- H


Ebony is an amazing woman. So strong. She is very guarded with her story and journey, but it needs to be told. I have always wanted to do everything I can to help my friends and Ebony and I have been friends since ICC daycare at age 3 years old. This is her rendition of her story.
While taking a shower something that was the size of a pebble a few weeks earlier was the size of a peach pit sticking out of my left breast. I swear they heard me holler 3 counties over. I knew.
I went to the doctor to confirm what I already knew. After a couple of biopsies I was told- you have 'Garden variety cancer'. I looked at my Doctor like a damned fool. I asked if that was even really a thing?
Luckily I got assigned a new Doctor. This one looked at my family history and told me he thought there was more to this cancer.
He thought I had a genetic form of cancer. But to find out, the blood testing was about $3000- nobody took insurance. I'm screwed. But apparently he knew someone that knew someone.....and got me the test. I honestly think the man paid for the test himself.
I amd told it is Stage 2 breast cancer...genetic breast cancer.
Options - 1) Mastectomy but the cancer would come back. 2) Double mastectomy, hysterectomy, chemo, and radiation. I will give you time to think about it. He stood up and I was like- whoa there! I didn't need time to think. If I went home and dwelled on this I would make the wrong decision. I told him ' we havin a fire sale. Everything gotsta go. Sign me up right now.
I never cried in his office. It was hard, but I wasn't going to be that person.
Now, when I got to the car, I lost my damn mind. I went and bought a box o' wine and a fifth of Jack. It was time to batten down the hatches and deal with this bs.
I tried to start chemo in August 2011, But my hemoglobin had other ideas, my platelets were so low I had to get a blood transfusion before I could do anything. My Oncologist looked at me and said ' you are moving by sheer will power. You must have a strong heart. Uh....yeah...
Chemo. I gotta tell you.....it's Satan in an IV bag. Life was not easy whatsoever. But I made it through. Then I had a double mastectomy. Absolutely horrible, radiation 5 days a week for 8 weeks. Hysterectomy- check.
That's right? I was told to expect some form of heart issues in 5-10 years. Hmmmm......5 months later my heart took a nose dive.
Congestive Heart Failure. End stage heart failure because of chemo. Icing on the Satan cake. I had to get and AICD, which kept me going for a bit. But, I was going downhill fast. I lost too much weight, couldn't get out of bed or clean my house. My fabulous doctor ( he is literally like a Transylvanian pimp) tells me about aide saving program I need to get into. But you cannot get into this program unless you have a 24/7 support system. The LVAD.....
My sister relocated from Florida to take care of me. I was in the hospital for the next 3 months. I was just so sick. There were complications along the way. For some reason my hemoglobin would drop. I mean I was low, and I had to go to my doctors in Chicago to fix it. During the 3 hour drive it dropped another 3 points.
Finally I stabilized. For a couple months. Then...... My blood started clotting....bad, oh so bad. Initially I went in mid November 2014 and they got it under control. But then in December.... My levels were through the roof. I needed to have the pump in my heart replaced.
I go to Chicago, my veins are pure shit, it just started out ridiculous. Had to have a central line put in. Then surgery. Made it through. So..... I am in CICU recovering beautifully. They wanted to move me to the Cardiac floor. Then, it happened.
I am literally crossing the threshold to my room on the Cardiac floor when my chest started vibrating. Alarms start going off. I felt like pure ass. Luckily all off surgeons and doctors were still there. Over the next hour-ish..... they realize it is a mechanical malfunction.
The pump that they put in 24hrs ago was not playing by the rules. They needed to go back in and figure out the problem. Oh so very not good on any level. As it turns out the piece if equipment was faulty, just broken before it even got to me. Sooooo they had to put on. Completely different pump. That's two major open heart surgeries on less than 48 hours....(during Christmas).
I have had a few more incidents since then, but generally doing ok. I can't be listed until I am 5 years cancer free. I am pretty tired of having alien hardware coming out of my side.
I understand that the fight isn't over. But I refuse to be defined by my illnesses present and past..possibly future. The very idea of giving in or giving up pisses me off. This world is full of weird and beautiful things, I want to be one and or both of them. If I can pass any wisdom on, first of all- LISTEN TO YOUR BODY! If something ain't right..... Go to the doctor, don't blow off your health like you do an ex. And, be fabulous, do not be the typical cancer patient, heart patient, diabetes, fibro patient. There is nothing better than not being defined by your illness.
As for me, I will push to be put on the transplant list, I will be an asshole on my day to day life. I will keep a weathered eye on the horizon and generally kick ass. What are y'all gonna do..?
Here are some facts of her life:
-15 medications 2-3 times day
-Chicago doctor trips every other month
-living on disability and a small link amount
-her sister is a caregiver paid for by the state (which they may decide to cut from the budget)
-she cannot go anywhere alone with her lvad
-she cannot work
-her lvad quits - Ebony quits
- 5 medications she takes are not covered and they can cost up to $20-30 each
-she can be placed on the heart transplant list in a year and a half, but there is no guarantee of a transplant
-when she is admitted for any reason in Chicago, Ellen has meals to get and often has to pay to stay
Here is a link to learn about an lvad
http://www.mylvad.com/content/what-lvad-how-does-it-work
Ebony has come a long way, but this journey is far from over. This is where this fundraiser comes in. The money raised will help with tranportation, medications, expenses with traveling to doctors, and general day to day expenses. With the uncertainty of the state paying caregivers, the concern is very real. Anything you can give will make a big difference.
Ebony is not a fan of asking for help so let's look at this as a way for us just to show her how much we care for her, love her, and admire her strength!!!
While taking a shower something that was the size of a pebble a few weeks earlier was the size of a peach pit sticking out of my left breast. I swear they heard me holler 3 counties over. I knew.
I went to the doctor to confirm what I already knew. After a couple of biopsies I was told- you have 'Garden variety cancer'. I looked at my Doctor like a damned fool. I asked if that was even really a thing?
Luckily I got assigned a new Doctor. This one looked at my family history and told me he thought there was more to this cancer.
He thought I had a genetic form of cancer. But to find out, the blood testing was about $3000- nobody took insurance. I'm screwed. But apparently he knew someone that knew someone.....and got me the test. I honestly think the man paid for the test himself.
I amd told it is Stage 2 breast cancer...genetic breast cancer.
Options - 1) Mastectomy but the cancer would come back. 2) Double mastectomy, hysterectomy, chemo, and radiation. I will give you time to think about it. He stood up and I was like- whoa there! I didn't need time to think. If I went home and dwelled on this I would make the wrong decision. I told him ' we havin a fire sale. Everything gotsta go. Sign me up right now.
I never cried in his office. It was hard, but I wasn't going to be that person.
Now, when I got to the car, I lost my damn mind. I went and bought a box o' wine and a fifth of Jack. It was time to batten down the hatches and deal with this bs.
I tried to start chemo in August 2011, But my hemoglobin had other ideas, my platelets were so low I had to get a blood transfusion before I could do anything. My Oncologist looked at me and said ' you are moving by sheer will power. You must have a strong heart. Uh....yeah...
Chemo. I gotta tell you.....it's Satan in an IV bag. Life was not easy whatsoever. But I made it through. Then I had a double mastectomy. Absolutely horrible, radiation 5 days a week for 8 weeks. Hysterectomy- check.
That's right? I was told to expect some form of heart issues in 5-10 years. Hmmmm......5 months later my heart took a nose dive.
Congestive Heart Failure. End stage heart failure because of chemo. Icing on the Satan cake. I had to get and AICD, which kept me going for a bit. But, I was going downhill fast. I lost too much weight, couldn't get out of bed or clean my house. My fabulous doctor ( he is literally like a Transylvanian pimp) tells me about aide saving program I need to get into. But you cannot get into this program unless you have a 24/7 support system. The LVAD.....
My sister relocated from Florida to take care of me. I was in the hospital for the next 3 months. I was just so sick. There were complications along the way. For some reason my hemoglobin would drop. I mean I was low, and I had to go to my doctors in Chicago to fix it. During the 3 hour drive it dropped another 3 points.
Finally I stabilized. For a couple months. Then...... My blood started clotting....bad, oh so bad. Initially I went in mid November 2014 and they got it under control. But then in December.... My levels were through the roof. I needed to have the pump in my heart replaced.
I go to Chicago, my veins are pure shit, it just started out ridiculous. Had to have a central line put in. Then surgery. Made it through. So..... I am in CICU recovering beautifully. They wanted to move me to the Cardiac floor. Then, it happened.
I am literally crossing the threshold to my room on the Cardiac floor when my chest started vibrating. Alarms start going off. I felt like pure ass. Luckily all off surgeons and doctors were still there. Over the next hour-ish..... they realize it is a mechanical malfunction.
The pump that they put in 24hrs ago was not playing by the rules. They needed to go back in and figure out the problem. Oh so very not good on any level. As it turns out the piece if equipment was faulty, just broken before it even got to me. Sooooo they had to put on. Completely different pump. That's two major open heart surgeries on less than 48 hours....(during Christmas).
I have had a few more incidents since then, but generally doing ok. I can't be listed until I am 5 years cancer free. I am pretty tired of having alien hardware coming out of my side.
I understand that the fight isn't over. But I refuse to be defined by my illnesses present and past..possibly future. The very idea of giving in or giving up pisses me off. This world is full of weird and beautiful things, I want to be one and or both of them. If I can pass any wisdom on, first of all- LISTEN TO YOUR BODY! If something ain't right..... Go to the doctor, don't blow off your health like you do an ex. And, be fabulous, do not be the typical cancer patient, heart patient, diabetes, fibro patient. There is nothing better than not being defined by your illness.
As for me, I will push to be put on the transplant list, I will be an asshole on my day to day life. I will keep a weathered eye on the horizon and generally kick ass. What are y'all gonna do..?
Here are some facts of her life:
-15 medications 2-3 times day
-Chicago doctor trips every other month
-living on disability and a small link amount
-her sister is a caregiver paid for by the state (which they may decide to cut from the budget)
-she cannot go anywhere alone with her lvad
-she cannot work
-her lvad quits - Ebony quits
- 5 medications she takes are not covered and they can cost up to $20-30 each
-she can be placed on the heart transplant list in a year and a half, but there is no guarantee of a transplant
-when she is admitted for any reason in Chicago, Ellen has meals to get and often has to pay to stay
Here is a link to learn about an lvad
http://www.mylvad.com/content/what-lvad-how-does-it-work
Ebony has come a long way, but this journey is far from over. This is where this fundraiser comes in. The money raised will help with tranportation, medications, expenses with traveling to doctors, and general day to day expenses. With the uncertainty of the state paying caregivers, the concern is very real. Anything you can give will make a big difference.
Ebony is not a fan of asking for help so let's look at this as a way for us just to show her how much we care for her, love her, and admire her strength!!!

