anonymousdior

[anonymousdior]

Poems Words

[anonymousdior]

My Lived Experience

I’ve been silent the last few weeks, not because I don’t have a voice or an opinion on what’s happening in this world right now or even more specifically, in my home country. But, because there is just so many feelings of all kind of everything. But, I feel like it’s time to speak up and tell my story and my views. 

First off, If you are new here or need a reminder; I am Tri-Racial. My father is African American; my mother is Italian and Indigenous. Mix those three with being a medical anomaly; it can be confusing thing to divulge to people. Which is probably why I usually don’t. In fact, most people don’t know anything about me I would say. But, that’s about to change.

Let’s get real blunt.. I grew up within Racism. In fact, Racism is as much as my family as a brother and sister would be. How so? One family was so disgusted with my blackness that they administered burning liquids to my scalp to change the way my hair follicles grow. Yes, this was something the main culprit had researched. This family had called me every slur in the book, “The N word”, “Burrhead” were some to name a few. I was treated differently from my cousins because they were considered “pure” and I was “polluted and dirty.” That was just one family. My other family refuses to acknowledge me due to being mixed and insults are hurled on a regular basis in reference to my whiteness or indigenous side. In fact, some self hatred resides within my Father’s family as well. On another note, I was given away and sent away because of my blackness and how it would be easier if I was not nearby for the One side of the family.

Fast forward a few years, I was living with my meema and mooma, a strong Cameroonian woman and African man and my uncle C, an African American male. I am in a neighbourhood that was 96% African American and had a 92% crime rate. Racism was very much apart of this neighbourhood. The neighbourhood was fenced in, to not allow the residents inside venture out. In fact, there was a school, library and a shitty grocery store within this fenced area. It was expected that everyone residing within these buildings would stay within the fence and not “pollute” the rest of Atlanta. If you did get out, well expect to be hunted down and harassed. If you wanted a job, you would have to lie on your application of where you lived. The APD would roll in every day, with guns in hand, not even in the holster anymore. They would rough you up for no reason and if you fought back, you’re arrested on the spot and lucky if you made it to the precinct without needing medical attention. However, in the “white” neighbourhoods, no policing was needed and when you were arrested, you were treated as a human. This neighbourhood was treated as less than. Don’t think the APD are bad? Don’t understand why Atlantans are so suspicious of the APD?

Let’s get real again...I was walking home one night from my shift at T-Mobile. It was dark but I was dirt ass poor, not to mention my money had been taken from me (That will be discussed later on). I am minding my own business and all of a sudden, the APD with their cherries on pull over and draw their guns at me, I am 17 years old and alone, not to mention a girl. They yell at me to get on the ground only once, when I ask what is happening or why, I am lunged at and my face is pushed into the ground. With guns still drawn at my head and this heavy officer on me, I’m asked where I live and what am I? I answer the name of the neighbourhood and I am bi-racial. All of a sudden I’m told that I will do and I fit the description of an aggravated assault with a deadly weapon from a bar that was at least a 2.5-hour walk away. I was arrested and thrown into the back of the car, while wearing my T-Mobile uniform, the whole time I am pleading with them that I didn’t do this crime, that I was at work and to call my boss, he will tell them. I was told by an Officer to shut up and that all people from my neighbourhood are guilty and that anyone with “Black” is straight up wrong and guilty of being alive. AN OFFICER, someone who is supposed to serve and protect. They refused to listen to anything I had to say, didn’t allow me a call to notify anybody and threw me in jail and as they threw me in there, the arresting officer called me a “dirty ghetto N word.” I spent a month fighting charges that weren’t mine to begin with and that based off my registered ethnicity aka racism, I was automatically guilty. In the end, a judge was smart enough to actually read the whole case and discovered I actually DID NOT fit the description among other things.. However, I was still 1 hearing from going to prison for 10-20 years... all because I was bi-racial and one of those races was black.

I had a grandfather once, we called him mooma. He was an amazing man and one of my hero’s. He was amazing, respected anyone and everyone and would love to talk proverbs with you. A god-fearing man. When I was young, he had an “accident” that left him permanently blind. By accident I mean white supremacists thought it would be fun and an act of god to my mooma who was simply asking if there was biracial kid books within a bookstore. After he left the bookstore that’s when they jumped him. The APD did nothing and refused to file a police report and dropped my mooma off at a mental health area instead of a hospital.  Years from that incident, my mooma would leave for a work trip to Texas and would never return home. My mooma became just another black man gone missing. When we went to report it to the police, we waited 3 hours to file the report while other White families were served asap. When they got around to us, they never wrote anything down and said he probably had a 2nd family because he’s black.... My mooma was murdered by White people who thought they were better then my grandfather...Who didn’t care he had a family waiting for him and a granddaughter waiting for the next critter book. Someone deemed my mooma was not fit to live simply because he was a black man.

As I grew up, I took note how other kids would be treated compared to myself and the people within my neighbourhood. When my uncle would take me to the aquarium, we would be questioned for 5 minutes on the pricing of the aquarium and how there was no guns or drugs allowed. During this time, the white families were let through with no problems. The black families were always questioned and lectured. When I went to school I noticed the kids from my church had better books, their books went to Bill Clinton, my books went to Jimmy Carter. They were assigned homework and readings, I went to class with the lesson on the board with maybe only 4-5 kids in the classroom while our teacher read the newspaper or a book, the white kids teachers were invested in their future. 

As I went into high school, I started attending church with my meema at her request. In her words, “to pray the white devil out of you.” While my meema was busy praying for the white devil out of me, I was getting beat up every Sunday in the back of the church for being black by the pastor kids and their friends. They called me every name in the book, called me disgusting, ripped my shirt and spat on me. They always stole my money (as per for my comment a few paragraphs up, I was always broke because of it) In fact, one Sunday they beat me up so badly I went to the hospital. We tried to file a police report but the APD never came... That was the last time we went to that white church. From this moment on, I have only stepped in a church twice.

When I moved back to Canada, I was hopeful that it would be different and more peaceful. In fact, I have heard how not racist Canada is. I have to disagree; it’s just more behind your back, less in your face then back home. I once was told I need to calm down on the alcohol as I’ll fully turn into a “Drunken Savage.” Or not wanting to learn about the culture and mocking it at every moment someone has. Of course, a racist slur towards my Indigenous side.

Even from my Canadian city I reside in, Georgia still inflicts is racist ways on me. The black vote is suppressed to the point legal actions have been launched all around. The white adults can register easily and usually have a flawless voting process. That is not the case for the minority population and people who reside within low income neighbourhoods. To the point, the last election I was given a hard time to register saying my W looks like a V and that I was trying to defraud the voting process. After persistence, I was able to vote but was given 3 faulty ballots that were already filled out for the current president. When asked for new ones each time I was told why wouldn’t I vote for Donald Trump, he loves the poor. On top of that, this year’s voting process was no different and I was given a timeline that was not given to my white friends to register. I was given the run-around and every excuse to vote and was told the same excuse, that my paperwork was filled out with the wrong color pen, that there was problems with a computer system that they don't even use to register or that I was registered within a different state. None of this was an issue before they read where I was from and the ethnicity on file... 

The above is just a taste of the racism I have experienced/witnessed. It’s a daily battle within myself to love myself and embrace all that I am. The Black, the white and the indigenous. I still avoid mirrors, most photos and you will never catch me at the beach or the pool in fear my hair get’s wet and you see that little hint of curl come to light. 

So yes, these protests are justifiable. Yes, the Atlanta protests were the first turn to ugly and violent.. It’s because we are angry and it’s not just these few incidents, it’s a history of corruption, systemic and blatant racism. It’s years of oppression and anger bubbling it’s ugly head to the surface. I can assure you, it’s always been there..I end this blog with one of my favourite quotes from a movie “The Great Debaters” (If you have not seen it you should!) 

“Saint Augustine said, "An unjust law is no law at all," which means I have a right, even a duty, to resist -- with violence or civil disobedience...You should pray I choose the latter.”

[anonymousdior]

Have you ever wished to be unseen, a part of the scenery, blending into the background as seamlessly as a leaf on a tree? You make yourself scarce and keep your voice and head down and will invisibility.

Then you realize it works too well when the time comes you want to stand out...your wish has become your worst fear.

Camouflage

[anonymousdior]

[anonymousdior]

Loneliness

When I first heard the word “You have Cancer” it was like it was in slow motion. Like life had slowed down to like .5 times the speed and I Remember everything about that day. I remember the song that was lightly playing on the Doctor’s radio, there was leftover Tom Kha on my doctors table- like he had been eating while working. I remember the color of the chair I was sitting on was orange, which I was to find out later is supposed to channel happiness. I remember exactly what I was wearing down to which socks I had on and that I couldn’t meet my doctors eyes as he told me the next steps. Honestly, I don’t even remember what he said after the you have cancer phrase. However, I do remember the long walk back to the car. Looking through the pamphlets and my shoes at the same time. The one pamphlet on top read in dark black letters, typical hospital medical print. It screamed “SUPPORT.” I got in the car, and opened the first half of the brochure. The first thing it said is not to feel alone and to surround yourself with supportive family and friends. That they would be your rock and key to navigating through everything you are feeling. The last words? “You are not alone and will not fight this battle on your own.”

Almost 1 year into my battle of Leukaemia, I do find myself more alone then I have ever felt. I find myself extremely alone and lacking the support needed. I recently had the chance to go to Cancer Con in Denver this year and I had the opportunity to meet hundreds of other YA survivors. No one in particular with my diagnosis but multiple of people within treatment and out of treatment. The one thing they said that helped them through everything when I asked them, was their family and friends. At the time, hearing how these people supported them, I realized I had neither of those things. In fact, I walked out of my breakout sessions because I realized I truly was alone. (How symbolic I walked out to sit by myself outside a door- How ironic lol)

I mean sure, I have my husband. I am extremely thankful he is in my life. Without his love and support, I would of never made it this far. But, one person can’t be your sole support to replace family and friends. But Dior, what about your fam? I get a text once in awhile from my Father and dad. I call it the check in, it’s very transactional. “How are you feeling? That’s good, keep at it soldier! Or toughen up you got this. I have to get back to work now.” It literally is two text bubbles. I expect that. One is to busy with his career and has made it clear on numerous occasions that is the priority. But, he is in my life in the way he knows how to be at the moment. Amazing how Cancer brought a relationship into my life and a certain closeness. My dad? He refuses to deal with the elephant in the room. He has always been business, give him the lowdown and the solution and get to it. There are two other people in my family that are supportive or that I can talk to within reason.  

Since being diagnosed, I have tried extremely hard to not have it uproot my life in every way possible. It has been a complete struggle, my own personal hell. I force myself to go to work, force myself to work out and prepare for my fundraiser to raise awareness. I have tried so hard to not let AML be what defines me. The gal with cancer. Sometimes I sit and wonder if that is how friends perceive me. My friends and my husbands. I definitely have picked up on the different treatment. I’ve noticed some people have gotten weird. I’m not exactly sure on the reasoning but I’m assuming the C word is the reason. I mean, they were not like this before I had cancer. I once had a friend tell me they don’t risk talking to me because they don’t want to hear the gross things or the sad things, like the mere presence of me brings sadness to them. Or a friend who once told me they just don’t know how to talk to me anymore or what to say to me anymore. I mean, I guess in a weird way I get it. I’m sure I’m not always smiley. And I’m sure that nobody wants to hear how I’m always in pain whether it be my brain burning, bone pain or just pure nausea that seems to be my new best friend. I’m sure it’s not fun to have me around when I am not as quick as I used to be, or witty. But, I can’t help with that- my mind is failing me. I get brain fog, i forget how to play cards sometimes and it may take a second for me to answer because it’s an unmentioned side effect of Chemotherapy. But, I still like to think I’m fun because, despite all that you would never know. I don’t mention anything unless you ask specifically and I know people can’t handle those details. Even then, I always give very short and G rated answers. I will feel like Shit but I will say I’m fine or I’m good. Why? Because, I can’t stand for the cancer to take the limited social outings I have away from me as well. That despite this diagnosis and AML being disrespectful as heck. I am still Me. I am still the girl who loves going for dinner, movies and dominating in board games. I still love basketball and still watch polo games religiously, still head over heels for Idris Elba and I am still a foodie. I still dream of travelling to different places and I still have the same goals and aspirations I did a year ago. In short, I am still me. There’s just another chapter in my book that was unexpected. 

I’m not calling anyone out, I’m just expressing myself. I just want anyone who reads this to know that. Now don’t get me wrong these are a few stragglers here and there that will check in with me. But, again they usually don’t even message me to ask me how I’m doing. They always go through my husband and I guess maybe they don’t want to ask me directly? Maybe they feel the same as Friend number A or maybe it’s just a courtesy. You know when you ask someone how they are doing but you don’t care for the answer? Like that. Or maybe they just are scared or afraid? I guess it can be a little scary when you know someone who is battling cancer. Maybe, they need to know that I’m ok to tell you how I’m doing. Like I mentioned above, I won’t go into the nitty gritty, I am well aware people are not ready to hear that. I need to let people know it feels good when you ask how I’m doing or you include/invite me to things. Now I get as a couple, my husband and I have been invited to one or two things lately. We were not able to attend, mainly due to one of us working, coming back from a trip or I may be puking my guts out and laying in the bathroom contemplating life. 

I don’t know how to end this blog. I just want to not be alone in that dark room, I want to be included and I want someone to truly care. To truly care and maybe look past my diagnosis and still see it’s me. Plain ol’ silly me. 

[anonymousdior]

Know who you are. Know what you want. Know what you deserve. And don’t settle for less.

[anonymousdior]

[anonymousdior]

[anonymousdior]

[anonymousdior]

[anonymousdior]

Round 2 Conquered

Sure has been awhile hey? Well let’s just kick it together shall we?

First off, I think it’s great people are enjoying my openness of my diagnosis and my cancer journey. A main theme is the why.. Why am I so open? Why do I even want to talk about it? I even had one person tell me they could never be so exposed. I get that. I mean, I talk about everything and anything. The reason I do this is so people understand, people can get a better Idea. Some people are unaware, and I used to be one of those people. Like sure, I had family members and friends with Cancer. But, like I didn’t even know they had chemotherapy in other forms. There are so many different ways to administer Chemotherapy. I am constantly learning and finding new things out and I think what better way to educate and inform people then to have them follow me on this journey? So there is that answer. 

Alright, now lets catch up! I have finished my second round. To be honest, that was more intense than the first round. At first they kept me on a medium-high dosage and on top of that I was given some steroids pills. I call them my food steroids. I did not eat during my first round of chemo, my oncologist said that could not happen with this round. Well, I can assure you it didn't. Those steroids were some serious stuff! I would wake up in the middle of the night and cook myself some Chicken, had dreams of food and when I wanted something, I wanted it right away. On top of that, I encountered new side effects and some oldies. The bone pain was intense, sometimes I couldn’t even concentrate on anything. The most weird side effect was a brain burning sensation. Sorry but that is the best way to describe it. It was an intense burning pain in my head and it was the worse part. There was nothing that would help with it either. Some other side effects; Memory loss a.k.a chemo brain is real, weight gain, hair loss, temperature drops and some real nausea. I never got around to working out like the oncologist wanted, I mean i was so exhausted the whole time. By the time I finished 1 or 2 errands on the weekend I could not continue with anything else. I napped a lot and didn’t go to a lot of events. Everything took a lot out of me. Not to mention, going to work was just exhausting. I still managed to do that and I am the only patient my oncologist has had for 25 years that has continued chemo treatments and still worked full time. It’s been rough though. There were days I called in sick, to the point I’m on attendance watch. I did discover my work is not as accommodating as they make it out to be and they truly do not care. But, that’s another story for another time.

Now I do want to touch on the Chemo brain. This is a real thing! The memory loss was the thing that scared me the most so far. Chemo brain, chemo fog or whatever you want to call it, is when you experience memory and thinking issues. For example, my husband and I were playing cards one night, crazy eights (one of my favs). All of a sudden out of nowhere, I was unable to recognize the playing card suits and I was unable to realize which number was above or below 6. It was terrifying! I think I started to cry right away. Sadly, that was just the start of it. At one point, I couldn’t remember my husbands name. How awful is that? There were times I couldn’t remember what I was doing, a procedure at work or some things from the past. However, this side effect really opened up the support system I have. My father, godfather and my husband messaged me a trivia question everyday. They would range from past memories, current memories or future plans. For example, my father would text me every morning on the dot at 8:23am (right after his Tai-Chi) and would ask me my childhood teddy bear name, my african name (yes you read that right- I have two fyi) and even something related to the very few times I have hung out with him. My godfather would message more personal things, would ask me to explain the story behind names of previous pets, favourite restaurant in Montana, things about my bedroom at his ranch etc. My husband would ask me everything and anything, past and future questions. In short, my memory was always being tested and when it wasn’t. I played memory games. My support system was like no other I have had before. For that, I am incredibly grateful and thankful.

Well fast-forward to today. Today is my official day 1 of my rest period! YASSSS!!! I am on a 3 week break to give my body time to repair and rest. I go for follow ups in a few as well. So I guess we will wait and see. Either way, last we checked it was roaring on to the M4 stage but the last 3 weeks of my 2nd round they increased to an intense dosage (Double the Double pills, two different types of chemotherapy and one even was inserted subcutaneous.) That has made AML calm down a bit from the last tests we checked on and it was bordering M3-M4. So that is a good sign for sure! I am hopeful and trying to be optimistic, but where I am at the moment, it get’s hard. I go to a dark place once in awhile and I get angry. I get angry that I am going through this, wonder if sometimes it’s because of the past things I’ve done If that’s the case- I’m sorry, is it because that the daughter pays for the fathers sins, if that’s the case I’m so screwed. I get very angry that oral meds are not fully covered under benefits and my insurance company will not pay for them anymore because they are to expensive. I have 4 maxed out credit cards, with high maximums due to the chemo medication.  I added up everything for the round 2 chemo, round 2 alone was $48 grand.. For pills I take twice a week.. How insane is that? It’s so insane I think about stopping treatment. I have not told anyone but, I have made a will. Just in case. I try and let these thoughts go but this shit destroys my mind. Either way, I find I smile less, laugh less and I’m just not myself as much. 

However 2019 is here and it’s a new year! New year, new goals and new ways of doing things. 2019 is the year for goals. For example, few weeks ago, in the new year. I have booked 2 reservations for Gordon Ramsay restaurants for my birthday! I am attending CancerCon in April and I am overwhelmed with how much money I raised for the Stupid Cancer charity. I made my goal of $500. People really are amazing! 

Well I have typed your eyes out long enough ( Ha, get it? Instead of talked your ear off- my one joke for the week). I look forward to my break time and look forward to all the taste of my food coming back and just maybe having more energy to start that gym routine! I am also planning on opening my Ask me section back up and doing a Q&A in regards to my journey so far. So if you would like to contribute a question you can do so by clicking here https://anonymousdior.tumblr.com/ask . You can also ask Q’s by being anonymous as well so I have no idea who the question is from. I’m thinking in 1-2 week I’ll get to a post and just answer them. Who knows we will see how it goes! Until next time my peeps I’ll be sitting here in my on and off again dark place. 

[anonymousdior]

Bombshell

Everyone has been asking me how I’m feeling lately with the new bombshell my Oncologist dropped on me. It’s taken me a few days to mull it over and to really process it. It’s devastating. 

I finished my first round of chemo and I was so excited! So excited to feel better or so I thought I would. Turns out I received some devastating news about a week ago now. AML has gotten worse. I’ve actually transitioned into stage M3. Actually, more exploded into stage M3. What does that mean exactly? Basically, the non-medical talk is my blast cells now vary in shapes and sizes and have there own nucleuses. I still have more healthy cells but who knows how long that is for. The oncologist is starting me on round 2 of chemo. When I heard this, I got real short of breath. I mean, I thought it would be round 1 and then call it a day, wave off to AML. Well, turns out that is sure as heck not the case. In fact, it looks like AML may be pulling up a cushy spot within my bone marrow. The good news? It hasn’t spread to any other organs. That is great news actually.

So round 2 starts Wednesday. How do I feel? I feel like it’s always 2 steps back and 1 step forward. I don’t just have 1 feeling to describe how I feel actually. I’m pretty scared. I mean I know it’s a big deal and big news but I’m scared to acknowledge it as such. I’m scared that I will die. I’m not quite ready for that. I’m scared this will be the round where I lose all my hair, not just patches and a little bit of eyebrows and eyelashes here and there. I’m scared I’ll look sick. I’m sad this was brought all on due to the last few weeks of my chemo rounds. Someone got me sick. I wish I knew everything I did now earlier on. Maybe I would of been in a different spot then where I am now? My oncologist suggested I take some time off my full time job, he said this round will be more intense then the first. Different type of meds, still oral though, more intense side effects. However, my oncologist did give me props. In all of his years in oncology + haematology, I am the only patient who still worked while going through chemotherapy treatments. I’m not going to lie, there were times during my chemo sessions where I just wanted to call it quits, Just give up, The chronic pain, losing sensations in my fingers and toes, lost of taste and the tiredness. Not to mention the heat, gosh I was always on fire! I was barely eating and if I did, 97% never stayed down. No matter how good it tasted. The fact this round will be more intense, makes me nervous. 

Few days ago, a part of me didn’t want to do the second round. I wanted to know how long I could just live like whatever. I discussed this with my godfather. He pretty much told me to stop talking nonsense and he wouldn’t let me quit. That I don’t even have that word in my vocabulary. My father was supportive as well. (Yes you read that right!) My father said to get those thoughts out of my head. That I am a “unique breed. I am made with two of three races that won’t allow me to stay down and are used to a fight for their life.” Let’s just say the rest of the conversations were pretty powerful. 

Another thing that bothers me since joining the cancer club? The cost of the oral chemo pills. I mean, if I go to the hospital for intravenous chemo, it’s free (In Canadian standards). However, because I want to lead a normal life I have to pay for my oral Meds. Granted, I have benefits but even after those 80-90% benefits are said and done, I spent $16,000 in the last 3 months on chemo meds. And the sad part? That is the low number compared to that of seniors on oral chemo meds pay. This whole thing has made me very aware how fortunate I am to call certain people in my family, father and godfather. My godfather has an arrangement with the pharmacist to charge his card for the meds. Lord knows I wouldn’t have been able to afford that on my own. He just doesn’t play a superhero, he is my superhero.  My other issue? The waiting times to see the oncologist!! I have seen the oncologist twice in the 3 months and one of those times was a fluke! Apparently, it’s really good to be able to see the oncologist that many times?! The average wait time is 4-7 months for an appointment. That doesn’t seem long but it is when you have a disease trying to take you over. It makes me feel guilty that I get preferred treatment over other patients. It sometimes makes me feel dirty to be honest. I mean I’m sure at work visits for a fever aren’t something everyone has access to, I’m the only patient where my oncologist always rushes the results, any cancelations I get the first call, regardless how far down I’m on the list. Why? Found out my father promised my oncologist premiere tickets to an early screening when it happens for a certain film. I guess in a weird way, he does care.

So come Wednesday, I will wake up early, get ready for my job, do my morning pep talk to myself and blow dry the heck out of my hair. Not only will I contemplate the disgust I have with my mixed hair (previous posts) but I will slowly brush my hair and fear it from falling out. I will put makeup on my face, even if it’s something as little as mascara or an all over eyeshadow. I will put on my “stand strong” sneakers and I will repeat “Cant Never Could.” Then I will enter the ring for round 2 of this boxing match. But, this time with heavier gloves. 

[anonymousdior]

Dear AML

You are my bulldozer. My bullet train. The deadly sleeper that nobody wants. Yet, here you are with me. July 10th, was a change of a lifetime. Hearing your full name, acute myeloid leukaemia, associated with my name. How could it be? I’m not a child nor a senior, yet here I am with this disease. This cancer. This name, AML is taking over my body. It’s a scary thought and the thought of you terrifies me, something I’m not used to being. However, I can’t let you know that- can’t let friends and family know. But maybe I am not fooling anybody? I mean doctors latest prescription? I need to have a fun night with family and friends. So here we are this Saturday, dinner + games. But, it’s just a temporary fix and escape from my new reality. My new reality? How I can’t escape or outrun you, 

How does AML affect me? 

I mean I’m being told to get active, do sports or go to the gym. Yet my energy is non-existent. I have a type of cancer that drains energy and the medication to fight you drains the last drops of energy I have left. That is you AML. The ability to not taste my food anymore except moments here and there, that is you AML. The minor hair loss I experience while in the shower or just brushing my hair, thats you AML. The constant heat radiating off my body, the heat flashes and having to blast AC constantly wherever I go or not being outside to long, Thats you AML. When the Oncologist told me the plan and gave me 5 minutes to decide whether to take chemo meds and risk chances of infertility or to not take chemo and slowly die, thats you AML hitting my chance of a new family hard. The nausea and constant vomiting? Thats you AML, wanting to hurt me. Wanting to hurt my family. To the point, they can’t deal, they won’t deal. They either avoid the topic and refuse to talk about it or they talk to me like I’m one foot in the grave. Asking for me to draw up a will, wanting to fly and put stickers on what and who in the family wants amongst my possessions. That’s you AML, doing all the above.

But why would you stop there? Because of you I can’t be my age. I can’t do things my friends are doing or worry about what my friends are worrying about. No longer get the luxury of worrying about when to start a family, whether to go back to school, Where to Vaca next. No none of that. I have to worry about my next chemo round, I have to focus on the chemo, Will i be able to swallow my pills without the pharmacist shoving it down my throat today, will i lose my hair, where is the local bathroom, can I taste this food today?  Or the big one, Will I die soon? I mean AML, you are pretty tricky. Your a silent sleeper, my silent sleeper. Depending on your mood, you can go slow or disappear all together or you can grow fast like you have a mission and slowly take me over. 

But let’s be real. In a sick disturbing way I am 3-7% thankful for you. I know people going to hear this and be like what? She's mad. Nope, just being real. Without this diagnosis, I would never work as hard to accomplish bucket list goals. I would not have my new outlook on life. I am more laid-back, positive and just enjoying every little thing. Everything from my husband telling me about his day, to the ability to just hear him talk about things and go on rants to just the ability to drive myself anywhere I would like. To be able to work and focus on things other then you AML. But the most important? The closer relationship I have with my father. Do you know AML, because of you- my Father texts me every day or two? Just to check in on me. To see how I’m feeling. It’s not a lot but I guess death truly does bring people closer together. I mean if it wasn’t for you AML, during medical procedures where my father was needed, he actually flew up. Pushed back filming for a show so he can help me. He held onto me as they drilled into my spine and hip. He talked about stories of me that I never knew. Held my hand as they hooked me up to machines. Drove me home, with Mac of course, and we shared Jollibee together. He put me to bed and left. All things a real father would do. I guess you did bring out some good in people? I mean he even went as far as buying me “Stand strong” shoes, very nice Jordans. He even bought my husband a Raptors T-shirt, which is big for anyone who knows the relationship between those two.

In the end AML, you still are unwelcome. You still force these thoughts and feelings a 29 year old should not have. Yet again, here you are staying and putting up a fight to be my friend, for me to stay in your club. But, I don’t want to stay in your club. I don’t want any part of you and I would like my body and my old self back please.

Sample of Bucket List:

-To Eat at a Gordon Ramsay Restaurant

-To see a movie with my Father, in theatre prefer one he is not in.

-To visit Seattle

-To cook Yassa Chicken with the needed pot with my husband

-To have the energy to go the gym twice a week to start

[anonymousdior]

Match or no Match

It’s sure been awhile- I guess work and life has had me so busy lately. Started a new job which is fantastic and Im enjoying my time there. But outside life has been pretty Debbie downer. I know, the eye rolling happens right now right? Like Ah Dior here we go again! Well, we all need an outlet.

Just before I started my new job, legit the day before. I had a series of tests done which included a bone marrow biopsy. I’d like to add it was my third in a matter of 2 months. Not fun and super painful if you ever had one. Your awake when they drill into your hip bone. Ugh I have to stop talking about it as It gives me shivers. Well few weeks afterwards, an oncologist called me. I have a pre-leukemic disorder. What’s that mean? My bone marrow is making something called Blast cells that are immature. Which of course, is not good for my body as we need mature cells. It’s not cancer, which is good! However, the oncologist said it can lead to cancer over time. However, that being said I was put on these meds that were for cell targeted therapy. It legit was a low dose Chemotherapy pill. It was awful! I could barely eat anything, was nauseous and getting sick for weeks and I was exhausted and burning up all the time. Thankfully, we have changed the meds and it’s not as bad however the skin burning is more intense and I can literally not sleep at times, my skin feels so hot. The oncologist said thats normal and gave me some suggestions for lotions and such to help with mental aspect. 

We have also has put me on the transplant list for Bone Marrow. Which I’ve been told is so rare that most people die before they get their match. So that has been bothering me ever since, about a few weeks ago. Dying scares me. I’m not ready and I just have way to much stuff to accomplish! Anyways, there are certain parts of my family who have told me if thats how the creator has made my life to be, I must not meddle. Thanks mothers family...that makes me feel better *Sarcasm if y’all don't know me.* However, some family have gone out and went through the series of tests just so they can know, when the time comes. My godfather, his son and his wife have been tested. Oncologist said technically my godfather classes as an unclassified donor, I think it was called? That’s a great thing right? It is. And has touched my heart that my godfather has gone through the tests. But what of my parents you ask? My mother has declined to go through testing, the beliefs prevent her from doing such. I respect that and would never ask of such things from friends and family. However, what of my father?

My father’s family is the reason I have received this lovely disorder. And as all parents are for bone marrow matches, he is automatically haplocompatible, meaning half of my HLA match as he’s my biological parent. (If he needed more proof, there you go father!) My father is aware of this and has gone through testing. Thats brilliant right? Yes and no. There’s a catch, theres always a catch.

Every time my father has a new movie that comes out, he has a tradition where he purchases a gift for his children. I have only been apart of this tradition once, a few years ago I was able to vacation on the yacht and it was exciting and a lot of fun. Well, as some of you may know, my father has a movie that is coming out shortly. So here comes the tradition. The youngest is getting a new car, the middle child is receiving year paid in rent. For the second time ever, the oldest child (that’s me!) get’s to be included. My gift is the fact my father was tested. He told me my gift is the gift of potential life. Yes you read that right, potential life. Why potential? Well my father being the type of person he is towards me, has conditions on my gift. Funny, how the other kids don't have any conditions- in fact I believe they are getting the new car today. Must be nice. However, on to the conditions:

1.) Don’t write the truth in my blogs as he has a certain persona to keep up. (Worded just like that)

2.) Get DNA tested yet again (This would make lucky number 7 or 8? Has this man not realized DNA does not change!)

3.) HIs doctor does his testing and he will send results to my Oncologist

4.) My husband (the one he doesn't want to meet or care for) has to mention him in his social media movie reviews and play him up. 

Those are the conditions. Silly right? Extremely! What’s silly is the conditions are childish and unbelievable. Childish as in who does that? Who asks of those things? Someone who likes power, having power over others and here is perfect situation for this man to use it. So what’s the end result? I’m not sure! I don't know what to do. I have no problem doing the DNA test, I mean I do one every year so what’s one more right? His doctor did his testing already. That just leaves two. The two weird conditions. I mean I could write a blog post about the lies he wants to portray to the world. I’m fine with that? I mean I don't even think he reads my blog. I have discussed such things with my husband. He is annoyed by the conditions, who wouldn't be? However, he is more so annoyed that he is trying to impact his reviews. My husband does the reviews because he likes doing them, he says it would be like he isn't writing it himself and is misleading friends and family. I don’t blame him, he shouldn't be told what to write- this is such a childish thing to do from a man who is literally early 50′s. 

Well that’s the update! That’s the situation I find myself in right now. Not sure what to do next. I guess only time will tell. What to do- what to do.

[anonymousdior]

[anonymousdior]

[anonymousdior]

Lately…I’ve been losing sleep dreaming about the things that we could be.

OneRepublic, Counting Stars (via music-and-quotes)