AML Round #2

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Wednesday, June 15, 2011

Remembering Lee Ann Lapsky (4/8/10)

Remembering Lee Ann Lapsky

I am at a loss for words. Steve and Lee have been passing friends of mine for many years but it's the last few months that have opened my eyes to what an amazing strong jewel miss Lee has been. She was dignosed with lung cancer last summer, I hadnt been a large part in their lives but by fate and grace I was able to spend a lot of time at the hospital fighting my battle while Lee was there fighting her's. The incredible strength and grace that Lee exhuded kept me going everyday. I am so very blessed to have been able to spend that time to get to know her. She, in her selflessness, joked and kidded with me about our bad hair days and all the crap cancer has thrown at us.

I know that she is in a peaceful place, and for that I am so grateful, she was in so very much pain. I just wish there was something I could do to bring more honor and acknoledgment to her fight.

Hold your loved ones tight, love them like there is no tomorrow and pray that just 1 person is spared the pain this woman went through.

I will miss you my friend!!!

Saturday, June 11, 2011

Hair today gone tomorrow

I am so very frustrated with the hair situation right now.  When I was first dignosed with AML in Dec 09 I elected to shave my head... the thought of waking up every morning to shoulder length clasps of hair in my bed depressed me greatly, the thought of gobbs of down my back hair clogging up the shower still turns my stomach.  So I just got rid of it ALL, at the time I had a very one track mind and didnt think about donation tho through my recent readings they probably wouldnt have taken it anyway since I dyed my hair..... I had infact paid $100 for a wash cut, color, style, and wax.... what a waste of money ROFL.
So here I am on day 1 of my new induction chemo round and I really want to do something more productive with my hair this time......BUT I have searched and searched and searched I can not find a place that will take donations of shorter hair.  Mine is between 5"-7" depending on where, I have not cut a snip off of it since I shaved it that fateful day. 
This is my desire.  I want to cut it in some style of buzz cut, pretty short but not skin bald and then dye it some crazy color, I am not sure what yet but I am leaning towards orange since it's for leukemia awareness.... crazy I know that I just think it would be so fun and funny to show up at Emory like that.  DH has told me that if I do that he wont go out in public with me.... that party pooper

Monday, June 6, 2011

Bad news travels fast....

This was suspose to be my 1 year remission anniversary on June 2nd but things didnt go quite like that....

I am pretty sure that I have contacted just about everyone besided my kindergarden teacher and the next door neighbor I had when I was 3. But for those who keep up through this source I will share all the dark and devistating news of the week.

The short version is that I found out at 4pm Friday 6/3 that I have relapes and will be needing a bone marrow transplant after all......

The long version. Tho I have been suffering ups and downs with my health this past year things have been going pretty well. When I went for my monthly blood work in April Dr Nic noted and told me that my white count was somewhat low. He asked if I had been sick and tho I have many cronic issues I hadnt had any real illness, he shrugged it off and sure enough about a week later I got a sinus infection/ear infection cruddy stuff. So thinking that was the cause of the bad count we proceeded with my normal monthly appt. I went in on May 17th and my white count was even lower than before, to the point of being dangerously low now. He started to seem concerned and decided to have me come back in 2 weeks and be rechecked since it just wasnt making sense. Well on Tues May 31st I went in and things had just begun to bottom out, my WBC is below 2, my ANC is 0.5 (normal value is over 1000) and my Hem count which had maintained a steady 14.9 for 11 and 1/2 months was down to 10. Nic scheduled me for a STAT bone marrow biopsy on 6/1 which was miserable but not worth going into... I got the call last thing Friday that the results show that the AML has returned. A bone marrow biopsy after high dose chemo and possibly raditation is the only treatment... there are lots of decisions and plans to be made. I am not sure what source I will use to keep people updated but I will be with my computer throughout my new journey with the devil AML much love and prayers to all my beloved friends and family

Friday, June 3, 2011

Remembering Hailey....

This picture is very special to me, not only is a picture of one of the strongest most resilient women I have ever met (besides my Mom who died of breast cancer on her 51st birthday in 1998) but this is a picture of one of my guardian angels.
I have a very emotional story attached to this specific picture.  During my induction chemo in Dec of 09/ Jan of 2010 I met this amazing woman in the oncology ward at ARMC.  We had rooms across the hall from each other and on our good days we would visit, talk share stories of our families and daughters.  Her husband was one of those very special individuals that truly knows how to be a caregiver to this horrible disease, not only was he there for Hailey there were several times where his kindness was outstretched towards me.  A piece of pizza or a bag of candy his attention when so far toward the soothing of my hurting heart and spirit during one of the darkest times of my life thus far.
But that is not all.  2 very short days after I was released to come home after my induction chemo I found myself back in the ER with severe complications, neurological problems, unbelievable pain and discomfort that resulted in a partially delusional state.  After several hours in the ER they decided that I was too sick to return home and they admitted me back into the oncology ward.  Shortly after arriving in the room I noticed this picture of Hailey and James sitting on the wall in front of my bed... at the time my mind was not clear and some how I had convinced myself that she had gone on to Heaven and had left her image there to look over me.  I spent that whole night laying on my side shaking uncontrollably from the neurological side effects of the poison chemo staring at this picture of this beautiful amazing strong woman who had so touched my soul.  After much pain management and several hours of sleep I was finally able to articulate my concerns to the nurse to learn that Hailey had been released to go home a few hours before I had been admitted to the same room and she had simply forgotten her picture....that night forever changed me and over the next year and a half Haily and I spent several more visits in the oncology ward together and we both have had our highs and lows.... I am so very grief stricken to share that Heaven gained another angel this week....

Hailey Rochelle Gill of Jefferson, who was diagnosed in June 2008 with peripheral nerve sheath sarcoma, a rare cancer of the connective tissue that surrounds the nerves, died Saturday from complications of the disease at Athens Regional Medical Center. She was 32

You will forever live in the hearts of those who loved you... me included!

Wednesday, June 1, 2011

The ugly evil needle and the wait................

Our friends at WebMD tell us

A bone marrow biopsy removes a small amount of bone and a small amount of fluid and cells from inside the bone (bone marrow). A bone marrow aspiration removes only the marrow. These tests are often done to find the reason for many blood disorders and may be used to find out if cancer or infection has spread to the bone marrow.

Bone marrow aspiration removes a small amount of bone marrow fluid and cells through a needle put into a bone. The bone marrow fluid and cells are checked for problems with any of the blood cells made in the bone marrow. Cells can be checked for chromosome problems. Cultures can also be done to look for infection.

A bone marrow biopsy removes bone with the marrow inside to look at under a microscope. The aspiration (taking fluid) is usually done first, and then the biopsy.

And thanks to my wonderful disagreable bones I get the pleasure of doing a CT guided biopsy with Procedural sedation. This  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"

Unfortunatly in about 1/2 the times the medications used do not work for me and I end up in severe pain and "grinning and baring it while they hammer that needle was today......
and so the wait beings, every cancer patients least favorite time.... the waits are torture.

Tomorrow should be my 1 year anniversary of Remission...... wait......