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.

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?