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>> I felt this ever worsening lump in my leg,
and it wasn't getting better.
I finally went in for an MRI,
and we found out that there was a soft tissue sarcoma.
I just remember this feeling of utter dread.
Everything gets cold and dull, and it's scary.
It's scary to find out you're facing cancer.
It doesn't feel real.
It just feels like
this wrecking ball that just takes away everything.
It's just very difficult.
I went through six surgeries.
I was in the hospital for about 50 days in the last two years.
Last year, I was going between
a few different cities and specialists,
and I didn't feel like anybody had the entirety of my case,
and that was very frustrating for me.
I want to know what my blood levels were yesterday.
I want someone near me to know.
I want to know what the next step is in my procedure.
I want to know that likelihood that I'll be okay or not okay.
I came to Sibley and just said, hey,
I need one place with all of my care,
and I felt like I needed a team
that was like we've got this for you.
We're going to go do all the research.
We're listening to you,
and by the time they walk in your room,
everybody already knows what the latest is on you.
I just really felt like I could
get the 360 degrees of care that I wanted over here,
and I think that helped me stress less,
and I think that's led me to some better outcomes.
I also think there's a difference in the approach to the patient.
They really are focused on how
I feel in addition to just what's going on.
There was follow up with my social worker.
There was always this check-in.
Regardless of what your prognosis is or what the outcome is,
you should still feel like a human and
your emotions should be at the center of how you're treated.
That for me was really, really
important in terms of coming to Sibley.
One of the other pieces of advice I would give
is having no fear of asking questions.
If your questions are dismissed,
go to someone who doesn't dismiss your questions.
But every question you ask is valid.
I'm a black woman. I'm a black woman of size.
In the medical community,
our questions are not often heard,
and are not often validated,
and our concerns are very minimized.
So I think that one of the things
that I found really important is to make sure
I'm in a place also that's culturally competent and is
focused on treating women like me.
Because sarcoma is so rare,
this is something people say all the time.
You need to get more than one sarcoma specialists
looking at your case.
If you are able to go to the best centers
possible in your area, do that.
If you're able to get people on the phone who know
sarcoma, do that.
I really wish that in January of 2019 that I had
two doctors who were
sarcoma specialists and
independent institutions looking at my case.
I think for other sarcoma survivors you are allowed to question,
and you are allowed to ask,
and you are allowed to push
because it's your body and it's your life.
Sarcoma is terrifying.
Outcomes are not great.
It's not an easy diagnosis to have.
Having my social worker [inaudible] literally anything off of
having somebody who understands the cancer journey,
has been really, really helpful for me.
>> That's what treatment can do.
>> When I was finishing up this treatment she said, hey,
give yourself some time to think about it not coming back,
or wake up each day knowing that anything could happen,
but today is a day that it hasn't.
But that was very freeing for me.
That really pivoted how I approached my treatment.
Last year I tried to keep my everything normal and say, oh,
I go to radiation at 7:30 in
the morning and I just have a normal day.
But through radiation, through surgeries,
through other obstacles,
other things that had to fall away,
and I think that's okay.
It's been okay to say I can't do it all.
I can only fight cancer today and that's enough.
Being single and living by myself,
I think that's just been challenging.
There's not one person who's
responsible for taking you to your appointments.
There's not one person who's responsible for
looking at this alongside you.
But I think I'm very fortunate to have
a big village and a big family that knew that
everybody had to chip in in a different way and so nobody
was completely charged with taking care of me all the time.
I don't want to burden people.
I'm really independent.
I do things on my own when I can,
but I just became very emboldened about asking for help.
Other cancer survivors told me
this the time to ask for what you need.
Don't feel bad about it.
Just say, hey, I need groceries,
or can somebody drive me to this appointment.
Been surprised that the more I've asked both family and friends,
the more people volunteer to do.
So it wasn't as desolate as I think people would say,
oh, I don't have a partner.
I'm just really blessed and fortunate to have a village that
decided to show up and didn't really ask permission to show up,
but were just making sure I was okay.
Finding other survivors has been
the thing that has helped
my mental health more than anything else.
Found of Facebook blog that's with the sarcoma alliance.
There are sarcoma strong.
Knowing that people are going through
these steps and they're still here, they're still waking up,
is really important because a lot of
people see sarcoma as the end as a death sentence.
I think that meeting survivors or
even seeing their stories has helped me realize that it's not.
As I've told more people,
I've wanted to make sure that we had more positive experiences
together because I don't want cancer to be my story.
It's been important to be
myself as somebody who's fighting cancer,
not someone who's life cancer has overtaken.
It's obviously a big shift in pivot,
but there's still a lot of joy I believed to be found each day.
Its also brought me a greater urgency
about the things that matter.
I spent time with my nephews and nieces,
time with my family,
time with my friends.
You're allowed to feel however you want it.
But for me, it's been important to
not stay in a really dark place,
even when it's a tough diagnosis.
That's a lot of advice,
and bring chocolate for your nurses.
That's if you're in-patient.
That'll make you very popular very fast.
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