Life and
Lymphoma
10-18-2012
I’ve been sitting here for days
trying to figure out how I was going to put into words the disappointment I
feel. I never knew the extent of discrimination I was about to endure in the
months following my diagnosis of cancer.
Let me start from May 2nd
2012. The day I sat in that small, stuffy office, crammed in with my mommy,
Dahel, and my daddy. When the surgeon walked in I knew I had two outcomes.
Surgery, to remove a 5.4 centimeter mass located in my chest. Or cancer. I
really don’t remember breathing the entire time he was talking. We all know
doctor’s talk is equivalent to trying to understand a foreign language. The
only actual word I heard and remember is “Hodgkin’s Lymphoma.” I’m sure the
blank look on my face made him say “It is cancer.” From that moment and
probably for the next week I remember nothing that happened. All I can recall
is many doctors’ appointments, followed by a number of procedures at the
hospital, and a good bit of anesthetics.
Once my mind snapped out of shut
down mode, and overwhelming calls, texts, emails, Facebook message, and get
well cards subsided, I finally snapped into, oh “holy moly” I need help
financially. Welcome to the World Wide Web. Hours and days were spent searching
webpage after webpage. I was ready for anything at this point.
Discrimination #1. First stop on
the list. Medicaid. As a recent college graduate, with student loan balances
totaling that nice Audi I have always dreamed of, I could not afford the
medical insurance my job was offering. So medically I was uninsured. I Googled
the local Medicaid office and decided to pay them a visit. Let me just be real
about this “office,” we walked into a trailer in the middle of nowhere. I
remember the musty smell, and the AC window units, and thought “oh dear god.”
They sit us in this small waiting room, now that I am thinking about it I am
pretty sure it was a hallway with a door added somehow. I am really not sure.
Thank goodness there was no one else in the waiting room. Ironically we still
waited like 25 minutes. The lady we needed to speak with was getting a cart
full of files and didn’t even know we were sitting there. So we sat down at the
desk, and explained my situation. Seeming like she didn't even care about the
story I was telling her, she pulled out a small piece of paper and went through
five questions. (Source: www.scchoices.com)
1.
Do you have children under the age of 18?
a.
No
2.
Are you 65 years of age or older?
a.
No
3.
Are you blind or totally, and permanently,
disabled?
a.
No, I'll explain this when I get to the
disability option
4.
Are you under the age of 19?
a.
No
5.
Are you a parent, or caretaker, relative living
with a child under 18 (low – income)?
a.
No – you asked me that in question number one
“Based on these answers, you are you are not eligible for
Medicaid. Here is the number and contact information for disability; they may
be able to help you, sorry good luck.”
Hi ho hi ho, off to the disability office I go.
Discrimination #2.
Five main factors of Social Security disability:
(Source: www.socialsecuritydisabilityhelp.ws)
1.
Must have worked five out of the last 10 years –
Yep
2.
Under age 65 – Yep
3.
Disability must have lasted, or be expected to
last, longer than 12 months, or is expected to result in death – To SC No. I
will explain this in greater detail soon.
4.
Unable to perform work activities or maintain a
work-like schedule. Fully no, thankfully my treatments are every two weeks. Can
I work my 40 hours a week? No, and I have financial obligations to continue
living, these obligations are based off my 40 hours a week paycheck I get. Does
my monthly gross pay of less than $1200 allow me to pay my bills plus the $7000
for a chemo treatment? Absolutely not.
5.
Must provide medical evidence that supports your
claim. I.e. A doctors note
Wait a minute, that last statement triggers a glimpse of
hope. This is when I find out that Hodgkin's Lymphoma is generally not expected
to last more than one year. Yes that is my glimpse of good news. At this
particular moment that is not helping. My doctor explains to me the outline of
a "typical" Hodgkin’s Lymphoma case. Because every case is different
they have to abide by general guidelines. I don't want to see my doctor commit
fraud. I'll figure this out I always do.
So the next few months I turned to my family, friends,
co-workers, and even acquaintances. So many people wanted to help. For a couple
months we had meals prepared for us from friends just offering anything they
could. The doctor’s bills we will have to figure in later. Right now I just
needed to prepare myself for treatment and being able to stay financially
independent. Over the course of my first four months of treatment I was able to
raise enough funds to keep my apartment, pay for basic living necessities, and
also pay slivers of the medical bills that just kept doubling. It actually
worked out that I ran out of funds around my last scheduled treatment. I planned
to return to work almost full time while I waited for my CT scan, and waited
for my news of my remission.
Let me backtrack to discrimination #3, although,
discrimination really isn't the correct terminology here. Let me just say a
stroke of bad luck. Back when I was in the middle of testing, scans, and
doctor's appointments, the assistant manager at my job put in his two week
notice. Finally! (No disrespect to him) I knew it was my chance to be promoted
in the company. My boss even vouched that I was ready. Unfortunately, three
weeks before he left is when I found out it was in fact cancer. As an assistant
I had to be available 40 hours a week and at all times if a problem occurred.
Clearly that wasn’t a commitment I could make. Business life had to move
forward; unfortunately I couldn't go forward with them. At this point I’m
heartbroken for the last year of hard work I put into that place. I guess we
can say that wasn’t the road I was supposed to take.
Alright, so now we need to get back on track of my
remission and returning to work.Monday, September 24, 2012, my first day back to work as a full-time employee. I won't call this discrimination either because that is incorrect. We will label this life blow #4. I walk into the office 8 AM still feeling a little tired and lingering nausea, but glad to be back into my normal cancer free life. As soon as I enter the office door there sits my regional manager. Oh boy, what happened while this gone? He just doesn't fly into town from Jersey to say hey. I sit down, get settled, we all have small talk about how I'm feeling and things seemed to be going good. Wrong! "Hey Sam, can you shut the door I want to have a chat with you." Oh my... This cannot be good. After a few minutes of "business" talk, which only brought me back to my doctor talking in words I can't spell, I heard the words I did understand. "We had to sell this location to another company, as of October 18 you will no longer be working for this company, out of this location." Once again the blank stare and tears I was trying to choke back. He quickly added, "We would like to keep you and if you are interested we will find you a position at another location." Okay, I can handle this bad news, there may be hope. Plus the new company was also offering the people in the office the opportunity to stay, if they chose to hire me. My boss did put up a good fight and requested if she stays she wanted me as her assistant. At this point I still couldn't commit because I was not finding out my remission news until October 5th. Once again business life must continue.
My boss ended up
relocating because the new company could not give her equal salary. I'm not
going to lie the company I worked for gave me options, all of them put my life
path on a relocation to Florida. This decision rested on the results of October
5, 2012.
October 5, 2012. "The good
news is the chemo is working and your mass has shrunk by 1/3, I think with four
more cycles of chemo and maybe a few weeks of radiation, we will get that
remission." It was good news, but still disappointing at the same time. I
never prepared myself that I may not be in remission. I believed it was gone
with my mind, body, and soul.
Discrimination #5. The one I can’t prove.
The
new company runs the business a little different. They only need a manager and
assistant. And possibly one temp position that would last about a month. I
guess that was to help finish the transition. After two weeks of not telling
anyone anything, or honestly no one telling me what in the world was going on.
I find out the location manager from Greenville was hired as manager and the
current assistant (who got my position back when I was diagnosed) was being
kept as the assistant. The other three girls in the office (including me) were
left to basically fight for the temp position. Besides my boss that relocated,
I was the next person in that office working the longest. The assistant had
been there four months, the router probably eight months at the most, and my
fill-in replacement worked three months. Not one person from UST even spoke to
me about a position. I was never considered as a candidate for the assistant or
even manager position. What's more degrading is I wasn't even given the temp
position. They didn’t even tell me about it. The only reason I knew about it is
because everyone in that office talks. I literally cried for days, even knowing
I couldn’t accept the position of management without a label of remission, I
was 100% heartbroken that no one cared to find out what I've done for that
place in the past year and a half.
Next step: at least I qualify for
unemployment. I worked every last day I was scheduled to ensure no one could
deny me this right. I put in my time. I know it won't be much but anything will
help at this point.
Discrimination #6. After completing
my contract with work, up until I started chemo again. I put in my application
for unemployment. A question on the application puzzled me, but honestly I
didn't feel worried. "Do you have any circumstances that prevent you from
seeking full-time employment? i.e. “health issues." Checkbox marked yes.
Please explain… In the tiny box limiting my characters to 500 I explained as
short as possible the last 4 pages you have already read. After completing my
application and hitting the submit button, "oops” red letters.
"Thank
you for your recent application, we see that you indicated you have a medical
condition preventing you from seeking full-time employment at this time. As a requirement
of South Carolina unemployment, all applicants must be able to actively seek
full-time employment. Please allow up to 10 weeks for a final decision."
Jaw dropped – are you kidding me?
Down to the unemployment office I march. I need to speak with someone, in
person, a real-life operator. After cramming into the office, where there were
about 50 waiting people scattered all over the place, I finally found my way to
the information desk line. I explained what was said when I submitted my
application and explain my situation and asked "what can I do?” “Well if
you can't actively seek full-time employment then there really is nothing we
can do." Thank goodness I prepared myself for those words or I would have
started to cry. “Come back Friday and you can speak to someone who deals with
disability." And the circle begins again. The results of this
discrimination are currently pending. I do have quite a few people ready to
dial the news on this one, including my doctor's office.
Having and fighting cancer puts a
tremendous amount of stress, not just on your body, but your mind as well. The
last thing anyone fighting cancer should have to deal with is the past six
things I have dealt with. Anyone on this similar journey is fighting their
unique battles in this. This is my story. Some of the roads have been
unavoidable; others are just a disgrace to the society we live in. I know there
are more people out there who are in this same boat. You're not fighting alone.
I know somewhere out there someone will read this and be touched enough to help
me make a change. I don't want any handouts; I just want to help where help is
more than needed. I want my voice heard, and I want to make a foundation that
will help others in this kind of situation. I won't stand to see another cancer
patient struggle because the government won't help. I did everything the
government and society preaches we should do. Finished high school went on to
college, graduated and found a less than mediocre job for a college graduate. I
didn't have any kids during my teenage years, which in today's society will
qualify you for help. Finding out you have cancer at 25 than being laid off,
doesn't qualify anyone for help in this state. One day I am going to change
this; somehow, I'm not going to let you down.
Princess Cancer Warrior
