The Call That Changed My LifeNov 17, 2021
I want to begin my story when my best friend and I made a pact to live our best lives to the fullest. We booked a vacation of a lifetime, traveling an island for a month from coast to coast. The glimpse of it all brings the biggest grin to my face. The sweet smells of side food vendors , and at every corner ice coconuts as they delicately created an opening so that we could drink that refreshing water with our fancy straws. Our version of living life to the fullest entailed our 2 one year olds, an eight year old, 12 year old, and my most amazing 18 year old God son who struggles with Down’s
We parked along waterfalls and set up our playpens under the shades of the palm trees and enjoyed the cascading waters , heart filled belly laughing with our older ones is still something I can not get out of my mind. Time of our life is an understatement. These are the memories that drifted in and out of my consciousness as I fought for my life.
Just like Good memories areengraved in our being, so are the bad ones, but these are etched into our nightmares, fears , mental faculties, which can lead to our demise and eventually costing us our lives.
In August, three weekshree weeks from our returned trip I felt an odd bump In bedded in my chest wall.
I quickly reduced it to be one of the trillion bumps that I incurred on the most amazing time of my life. A month later I remembered the bump and looked for it, only to realize it had grown. I called my doctor
as many of the commercials, billboards, health visits, nurses, doctors often told you to do as a woman. I received a startling reply
“Does it hurt Mam?”
“Then it is not an emergency, so I will schedule you to our nearest appointment.”
I could hear the sound of the Jeopardy music playing in my head as she searched.
“Mam, your next appointment will be December 17th.
I thought I heard her incorrectly so I asked her to repeat it.
No, I was not hearing her wrong.
“Excuse me, but that appointment is not near at all “
“It doesn’t hurt, you don’t have a rash, or present a fever, so it is not considered an emergency, would you like me to book it?”
“Yes,” I muttered.
I kept on thinking…
why do they constantly drill this into our minds but then it isn’t even considered on any scale of importance? I was confused, but trusted the professionals. It must be nothing if it doesn’t hurt.
As I waited for the next couple of months to go by I thought maybe I was delusional and there really wasn’t anything to worry about.
This precise moment kept on creeping into my head. Why did I trust? Why didn’t I go elsewhere? Second opinion? At that time, it could have been nothing at all.
The time was finally here
on December 17th my phone rang.
“Hello Mam, this is the office of Dr. BlaBlaBla, do to the impending snowfall this afternoon we are canceling all of our appointments today.”
My drive kicked in
“NO YOU ARE NOT,
I have waiting for this appointment for months due to the fact it was not considered important and I need to be checked, please let me be seen.?“ as tears of frustration grew and the young woman took some pity on me and said “Give me a sec, let me see what I can do….”
It was the longest second of my life.
“Mam can you get here right now ?”
“Yes, yes, yes I can!’
“Ok, we will see you soon.”
I don’t know who this woman was but today I consider her an angel for listening and caring enough.
I flew like lightning, my one year old and eight year had just woken up.. I called my friend across the street and explained the situation and she said yes she could help me. I picked up my kids in there feetie pajamas and ran. No time for shoes, food, diaper change. I got to her house and yelled Thank you so much and I’m so sorry please change my baby!”
I began to run.
Living in the latin community poverty range most of my youth never afforded to even learn how to drive., although at this time we lived a much better one. Yet still my poor upbringing still followed.
The hospital was a five minute drive, but that day I could not even get a cab.. My feet were my only source of transportation and they served me well. I am not a runner but that day I really was…within 10 minutes I arrived at the front desk. For the first time a professional said I was not delusional and he too felt something and Mammogram will be scheduled. I erected so fast off of that bed and yelled “It isn’t going to be 10 months from now, right?” He grinned but I don’t think he found me humorous. He replied, “No and that the lady out front will schedule the appointment today for next week.”
I think that this was the only things that happened exactly as it should happen for a long time.
On December 24th I was seen for my first Mammogram and was reconfirmed that I was not delusional. They saw something too and I needed an Ultrasound that day too because it was routine. The tech did my ultrasound left the room and a Doctor came in. I could tell something was not right, so I said to her if she could at least tell me what she thought.
She put her hand on me and said “Don’t worry there is a cure for this.”
I left stunned, numb,in a trance,, but then I came too and was like it’s a fucking ultrasound machine I need tangible truth.
Christmas came I celebrated without giving my family a hint of any trouble in the water.
On December 31st, 2019 I took out all of my families clothes so it would be organized,, to make sure it was coordinated for a party we were to attend that evening, since early in the afternoon I had an appointment scheduled for a consultation with a Breast Care Center to review my mammogram and ultrasound and plan a biopsy and whatever steps needed to happen. I went in with a grin because in my mind I had a wonderful night ahead of me. They took me in to the back and asked me a series of questions. I let them know I had found it in August, but no one deemed it to be urgent so that is why we are here now. They left the room and took one look at me and said we don’t want you to wait any longer, so we would like to schedule the biopsy for right now.
My plans were canceled for New Years Eve.
The Doctor came in and performed the procedure and it was like a secret language came about with the Doctor. At the end, I said “I want to know and if it isn’t “that” what else could it be?”
She said “Are you a straight shooter?” I nodded. She said “it isn’t anything else, it is “that”!”
I didn’t say anything to anyone. My partner held me on the couch with our two children, our two dogs and cat. We stayed home, watched the ball drop, and ate Chinese food. and like every year we kissed and wished upon us good fortune, great love, and an abundance of good health for the following year.
But I still knew doctors too can be wrong.
The tangible results arrived. I said out loud for the first time I have Breast Cancer and in one breath I can say now I should have stuck with my original statement along with many other statements I learned that following year…
Doctors too can be wrong,
Doctors too can be prejudice,
Doctors too can fail,
Doctors too are scared,
Doctors too can be perplexed and unsure on corrective measures of treatment plan,
Doctors too are under educated on pain management ,
Doctors need to listen more to the intuitive nature of their patients,
Doctor’s fears result in under serving their patients needs to live the best quality of life possible
Doctor’s choices and judgments can break up families too
white coats to me became a synonym with fear and distrust.
2020 was a year of growth for all human kind!
I was ready for the challenge. I relate my following experiences as climbing a cliff but closing my eyes and just jumping trusting that I could make it.
As Primary Caretaker I wondered how it would look like for me. I did all the sleepless nights with my one year old, took care of anyone that had any ailments, did the running around, the finances, cooking ,cleaning, and even kissed all the booboos.
First failure occurred, I was to get a port for my rounds of chemo and told it was a quick and painless same day procedure. On day 5, I explained that I felt like an elephant was sitting in my chest, I called my doctor and was told that it would soon go away.
On day 8, I went in crying to be seen urgently and told them something is wrong. I cannot bare this. Please take it out. PLEASE! They told me to bare it, gave me a prescription for oxies and sent home.
Day 10, I went into cardiac failure, contracted sepsis, it had spread through my heart and pulmonary emboli. Spent 10 days in the hospital and not one person told me what was going on, how close I was knocking of death’s door.
Covid had hit and I was left alone to wonder and make all decisions under these conditions. Who was there for me??
Unknown number of failures at this point had occurred but no one seemed to care. I was sent home with a pic line and I broke out in a rash and hives all over. They came in and said it must be the dressing to the pic line,
They changed it and sent me home packing.
I wanted to skin myself alive.
A couple of days later a nurse arrived and due to her due diligence she realized that on the exact day I was being discharged someone had change my intervenes antibiotic and that was the cause to my misery.
I spent many days with no returned calls as I laid sick in bed, unable to move, unable to breathe, and in pain without being able to think clearly., How was I supposed to make life saving decisions or comprehend all the details that at that point sounded like jiberish.
I don’t know how I did it, because at every turn, I was just a number. My disbelief was overwhelming that I lived in this type of world. When professionals said it would be done by 5- at 5:05 I was on the phone to follow up, only to realize they had forgotten all about me. The system is broken.
6 years prior, I re-encountered an old trauma that sent me spiraling out of control. I lost myself, battled a deep depression, I imagined conversations that never happened with people, and feared going outside during rain and darkness. Years prior I had been mugged and strangled from behind as I walked with my daughter for a gold chain. I still can hear his sneakers squeaking from the rain as he approached us.
I was eventually sectioned to a mental hospital.
I was diagnosed with Major Depressive Disorder, Anxiety, PTSD, and With a Sleep Disorder: Sleep Deprivation.
I was on the brink of ending my own life.
This turned into a blessing.
I cleaned up my life. I stopped drinking, I made better choices and removed the toxicity of people in my life. Those that take, take, take til u have nothing else to offer. I was amazed by my journey. I became and still am the best mother I can be.
I wish I could say that things got better.
I learned that left in long periods of agony, fear and stigma could make even the most sane insane.
One day I received a call and that call changed my life, I had Finally found someone that believed me. I did not have to prove I wasn’t a drug addict or was made to feel that my pain was imaginary. Or better yet, because of my tattoos, piercings, and color of my skin I wanted to exploit the system.
To this day Out all my doctors only one person came to understand that we are all not text book. The same dose doesn’t apply to all. Why are doctors still not grasping medication tolerance and pain management?
Advocating was not my weakness and so many times I failed.
I am a proud, educated ,Latina and my complaints fell on deaf ears. I now know the truth and walking away has never been an option for me. My community is suffering and being left behind due to lack of personal or systematic education, language barriers, awareness of rights, and affordability in the medical field.
The picture you have been viewing was taken one week before my diagnoses.
This picture is what remains in remembrance of who we were and the dreams that were left behind.
My journey began April 1st 2020 and in five short months I was challenged by Septicemia leading to septic shock , pulmonary emboli, necrosis, loss of my breasts, Staph complications, renal failure, seven surgeries, and someday in November one week after the celebration of my last Chemo treatment my wife left with our youngest child.
I try not to focus on what this disease took from me and realize what it showed me I am capable of.
One day I received a call and that call changed my life, I had finally found someone that believed me. I did not have to prove I wasn’t a drug addict or was made to feel that my pain was imaginary.
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