Thursday, February 18, 2016

Women with disabilities need cancer screenings and tests

This morning I read an article titled Women with disablities are more likely to die of breast cancer.  I read it and everything makes perfect sense. I lived and experienced it first hand and the struggle is real.  I'm hoping that my experiences will help educate and inspire more people to get mammograms and Pap smears when they should.

As the article had mentioned that some people with disabilities are under the impression that because they already have a disability what is their chances of having cancer too? I used to think that way in my twenties, but as I got older, I learned cancer doesn't care.  Cancer doesn't care if you're a baby, a five year old, a highly school student or just starting out being a mom. If cancer doesn't care about a child, it sure isn't going to care about your disability.  You might think you aren't strong enough to handle both a disability and cancer, but you are.  You're strong enough to handle anything that comes your direction.

Getting mammograms and Pap smears are the two dreaded things all women hate.  But we must do it to live longer.  Women with disabilities find it even more of a pain. I have spastic athetoid cerebral palsy so sitting or laying still is impossible.  Also, dealing with medical staff is also infuriating. But you know what, if more women with disabilities would go out and get these tests, the more educated medical staff would be. Also, they would be more opt to push for lowered examination tables and accessible mammogram machines.

If a medical facility only sees less than five women with disabilities a year, then they aren't going to learn how to better serve us.  We need to be out there educating, advocating and staying healthy.  It won't happen over night, but it will happen.

I started getting mammograms at 35.  It wasn't easy. My personal care attendant had to hold me and position me in all kinds of weird ways.  I could've put it off. However, I have family and friends to live for plus a daughter then. Now I have two children to live for and want to raise.  I'd feel really bad and dumb if I died because I didn't take the time and patience to get tested.

In October 2015, I went for my routine mammogram. The dressing area was ridiculously small for myself and my attendant to help me. We laughed and did it.  The women who did the mammogram were ok.  One was nice and the other just seemed annoyed by it all.  In the end, she decided to talk to my attendant instead of me. The mammogram came out incomplete and I needed another one.  I went to another facility who was a whole lot nicer.

I went a few days before Thanksgiving. I had a pretty bad cold but it was manageable with cold medication.  This facility was so much bigger.  The dressing area was bigger and the staff was nice. A few tried to be overly nice but I rather that than rude.  We did the best we could again with the mammogram but then they said I needed an ultrasound.  I'm very happy my wheelchair can tilt back because I was able to stay in it.  The room was hot and all I could think of was an ultrasound for being pregnant is far more fun.

The ultrasound took her time and then called in a doctor.  When they call in a doctor, you begin to realize that this could be a bit more serious.  The doctor was nice and told me that something wasn't exactly right and I should get a biopsy.  Not what I wanted to hear before the holidays.  I made the call after the holidays were over. I only told close family members, my best friend and my husband.  I didn't want to worry everyone until we knew it was something to worry about.

I ended up going to see Dr. Fox because he could see me faster than anyone else suggested. When I first went, I was freaked out a bit because his office was at a cancer center.  It was just a bit of a reality check.  The office was dimly lit and full of people.  I wondered how many of them had cancer not knowing that shortly I'd be in the club.  

The staff was nice and treated me normally. The nurse got a kick out of how well my attendant and I got a long,  When I first met Dr. Fox I wasn't so sure how I felt.  He started off only talking to my attendant but when she didn't answer, but I did, I think he got the idea that I'm a woman who can talk for herself.  He examined me, and looked over my tests.  He didn't think I had cancer and instead of putting me through a biopsy, he suggested a more intense mammogram and ultrasound.

After hearing that, I felt relieved. I didn't want another mammogram but it beat surgery.  We scheduled it quickly to get it over with.  This one was now at the hospital. Again, I tried the best I could to be as still as possible. They took another ultrasound and it was then determined that there was something, although small, to be looked at closer. The doctor on duty recommended a biopsy. My heart sunk after hearing that news.

Then a few days later, Dr. Fox called wanting one more mammogram to make absolute sure!  I wanted to scream. He suggested that I take muscle relaxer beforehand. My mom called the doctor as well. My mom is one step from being a nurse practitioner and she used to be a radiation therapist so she knows a lot about this stuff. He explained that he just wants to be very sure that I need a biopsy.

So, I took muscle relaxers that made me very tired but honestly I don't think it made a difference. When my body feels pain, it reacts and I can't help it. So, once again it was determined finally that I needed a biopsy.

Due to red tape, it took a bit to schedule it but finally did, the last Wednesday of January.  My mom and husband took me. It was the Wednesday after 30 inches fell but that morning it was raining and warmer. Laura had a two hour delay and she wasn't happy that I wasn't there to see her off to school.

Before the actual surgery, I needed a wire put in place. No one told me that. Also there was a mix up in my blood so they needed to draw it again. That left a nasty bruise afterwards! Getting a wire in didn't hurt but I could feel the wire in there and that wasn't pleasant. The idea is that the surgeon pulls the wire out when they do surgery. It guides them to the mass.

You can read more about my 
Breast Cancer Diagnosis

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