The story of Ali Black…

I while back ago I found interest in learning about the stories of other’s and how Cancer has taken a tole in their lives.
From what I was experiencing I came up with this idea one late night as I laid my head to rest next to my mom who was in so much pain thinking to my self how exhausting this whole cancer thing is! I began to wonder how others delt with it and if they experience around the same anxiety and freak out moments as we did?
So I took my idea and decided to try and find out what people felt and how this took a twist in their lives.
My mom passed away about a month and a half ago and the truth Cancer has been the one word I do not want to hear. However I did ask for stories as I tried to learn about the experience of others and the chance to share the stories of those that cared to share them with me.
As poisonous as Social Media can be and all technology as it is, it can also be very helpful to have for the use of spreading word and networking.
If it was not for Instagram I wouldn’t be able to share this post and story with you guys, and as much as we ALL hate cancer and what harm it has done in some of our lives, it is also a diseased that has change the lives of many making them appreciate life more as well as making it an interesting learned experience.
And if they are lucky enough to defeat it… it makes it all a very powerful accomplishment.
So here is the story of Ali Black and how Cancer came knocking on her door…
Enjoy!

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Patient: Black, Ali
Female, 31; no kids; not married
Diagnosed with a rare acute Leukemia (Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN))

“I was first diagnosed on Sept 13, 2013 with Non-Hodgkin’s Lymphoma, just 15 days before my 31st birthday.  The problem was that the pathology reports read inclusive with words like probable and suggestive that the oncologist who saw the reports referred me to a Lymphoma specialist.  Let me begin by saying that I never suspected ME of having cancer.  In fact, I believed that I was having some type of health-skin issues that were related to an allergic reaction.  After all, I ran 20 miles a week, I juiced three times a day filling 20-32oz jugs, alkaline water, and drank herbal teas.  This all had to be a skin disorder, I believed.  I initially went to my family doctor who referred me to a dermatologist.  I slowly began to develop other symptoms that I thought were unrelated until I spoke to my family physician, who suspected that my symptoms were related to an autoimmune disease, probably Sarcoidosis.  However, she asked me to get a skin biopsy to be sure. After all, my initial symptoms presented itself on the skin.  It resembled a hive rash.  I was treated with prednisone until I had the dermatological biopsy.

When I eventually saw the dermatologist and told her my symptoms, which by that time had grown progressively worse as the skin lesions subsided, all but one on my elbow, she too suspected that I presented symptoms of Sarcoidosis. However, in order to be sure, once again, she performed the biopsy and asked us to await the results, which would take at least 10 days.  Mind you, some of the symptoms that were occurring for both physicians to assume that this was evidence of an autoimmune disease was my difficulty breathing after running/walking, abdominal pain, severe joint pain, and the inevitable skin rash. Eventually, when the pathology reports returned on September 13, 2013, it read that it was malignant cancerous tissue of B-Cells, Non-Hodgkin’s Lymphoma.

I remember that morning, prior riding to the dermatologist office, feeling incredibly weird, like my life would change through these results.  Although at this time, I was convinced that what I was experiencing was an autoimmune disease and nothing more, I began thinking about my future. I was a graduate student without any kids and not married. What would this mean about my living arrangements, even reproducing children? Could I have a child/ren living on prednisone (steriods) for the rest of my life? Mood swings were a detrimental side effect of this drug and hypertension was inevitable, along with weight gain, fatigue, the onset of occasional joint pains without warning.  I just kept thinking that the pathology reports would read this expecting me to know what to do for the rest of my life.  Tears overwhelmed my face in the waiting room, not knowing that there could be anything worst than what I was about to hear. I wondered in that moment if I could make it through this? Would kind of future would I have living with something that was as unpredictable as this disease? My old trusty handy iPhone could surely answer this question by seeing if anyone in the past ten years has died from this disease. As I read on, I came to learn that morning that Bernie Mack suffered from Sarc and met his untimely death with complications of pneumonia because of this autoimmune disease.  I began whimpering tears on my mother’s shoulder, who had been there for every appointment since I got sick.  I was surely expected to hear detrimental news.

“Ms. Black?” The nurse practioner called me back into the exam room.  She asked, “Are you ok?” after handing me a tissue.  I said, ”yep, just waiting to hear these results.” She patted me on the shoulder and said, “it will ok. The doctor will see you in a bit and she will talk to you about it.”  After ten minutes, in walks the dermatologist with only the most pleasant smile. She tapped me on my knee and touched my mother on her shoulder, and asked, “how are you ladies doing this morning? I hope that your wait wasn’t long?”  I answered, “no, just anxious about these results, which I already know that it is Sarc.” She said, “well, I was going to call you last night about that as soon I got them.” Instantly, my eyes met my mother’s wondering, “why would she need to call us?” “The results,” she said, “as I said came in last night and I wanted to tell you right away, but decided to wait until I saw you today.”  “ummmmm ok!” I thought.  I continued thinking, “isn’t it just Sarc?” now undermining my thoughts from the past few weeks.  “Of course, I would have to eat differently and live differently, but it is just Sarc. I braced myself for this news all week. Didn’t I?” my thoughts began flooding.

My dermatologist asked if she could begin reading the results, and as anxious as I was, I said, “please!” “Well,” she said, “the results read that the tissue sample that was biopsy ruled out Sarcoidosis, but that the tissue showed malignant aggressive B-Cells suggestive of Non Hodgkin’s Lymphoma.”  She looked up after reading the pathology report, and looked at me, and asked, “Do you know what malignant means?” With a blank stare towards the paper, rereading the report for myself, I said, “yea.” She said, “good, ok.” She turned to face my mom and asked her the same thing.  My mom asked, “is that like cancer, but not the bad kind, right? Right?!” My mom rushed the doctor for answer, hoping that malignant wasn’t what she thought it could mean. The doctor said, “well malignant, isn’t the good kind of cancer. It is lymphoma.” “Could your results be wrong?” My mother asked. “Well no, this is a DNA of a tissue sample. This is 98% accurate,” said the dermatologist. “Sooooo, what do we do now?” My mother asked. “Well, now she has to be seen by an oncologist and hematologist. But the good news is that this is treatable, in fact, curable,” said my dermatologist. I remember clasping my hands, taking in a deep sigh, as the tears began to fall like the rain shower before the storm. The wail I released sent shock waves through the hall as the nurses stood by the door to poke their heads in to see if there was anything they could do. My doctor immediately stood up and embraced me. She said, “it’s curable.” And I replied, “but what does that mean about having children.” Never looking up at her, I felt a tear release from her cheek onto my forehead, and at that moment, she rushed out of the room. I assumed not knowing how to answer my question. My mother, at that time, called my siblings while forcing herself to hide her tears behind the other side of the door. As my doctor exited and never returned, the nurses entered the exam room, embracing me and crying with me. My mother returned with the reddest of eyes and gently said, “come on, hun. We got to find an oncologist.”

All that ran through my mind at that time was that this was not the results I prepared myself for. What did she mean this was curable? I saw my dad die from cancer when I was seven years old, and it was not curable for him. He was sick, very sick. What did that mean for treatment? I did not have an employee insurance. I was a full time graduate student. Who would insure me now? Plus, I purposefully waited ten plus years to have kids until I was financially ready, and now this would never give me that opportunity, even if I was financially ready. Chemo would rid every chance of that. It would kill me from the inside? I am in a committed relationship, we have no future without kids…I couldn’t ask him to stay knowing that I couldn’t give us kids, which is an extension of a future together. Will I lose my locs? I will lose my locs! Who will I look like? Why cancer? Why me?! I eat well, exercise, and believe in the power of spirit. Did I inherit this from my dad? Was it genetic? Do I have to fight? If I don’t fight, is this my fate? What does fighting mean? These thoughts rushed my mind almost instantly, at the exact same moment my mother stroked my cheek as she drove to my primary physician’s office, and said, “don’t you can’t give up on me!” The tears kept strolling down my cheek wondering how does one not give up? What did that mean? How could my body betray me?

All I could do was cry.  I must’ve cried the entire day. And in the moments of silence, I refused to think. I just sat.  By the end of the day, I laid still with my eyes open, staring at the ceiling with no original thought swimming through my mind, but the memory of my father. Would his fate be mine? The days that followed flew by like a rapid windstorm in the winter: icy, cold, and dreary. I fell sicker and listless, until I was finally admitted to the hospital on October 7, 2013. The following days were filled with ongoing tests. On October 11, 2013, I was officially diagnosed with one of the rarest diseases that continues to be studied in U.S. medical sciences. It is so rare that less than 1% of the U.S. population are diagnosed with this disease. This disease is called Blastic Plasmacytoid Dendritic Cell Neoplasm, a rare acute Leukemia, in which I began the Hyper CVAD treatment immediately.  

I went into remission after my third treatment, and was officially cancer free January 2, 2014.  Luckily, I was half way through my treatment.  Typically, the Hyper CVAD consists 6-8 rounds of chemotherapy and one Lumbar puncture per treatment. Every twenty-one days, I was admitted for five days for treatment. The objective is to find a match stem cell donor while undergoing therapy.  For my disease, chemotherapy was necessary, but it was imperative to find a donor for a transplant. Without one, I was told that I would only have a year to live after completing chemo, even if my disease was in remission. I completed six rounds of the Hyper CVAD chemotherapy before receiving my transplant in February 2014.

Days leading up to the transplant, I had three days of additional chemotherapy and four days of radiation. I was completely exhausted, nauseous, and fatigued.  The day after my last radiation treatment was my transplant day, March 21, 2014.  I had no idea what to expect.  All I knew was that my sister was giving me life.  How do properly thank someone who does this unselfishly?  Now that I have had the transplant, I can say that the recovery is extremely different than recovering from chemo.  Although the procedure was successful and my counts recovered from the transplant, I am being monitored closely by my physician.  The time after transplant procedure is extremely critical.  And even though my procedure was successful, there are strict guidelines I must follow. For instance, if I am outside, I must wear a hat and coat, even if it is 95 degrees.  I now have a food list that dictates what I am able or unable to eat.  Imagine calling Starbucks just to ask if the cream cheese is pasteurized! This is all in the sake of healing.  As my body’s energy is in a state rebuilding with my sister’s cells, I have 180 days until I am able to go anywhere other than from home to the clinic.

I have accepted all of what I experienced as a transformation of my mind and body, a process of renewal for my faith, and a journey of enlightenment.  I have survived and have redefined what it means for me: surviving is fighting, healing, and living past my diagnosis.”

So in no better words if you are fighting cancer, or just flat out life…
Don’t give up, hang in there!
My mother lost her battle and wasn’t fortunate enough to win but she never gave up till her last breath she kept pushing, and that makes her just as much of a winner as anyone else.

Ali Black has taken this experience allowing it to help her keep pushing; It hasn’t defeated her and she refuses to allow it for she is also a fighter.

Grateful she shared;
Kbeautifulmind

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