Tackling a Racial gap- The war on black women –

We’ve heard a lot of talk about the war on women, and without delving into that long discussion I want to point out to you a war and racial gap that needs attention. A recent New York Times article, Tackling A Racial Gap in Breast Cancer Survival talks about the significantly higher likelihood that black women will be diagnosed with late stage breast cancer and succumb to the disease. A number of factors are relevant, including the likelihood of Triple Negative, which I have spoken about before. But also, economics, lack of regular medical care, etc. The article was particularly close to home, as my husband is from Memphis, we have lived there and still have a large number of our family living there.

So again, we must be informed and educated. We need to take an active role in the health of our family members. Ask questions, offer a ride to an appointment, sit in with an aunt or parent or grandparent so that you are able to support and offer additional ears. But be mindful of your community and not silent and scared. We owe it to ourselves to be educated and fearless.

Celebrating in October

October is known as Breast Cancer Awareness Month. You see tons if pink everywhere. I’m also a fan of donning my pink, not necessarily breast cancer specific, but pink. Nevertheless – while growing up October was birthday month. Not mine, but Mommy’s. She was known to celebrate the whole month, a dinner here, lunch there, all for her birthday!

Well in honor of her and the month, I wanted to bring those who knew her into the discussion. I must say that writing this is very cleansing and maybe it will be for you too. So here are two questions:

1. What did your relationship to Mable mean to you.

2. How did you feel/react when she told you about her breast cancer.

That’s all! Email me at lightningsflower@yahoo.com

I’ll pull it together as part of her birthday celebration this month! And if you prefer to remain anonymous, just put it in your email (though it might be anyhow- haven’t figured out my format yet)

Peace love and laughs!!
Marquex

Treatment

I was putting up my daughters’ exam paperwork from their pediatrician visits a couple days ago. In the same folder I have the notes from one of my mom’s doctors from her CT scan. Mommy had them fairly regularly to see what was happening. At this particular time she wanted me to talk to her doctor because there was a lot going on and she wanted me to ask the doctor any questions. (As I mentioned before, she did that often) Plus, in general, it is always good to have someone else talk to your doctor- extra ears in case you miss something. Well, there were a lot of things that needed to be done. I try not to bash medical professionals because many do a great job, but there are so many pieces to the puzzle and so many actors that things get confusing. When you or a loved one is going through things, it can be a bit frustrating. We were supposed to make appointments with a cardiologist, a neurologist, and of course the oncologist. Meanwhile, every call to schedule resulted in the same rundown of questions, confusion on what was needed, and of course many many minutes on hold.

I must admit that I can’t share some ah ha moment, or some simple solution to how to deal with this. I can say that if possible, have someone other than the patient handle the calls and questions. Also, get a medical power of attorney. In a world of privacy and strict procedures it is very important. And just be prepared for a bit of frustration, but remain persistent. It will seem like a lot because it really is. And in all the stress, try to be nice. Yes, some people will not deserve it, but being firm and friendly are not mutually exclusive. My mom always said you get more with honey than vinegar. Sometimes I wondered why she would give people so much unnecessary information, or at least I thought it was unnecessary – but she was building relationships and often got that quick call back or extra something in a maze of craziness.

I’m not the most open chatty person, and maybe you aren’t either. But sometimes I think, What would Mommy do?” It’s usually the last thing I would think at that moment, but when it comes to someone doing that little something extra, Mommy sure knew how to have that effect on people. Probably because she was always doing something for someone else too. That’s another post all together, but stay tuned.

So again, WWMD, What would Mable do? Give you a long shpiel (or however that is spelled) and make a new friend/ally!

Be your Advocate

This is a brief reminder of how important we are in our own care.The medical profession is very interesting. It is one service where we somehow don’t see it as a service. Meaning, often times we don’t demand the care we want. Now this is definitely not everyone, neither is it for all doctors, nurses, or other medical staff. I have had very good physicians of my own and encountered some very good doctors providing exceptional care to my mother. She had the frequent habit of having her doctors call me and explain what was going on or for me to ask questions. (As a side observation, though I don’t ask extensive questions in personal relationships, I always have a list a mile long for doctors.) Well this particular doctor would give me extensive detail to all my questions. I wish I could remember her name, and I can clearly see my mom trying to remind me as I write. Like I said before, I am now learning additional questions I could have asked, but that’s the point of this blog.

Well, my point is this. You are your advocate. We think that training means the doctor knows best, but you must ask for the best and not sit as a bystander in your healthcare. If you don’t like your doctor, get a new one. You are paying them a really high rate for a service, so very good service is what you should get!

With that, enjoy your Labor Day!

Why this…

I decided to start this blog and its subsequent foundation for my mom and for myself. She often talked about ways she wanted to help other women in her situation. She liked knowledge and the sharing of information. She talked about things she learned and would give full recaps to share the info. I went through some of Mom’s notebooks and found a wish list. She wanted to start a breast cancer foundation. Well, I decided to do it for her- but I knew I needed to do something different. My husband and I discussed the idea, and initially I couldn’t decided what it would be about- how it would be different.

As I started to look back at her treatment, things started to pop out. One time she talked about her mastectomy, telling me how if people knew everything they wouldn’t potentially get them- particularly how she thought it would significantly reduce her odds of a recurrence, yet her 2012 self wasn’t so sure. Looking back I missed the opportunity to ask her more about why she felt that way. Of course now I won’t know, but maybe putting that out there will make someone think harder about it. Mommy had triple negative breast cancer, which is more complicate and aggressive as they don’t understand it as well, so treatment options aren’t as tailored as some other subclasses of breast cancer. Yet, recent studies have identified genes that may be targets for triple negative therapies. This would significantly impact treatment options and chances of recurrence. We are learning everyday!

I then thought of one of the times we were in the emergency room. A resident came in and casually mentioned the cancer on her lung not being a problem of concern, only the brain metastasis. Well, Mommy didn’t know the cancer was in her lung – so clearly she was heartbroken. I wanted to slap the doctor in the face with the clipboard, but instead I gave Mommy some comforting words that I don’t remember now. We hugged, but I could see the fight seeping out. She was here because recent labs didn’t look good and she hadn’t been eating well, now this! I immediately looked at her records when I got home to find out that in fact her records indicated lung mets, but they were stable so it was not referenced in her regular oncologist appointments. I later found out from speaking with her doctor that stable cancer was usually not spoken of with someone with Stage 4 metastatic cancer. They were only worried about the areas not in control or unstable.

These were just a couple of the things we didn’t know. I know many people are probably in the same position, so in that I found my muse. I would focus on education. I would continue the fight against breast cancer. The fight to find a cure. And how best to arm ourselves, but with knowledge. Knowledge is power, and knowing about your particular cancer, your treatment options, why some options will work and others won’t, is all part of preparing.

Finally, I started it for myself. My healing process. As I mentioned before, I found out I was a co-survivor only 3 months before she passed. I never thought about what help I might need. I had my husband’s shoulder to cry on, which I did many times. But come morning, I was back to business. Co-survivors go through struggles as well, not just from a caretaker standpoint, but from feeling helpless. You try to be optimistic, but you don’t know what will happen. There is a painful edge, your walking across a rickety bridge suspended over a canyon. You pray you will make it across, but you just don’t know.

In all, I owed it to her to keep her alive. I wouldn’t replace those last six months with her for anything in the world, except more time with her. But this keeps her in my mind and on my lips, not just a memory.

So with that- share the love, a hug, and most importantly a laugh in Mable’s honor. And stay with me on this journey.