Leukemia Mama, Savana

this is my story

[leukemia-mama]

The Dirty Truth

they ask “how are you feeling?” followed by “you look great!”. 

i always reply “im feeling great, thank you so much!”.

im trying my best to stay strong, im still learning how to live with an illness. what i dont want you all to know is how im really feeling. physically, mentally, and emotionally. living with an illness that has already taken 56,000 lives in just 2019, and counting. an illness that accounts for 9.4 percent of the deaths from cancer in 2019. not counting the many other strains thats taken over 606,000 lives also. 

yes, im still breathing. i still have a life to live. im able to be here and be in tune. im just a little tired of hiding the ugly parts though. ive never been one to feel pitty or want others to feel sympathy for me. prayers are all i could ever ask for. being in my childrens lives another day is what makes me push harder. so the next time you ask me how im feeling or how things are going, just keep this in mind...

im not okay. i live with TCELL ACUTE LYMPHOBLASTIC LEUKEMIA and TCELL ACUTE LYMPHOBLASTIC LYMPHOMA, both stage 4. im on many different medications for many different things. some days my legs hurt so bad i cant stand without them feeling like theyre crumbling from beneath me. the slightest touch of a blanket or even the air from the a.c. will burn my skin. i get nausea for literally no reason. my eyes play tricks on me and i see things that arent there. my stomach constantly feels like that bat is being beaten to it. my voice only goes so high and cuts out a lot. i suffer to take deep breaths on occasions. i trip over my own toes daily with fear of falling and hurting myself further. 

i may be considered “disabled” now, i may be known as the “girl with cancer”. these definitions wont stop me though. i will continue to fight my fight and better myself in every aspect. i will walk again without use of braces or a cane, without fear of falling over or tripping. i will live my life happy and healthy without having the use of filling my body with medications that only do me more harm then good. i will live long enough to see my kids grow and live their lives happily and healthy. i will sit in the driver seat of a car again and cruise the streets as i did before. i will be me again, just a better version with a authentic story to tell. 

[leukemia-mama]

Beauty Queen

over the last few years ive dipped into the makeup scene a little more and more. practicing the artistry, being more involved in the community, taking a risk and even becoming an influenster. thanks to subscription boxes and great sales, it helps to keep up and not feel so left out.

i wasnt going to mix my cancer blog with my beauty blog, it wasnt until i was posting a review with an attached picture of myself that i noticed the scar on my chest was more dominant that ive ever noticed before. it made me think.

with my illness, will it make people or companies look at me differently? i definitely dont feel as beautiful as i felt before. im still not adapted to my short hair, especially in the awkward stage its at. ive become so uncomfortable with my weight, fluctuating so often and not being able to be as active as before. these are all things i feel make me not as confident as i was before november.

i dont want to say i was ever conceited, but i did walk around with my head high and strut my stuff in confidence. i want to be that woman again. i dont want to hear others tell me “its ok”, “its only temporary”, “i like how you look”. i dont believe it one bit, it almost feels like its being said just to help me feel better. i wish i could just feel better. 

the more i make my reviews, and post product material, it sends a wave of joy over me. being interested and learning about products keeps me more involved in the beauty community. sometimes it can filled with hating, jealous, ugly on the inside individuals. but for the most part, their mostly loving and uplifting artist who understand the world isnt the prettiest place and were all not the same. we can do it how we want to, there is no rule book. never hold back on your creativity. we are all unique in our own way. 

[leukemia-mama]

A Legacy Left Behind

when i turned 19, the word “legacy” was a word i pondered about often after finding out i was pregnant with my duaghter. it wasnt until i was diagnosed that it meant the most to me though. 

having children makes you question your your future, almost passing makes you question your past.  all canvaced into words such as what will they think of you, will they be proud of you, look up to you? did you or are you living up to your own expectations? how was your success? it seems like so many inquiries asked to yourself in one shot. anxiety at the most starts to drape over you. 

for myself, nevertheless, its not about what others think of me when im gone. its how my children and family will reflect on me. i do know that i left with a fight and i never gave up whether it was mentally, emotionally, or physically. my first memory of childhood is a reminder of how much i have struggled in my journey here earthbound. i want my closest loved ones to know i didnt give up, even at my weakest. i have been walked over, pushed down, screamed at, spit on. that will not define me though, i am still here today.

despite all the bull crap i have been through, i always tried helping others with not asking or wanting anything in return. i was taught to use my manners and that god is always watching. so when i started to realize that individuals i thought cared about me were the ones that were hurting me the most, that was the moment i began thinking i should care for myself more and not caring so much what others thought. i started digging more into spirituality and paying more attention to my health. that when they started hating me the most.

my daughter and my son are what motivate to not give up and let this disease defeat me. on my weakest days or when i feel like giving up completely, those faces and sweet smiles keep me moving forward. its my mother and sister who i can thank for ensuring me im a number one priority, never leaving my side. aunts, and uncles, and cousins helping not just myself, but my mom, sister, and kids also. i believe they know i put up a fight, and i tried. not just health wise, but life decisions also.yes i have done wrong and some times didnt do the right thing, that doesnt mean i didnt try to right my wrongs. maybe my head wasnt always in the right state of mind, but i was always made out to be someone or something i wasnt, at least i know the truth. 

so what if i dont leave behind a life of fame and fortune, i dont have anything to offer anyone other then memories. i pray thats enough for you all. pictures and social media are one thing youll be able to reflect on, its the touch and vibe that will mean the most. thats why im leaving my words, a marking, from the dirty to the favorable. leaving behind some knowledge and reflections. this will be an impression of me i leave to you all as a portion of my legacy. 

[leukemia-mama]

“its okay to complain”

The feeling of your bones cracking and aching. Your skin itching. Your muscles spazzing. The slightest touch to any source of the body, instantly feeling as though there is a bruise the blackest and blue. Joints giving out. Swelling in hands and feet. Be careful not to burn your fingers at any time seeing as you cant feel them. Am i hot or am i cold? Is this sweat or tears? Skin is burning, make sure theres no rash. Everyone keeps saying you look great, but your hair is in an awkward stage. Back pack check for hand sanitizer, sun screen, medicine, lotion, wipes. Liquids at all time. Wanting a fresh caesar salad today, but not being able to have one. Someone sent beautiful bouquet of flowers hoping you feel better, and having to give them away or throw in trash not being able to enjoy. Loving the feeling of the breeze against your skin on a warm june day. the smiles and stories you share among your friends and family while you sit around the table. Memories and pictures sent to one another, reminiscing on all that was and is still good. This too shall pass, but also a lessons learned.  

[leukemia-mama]

💊💉

[leukemia-mama]

ғᴏʀ ᴀʟʟ ᴏғ ᴛʜᴇ ᴛʜɪɴɢs ᴍʏ ʜᴀɴᴅs ʜᴀᴠᴇ ʜᴇʟᴅ, ᴛʜᴇ ʙᴇsᴛ ʙʏ ғᴀʀ ɪs ʏᴏᴜ ♡

[leukemia-mama]

CHANGE OF PLANS

“your body is not reacting to the chemo anymore.”

“we will begin the process of doing a stem cell transplant.”

six long months of chemo, steroids, antibiotics, hair loss, rashes, platelets and transfusions, reactions, tests. just to be told, no more chemo because it isnt working any longer. sure, im in remission at this point - but that doesnt mean its gone away. now what? i pray the (stem cell) transplant works, and that im cured. because there will be no “what if” discussions, according to my doctor. 

okay, so whats our process? first, my sister and brother (both halves) will be swabbed. my blood is drawn. in the mean time we check the donor bank just to see if there are matches.. surprise, there isnt. okay, so now Santina (sister) gets results back and shes a match.. so far. were still currently waiting on Michaels (brother) results. then there will be further testing to determine if its one of the two..

in the process of doing all these test and swabs and waiting, ill be receiving what they call a “conditioning”. this is when you prepare your body for the transplant. mind you, my body has been in detox mode from chemo and steroids for the last 6 to 7 weeks. now i begin chemo again, so far ive received one infusion and then i take the pills everyday. ill also be taking five days worth of steroids. 

waiting has never been so hard in my life. life or death has never been a thought in my mind. this journey feels like just a dream at times. cancer? who thought it would be me. they were right, it doesnt discriminate. a young, active, strong mom of two, who worked and tried to help others. in a matter of weeks was on the verge of minutes left to live, without a clue. 

im obviously still here for a reason, so let me laugh while i can. hug me a little tighter when you see me. make sure to do right to others. dont hold grudges. do what youve always wanted. carpe diem.

[leukemia-mama]

mom's my biggest supporter 🙌

[leukemia-mama]

" ᴀ ʀᴇᴀʟʟʏ sᴛʀᴏɴɢ ᴡᴏᴍᴀɴ ᴀᴄᴄᴇᴘᴛs ᴛʜᴇ ᴡᴀʀ sʜᴇ ᴡᴇɴᴛ ᴛʜʀᴏᴜɢʜ ᴀɴᴅ ɪs ᴇɴɴᴀʙʟᴇᴅ ʙʏ ʜᴇʀ sᴄᴀʀs "

[leukemia-mama]

“I Fell Apart, But I Survived”

early december came, and before i knew it i was having to put my own mind, body, and soul into pushing itself to recovery. the treatment my oncologist put me on was a series of a pediatric chemo with adult steroids. the purpose of the steroids is to help make the chemo more effective and helps destroy cancer cells, while in some patients it also helps with appetite. but they never told me i would lose all function of my whole body.

before i knew it, i was falling to my knees - literally. the steroids had destroyed my muscles, leaving me like a lifeless corpse. i was completely bed ridden, having to be moved by every one else. my head, arms, and legs were completely useless to myself. i had to be fed, cleaned, an tossed around while having test done constantly. 

my eyes began playing tricks on me, i was seeing dots and flashes. ophthalmologist were checking them every other day. my arms became noodles and my hands were cramping in place. my abdomen had become numb leaving no option but to get frequent sonograms, and my skin started drooping from losing so much weight. my legs and feet were absolutely paralyzed, barely felt the needles being jabbed into them by neurologist.

eventually, my oncologist started to wean the dosage of the steroids so that i could learn to gain back my strength and walk again. it took so much in me, physical therapy hurt so bad. but i didnt give up. i pushed myself even if that meant falling down over and over again. yes, there were days i cried about the thought of having to hurt my own body and push it to its limit, but the thought of what if i fall again.some days that meant it would take two therapist to help me walk with a walker that day, it started with standing, to side steps, soon i was shuffling to the entrance of the room door and back to bed. before we knew it i was back in the halls. 

im now able to walk, but with limits. i used a rolling walker for quite some time. i was still suffering with my ankles and feet though. we learned i was now diagnosed with foot drop, a abnormality where you are unable to lift your forefoot up from the ankle. i have to wear a carbon fiber brace on both feet now to help keep my forefoot elevated while i walk, and with a cane at that. 

i some times have a stumble and i may sometimes fall, but its better then what it was. i eventually will be able to walk normally again one day, but it wont be easy. my legs hurt every day. from the back of my calves up to the front of my thighs, thats what makes me want to not get up most days. but i remember i dont want to be like this forever and i know i can push myself to do better - so i do. 

[leukemia-mama]

oo child, things are gonna get easier. oo child, things will be brighter ✨

[leukemia-mama]

The Wound Vac

the famous wound vac, that was placed in my right groin (the crease in your upper leg). the markings around it was to track the rash from the infection to make sure it didnt spread. i had surgery twice in 5 days in the same spot to be sure the infection was cleares out. the red dots and bruising on my stomach was due to the steroid injections and blood thinner injections. when I had the vac, the doctors would come in and change it every day or other day, which by far was the most pain ive experienced thus far (which I explained in my last posting). now a wicked scar sits in that spot, along with some numbness to the inner thigh that i may or may not gain feeling back in.

[faithprayers]

Luke 6:45

[leukemia-mama]

“ theres always been a rainbow hangin over your head “

[leukemia-mama]

Waking Up (part three)

after a week being on life support, i remember waking up in a small and cold room. i looked up and around, only seeing my mom and being in a frantic state noticing all the tubes i had coming out from my mouth, nose, and groin. “what is happening?” i asked my mom as tears started to fall down my face. thats when she replied “you have cancer” and hugged me real tight. i dont remember anything else after that, until the following day. i woke up in a different room, surrounded my doctors and nurses, all talking and working so quickly. before i knew it, there was three of them huddled over me, extracting the breathing tube out from my mouth. it was the worse feeling following, almost like i had a ball stuck in the pit of my throat that i couldnt swallow or cough away. moments later, a nurse tried feed tubing me (through my nose) which led to me being extremely sick for the rest of the night. i didnt want nothing to do with the liquid juice she was pouring into my nose, i was craving real food! things begin moving quite quickly the next morning. i had a german nurse, loud and spunky and was ready to kick my ass back to recovery. but before we began that, i had to learn how to hold my tooth brush all over again! brushed my teeth, took a dry shampoo to the hair, walked a few steps to the toilet, and was given real food. things didnt seem so bad, other then the body aches i was experiencing. but then the poking and pricks begin, i didnt feel to well after that. 

the week to come, i had stitches put in my groins from where they removed the ecmo machine, i had a picline placed in my upper right arm, while i was under the life support they had already done two biopsies, leaving a long scar on the right side of my chest. i had a lumbar puncture, a power port inserted on the left side of my chest, which led to the removal of the picline in my arm. eventually, after some time, the stitches in my groin ended up being infected causing me severe pain and sickness. they quickly rushed me to surgery where they cleaned out the infection, and ended up placing a wound-vac in the right side. of all the needles, and complications, and procedures i was receiving (that i was awake for), replacing and cleaning that wound-vac will forever be the most painful thing ive experienced since being sick, so far. 

- TO BE CONTINUED

[leukemia-mama]

The Week Following

(part two)

the following is a series of notes written by my mother of daily updates on me. 

November 2, 2018 - huge mass found in chest, put on breathing machine and transported to westchester medical center. went straight to operating room, biopsy of mass - put in ctcu - put on bypass and stayed on breathing machine. took biopsy of bone marrow. started chemo.

November 3, 2018 - no change all day. heavily sedated. no chemo to brain until shes off ecmo machine. going to meet with oncologist tomorrow. brother flying in. 

November 5, 2018 - you were a lot more alert today. you even gave Santina the finger !! still on machines. we met with dr. lim and he told us it will be a long road ahead but there is a very good chance your gonna beat this. your brother got here!

November 6, 2018 - dr. call for authorization to go in and check breathing pipe. said it opened up but you still need bypass machine so basically nothing was done about that today. slept all day!! got chemo treatment. 

November 7, 2018 - you came off the ecmo machine and they were going to then try to take you off the breathing machine after we left, im so proud of you, finally some good news. 

November 8, 2018 - called the hospital at 8:30a for update, they could not take you off the breathing machine so now they will move you to a medical icu. you came off breathing tube early pm, you did great! t-cell lymphoblastoma. 

November 9, 2018 - great job today, you took a few bites of food and a few steps! they put in your piclines (there is a card for picline that you always have to carry with you). they should be moving you to oncology tonight. found some ugly stuff in bronchal passage. sent out for testing. 

November 10, 2018 - you ate well, throat still hurting. took shower, santina and mike were there. chemo treatment today. santina went and bought you personal hygiene stuff to make ;you feel better. 

November 11, 2018 - mrsa in bronchal passage, need i say more ...

November 12, 2018 - you had a good day, got blood clotthing meds. took,k shower, ate well. 

November 13, 2018 - chemo day and spinal tap to check spinal fluid to brain. 

November 14, 2018 - not feeling well today - had p.t.

November 15, 2018 - taking out pic lines and having a port put in chest. 

November 16, 2018 - took scan of heart, not good. a lof of fluid in sac around the heart, probably caner cells. 4 ventricals of the heart, 2 work harder then the other 2 but because of the fluids pressing on the heart it is collapsing the 2 stronger ventricals. they will drain some fluids and test them, they will also leave a drain in her heart sac out of her chest. chemo day! update, removed 400cc of fluid and no drain put in heart!

November 17, 2018 - you had a uncomfortable day. everything was hurting you.

November 18, 2918 - good day, you even walked around the hall with santina. ct scan, need results, still havent taken out pic line. 

November 26, 2018 - clot in lung and legs. lump on back. bleeding. chemo today. 

November 27, 2018 - very week, lump on back is bulging disc. clot in lung and both logs. neurologist came in he will be running some test. chemo today in spine. 

November 30, 2018 - lost all muscle in legs due to steroids. 

[leukemia-mama]

The Beginning (part one)

imagine waking up one morning and your whole face is swollen, to the point where you can barely see and even having a hard time breathing. november 2, 2018, i was about to go to work, but instead my mom suggested a hospital visit. now, im no stranger to our hospital, ive been there many times for quite some reasons. but this trip would change my life.. forever. after a brief exam, they wanted to do cat scan which ive had before also, so i knew the minute i laid down on that table and begin to suffer to catch a breath of air, something was not right. after multiple attempts to get a picture of my body without me gasping for air with tears in my eyes, the tech quickly rushed out saying to take me straight to trauma. at first, it wasnt hitting me right away something was clearly wrong and others were frantic, until i got to the door of the trauma room and heard the doctor quickly tell me “you have a mass the size of your head sitting in your chest”. as i looked up to see my mothers face and begin to cry, that was the last thing i remembered...

- TO BE CONTINUED