AML Round #2

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Friday, November 26, 2010

Bone marrow biopsy....

I wrote this a year ago when I began my journey with AML, but it has all resurfaced with the prospect of facing my next biopsy on Thursday (12.2.10) So I wanted to post my words here too.....all of them true as the moment I wrote them
"Procedural sedation is defined as "a technique of administering sedatives or dissociative agents with or without analgesics to induce a state that allows the patient to tolerate unpleasant procedures while maintaining cardiorespiratory function."[1] It was previously referred to as conscious sedation"

I was taken down at 11ish this morning for my bone marrow biopsy. It was to be a CT guided conscious sedation biopsy. I was given propfol and fentanyl... aparently enough to knock out a horse. I was strapped to a table face down and slid into the CT machine as the Xray tech (Dr Nico wasnt there) numbed the back of my right side. They did both aspiration and biopsy with me screaming and crying my head off. Only to remove the needle, discover they hadnt extracted enough and had to put it back in. See picture below. They then had to use a bone hammer to get it the last way through my bone....
praying this time is easier....

Wednesday, July 14, 2010

My new normal?



OK, I have to be honest. I have put off posting for the last two months because what I feel and what I know I “should” feel are so far and distant from each other that I cant even make sense of why I am going though what it happening to me.
As all of my loved ones know I was declared cancer free at the beginning of June….what I didn’t plan on, what I didn’t account for is this long road ahead that I have found myself on.
It is totally normal for chemo patients to have fatigue, insomnia, pain, and a laundry list of other aliments all of which the doctors are spot on in treating. What I hadn’t planned on is that just because the cancer is “gone” all the aliments are still here…. And what’s worse is that I have a doctor with the attitude of “I cured you the rest isn’t my problem”
I wake up every morning praying I have the strength to make it through the day, weekends are the hardest because I don’t have the relief of daycare to count on for several hours like I do during the week. I spend my days fighting the muscle weakness and pain to try to do simplest of things like fold a load of laundry or take the trash out. I have given up on harder tasks like cleaning the hardwood floors or the tub…..thus it simply doesn’t get done.
I try my best to eat….most days the thought of food just makes me gag. I try to take a nap most days but I am sure that it’s worsening my insomnia. I cant sleep at night and when I do the dreams are unbearable. I try to play with Sarai in the afternoons/evenings but simple things just wear me out….. Giving her a bath can leave me sitting on the floor fighting back tears from the muscle pain and shear exhaustion.
I know I sound like a whim like I am just bitching when I should be shouting from the rooftops that I have made it through this horrible past six months and the five rounds of chemo. I really am grateful and that’s what’s even more frustrating…. I want to get my life back I want to do chores, take care of my child and really and truly want to go back to work…… but how can I do these things when the simple walk up the driveway to get the mail breaks me down
I’ve read so many things about creating a new normal, and the changes that patients go through after treatment…… all I am asking is to have my life back, however shitty it was before cancer it was better than this pitiful existence I am left with now………………………..

Friday, May 7, 2010

Cross Creek and my Granddaddy.....


With my Gradaddy being sick I have spent sometime reminiscing in our family history and wanted to share our "fifteen minutes of fame"
Back when my Grandaddy was a very little boy our family owned a house in Cross Creek Fla. Next door lived a woman named Marjorie Kinnan Rawlings.
She was an author of the fairly well known books Cross Creek and The
Yearling.
She was what we would consider a pioneer woman... living alone in the untame swamp off the river Styx where the water is tar black from the cypress trees.
I have been to Cross Creek several times. This is where we buried my Mom, my Grandmother and very soon my Grandfather. In her book Cross Creek she mentions a man named Boss Brice, who just so happened to be my great great? granfather.
In 1983 Mary Steenburgen starred as Marjorie in the movie Cross Creek I remember watching this movie as a child and thinking how cool it was that we had association with her.
Very soon now we will be traveling to Fla to wish my Granddaddy a peaceful passage to Heaven. We will be visiting the cemetary in Cross Creek and I am sure we will spend the day talking of our family's brush with fame.





Majorie's property is now a National historic landmark maintained by The Friends of Marjorie Kinnan Rawlings




This is me at the cemetary in Cross Creek circa 2000



Tuesday, April 27, 2010

Blueberry Muffins and a Girl

It is times like these where my child fills my heart to bursting and tears it out all at the same time. Sarai and I took some time out to make some muffins last night. I know what you're thinking 2/almost 3 year old and cooking?! Really tho she did a GREAT job. I measured out all the ingredients and let her put them into the mixing bowl...only one small spill and Momma always told me not to cry over spilled milk... She stirred until her lil arm got tired and then had fun trying to pick the blueberries out before I could get them mixed in. She giggle and laughed and exclaimed "Mommy I DID IT!" My heart just shatters to think that I might not be here to do these things with her.... these little silly things that most people don't think twice about; that some parents don't even bother doing with their kids.
Playing outside, blowing bubbles, playing dress up with my costume jewelry.... I try so hard to cram so much into my time with her because God forbid I don't know how much I have left.


I lost my Mom to breast cancer when I was 22. And that devastated me. To this day I find myself every so often laying in bed at night crying because I wish she was here. I wish she had been there for me when I got married, when I suffered my 4 miscarriages, when I finally had her only grandchild, and most recently when I was told I have Leukemia. I wish I could cry on her shoulder feel that love that only a mother can give.


This is why I fight. How could I allow my child to hurt the way I do. I cant let that happen. From the day she was conceived Sarai has been my life, my everything. I can not WILL not cause that precious baby any pain!!!


And so we make blueberry muffins and giggle and laugh. And pray.....for more times like these, many many many more.

Sunday, April 18, 2010

Quotable.....

"There is nothing, no circumstance, no trouble, no testing that can ever tough me until, first of all, it as come past God and past Christ, right through to me. If it has come that far, it has come with a great purpose."


Wanted to take a few moments to share some words of wisdom: I will probably revisit this post from time to time and add more but for tonight.....








"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11.1


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"Be very careful if you make a woman cry, because God counts her tears. The woman came out of a man's rib, not from his feeet to bee walked on, not from his head to be superior, but from his side to be equal! Under the arm to be protected, and next to the heart to be loved" Author Unknown. (stolen from Kela Sharpton's FB status)








"Whenever you find tears in your eyes, especially unexpected ones, it is well to pay close attention. Not only are they telling you the secret of who you are, but often God is speaking to you through them the mystery of where you have come from and where HE is leading you...."Author Unknown















"Cancer is a disease of the mind, body, and spirit.. A proactive and positive spirit will help the cancer warrior be a cancer survivor" Author Unknown (submitted by Natalie Jones)
"God is closer than your jugular vein is." translation from the Holy Koran submitted by my dear friend Marwan Aylouche




Surprise Saturday

Wow what a great day yesterday was. It really goes to show how far the little things people do can make such a huge difference in another's life.


It has been our standing arrangment that Patrick bring Sarai up to the hospital on Saturdays after she gets up from her nap. We usually eat some dinner and hang out in the atrium at the end of the Oncology ward.


Unfortunatly children arn't allowed on the cancer floor because there are so many neutropenic patients that the germies they carry could seriously effect any of the patients health status. It is for this reason also that Patrick doesnt bring Sarai to visit as much as I wish they could....


Anyway. At about 2pm I get a phone call from P just sounding like he wanted to chat... but then out of the blue he says "meet me in the atrium". I go down and behold there is all my family, P, Jess and Sarai and a huge bag from Outback. I have grown very fond of their Alice springs quesadillas (mmm my mouth is watering just thinking about it).


So even though I had just eaten lunch I had to have me some.


Sarai was amazingly well behaved yesterday, she spent a lot of time bein silly and playing with me tho she was very disturbed and aggitated about me having to wear a mask. To top it ALL off Patrick brought me my mail.




I got two packages and it was like Christmas morning!! One package was from my dear GRITS, Reid Anderson, she sent me the BEAUTIFUL scarf I am wearing in this photo and a ceramic angel that says "my there always be an angel by your side" it's so pretty I cant wait to hang it in my bedroom at home. The other is a hand made tote bag with goodies from the Lydia project. The tote and goodies came to me by way of a sweet lady I use to work with and her sister who volunteers with the project (I highly recomend if you know any women dealing with cancer that you check out the site they are doing an amazing thing!)

With all goodness yesterday I couldnt help but feel uplifted and strengthened! Really took the sting off the fact that I am STILL in the hospital and really ready to go home.

Some days are just so good you wish they'd never end!!

Wednesday, April 14, 2010

Laffy Taffy

I thought I'd take a moment and share with ya'll the "story" behind the laffy taffy . Most might not know that chemo has the ability to destroy the lining in your mouth much like it does with your stomach and hair folicals. Getting 5x the usual rate of chemo has led to a very uncomfortable condition of mouth sores, they are raw blister like spots that burn when in contact with food or water. Thus the suggestion is often made that hard candies are good in gift baskets for chemo patients... well what I have discovered is that sucking on the laffy taffy lasts MUCH longer than any hard candy i have ever come across. The laffy taffy actually coats the mouth with fruity flavor and keeps the irritation and burning to a minimum.

As a small 2nd bonus they do have jokes on them too. So just a moment of enlightenment and thank to Mr. Willy Wonka for his wonderful laffy taffy

Tuesday, April 13, 2010

Cabin fever to the Nth degree

So here we are at day 6 and I am climbing the walls to get out of here!! My counts are getting better but my blood work shows that I STILL have no neutrophils. I spent a little longer than usual talking to Dr. N tonight and I get so frustrated. I feel like every time I try to discuss Italicfuture treatment options the answers are always different. So I get confused and then I get mad and there is never anyone else there to play advocate for me to be able to remember what gets said. Dr N tonight made the statement that he believes I have been leukemic for years and that it most probably was the cause behind my miscarriages. He goes on to say that he feels my AML has been SO slow growing that a transplant might not be a good option for me. I just hate feeling like I am being jerked back and forth. And I know it's all bothering me more because I am bored out of my mind which allows me to get upset too easily

Please say a prayer.... God is not the author of confusion

One Hundred Days



A day of milestones... It's officially been 100 days since I received my dignosis.
Such a beautiful new blog to commemorate this new phase, the being WELL phase.
I have sat here all day trying to decide what to write; what sort of introductions should be made but instead I will say I have kept up with a care page for some time. I enjoy the care page but I have grown bold and with the help of some beloved ladies thought I'd try my hand at a big girl blog!!
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