Intro The pain and suffering that a patient with cancer goes through is astronomical. The pain not only effects you and the people around you mentally as well as physically. You would think it would be a crime to just live everyday life with no physical ailments, and just waste time. While there are people that suffer all around the world from a disease, yet their regular day to day doesn't stop. These people still have families, bills and everything else life throws them.
So with all that being said my question to you is why waste time? The irony of this situation is from the moment you were born you were pressed for time, because everyone that is born will suffer a death one way or another it's inevitable. So why do we always wait until we are under pressure, to start panicking acting as if we are going to change. I don't believe there is a person on earth that isn't a culprit of this, I actually believe it's human nature the extent is the issue. The involuntary function of living I think people can take too literal as well. Life can become an abyss and we can begin to drift so far that once many of us wake up we can no longer navigate back to the places that we once lost. But why? when we have so much fight so many gifts many of us do not know how great we are until something happens to us, well this Diaries intent is to uplift your minds as well as your thoughts as you empathize with some of our present and past situations. Notice I said empathize and not sympathize, because no one is asking you to feel sorry for us, we are simply asking for you to try to understand our plights. These are the stories of 8 remarkable individuals and there plights as they navigate to through Cancer and Multiple Sclerosis.
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Matt Samuels @daprince21 Brother’s Love January, 2011 The day that my Brother in law was diagnosed with Cancer is when I figured out I knew (Shit) about life and I was 24 years old. I was going to school in Chicago and my life was just beginning to get back on track. I play basketball, and up until this point I was coming from the lowest place that I had ever been in life. I am not an extremely emotional person, I am more logical than anything I am told, but basketball has always been the thing I have cared about the most, and for that for the last few years to be a train wreck, my life just wasn't that great. Before encountering the cancer of my brother, many would say that my circumstances were pretty rough. Outside of the normal black youth issues, friends getting killed mother and father hating each other and attempting to get passing grades so that I could play basketball life was pretty normal. I internalize most of my issues, but this one wasn't to be internalized this particular situation made the newspaper. I was a junior in high school playing basketball receiving letters and full scholarship offers to over 25 division one Universities, this all ended with a lawsuit between my mom and the school system as well as my coach at the time. Over a incident where my coach at the time gave me a drink that resulted to a 2 night stay in the hospital. Why is this relevant you ask? Because at the time I had just broke through my past, the story I just referenced turned into me having 0 scholarships because the coach called all his friends and advised them not to recruit me. So that to many would be the end of life, I almost began to admire myself for the persistence that I kept in order to get to this point. Now January 2011, I am in the midst of receiving division one scholarships, I am attending South Suburban Community College, and John Pigatti is running the life out of me. Along with the extreme running I have to pass 21 credits in a semester to take any scholarship that any school was offering. Upon failure I cannot attend. My brother at this time is living back at home in Maryland, and has been having night sweats along with tooth aches and some weight loss. Never being a big person to begin with along with having some dental problems we waived them off as some wisdom tooth problems until the night sweats continued. My mother would always comment on his weight as it continued to fluctuate, this would be alarming to normal people, but seeing as how his diet consisted of homed tuna fish, frozen pizzas, and flavored tea's and other sodas it wasn't that really alarming to us. Until one day my mother just continued to tell him to visit a doctor and he finally did, that was the moment we figured out he had Hodgkins Lymphoma. I was in school at the time it hit me hard, I honestly don't think I would've made it through those 21 credits as well as signing to a Division 1 University for basketball without his situation, his motivation was timely to say the least. And as I mentioned my situation was bad to a normal person here I am not being able to play in one game the entire season wanting a school to take a chance on me to play for them. But in my mind my brother was fighting cancer so how the hell could I complain. Well luckily I passed all those classes, graduated with my associates and accepted a full scholarship to Chicago State University for Basketball. This summer while I didn't know it until now, would be the most vital time of my life between James and I. My sister had got a house while I was at school, so when I came back I lived with her James and my nephew. James wasn't working and I was awarded the entire summer to stay home which never happens 2
when you play a sport. So that entire sumer I would take James to his Chemotherapy, Radiation and whatever else he had to do. I built admiration for him that you have to see to believe. Many days we would split the tasks of picking my nephew up from daycare, there would be times that I would tell him I will go get him, he would be exhausted from chemo yet still crawl up the steps throw a shirt on that boney back of his, and go and get his son. I remember the doctors changing his entire diet, and telling him to eat vegetables and fruits as well as to get exercise. But Chemo effects the way things taste, so the last thing you want when you can hardly keep food in your system would be some non cooked vegetables. That summer I will say this that't the coldest and hottest Iv'e ever been in my entire life, It's worst than your mother going thru menopause. All you would hear all day and night is (YALL NOT HOT) (YALL NOT COLD) Mind you James is the only one adjusting the temperature in the house. Several nights I would wake up out of my sleep hearing him throw up, I honestly have no idea what he was throwing up because he ate so rarely. Our medicine cabinet looked like the drug aisle at your local Walgreens or CVS I mean I couldn't even pronounce half of this stuff. And James would sleep all day long, to the point we had to get up and start taking walks between my workouts, to get him some fresh air, because he slept so much. One walk stands out the most, this walk is honestly when I remember saying I may have just found out what life is about, and to date that's when I learned one of my best life lessons. We must have walked the track for 2 hours it felt like, and he shared with me that he would beat cancer, but If he didn't he wanted me to take care of my sister and his son. He shared with me that I would get through all my obstacles in basketball, and become the person that I wanted to become, I shared with him do not live for my sister and my nephew live and survive for yourself. And I believe we both learned a lot that day, because I promised him that they would be ok regardless, we all wanted to see him recover. James shared with me that day that cancer can block your vision, many people want to be famous and rich and relevant, but the day you figure out that you have to fight that disease these things all become secondary. That was the day I figured out truly that life was the biggest accomplishment there is, and living it the right way for the longest amount of time and being productive is the best gift that you can give yourself or anyone. Because not one time did james say to me I never made it to this place or this country. I don't have any money in the bank or that ferrari. He simply said I want to live for your sister and my son, and that was the realist statement that I had ever heard. After this summer I left and went to school and had one of my best years on and off the court, because I was motivated and purpose driven, and I prayed that everytime I left that he would still be there when I returned. And Although he couldn't make a game everytime I played on Tv he would watch and send me inspirational text messages. I returned from Chicago State with my degree that next year and James was still fighting for his life. At this point tumors had grown and the Cancer had travelled little did we know. And for graduate school I decided to go to California to finish my last year of basketball, before I left, we had a fun filled summer of moving I hate moving. James and I seemed to be professional movers at this point my sister always had us moving, I remember me and James almost Fought one night because he continued to press furniture on his cathiture he hadn't eaten and we had been moving all day long. I know what your thinking that's stupid he has cancer right? But you text and drive at high speeds, anyways he sat down after I told him we were gonna fight. And we eventually got through the moving later the next day. This summer seemed to go by so fast for some reason, and going into my first year of grad school as I left james was still fighting. By 3
this time my sister was missing a lot of work, she had changed his medical insurance from Maryland to DC then DC didn't want to cover his expenses it was back to Maryland. I noticed the toll it was taking on her from the phone calls, and here I am just chasing my dream while there dreams are falling apart, it just felt selfish of me. But whenever I called or facetime he would be all smiles and tell me he watched me play and keep doing my thing. By this time my sister was well researched into cancer and there was a walk coming up called Light the Night. I knew that this cancer was real and he was battling the least I could do was make this event. So my sister coordinated it, made up some T-Shirts and sent me the samples of the shirts, and I told her that I would make it, but she never told James. So I fly back he's trying to figure out why I am home, and I tell him it's because of his walk. James couldn't believe it he actually while in the room with my sister started crying because he didn't know how to feel about me flying from California just for his walk. This night I will never forget James my sister and I drove down to the walk late as usual, everyone was there before us and as we arrived none of his friends made it. This isn't any disrespect to anyone but that's bullshit. Anyways we get out there and I think all the lights and balloons and people overwhelmed my brother because he finally knew he wasn't alone in this fight, it was a great feeling to look at his amazement and share that with him. We left the walk went and got some food and a movie and just stayed up talking until we all fell asleep. Backtracking just to enlighten you about that night he walked and he was overly cold complained about his back all night so i gave him my hood he was tired as well but that was normal, the next diagnosis we figured out he had 2 tumors on his spine thats why his back was hurting the entire night. I flew back once more, and this time James was very weak he slept most of the time I was there. There was one thing that got him out of bed and gave my mother my sister and him one of the best laughs we ever shared together, and that was the Bus driver uppercut, I'm sorry but that was just our sense of humor I ran upstairs and made him come downstairs we watched it together we all laughed for five minutes, I mean that video gave him life literally. I suck with dates so these are just scattered thoughts and memories, but I went back to California and I really had a heavy heart that entire year. we facetimed and continued texting, until my sister called me one night and said that James died last night for 5 seconds during his transplant but he came back to life, but the doctors said they don't know. we just sat there on the phone together and vowed to just fight for each other and fight for him, my sister is my bestfriend so hearing how she sounded and what James was going thru just made time sit still. A few weeks go by and I got the phone call I never wanted to receive, I was laying in my bed, and I would always count the time difference from California to Maryland. I answered and my sister tells me that James died. must have been one of our shortest conversations ever, we both got off the phone distraught. I also felt like I failed him because I was not having my best year and to blame him would be an excuse it just was a awful year, and I see why because It would be the year that he passed away 2013 was the WORST!!!!!!!!!! Upon his death it was the most indifferent feeling that I have ever had, I was coming home and he wouldn't be there, I immediately just began to think about conversations and my nephew and sister that I told him I would take care of. And as much as I wanted him here he fought harder than I ever faught for anything in life and I was proud and respected him to the fullest. And in my mind (HE WON) he won because where he is there is no sickness he left me here to take care of my sister and nephew, and he left us with the inspiration to bring you this book and so much more. He left me understanding that life will never be about me again, or selfish goals and things that wont matter 4
once you get them. He left me understanding that you make your mark in this world by infecting someone with life itself the true meaning of it. I feel that every person's story you will read will infect your brain drive understanding and motivation. The motivation to do the unthinkable, there are some amazing people that you are about to hear from. Understand that James time spent here was not in vein, and every story that you are going to read will and has not ended the way that his has. Nonetheless I have a 6 year old nephew names Maximus Orion Watts that I help raise and without James infecting my mind with his drive his fight his spirit I would not be able to take care of his most prized possession. And these people and this Diary would never be able to infect these great authors that you are about to hear from. I say infect because we are affected by cancer, but through the memory of James Rudolph Watts I am forever Infected by cancer infected with the disease of (LIFE). I can only hope that every reader that we touch is effected by these words as much as Cancer has Infected these authors.
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Jermaine & Catron Turner @Jpixphoto There are cancer cells living within each one of us. Aside from the obvious sources, what ignites those cells to become malignant is a marvel. I recall the day my mother, Patricia Moore was diagnosed with a brain tumor very clear. I often wonder what caused the tumor, how long she had been living with it and if it had been discovered sooner would she have survived.
The journey began December 26th 2010 the day after Christmas; she went to the emergency room feeling lightheaded and weak. She was quickly diagnosed with a rapidly growing cancerous brain tumor. Little did we know the next year and a half of her life and ours would be filled with a whirlwind of emotions, anxiety, and difficult decisions.
Illness not only affects the inhabitant but those around them as well. After being laid off a few months prior to her diagnosis my mother and younger sister had come to live with my family of five. Although there was an adjustment blending families; with 3 small children, it was nice to have her help. With the lay off she was the loss of health insurance accompanied by huge financial bills.
Prior to the surgery to remove her tumor my mother was positive and her completely trusted that God would heal. The effects of brain surgery can vary from person to person. None of us was prepared for the outcome. After surgery, my mother was slightly paralyzed on the right side of her body. My mother had always been a doer. She had slowed down later in life but she took pride in her ability to lend a hand. Waking up without the ability to move her limbs was disheartening. After her hospital stay she quickly went to rehab to regain mobility.
After several months it was time for my mother to come home but nothing can prepare you for the level of care, patience, and commitment required to care for a loved one that is ill. The medications made my mother experience so many emotions and the most dominant was anger. They also caused her to develop diabetes; so on top of the cancer, she was now diabetic. She was scared of the unknown and so were we in many ways. She was making progress but once she started chemotherapy she became weak and feared trying to walk. 6
I feel with the loss of mobility also went her hope that she would ever be able to walk again. She spent the majority of time in her room in the bed. She had regular visits with the doctor but eventually she required the help of the paramedics to get in and out of the house. Eventually the tumor reemerged and the little faith that she held on to quickly faded and the belief that she would get well eventually went with it.
I’ve always believed that our faith or belief in a thing good or bad will manifest itself in that which we believe. I feel like my mom gave in to the cancer. She lost her fight.
To say that living with cancer is difficult would be an understatement. My mother now needed around the clock care. Her anger put a strain on our relationship as well as my relationship with my wife. My mother was not only contentious with me but with my wife as well. I was torn. My allegiance was always to my wife but my mom was dying. I begin to avoid visiting her; there was so much tension in my home. I was unaware at the time but the growing tumor was causing her to be mean and violent both in words and in her actions. The tension in my home grew to a point that it was intolerable and my kids were being affected. Eventually in December of 2011 my mother and sister moved out but things were hardly back to normal. I loved my mom but our relationship had been strained and the quality of my family life damaged but not beyond repair. It’s amazing how one life occurrence can cause so much pain. Amazingly with that pain comes the power to heal.
After a few months, my mother took quite ill. The tumor was causing her to have strokes quite often and in due course she had to be admitted to the hospital. They finally told us that there was nothing more they could do. The tumor had not only reemerged but had now taken over both sides of her brain and doubled in size. She was sent to a nursing home with around the clock care. We visited often and like all families we continued to love each other even though there had been turmoil. She was still our mother and we knew that inevitably she would pass and my wife and I wanted to be by her side. There had been years of memorable moments and we made the decision to cling to those. It’s compelling how significant things happen on the most unforgettable days. On Mother’s Day of 2012 I went to visit my mom. I found her lying in the bed with food from the previous day that had not been chewed sitting in her mouth. She had another stroke, which was common with brain tumors, and sadly no one had been to check on her since the Saturday prior. Unfortunately, state medical insurance does not afford you with the best care. Needless to say I was livid and grieved. That night I had my mother moved to the local hospital. The next several weeks were the most intense. Decisions had to be made that I honestly wasn’t prepared for. My mother had made me her health care agent and I was now responsible for her life. Should I keep her on life support? Hospice or not? I never realized the agonizing power of having someone else’s life in your hands. I knew that moving her to the 7
hospice meant that death was near. Or should I selfishly keep her on life support? The brain tumor had taken over and my mother was in a state of unconsciousness. She would never waken from that last stroke. I made the very distressing choice to move her to the hospice.
After a few days at the hospice on May 27, 2012, a representative contacted me to let me know my mother wasn’t breathing normally and most likely wouldn’t make it through the night. They encouraged me to come in to say goodbye and notify my family should they want to make a final visit. While I knew it was coming, I didn’t want to hear it. I decided not to go to the hospice. I had seen my mother living and I wanted to remember her that way. I couldn’t say goodbye knowing she couldn’t hear me. Her brain could no longer comprehend. She wasn’t there.
Death is difficult to put it mildly. Within eleven years, I had lost four of the closest people to me. My grandmother, grandfather, brother, and mother. But this time things were different. I would be required to arrange and plan a viewing and funeral, make decisions about clothing and burial and deal with family issues and lack of finances. To my dismay, my mother didn’t have life insurance so there was a lot to deal with and this added more stress to my family.
To God be the glory, we made it work. I am blessed to say that people supported my family and me and chipped in to assist wherever they could.
We buried Patricia Jeanette Mastin-Moore on June 7, 2012. I regretted not speaking at my brother’s funeral so I decided that I wouldn’t live with the same regret this time. I spoke about the cancer we all have living within us, not just the cells but also the destructive and poisonous behaviors, attitudes, bitterness and un-forgiveness we live with everyday. I was thankful to have the opportunity.
We miss her incredibly and I think of her almost daily but a lot of healing came through the sadness; many family relationships healed. It’s so odd how the most unfortunate trials can birth amazing healing, blessing and change in the lives of others. It’s how we view the trial that counts.
Would I change anything? I can’t say for sure, my trial has blessed so many others. My story has been used in so many ways to help others deal with their own lives, in-law relationships, and sicknesses. Through great trials comes the greatest development. The most important lesson that I have learned is to trust God in every circumstance. Lots of times we go through 8
different trials and it doesn't make any sense at all. God is always in control and he will never leave us. “A gem cannot be polished without friction, nor a man perfected without trials.� - Lucius Annaeus Seneca
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Bernice Samuels @Bnice28 Peace in the Storm remember wiping my tears and taking to my little brother outside of the emergency room telling him that we were built for this. This fight this is what we do we are Samuels all I know how to do is fight. But deep down in my gut I was terrified. I walked back into the emergency room to go back and see Bea and the stares that I was was getting where crazy. My thought were was i talking that loud ? Was my wig tilted ? I mean what could it be? The police officer on duty called two nurses over and was blocking the entrance telling me that I need to have a seat they were getting a wheel chair for me and everything would be ok. I had blood all over my face and a cut in my hand about one inch wide and two inches deep. I had dropped blood all on these people floor and had no clue. I didn't feel a thing not cold not pain nothing. And while on the phone with my brother hype I was wiping my face and pacing. So at this point I look like a complete nut case and a beat and batter women mixed together. About 20 mins before that I walked outside with no jacket in January in Maryland and slide to the ground and screamed and cried because I just found out that the love of my life had cancer lymphoma they said nodular s something. All I could do was think about that movie Powder and how thin and bald he would be.
I am getting ahead of my self. I am the caretaker. Bernice my momma calls me Bernie my friends call me Beanz or B. Before all this drama began I was a 26 year old mother of one amazing son named Maximus engaged to the love of my life James juice watts together for 11 years he was all I knew. Masters degree working on my doctorate hubby there had just began his locksmithing business and life was good. Wait getting this guy to commit and set a date after all those years man my life was great everything was finally starting to workout. In October 2010 James who has always been thin started to loose weight but wasn't doing anything different. I looked for a secret gym pass and everything. Nothing. In November He was complaining joint pain and was becoming a nightmare to sleep with constantly complaining about being cold or hot and sweating. After months of begging him to go to the doctor. I put my foot down took off work and drug him to the minute Clinic. Filled out all of his paper work and told him we are getting to the bottom of this. Period. After a hour long wait and a "extensive" 15 minutes evaluation the doctor wanted to schedule test for lupus. Lupus? Aww man. He walked out of that office as if they told him he had 24 hours to live max. I grabbed his shoulder , turned him around aggressively, and looked him in his eye and said no matter what they come back with I will never leave you side. He looked at me and said I know and smiled. After 5 test coming back clearing him from lupus had everything else we could find on google to test for we were in the clear. Cue the praise dance music. But not so fast. Now he asked me to feel his neck he had a lump in it. It's now January and he is holding on to his clean bill of health given by a few doctors. But something still seemed off what is that lump about? So I tricked him to ride with me to take my best-friend Nikkia to the doctors who was with child at the time and she had a minor scare and needed moral support. While 10
signing her in I signed him into we were going to figure out what that lump was all about. Got him. Best friend is fine no issues she was just being pregnant and dramatic. Bea on the other hand had be given a gown and was being seen by a few doctors. They start telling him he would be transferred for further testing. But they thought it was lime diseases. One of the doctors pulled me to the side and said its probably not like disease I it's more than likely cancer. But he wanted me to keep it quite until I get and actual diagnose he gave me his card and told me to follow up with him so that he could know if he was correct. I agreed and off to the next hospital we go in the. James was so belligerent he didn't want to go in the ambulance if I could ride with him. He wanted me near him 24/7. After taking him down I drove in the car directly behind and he talked to me on the phone the entire ride. Next day First surgery of many biopsy of the neck lump. Which left my baby with a mean scar on his neck. I came back Hodgkin's lymphoma nodular sclerosing. Next was staging it was present I his lung and liver Stage 4 out the gate. But the doctor told me if you could pick a cancer he pick a great one to have his prognosis was good eight months of ABDV once every two weeks and he could be in full remission. Ok cool. Takes a deep. I can do eight months in my sleep. Broke the news to everyone. Cards candy you name it for one week. Super support. That type of support was never seen again at that rate. Here started all the decision port placement immediate chemo was needed. We were trying for another baby we had recently had a miscarriage. The first thing we asked for was sperm preservation. The doctors responds was there is no time. He could die. If we don't treat him right away. That just didn't make sense to me he didn't look like he was dying at all. He said We could try again a year after he completes treatment his sperm count should return to normal. Should is the key word. I told the doctor we should drink 8 glasses of water a day how many have you had ? His response was minimal he stressed the seriousness of his illness and immediate action was needed. So we moved forward with treatment. I would do anything to save my Bea life. So the anything Began I google cancer cured natural and bought everything. Seaweed, dead sea salt, vitamin, organic food only, stopped using the microwave, my dad brought in some drink from South America back on a plane which is beyond me how he got threw customs but that is a whole different story. I was all in I shaved my head with him. Took out sugars in my diet. I read about cancer ever day for hours at a time. I just knew as long a as I do my part we were going to beat this thing. He was doing awesome six month into treatment he relapses the cancer spreads and create a legion on his liver. I B lined to his oncologist office. It was about to go down. I screamed on this man so bad. What happened to a good cancer to have? 8 months and life would be back to normal? Hhmm? Mr I love to write chemo prescriptions? I was devastated. My baby was crawling up the stairs to get around the house. I never cried in front if him. I would always cry to myself at night time when his meds would kick in and I knew he couldn't hear me. I didn't want him to think he was losing. I couldn't have him think that. They recommends ICE treatment to put him in remission and a stem cell transplant. He now had and aggressive form of cancer that wasn't responsive to the normal treatment. But ICE is the real
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This is me... By Greg Collins Jr. @GMERIQ Greg Collins Jr. before...
This is me: Gregory Collins Jr., husband, father, son, and musician/artist dedicated to sharing my faith in God to encourage many. I am currently 27 years old battling cancer and fighting for my life. It’s crazy how quickly things can change. But before i get into all that let’s start from the beginning. At age 25 I was living life the way I thought I was supposed to. Working 3 jobs to support my wife and children, serving in the church, devoting all other time to my music ministry and spending time with friends and family was life for me. I was a healthy young man who loved to play basketball, and I must say I had skills. I have always been a fan of music and and the arts, and was working on developing my ministry through hip-hop music. On stage I was GMeriq, and at home I was Daddy. Sounds pretty normal right?! At this point my wife, who was also my highschool sweetheart, and I had been married 3 years and had 2 children of our own Jae’Ci ,3, and Jaden,1, so it’s safe to say we had our hands full. Our oldest child, Abbie, who is biologically my wife’s younger sister (that’s another story) was 13 and consumed with her school and friends. Life was good. We had a beautiful family and were devoted to our children. We enjoyed everyday with each other, and looked forward most to our vacations and trips as a family. The beach was our happy place and our children loved going every year! Don’t you ever think about life and wish you could freeze moments in time? Well, that’s where we were. We had it all together, or at least it appeared that way from the outside looking in. In actuality we were far from having it all together, but we had our love and each other which was enough. We had no idea what was very shortly to come.
My Fighter Story: In October 2011 I just started a new job and celebrated my son Jaden’s first birthday when I started to begin noticing I was losing weight rapidly. Here I was 250 pounds two months ago, and now around this time I weighed 230 pounds. Undoubtedly I could have used to lose a few pounds, and I even wanted to but I wasn’t doing anything in effort to shed pounds. I was enjoying compliments by my friends and family about my weight loss, so I thought nothing negative about it.I hadn’t worked out in forever, still over ate and drank sodas, but at 25 who would have thought anything of it. I continued on with life as normal. 13
Fast forward to December 27th 2011, this date I remember vividly. I was on break at work at Chick-fil-A and it was hard to even eat because of an excruciating headache. I had suffered from headaches in the past, but never anything like this. I laid my head down and began to cry until a coworker and my manager came and asked was I ok. I replied,”I might need to go to the hospital.” She asked me if I was ok to drive and I said yes,and then left speeding to the hospital where my wife is a nurse in the ER. My wifes heart dropped once she learned I was there to be seen. Once back to see the doctor he explained he was going to do a CT scan of my head, and only because the headache was so severe he would check basic blood work as well.The CT scan showed a severe sinus infection which explained the headache. Praise God a round of pretty potent antibiotics and I should be good to go. Then the blood results came out and the mystery began. Anemia was found from the blood work, and my liver enzymes were elevated. Huh?! was my first response, and the okay what does that have to do with a sinus infection followed. The physician did not have an easy answer. He began talking to me about my feelings and life as of recent. I assured him I was not known to be anemic before and I did not drink any alcohol. After an extensive conversation the weight loss was mentioned and the doctor was very concerned. So concerned in fact that I was now worried, and felt silly that I had not thought anything about it. On the scale that day at the hospital I was down to 212Lbs. Dr. Lorenzo said he wanted to do a CT scan of my abdomen to see if there was any bleeding internally. He said it could wait but needed to be done soon, so we opted to get it done that same night. I still remember so vividly Dr. Lorenzo walking in with a confused facial expression and saying “Well, I wish I could shine more light on the situation, but I am actually more confused now.” He went on to explain that my spleen was enlarged, but no other obvious abnormalities that would explain the anemia. After that he recommended I go see a ENT, gastroenterologist and hemotologist and dig a little deeper. So I left that day taking antibiotics for a known sinus infection and unknowingly beginning the investigation that would end up changing my life forever. I remember being so confused, but still the ‘C word’ never crossed my mind. Starting that next week my wife made a plethora of appointments to see different specialists. I remember feeling so weird going to all these doctors, because up to this point in my life I had only been for routine stuff. First on the list was the ENT, Dr. Avadino who informed us the sinus infection although slightly improved was still present and prescribed additional stronger antibiotics. Ok, check one off the list. Now on to the gastro doc. Dr Jalil recommended that I have a endoscopy and colonoscopy as that was the only way to assure no bleeding was present. Long story short, that biopsy result came back inconclusive with no evidence of bleeding. Moving on to the hemotologist Dr. Sidhu ordered a massive amount of bloodwork to check a number of things that I didn’t even understand. After that was resulted she recommend a bone marrow biopsy for further investigation. I had what would be my first of many bone marrow biopsies at Dekalb Medical Center. Nice place, terrible 14
procedure. Surprisingly enough, that was inconclusive and showed no evidence of disease, but that my iron absorption was off- or something like that. All I knew was I was anemic for some unknown reason and my B-12 was low, so my wife was giving me weekly injections of B-12 to replace it. WOW- what a ride. At this point I was more confused than ever and my wife was making herself sick with worry. Meanwhile I was still losing weight, and I began feeling very fatigued and having spells of weakness so bad infact that it was affecting my ability to work or do anything for long periods of time. On top off all that I had developed an itchy skin rash all over my legs and torso that landed me in a dermatologist office twice, and it wasn’t until later at our second opinion that it was diagnosed as Ichythiosis. It was now April and still no answers. Dr. Sidhu continued weekly bloodwork to check my blood counts and to find a trend but that was to no avail. Her only recommendation was wait 6 months or so and repeat the CT scan of my abdomen. I remember one night being so weak my wife had to help me out of the bed. I was admitted to the hospital that night given blood and released. I was told this should help with my weakness, but I honestly couldn’t tell much of a difference and the next week I was back down again. It didn’t take long before my wife said ok enough is enough and the next thing I knew she had me at Emory for a second opinion. I remember her saying something is wrong, and she was not comfortable waiting 6 more months to figure it out. So… This is me- now June at Emory University Hospital in Atlanta sitting in yet another doctor's office. What am I doing here I kept thinking. I was numb to it all at this point- just going through the motions as I was told. At the first appointment they did basic bloodwork and explained they would do a full body CT scan. About 3 days after the CT scan my wife received a call while at work from the oncologist herself stating the CT scan showed I had multiple enlarged lymph nodes in my chest and abdomen. While she could not confirm a diagnosis, she told my wife of the possibility of cancer and said she was setting up an appointment for a biopsy. My wife, now hysterical at work, came home and gave me the news. Crushed.- is how I felt in one word. My world was turning upside down and I was just along for the ride. Why hadn’t they found out sooner, why didn’t the other doctors do these tests, why didn’t we come here first, how was is so easy for them to tell us…. Feeling hopeless, helpless, and scared. What now?, I thought. By now my wife and I knew something was wrong, but cancer. Really?! What about the kids, my wife, my family- all i could think about was death, and we didn’t even have a definitive diagnosis yet. Through all of this mess so far i had prayed more than i have ever prayed before. I was being encouraged by my wife and family, but it was hard to shake the doubt and fear that remained. No one knew, no one understood, no one could relate, i felt alone. Why me?, why now?, just why?. I prayed for peace and comfort but had a hard time accepting those feelings. It was almost like i was comfortable in my fear, i know that may sound crazy, but it was so 15
hard to let my guard down and relax knowing that at any moment at any appointment i could hear something else that would add to the mess. It was like i was just building a wall, so no matter what they said i wouldn’t be affected because i was already beating myself down. Anxiety began to set in, and it sucked, it all just sucked. The next few weeks were a blur. Needless to say I had the biopsy which confirmed stage 3 Hodgkins Lymphoma. I then had yet another bone marrow biopsy, and a port placed and was preparing to start chemotherapy. I found myself in Dr. Flowers office, a lymphoma specialist at Emory, office discussing the type of chemotherapy that was needed and all my options. I was told no radiation was needed. I remember someone saying, “Well, if you’re gonna have cancer you picked a good one to have.” Nothing like a little healthcare humor. They were trying to be encouraging saying that my prognosis was good, curable even! There was a little gap in time between biopsy and diagnosis that my family and I were able to go on vacation as planned to Myrtle Beach. I remember standing next to my wife on the roof top pool as the kids were playing and just looking at the beach and sky. In that moment I felt a sense of clarity, and something just came over me and I knew all was going to be well. For just that second life was almost normal again. Still scared to death from what was about to come we enjoyed our vacation as much as possible and came home to continue the journey. At the end of July 2012 I started a chemo regimen called ABVD. I was told about how I was expected to feel weak, and lose all my hair. They said the treatment would last 6-8 months depending on how the mid-way PET scan showed that I had responded. My wife and I went every other Wednesday to the Winship Cancer Institute clinic infusion center for about 6 hours worth of waiting and chemo. The nurses were very nice and aside from the yucky chemo feeling everything was going fairly smoothly. My grandmother-in-law would watch the kids all day on those Wednesdays, and the kids looked forward to going and playing with their cousin. Those days were always long, but my wife and I tried to make the best of it because it was time we got to spend with just each other. We would watch movies and talk about old times during chemotherapy. I did have some of the side effects from the chemo i was forewarned about the nausea was hit or miss, but the weakness and fatigue was definitely noticeable. I didn’t want my hair to fall out, so I went and cut it all off. One of my best friends, my dad, and my father-in-law all shaved their heads too! But even throughout the treatment my hair gradually grew back, and stayed. I remember sleeping, A LOT. It was rough for about the first week after chemo and it seemed like right about when I got to feeling a little better it was time to go back. My mid-way PET scan showed good response, and Dr. Flowers said I would only need 6 months of therapy not 8. Finally, I thought, some good news. I pushed through the last few months of treatment with a newfound hope. I completed my last cycle of chemo in December, the week before 16
Christmas. Thank God! Now that it was all behind me it was time to just pray it all worked and continue with all my follow up appointments. Finally the day came for my follow up appointment. I went for the PET scan, and i can remember leaving thinking “OK, this is it.” That next week seemed like the longest week ever, but I decided to live as normally as I could until I received the results the following week. When I received the results from the PET scan I immediately began to cry. I read the interpretation on the report over and over, “No evidence of disease.” Yep! I did it, I had officially beat cancer. I couldn’t fight the tears. I remember thinking what now. This all had starnegly become a new norm for me- hospitals, waiting rooms and doctors offices. It seemed like now it was going to be an adjustment being normal again. I looked over to my wife and said,”What now Mama?” And I will never forget her reply,”We live.” And that is exactly what i did. I enjoyed Christmas that year in a whole new way. I celebrated my birthday the first week in January and it was the best one yet. Just a small celebration with my little family meant the world. Birthdays had a whole new meaning now. My kids were excited that daddy was happy, but i'm not sure if they will ever really understand the depth of it all. I began to work on my music heavily putting together a project called "The Treatment" based on my experience being diagnosed and throughout treatment. Months went by and I started going back to work,exercising,and playing basketball regularly. I was feeling almost back to normal.I had to go every few months for follow up scans and as that became less frequent i began thinking of the future putting all things cancer behind me. I wasn’t due for another PET scan until early the next year, but my wife and I began noticing small subtle changes in my skin and energy level around November that were concerning. My wife called the doctor and expressed her concerns and asked if the scan could just be moved up. It was not as easy as that sounds. There was a lot of back and forth, but finally they were able to schedule the appointment in December. So, here we are again I thought. Back to the hurry, worry and wait game with the doctors. My wife seemed so concerned, and that scared me. I think deep down she knew something was wrong, but I know she was praying for the best. Long story short there was a series of snow and ice storms (yes in Ga, and trust me the whole state shuts down) that kept pushing my appointment back. The PET scan was finally done in January after what seemed like an eternity of waiting. The next appointment was almost as devastating as the first. Surely enough there was noted enlarged lymph nodes and the possibility again for cancer. Which means yet another biopsy. We had been down this road before, and everyone kept saying it will all be easier this time because you know what to expect, but we found the opposite to be true. I had developed a deeper 17
hate for the drugs and procedures now which made me fear them even more this time. The biopsy was completed and confirmed recurrent Hodgkins Lymphoma. Crushedwas the word I used to describe my feelings after my initial diagnosis, but I am not sure if there is even a word in the english language that can come close to describing how I felt. Devastated is putting it lightly, deranged isn’t even close, I was defeated. Being told I have cancer again wasn't in my plans. I was thinking of the future, not cancer.And all too familiar came back the anxiety, fear and doubt that had before been lifted, thinking to myself here we go again. I wasn't sure how to prepare for this,because this was going to be totally different than what I had been through the first time. I began researching all my options in an attempt to mentally prepare myself. Dr. Flowers told me his plan and I was so overwhelmed to say the least. He told me I would need ‘salvage chemotherapy’ for a few cycles, then stem cell harvest, then high dose chemotherapy followed by stem cell transplantation and recovery. Wow, i thought. After all I had already been through, now this. Then i learned that while receiving this salvage chemotherapy I was going to have to be admitted into the hospital. What?!, Why?. What about the kids? I wasn't thinking I would be admitted in the hospital for a few days.How do I really explain to my now five and three year olds that Daddy is sick and has to go away for a couple of days. To date that was probably the hardest part. The plan was to start with three sets of chemotherapy known as I.C.E. to put me in remission and then proceed as tolerated with further treatment ultimately leading to a stem cell transplant. I was admitted in Emory hospital for my first cycle of chemo which would require my wife and I to stay in the hospital for about four days every other week. Our first admission was pretty rough because I was so scared. Chemo and all the yuck feelings that come along with it was bad enough, but I was missing my kids like crazy. Luckily we had either FaceTime or Skype to talk with them and let them see that daddy was ok. It got extremely hard just being there,the heavy build up of sadness and anxiety was always something that followed me.It also didnt help that the room we first had was view of a brick wall. I was already feeling trapped in the entire situation, now it seemed as if I were really trapped in this room. I hated everything about what was going on. It became hard to even try to be happy. Even communication between my family and I became a struggle. I just wanted to shut down and get it over. I really hated the food,I hated the smell of the soap, its crazy how simple things trigger such grandiose emotions. I started to pray, and read my bible and seek God’s face. I wasn’t necessarily looking for answers to why this all was happening, but I knew I needed something. I would pray, “Lord, just give me what I need.” As the admissions went on it seemed to get a little easier. Although, during my second admission I had what I think was a panic attack about it all and I literally slept the rest of the time. Luckily after my last cycle I was able to leave early and go to Tennessee to see Abbie at her color guard competition.I 18
was discharged at 11 o'clock at night and I was just so ready to go. My wife packed up everything and we shot the road for a 2 hour drive. Abbie didn't know we were coming, and the look on her face the next day at the competition when she saw me in my mask was priceless. The things we do for our kids. We left immediately after her performance and headed home to see the babies. Around the time we arrived home it didn't feel the same.Don't get me wrong I was so ready to be home, but the anxiety followed me to the one place I thought I could get away from it. Before I knew it I was pacing back-andforth around the house like I had something to do or somewhere to go and I was going to be late. My wife kept telling me just to calm down and enjoy being home, but it was so hard because once anxiety takes over it's like you're in panic mode, feels like you're suffocating. I was constantly reminded of a verse in Philippians that says” Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God;and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.” As I begin to pray and trust God I started to feel so much better. It took quite some time, but praise God it was getting better. Not to mention a three-year-old and a five-year-old keeping me laughing which helped a whole lot too. Your own children are sometimes the best medicine. OK, so the ‘salvage chemotherapy’ was done, and the mid-way PET scan showed i was in remission. Thank you Jesus. I then began to take shots everyday to help my body produce stem cells in preparation for stem cell harvesting. I was lucky in that I would be able to use my own stem cells. My wife gave me the shots once a day, then twice a day for a few days. Those shots made me feel terrible. They caused severe bone pain and gave me horrible headaches. Finally the time came to collect my own stem cells and store them for later. I went in to the hospital early in the morning and prepared to collect the cells. The process was surprisingly easy, but it took pretty much all day. I laid down in a hospital bed and was hooked up to this big machine that did all the work. Once finished I remember looking at this small bag of red, thin-looking fluid and thinking, wow- this is going to save my life huh?! They assured me I would see these cells again, and while they looked small they were in fact very important. The cells were sent to be tested and froze and I went home. The charge nurse on that unit called me that night and told me I had collected 4.69 million cells, and the doctor wanted 4-5 million so I did not have to come back the next day. Whew! The next 2 weeks I got to have a ‘break’. No appointments, no infusions, no lab tests, just time at home to rest, recover, and prepare for the long road ahead. For the next couple weeks I was trying to prepare my family and myself before going into the hospital for nearly a month. During those weeks preparing my wife and I focused on what would make the stay in the hospital a little more tolerable. Rachel printing out pictures that way we could hang them around the room. We bought soap 19
from Bath and Body Works,air fresheners,Rachel cooked meals that way I wouldn't have to eat the hospital food that much. Rachel made a schedule of who would take care of our kids while we were gone and who would be with me when she wasn't there,so i wouldn't ever have to be alone. Then the big day came, Saturday, April 26th I remember the morning when the charge nurse called and it was time for me to report the hospital. I asked could we come later that day rather than sooner but she needed me to be there immediately. I just felt like I didn't have enough time to prepare... MYSELF. The kids understood Daddy was going to be gone for a while, but they were going to visit their grandparents and cousins so they were excited. Getting ready that morning was so hard. Just felt like I was heading to the electric chair or something. It usually takes about 35-45 minutes to get to the hospital, but for some reason that ride felt like 5 minutes.As I was going up to the elevator to the 8th floor I began to blink a few times and pinch myself just to make sure I wasn't dreaming. Room 808 was the room I was admitted into. First thing I thought of was Kanye West's "808's & Heartbreak".That was pretty much the vibe i was in. I was given a drug called Kepivance for three days prior to admission that gave me a white coating around my mouth to prevent ulcers. This made it real difficult to eat because food just didn't taste like anything and the feeling it gave my tongue made me gag. I started my second regimen that night called BEAM. Out of the three regimens of ABVD,ICE, and BEAM I would say BEAM gave me the worst feeling of just wanting to lay around and do nothing. I lost most of my hair with the ICE regimen, but BEAM took everything else off,eyebrows, eyelashes etc. My head was extremely cold at night, so I usually wore a beanie but I tried to keep it off for when the nurse took my temperature. I walked everyday to keep my legs moving and circulation going. I walked usually two to three miles a day on the 8th floor hallways.21 laps around the nurses station equaled one mile. My wife and I would walk my laps together listening to music and talking about our next vacation..I thought about food a lot because I couldn't really taste at the time. I thought about basketball and how i couldn’t wait to be able to really play again. I thought about my kids a lot wondering if they’re thinking about me.I thought about what direction God would take my music or if I would even continue to do music.I knew the main focus for me was to just rest and get better which I was frequently reminded by wife. I shouldn't be in such a rush- I was told, and I need to take it slow as possible and everything would be back to normal eventually. My wife decorated the room very nicely with pictures everywhere, and I mean everywhere. She wanted me to not be able to look anywhere in the room and not remember my purpose for being there. The days would drag, but it was nice when I was able to go outside and sit on the benches and watch the people pass by. Fatigue, nausea, decreased appetite and diarrhea would come, but the medication helped with my symptom management. The chemotherapy went fairly smoothly, and the nurses and doctors would all comment on how well I was doing. Finally, I can do something right I would think. We met some great people that 20
were patients on the floor as well. You come to almost developing a second family, and you begin to realize that this is all much bigger than you. I would check on my new friends daily and try to be an encouragement to others. I found it to be therapeutic for me to pray for and speak life into other patients, and they received the words with open hearts and minds. We were all hungry for hope and looking for the same thing- peace and healing. May 2nd was the day I was going to have my transplant, and it came quicker than I expected. I was told I would be given a bunch of meds prior to the infusion of stem cells that would make me sleep for most the day. The time came and the meds were given and I can recall feeling very loopy. I never fell asleep, because I didn’t want to miss anything. The infusion was pretty uneventful. I received 2 bags of the cells and then the recovery process began. Now finally I was taken off of the maintenance IV fluids which meant I could do my laps without my pole. Small things can really make a huge difference. Each day was different. Some days were pretty good and others were terrible, but I always had someone there (95% of the time my wife) to encourage me to keep going. My wife and I started a T-Shirt Campaign called "No One Fights Alone". The shirts stated HEal CANcer on the front. We got a great response from the campaign which was unbelievable, watching the campaign grow helped the time pass in the hospital. Our goal was to raise awareness and spread the gospel. It’s amazing how a basic shirt design could bless someone and open so many conversations and opportunities for people to share their testimony. People really are searching for something greater, no matter their situation. Being in the hospital for a while you miss out on a lot.My daughters Pre-K graduation was one of those things I wish I could have been around for. I remember talking to her on FaceTime wiping away my tears and apologizing that I couldn't be there. Luckily my wife went and took video so I could see my little girl walk across that stage. I may have had to miss that, but only in effort to be there for all her graduation to come. Eventually the day came for my discharge! It was such a emotioned filled day. I was so glad to be able to get that trifusion line out. I was ecstatic to be going home, but also sad because i knew some of my friends had to stay and i had become very close with the staff. I walked one final lap around the unit and then said my goodbyes, and with tears in my eyes I was escorted by wheelchair to the front door. As my wife drove away I looked back to see the hospital building in the rear view and was speechless. It was done. Everything I had been so worried about was over and I was going home! Now, I honestly didn’t physically feel that great, but my pure joy to be able to go home overshadowed that. My kids met me at home with a huge banner that said welcome home Daddy! The look on my babies faces when they saw me home was surreal. They were completely happy. 21
I am currently 26 days post transplant and I have found it best to take one day at a time and deal with things as they come. The fatigue is undeniable, but the nausea and my appetite have gotten better. I’ve been told by my doctors that the fatigue will get better with time. I can not wait for that day, because I am going crazy not being able to play basketball. My outlook on life has undoubtedly changed. Things that I used to worry about are insignificant now. I enjoy every moment with the kids and don’t sweat the small stuff. I have seen and experienced first hand how precious life is, and how quickly things can change. I have a firm belief that I am healed, and I am looking forward to celebrating my complete remission after my final PET scan that will be in August. Now as I sit at home and look back on everything I am overwhelmed. It has been a long time coming, and I am changed forever. Honestly, I still have bad days (who doesn’t), but now after all I have been through even my bad days are good days comparatively. This whole cancer experience has taken a lot from me, but it no longer has a hold on me. It will forever be a part of me, but that is all- just a part. So I guess this is me now… Greg Collins Jr. husband, father, son, musician/artist artist, and now SURVIVOR!
No One Fights Alone: We live in a broken world where sickness, sadness, fear and desperation surround us. Many of us live in fear of the future,or hopelessly in our own reality. I can relate to each of these situations, but I’m excited to be able to share how my story changed to one of Hope and Healing through my redeemer Jesus.I have been at my lowest I’ve ever been battling sickness and doubt. I realized I could not do this alone, but I was encouraged to know that I did not have to.I remember someone told me that iron sharpens iron and we all need to hold each other accountable. Cancer has the ability to connect people on such a level that is often only shared with fellow survivors. Take advantage of that and help others.Through prayer and devotion God revealed to me his almighty power and his anointed purpose for my life during all this. I encourage all the readers of my story to pray. It amazing what miracles will be revealed and how much clarity you will receive. There is endless hope and peace in the presence of Jesus. Never give up, and never stop fighting. There is light at the end of the tunnel; although it may be very faint at times. I/we may never know the purpose behind our 22
cancer, illness, or grief, but after conquering all of these things it is clear that your life does have a purpose. Pursue it with unwavering faith. I know I couldn't have gone through this without my family and friends.The support I received from my job was awesome.My Generation Church family were always loving and eager to help. They always asked if we needed anything, sometimes they did things without asking.I really appreciate my parents and in- laws for always helping out with the kids and sending them back to us spoiled.I would like to thank my closest friends who not only encouraged me on the daily, but also helped in ways you couldn't imagine. Each card sent, message received, meal prepared, and prayer sent up was appreciated and accepted with love. It all mattered, and it all made a difference.What more can I say to my wife,I believe whatever I say is going to be an understatement. You've been there from the beginning.You've seen me laugh, you've seen cry and upset.We've prayed and praised together, asking God for peace.You are there whether I wake up at home or in the hospital,always right by my side the whole time.I don't know what I would do without you, I love you more and more each day.You reassure me everyday that I'm Not Fighting Alone. I sometimes think thank you is not enough. Words could never express, nor money ever repay for the amount love i felt from you all. Thank you, and i love you all dearly!
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Open Letter: Dear Greg, I know you've been feeling like you've been going through hell lately, just hold on, you can't give up.This pain is only temporary,God's promise is forever.Stop feeling that you have to put everything on your shoulders.The bible says in Luke 18:27 “No chance at all,” Jesus said, “if you think you can pull it off by yourself. Every chance in the world if you trust God to do it.” Stop feeling that this is all your fault, there is nothing I mean nothing that you could've done to prevent this.This is life.You are not fighting alone, you all your family and friends are there with you.Most importantly God wants your pain,put all your trust in him,and he will make all things new.Find peace and joy in Christ,He is your strength. Matthew 11:28-30 says..Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.” God has given you a great gift to be light in dark places.Keep encouraging and uplifting others with your spirit and through your music. Many souls are out there that need to hear about Gods grace and mercy.Regardless of your circumstances you have a purpose.Keep loving on your lovely wife and kids, that's what it's all about. Keep pouring into their lives and let them warm your heart.Don't take anything for granted, take advantage of every opportunity given to you. Now Live...... Self
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Candyce Brown @dycelovesu Hi my name is Candace, and I am a colon-rectal cancer fighter/survivor. It all started March 2012 when I found out I was expecting my 3rd son. My pregnancy was going really great till about 17 weeks, I went in for a routine ultrasound, and the ultrasound tech called my perinatologist immediately. What they saw was crazy... It was a round circular 'thing' that covered almost the whole screen, initially the doctor thought it was on my ovaries, so he decided to go ahead and schedule a laparoscopic procedure. The emotions ran high for what I was feeling, surgery? At 17 weeks? I went in and got the procedure, I was numbed from the waist down and heard the surgeons around me chatting, they couldn't find it... I felt angry, like you guys really opened me up and couldn't find the mass that was big as day on the screen... I stayed in the hospital for 3 days recovering, just to get a follow up ultrasound... The mass was even bigger. This time my perinatologist ordered a MRI to see exactly where this thing was sitting, before they did anything. I proceeded to get the MRI and found out I had a mass that was sitting on my rectum, next to my sacrum. Which was posterior to my spine. This explained why I couldn't shit for months.. I thought it was the iron pills, that I had to take as a supplement or maybe it was just pregnancy... After they got the results from the MRI. They put me on hospital bedrest and attempted to do an aspiration biopsy... The radiologist literally stuck a needle in my ass and drained the mass... I remember seeing the fluid in viles after it was collected and taken to pathology... Now the waiting began, my pregnancy was progressing but so was the mass... It was harder to sit, I was experiencing excruciating back pains... All the doctors did was dope me up on dilaudid while I was pregnant.. 2mg every 2 hours... No more.. Definitely no less. Now I was scared that my son was going to have narcotic withdrawals. The sleepless night and a drain hanging out of my ass... This was my pregnancy lifestyle. So pathology comes back and my doctor said, I'm sorry. It seems as though the mass was malignant... MALIGNANT? Really? How in the hell can I have rectal cancer? I'm young and pregnant... No way... I couldn't grasp the whole idea of this... It was just too much for me to handle... I cried and cried and asked what was next? Was my son going to be okay? My husband wanted to know staging and treatment options, but me, I just wanted out. The oncologist decided to do aspirations to keep the mass sustained, and since it was early, surgery would be after I had my son. I thought about this, like is the cancer going to spread, and like any other person would think, how long do I have before I die? So I lived with this monster for awhile, I eventually gave birth, and the fun began. After I gave birth, I felt fatigue and my symptoms were crazy, no more constipation, it was the frequency to go and not feel finished, bloody stools... And PAIN PAIN PAIN. I went to the ER in February 2013 and explained my symptoms. I was then admitted, and scheduled for a colonoscopy and surgery that same week. The colonoscopy showed polyps so the cancer now moved to my colon.. I was then floored... I wanted the doctors to do something and to do something NOW.... I was only 29. I had a 2 month old baby... Was I going to die from cancer? The day after the colonoscopy I was set up for surgery... Surgery was a bitch. It was supposed to be a 3 hour procedure, it turned into 8, the surgeon said he had to really fight deep to get this mass... And it was hell to get it out... Recovering was crazy, i had a bag, and drains... I had post surgery illeus meaning my intestines were in shock and just stopped working... I started to have respiratory issues, I mean it was nasty!!! I ended up getting another PET scan during my stay to see if there was any trace of the disease, the oncologist came in and said that my PET scan was clean they got it all! I was overjoyed.. I mean being in the hospital for a whole month and a half on contact isolation, fighting a disease that was trying to kill you, is indeed a victory!!! He said but your treatment isn't over. I ordered radiation therapy for you. For 9 weeks... Oh no?! Really? Now my body will be exposed to radiation? I was angry... But still ecstatic that I beat it!!! I ended up doing treatment and felt better... But I did have internal burns in my body from it... Radiation was terrible, I was nauseated all the time, vomiting everywhere... The oncologist said that my dosage was so high that it may even damaged my ovaries?!!! Like really? All this new innovative shit, is now taking my womanhood?! I finished treatment and went on into remission.... January 2014 I was on a flight and I really started feeling rectal pressure, I am back constipated and I'm wondering what may be going on. I ended my trip and went to my doctor right away, he sent me to the hospital right away for a CT
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scan... And guess what the mass was back and with a friend... A mass that is now formed in my uterus... I cried and cried... I wondered why my doctor didn't do an aggressive approach... I had a biopsy scheduled in Feb and the radiologist biopsied the rectal mass, and the results were again sent to pathology... I was scheduled for another PET scan.. Another rodeo, but this time I was angry.... I also found out that I'm pregnant... So it seems as though that this is dĂŠjĂ vu... Another pregnancy... But double the cancer. Since the most aggressive moving mass is in my uterus, the pregnancy is having a hard time growing. I am now... Months later being seen at a world renowned cancer hospital... Surgery and treatment plans are in place.. But the pregnancy isn't going so good... My fear of what I felt almost 2 years ago is haunting me trifold. So here we go again.
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Brittany Johnson (CoCo Nicole) – Fighter (@wutscocodoin)
Phuck Cancer! I’m Phighting!
Life before Cancer In order for you to learn from my story you’d have to first know how my life was prior to cancer. This could happen to any ordinary person. There is no particular age, race, or gender. Cancer doesn’t have a favorite type, it happens randomly and spontaneously. Before Hodgkin’s Lymphoma I lived an exciting life. I have a 7-year old healthy son, a full-time job, my own house and just purchased a new vehicle to be able to travel with my little man. Making money working, taking care of him and having fun making music consumed all of my time but I loved everything about it! I was blessed with great family, good friends and an exciting social life. Hard working, dependable, independent and positive is how I would best describe myself.
Performing in Huntington, WV - 2011
December 25, 2013
My first encounter with cancer was one year and a half before I received my diagnoses. It was a tough experience but another example of just how spontaneous cancer can be. On March 12, 2012 my stepfather went in for a routine physical exam. 30 minutes into the exam the doctor found that he had been living with lung cancer for quite some time and needed immediate treatment. Unfortunately, treatment wasn’t enough to stop the spread of the disease and within that month we watched as cancer took a huge toll on his life. It hit our family like a ton of bricks. On April 13, 2012 my stepfather, Charles T. Crawford lost his life. It’s a feeling that still, and always will, brings tears to my eyes. When you love someone so much and look up to them as the strongest person you know in life, nothing can prepare you for seeing them pass away so suddenly. I hated everything about cancer and until now I always related it to death and heartache.
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My late stepfather singing to me on my 25th Birthday! (R.I.P. CTC)
C-Day (Being diagnosed) st
December 26, 2013 – My Mother’s 51 birthday! I had plans on having dinner with her and friends to celebrate after my usual 8-hour work shift. I had some discomfort in my right shoulder and arm all day long but nothing out of the ordinary. I had been living with this pain nearly two months but just didn’t have the time to take off work and have it looked at. In my mind, I lay on that side when I sleep so it couldn’t be anything but a pulled muscle that would work itself out in time. Looking back, it was more than discomfort and I should’ve never ignored the signs my body was sending me. I also grew more tired within those two months I was living with the discomfort. I remember being so restless during the day that I would drive home on my lunch break just to sleep for 30 minutes, sometimes dozing off at my desk. The warning signs were so slight that they were easily mistaken as simply just tiredness from the way I lived life, always busy on the go. Most working single mothers with goals and aspirations should easily relate to this. It was nearing the end of the work day and I began getting shooting pains from my shoulder to my chest area. This is when I began to worry. I sat silently in my chair and started thinking of everything I had st been experiencing in the past two months and thought, for the 1 time, all of my symptoms may be related. I asked myself if there was anything I was missing? I noticed the shoulder and arm discomfort, I noticed the tiredness but what else was there? Well, there was an annoying cough and shortness of breath when I would talk or practice my music for long periods of time. I didn’t pay it much mind either but it was almost like I didn’t have enough breath in me for me to continue as usual without stopping to cough. Then there were the shooting pains from the shoulder that had been troubling me for so long. By this time I’m freaking out at everything I had been ignoring and jump on the internet to Google my symptom; which, by the way, was the dumbest thing I could’ve done! Lol! I must’ve diagnosed myself with everything under the sun before I said, “Brittany, log off and just go to the ER after work!” At this time a co-worker walked by and saw the puzzled look on my face. He asked if everything was ok and I said honestly I don’t know. I told him what I had been experiencing and he agreed that I should probably go get it checked out after my shift. In my mind I had it narrowed down to pneumonia or a simple chest cold.
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I called my Aunt Renee to have her pick up my son from daycare while I got checked out at the hospital. My family knew nothing about what I had been experiencing because I didn’t feel it was severe. I then called my mother to tell her my plans and that I would meet her at her favorite restaurant after being released. I was certain it would take 2 hours max. Upon checking into the ER and letting them know my symptoms they immediately began running tests but after every one they would sit me back out in the waiting area. After nearly 3 hours and the friend that came with me needing to get home to her baby my patience started running thin and I was infuriated at the fact that I was missing my mother’s birthday. She called my phone and heard the frustration in my voice; I would’ve walked out of that door had she not stopped me. Cancelling her birthday plans her and a close friend came to sit with me. Shortly after that is when I got called back to a room. From there…my world was turned upside down at age 27 and the next 7 days were a blur. “We noticed cloudiness in your x-ray.” (ER doctor) “Ok, so that’s significant with pneumonia right? Will I be able to get released tonight and take medication from home?” (Me) “You’re right, it is, but there’s more. You also have a mass on the right side of your chest pushing against your shoulder and chest cavity causing it to appear rather large. This is what is causing the pain you are feeling in your shoulder and arm, the mass is pressing against nerves that are affecting the feeling in that arm. I’m sorry but we’re going to have to admit you for further testing.” (ER doctor) “Ok so what does this mean? Can it be removed?” (Me) “We won’t be sure until we do a biopsy on the mass and know exactly what we are dealing with. I’ve scheduled the biopsy for tomorrow morning and then we’ll go from there. I’m sorry.” (ER doc) The door closes and I’m left puzzled. My mom and her friend are staring at me telling me it’ll all be fine and my only reaction was to cry. I was scared, I was confused, I wanted my son and to just lay in my bed at home! My mother held me as I cried for what seemed like forever. I had a million questions and no one to ask who could relate. The nurses kept coming in to check on me but I didn’t want to be bothered, I wanted to cry and be left alone. How was this “mass” growing in me and I had no clue! Who could I blame?
Image of active tumor behind my breast bone. 12-26-13
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December 27, 2013 – Upon being admitted I was immediately hooked up to an IV to have fluids administered. They started me out on morphine and Dilaudid for the pain in my shoulder which seemed to intensify once I learned that there was a major problem growing inside of me. I couldn’t get comfortable at all, my mind was clouded with thoughts but the meds made it a lot easier to fall asleep. I was put on a liquid diet until all of the testing was completed that day. At 6 a.m. my mother and I were awaken by the nurses so that I could be wheeled off for biopsy. Not sure of the name but the medication they gave me before my biopsy put me in a twilight state. I remember seeing them doing the procedure and feeling the pressure but I felt no pain at all. One thing about it, they made sure I never felt any pain. When I look at pictures of how much weight I lost and my time in the hospital, it’s all clouded because majority of the time I was high off of the meds they kept me on. It all happened too fast for me to comprehend what was going on in that state of mind. The “C” word never once came to mind when I heard I had a mass. I think my family thought of it but kept their thoughts to themselves and conversation about it outside of my room in order to keep me at peace. th
December 31, 2013 – It has now been four days that I’ve been stuck at this hospital. I missed my sons 7 th birthday on the 29 ; I’m missing all of the New Year’s Eve parties and those new Michael Kors heels in my closet my boyfriend bought me to wear with the perfect New Years dress! I’m pissed, livid and I want answers! Every nurse that entered my room I begged to leave. I was told the doctor would be in soon to inform me of the results. My room was filled with family and my closest friends. Finally at about 6 p.m. in walks a team of four people and they looked like they meant business. I asked a few people to leave the room but kept my closest family members present. Surprisingly I wasn’t nervous because I was still confident that it wasn’t serious and they’d be releasing me. The doctor proceeded to introduce himself and inform me that the tumor in my chest had active cancer cells. He said the type of cancer I have is called Hodgkin’s Lymphoma. I would have to undergo chemotherapy and possibly radiation but it is the most curable form of cancer there is. Everybody’s eyes were stuck on me while he was speaking and I just remember staring at him like I was in a dream. He asked if I had any questions and my only one was, “Where do we begin, I’m going to fight and beat this!” He then explained the process, told me he would need me to stay in the hospital for a few more days and from there I would begin chemotherapy, 6 cycles. After talking a few more minutes, he shook my hand, smiled and left the room. I was happy to finally know what was going on inside of me but scared as hell of what was about to take place. I hugged my mother, hugged my father, hugged my aunt and broke down in tears! Happy New Year Britt…2014…cheers!
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December 29, 2013
My mother, brother, sister and I during my hospital stay. Right by
January 1, 2014 – On this day I had a CT scan. I was given some liquid in a Gatorade bottle that I was told to drink fast one hour before my scan. The liquid was disgusting! It tasted like metal and I had to hold my nose getting it down. I also had a mega scan taken of my heart to make sure it was pumping at a high enough percentage to begin chemo the following week. January 2, 2014 – Two days after diagnoses I was informed that I had the option of getting what they called a Power Port inserted surgically into my chest. This would allow them to draw blood and give me medication a lot easier than through an IV. At this point I agreed to whatever would make my 6 months easiest. During the Power Port procedure I was completely put to sleep. I didn’t feel one bit of it and had no pain upon waking up. They also took bone marrow from my hip that they tested to get an estimate of how long I had cancer. It revealed that I had been living with it approximately 3 months. Explains why the discomfort in my shoulder started that fall. My body was trying to warn me a long time ago I just didn’t listen. I couldn’t blame anyone but myself. January 3, 2014 – Eight days later I was discharged from the hospital. I was given strict orders to be off work, stay in the house out of public places where there would be a lot of people and wear a surgical mask at all times to avoid any illness that would interfere with my treatment plan. I went from staying busy and being out all the time to being confined. I absolutely hated it. I was sent home on Percocet to take for pain, Xanax for anxiety, Zoloft for anxiety and depression, Compazine for nausea and vomiting and Lactulose for constipation caused from the pain meds. I lost a total of 18 pounds and went from wearing a size 9 to a size 3. I couldn’t look in the mirror. I felt like a completely different person.
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Cancer Resumed Chemotherapy began on January 8, 2014. I started out on the ABVD regimen. Meaning the chemicals Adriamycin, Bleomycin, Vinblastine and Dacarbazine were administered each treatment. My doctor ordered me to go 6 cycles. Once every two weeks for a total of 6 months. 1 cycle was equal to two treatments so technically I’d have to have 12 treatments total. The day after every treatment I would have to go back in for what they called a “Booster Shot”. This was given to boost my white blood cell count. I was told this would make my bones ache and to take Claritin allergy medication to help with the aching st two days before chemo and five days after on top of all of the other meds. I could hardly keep up. The 1 treatment knocked me completely on my ass. I couldn’t eat, I couldn’t get comfortable, I was in pain and irritated. I remember my mind felt blank. It’s hard to describe but you almost feel dead inside. The tears rolled down my cheeks as it was hard to even know what I wanted to eat or drink. My mom would ask me what I wanted, what I was feeling and if I was in pain and I’d just stare at her crying. I didn’t know! I was literally dead inside. For five days after treatment she tried to force me to eat and get out of bed. I th continued to lose weight and after just one treatment felt like letting go. It was on that 5 day that my best friend showed up, opened my blinds and said, “Get up! You are going to fight. I’m going to rearrange your room to make it more comfortable, wash and do your hair, help you get dressed and we are going to eat a meal together!” It was at that point in life that I realized I had something to live for. I couldn’t let go and give up. It wasn’t an option. She gave me hope and made me feel alive that day and I am forever grateful. Throughout chemotherapy I experienced nausea, night sweats, constipation, fatigue, vomiting, cramps and sometimes stomach pain upon walking that would bend me over and have me grabbing the closest thing to me for stability. Luckily I had great family and good friends to hold me up during my fight. I got used to the side effects after a while and it became like second nature. I’d do things around the house, shower and keep my son occupied while fighting through the pain. I made a promise to myself after that st 1 treatment that I would maintain life as normal as possible so that my son would never worry. I wasn’t able to work and was denied social security although I was told by my social worker at the hospital it was guaranteed I’d have the income while I was battling cancer. Bills quickly began piling up so I took matters into my own hands and used money from my income tax return to invest in having t-shirts made to sale during my fight. See I was always used to making my own money, having little to no help and didn’t have anyone I knew who survived cancer to ask for advice. I didn’t know of websites such as GoFundMe.com or other sites designed to help people raise money so I did what I had to do and it made me stronger st along the way. On March 11, 2014 I had my 1 full body scan since December 26, 2013. Halfway through and after just 6 chemotherapy treatments my doctor informed me that there were NO active cancer cells and my tumor had shrunk tremendously. He made the decision that all I had to do was 2 more treatments and he would stop chemotherapy. Nothing but God, the feeling I felt at that moment in time was out of this world! I have since then completed my last two rounds and was blessed on April 24, 2014 to be finished with chemotherapy. The same family and friends were present, along side of the amazing nursing staff that helped me the whole way through, as I rang the victory bell symbolizing my fight was just about over! I still have 15 treatments of radiation to complete but finally, the hardest part is over!
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My son & I! Ringing the bell of completion together!
My oncologist & I the last day of chemotherapy!
March 11, 2013 – The day I received my negative scan results!
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Special Thanks: Most importantly I’d like to thank God for choosing me to endure everything I’ve been through. I truly believe that my anger and resentment was so strong when my stepfather passed away that he took me on this journey to discover myself and restore my faith in him completely. I was so bitter about cancer and felt that no good could come from it. In my mind, it was a death sentence and I knew of too many who lost their lives to it. Now, after all I’ve been through, I know it’s not. Cancer actually gave me life and for that I am grateful. I had and still have an amazing team behind me whom I call, “My Phighters”. All of your kind words on my social networks, donations and purchases at my fundraisers helped me more than you’ll ever know! I gained so many new friends and grew closer to ones I already had. My Ace, my right hand chick, my soul mate, Rachel Froehlich…I love you and my godson with every bone in my body! You picked me up and dusted me off several times throughout this process and showed me the loyalty you st always have. If it wasn’t for you taking my hand that very 1 treatment I don’t know where I’d be! To my son, Turchon Michael, you are mommy’s angel! You have been such a little trooper on this journey and did a great job helping mommy the whole way through. I hope you realize when you’re older that we are blessed to have one and other. I will do my best to always make you happy and never let you see me down. I want to lead by example and show you that no matter what life throws your way you better fight through it like no other! Everything happens for a reason and God makes no mistakes! I’d like to send big hugs and kisses to my family. You mean more to me than anything in this world and we have tons of memories to make together. Let the fun begin! Last but not least I’d like to thank my mother, Teresa Crawford, for being by my side every step of the way thus far. I know it had to be hard watching your baby girl go through so much but you raised one tough cookie! No more tears of sadness, we have a long life ahead to live. Charlie is in a much better place and he no longer feels any pain. Trust me, I know now what he was feeling and it hurt. Let go, smile and thank God we still have each other. I love you all and I appreciate you all! Thank you for being my foundation and holding my hand every step of the way. My battle has been won but the war is not over. Please continue to support those with cancer and spread word about my fight and the others in this book. We’ve worked very hard to be where we are and hope that people are inspired and encouraged! I look forward to making music in the future and speaking at public events about cancer awareness. Please continue to follow my journey on Instagram (@wutscocodoin), Facebook (https://m.facebook.com/coconicoleloso) and Reverbnation (www.reverbnation.com/coconicoleloso304). Every life has a purpose, appreciate and enjoy!
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Brittany Jackson The Plus One A disease that kills you your dreams if you let it
Kicking MS Ass My name is Brittany Jackson. I am 26 years old. I was diagnosed with Multiple Sclerosis in August 2011. To date I have been lucky. While I experience relapses, I am without any debilitating symptoms. With support, faith, and medication, I have learned how to manage my fight with MS. I have decided to live more and fear MS less. However, if you had asked me in 2011 what life was like, I would have cried you an entire river while explaining how unfair life was. It’s funny how things change. Below is a somewhat quick synopsis of my life before the diagnosis, during the diagnosis process and life now. Thank you for allowing me to share my story with you! Although it has only been three years since I was diagnosed with Multiple Sclerosis (MS), life before MS seems like FOREVER ago. If I had to think of one word to describe my life before MS, it would be BUSY. I’ll give you a quick rundown of my type of busy – in 2009 I was a senior at the University of Maryland (Go Terps!). In addition to being a full-time student majoring in Public Relations and carrying a 3.8 GPA, I had a part-time internship, worked part-time as a dance instructor, was the president of my college dance team and was preparing to represent my school at the esteemed Bateman Competition (a national public relations case study competition for college students). I thrived on having a full schedule. I always had to have something to do. I did not believe in resting or having a “chill” day…I had to be moving at all times. I repeat, ALL TIMES! Oh and just to give you a little more background on me – dance is my life! I have been dancing since I was three years old. Growing up I trained in tap, jazz, ballet, lyrical and hip hop. I competed locally and nationally from the time I was 6 until I was 16. I was captain of the pompom/dance team in high school and president of my dance team in college. I am currently a choreographer of a competitive dance troupe for students ages 5 – 16. Of all the genres I have studied, tap is my absolute favorite. I often refer to it as my first love. No matter where I am or what I am doing, if there is music playing, I am tapping. Around December 2009, I started to suffer from migraines. I started getting them once a week, then it increased to twice a week, then every other day. By January 2010, I was dealing with migraines on a daily basis. I did not want to do anything, but lay in bed all day, every day. The same girl who liked to rip and run EVERY SINGLE DAY, was willingly spending days in bed. After a month of these symptoms, my doctor recommended I get a brain MRI. I had never gotten an MRI before and didn’t know what the process was like. I was nervous, but my doctor informed me that if something was wrong with my report, she would contact me. Normally, when a doctor says “no news is good news”, I am happy to not hear from him/her – but for whatever reason, this time I knew there was some news to be told.
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I hassled my doctor for my results. She assured me repeatedly there was nothing wrong with my MRI, but something in me did not believe that. On March 5, 2010, I decided to go down to the radiology center myself and asked for a copy of my report. The report revealed there were three lesions on my brain and the possibility for a multiple sclerosis diagnosis. I had no idea what multiple sclerosis was at the time. When I thought of MS, all I thought about was people not being able to walk. Being as though I am a hard core dancer, the thought of not being able to walk was terrifying. It was not only a hard pill for me to swallow, it was a tough pill for my parents to swallow as well – especially my daddy. He didn’t even sleep that night. I think he was more scared than I was. The next day, my parents and I met with a neurologist – let’s call him Dr. #1. He was a very frank older man. He completely wrote off the possibility of MS. He said I was too healthy, too active and too young to have MS – which were my sentiments exactly. This was a huge relief. I didn’t have MS. I could dance forever. Life was good. Throughout 2010, I experienced abnormal tingling and numbing sensations in my legs and feet. This eventually led to more discussions with more doctors about the possibility of MS. I received numerous MRIs and went through so many physical examinations – all of which maintained that I did not have MS. Eventually, I found my way to the neurology department at John Hopkins, where I met a neurologist – let’s call him Dr. #2, who recommended that I get a spinal tap to put the MS rumors to bed once and for all. To date, my first spinal tap (yes, I had more than one) was one of the most painful experiences of my life. Nonetheless, the spinal tap came back negative for MS. I had dodged that bullet once again! In May 2011, my migraines came back with vengeance! Dr. #2 recommended I get another MRI just to be safe. On May 5, I had another brain MRI done. A week later, I received a call at work from Dr. #2 explaining that my latest MRI revealed four new lesions on my brain (for a total of seven) and that he was ready to move forward with an official Multiple Sclerosis diagnosis and wanted to begin treatment. This is the same doctor who had just told me in December that I DID NOT have MS. THE SAME DOCTOR! I decided he was wrong. I wasn’t ready to move forward with a diagnosis or treatment. I needed a second opinion. I decided to go back to my first neurologist, Dr. #1 – you know the one who told me I was too healthy, too active and too young to have MS. Surely he would be on my side. I took my latest MRI film and report to him hoping that he would have something different to say. I needed him to have something different to say. At this point, I still don’t even really know what MS is. I just know I can’t have it because I am a dancer and dancers can’t have that. He reviews the film in silence for a while. “I agree with Dr. #2,” he says. I was devastated. How could it be that both of these doctors who were so sure that I did not have MS, were now telling me that I had MS? Guess what? I still did not believe them. I did not have MS. I needed a THIRD opinion. In June 2011, I found my way to the National Institutes of Health (NIH). Third time’s a charm, right? NIH prepared a rigorous 3 month diagnosis plan for me – which included multiple MRIs, physical exams, blood tests and oh yea, ANOTHER spinal tap. If I received a positive diagnosis after all of this, I would accept it. 37
In the midst of all the testing business, I remember sitting downstairs and talking with my daddy one night. He started asking me if I had been doing research on the medications and reading any of the literature I had received on MS and I just busted out crying. I had not been reading anything. I did not want to read anything. I did not have MS. I did not want to have MS. This is the moment that this all became very real to me. I could actually have this disease. What did that mean though? Did it mean that I would no longer be able to dance? Did it mean that I would never be able to achieve my lifelong dream of owning a dance studio? Did it mean I would be in pain all the time? Did it mean that my busy life was over? I sat on my daddy’s lap and cried for what seemed like forever that night. Everything I had held in since I got that life changing call in May spilled out. My daddy consoled me and assured me that everything would be alright and that he would be there with me through everything. And at that moment…that was enough to make it alright. On August 25, 2011, I received my second spinal tap. It was much easier the second time around. A week later, NIH confirmed the spinal tap came back positive for Multiple Sclerosis. What a devastating blow. Although my parents had been mentally preparing themselves for this news, I could tell they were devastated too. We were all praying for a different answer. There was no way NIH could be wrong too, right? Part of me still wasn’t ready to accept it. And because I wasn’t ready to accept, I wasn’t ready to live like I had MS. The doctors all knew about my busy lifestyle and warned me about the importance of getting rest. They all warned me against overworking myself and informed me that stress could trigger symptoms and lead to a relapse (anytime symptoms last longer than 24 hours). But I was adamant about not letting MS change me. I pushed myself to the max every day after that. I never slowed down one bit. I didn’t even tell anyone other than my close friends and family. I didn’t want anyone to look at me and see that hideous MS label on me. No way, no how. December 3, 2011 was the start of my first relapse. I had this strong burning sensation in my right arm. My right arm was weak and it felt like it weighed a ton. Eventually, the pain became so bad that I couldn’t sleep at night. I could barely use my right arm. To do the simplest tasks, such as opening a door or picking up a piece of paper required so much effort. I was completely miserable and exhausted. This was it. I really had this disease. On the fourteenth day of this torture, the fourteenth day of not being able to fully use my right arm, the fourteenth day of not sleeping, I finally decided it was time to ask for help. I called Dr. Harrison told him what was going on. Later that evening a nurse from Johns Hopkins arrived at my house, inserted an IV port into my arm and set up an IV stand in my bedroom. For the next five days, I would be hooked up to an IV station in my own bedroom. I was responsible for cleaning out my IV port, hooking myself up to and disconnecting myself from the IV and changing the IV bags. It was during these five days that I came to grips with the fact that I had MS; that my life would forever be changed. After this episode, I decided it was time to begin medication (which I had been so strongly against up until this incident). In January 2012, I made the decision to begin treatment. This would require me to give injections to myself once a week. If you were to ask anyone who knows me what my second biggest fear is, they would say NEEDLES (spiders have the number one spot on lock). Every 38
time I even talked about having to give myself injections, I would cry. The idea of having to give myself injections weekly was just the worse thing ever. One day in January, a nurse from Johns Hopkins came to my house to teach me how to give myself injections. We injected a fake leg with water for like an hour, then it was time for me to inject myself. I cried like a baby! My daddy even asked if I wanted him to inject himself first to show me everything would be okay (Oh I am not sure if I mentioned this already, but I am a big time Daddy’s girl – you may have already picked up on this ☺). Finally, I calmed down and stopped crying. It was time to face my fears. I took needle and jabbed in into my thigh. I guess it wasn’t so bad after all! Of course, I cried again, but these weren’t sad tears or scared tears. These were tears of joy. I did it! I faced my fears! I was ready to take this MS thing on. 2012 was a tough year for me. I struggled with giving myself injections. My MS medication was causing me to feel sick regularly. I suffered from relapses more frequently. I felt like MS was kicking my ass, but couldn’t let anyone know that. Everyone knows me as this tough, strongwilled, never back down type of woman. I couldn’t let anyone know I was hurting. I made such an effort to hide my pain and frustration from everyone, but I was struggling. I cried a lot when I was alone – I would cry in the car, in the shower, in my room at night. I know I could have talked to my family and friends about it, but I didn’t want to. All anyone would tell me is “everything is going to be okay” and “things will get better.” But everything was not going to be okay and everything was not going to get better. Life as I had known it was over and no matter how hard I tried to deny it or fight it, things would never be the same again. I was angry. I felt like this was totally unfair. I went to church regularly and I prayed daily – why would God allow this to happen to me? Why would He want me to be in pain all the time? What had I done to deserve something like this? I was just so angry. I went through a small bout of depression in the summer of 2012. I had to take leave from work. My doctor prescribed me an anti-depressant and referred me to a therapist. I only had one session with the therapist. Sometime during that session, I snapped out of it. I heard myself talking to the doctor and thought “who is this person?” Why was I letting this MS thing have so much power over me? I am a very determined, STUBBORN, opinionated, hard-working young woman, there was no reason for me to be sitting in this man’s office crying about how unfair life was. I was strong enough to handle this. That’s why God gave me this. He knew I was strong enough. He knew I could be an inspiration to someone else dealing with the same battle. He knew this would make me stronger. And let me tell you, I am so much stronger ☺ That day I walked out of that therapist’s office and decided I would never allow MS to bring me to such a low place again. That day I vowed I would never allow myself to feel defeated or give up on myself. It was my turn to kick some MS ass; and I haven’t looked back since. Today, I still struggle with the pain. There have been times where I have had to be on a steroid cocktail of 24 pills a day to stop the pain. There are days where I don’t have the energy or strength to get out of bed. There are days that I cry out of frustration, but there is never a day that I feel like MS is winning. There is never a day that I feel defeated. I still live a super busy life - I currently work full time, am a part-time graduate student at Georgetown University and I still
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teach dance part-time (yes I am still dancing). I still thrive on having a completely full schedule, but I do recognize the importance of downtime now. Being diagnosed with an incurable disease is definitely a game changer. It forces you to change your entire perspective on life. With my diagnosis, I was reminded that life is so precious. That every day is truly a gift that should be valued and not taken for granted. I have learned not to sweat the small stuff and am constantly readjusting my focus to become the best person I can possibly be. Things that used to seem SO IMPORTANT just don’t seem important anymore. You know what is important? – God, family, friends, creating moments that you will never forget, laughter and happiness. If I could go back in time and talk to that devastated 23 year old version of me, I would tell her: “Everything really is going to be okay. I know you are scared right now, but you are so much stronger than you think you are. You have no idea how strong you are. It is okay to cry. It is okay to ask for help. It is okay to not be okay. This does not mean you are weak. It means you are human. You are so loved and do not have to go through this alone. You cannot do it all alone. God is not punishing or abandoning you. He is using you to fulfill a much bigger purpose. It won’t all make sense right now, but one day it will. Take it one day at a time. You will find your way. I am so proud of you. I love you.” I am so thankful for my family and friends who have been there with me every step of the way. My daddy held my hand through both spinal taps and still has not missed a single appointment. My mom is always there to give me the words of encouragement and inspiration to get me back on track and focused on my bad days. My little sister is always there to give me a pep talk and remind me that I am in the control of this MS thing, not the other way around. My friends have been incredibly supportive and are always there if I need to vent or cry and are always willing to substitute a girls night out for a sleepover if I need to rest ☺ Because of my diagnosis, I am much stronger physically, emotionally, mentally and spiritually. I have had young women reach out to me on social media to ask me about my story and how I manage to remain so positive through it all. I know this was God’s purpose for me. He needed me to be an example to other young women who may feel like they can’t do it. I will continue to uplift, support and comfort others who have been diagnosed with this disease. Hopefully one day a cure will be found and no one will have to say they have MS. In the meantime, I will continue to kick some MS ass ☺
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