty scared and trying not to be. But knowing what all I am facing is skeeving me out. My hair texture is already changing from the chemo. Next it will fall out. *whimper* I wish Shoshie was here so she could paint something lovely on my bald head.

Ok. My walk is waiting! Love love.

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.