Featured Friend Friday - www.WhitleyBrooks.com

Hey honey bunnies!

Today’s featured friend post comes from one of my very best friends,*Noelle.

That’s Noelle.

*I’m going to be changing most of my friends’ names in my posts, but each friend will maintain same alias whenever they are discussed.

Noelle and I met in undergrad and like my other close friends from college, we clicked instantly. I love her because she is caring, supportive, smart and beautiful inside and out. We live on opposite sides of the country now, but we remain close.

Noelle is a great writer and storyteller and has an awesome idea for blog, but I can’t convince her to do it. To get me to stop badgering her she agreed to write a featured friend post from time to time.

Her 1st post is about a very serious topic, breast cancer. October is Breast Cancer Awareness month, however this is something that should be discussed and emphasized all year long.

Noelle’s Story:

I had a health scare. Or maybe it was more like a wake-up call.This particular year, just like any other, I went to visit my gynecologist for my annual exams. I get a pap smear, pelvic exam, STD panel and a breast exam. A breast exam…

Now I had to admit to my doctor that I hadn’t checked my breasts for differences each month, after my period as recommended. I’ve always thought I was way too young to have cancer anyway. So why bother?

But this time, as she is feeling for irregularities, her face grows concerned. She asks more questions. Takes a step back riddled in thought. She scribbles in my file and the next thing I know I’m making an appointment with a breast specialist. I felt the lump she felt but, I hadn’t assumed it was all over either. But there were concerns.

Several years ago my mother had breast cancer. I had just recently moved back home after graduating from college. My mom cooked dinner and invited all of my siblings to come eat. This wasn’t particularly all that unusual… except it was the middle of the week. We laughed and talked, as usual. The kids played loudly, as usual. And then she wanted our attention. During a self examination she felt a lump the size of a pea in her left breast. It was imperative to get it biopsied and for treatment to begin.

This sobering announcement made us all look at each other in disbelief. But, it was real. Then came the barrage of questions: When did she find out? Did she know for sure it was cancerous? What were the next steps? Had she already gone for a second opinion? We all saw what she felt on sonograms, in diagrams and the day they wheeled her into surgery for the biopsy.
That was 2005. Now in 2009 I have my own battle to face, a mammogram, sonogram and biopsy to undergo. I walked into The Breast Center and St. Jude hospital I noticed all the silver haired women sitting patiently in the lobby for the doctor.

They tried to make the waiting rooms as homey as possible: Women’s Home Journal adorns the large round table along with a pot of cute pansies in the middle of the table.
The dressing rooms are not unlike the ones you’d find at a major department store except the come with hip length changing gowns with brightly colored flowers and an open front. Deodorants of all kinds, in several different scents fit neatly in a basket on the plush changing benches.

The waiting room also has lockers. The wrist coil key holder is decorated in a festive bright color. On this particular visit the ladies from The View are chatting about the latest “Dish”, as I wait for my mammogram. Once the mammogram is complete I am informed that the test was not readable. Apparently young, non-lactating breast are too dense for the mammogram machine to show the lump. But, since insurance companies mainly run the show and determine who gets what treatment and in what order, its part for the normal procedure. A sonogram has to be conducted before the doctor recommended MRI can be considered by the insurance company.

The MRI machine is a loud, clicking box that takes photos of human tissue. In this case it my breast tissue it will need to take photos of. But, I won’t know about how noisy the machine is for another 5 weeks. My insurance company has decided that the MRI is unnecessary for a woman my age and approval for this procedure will require proof and the doctor’s written recommendation… Now I’m officially on pins and needles. I work every day. Pay my PPO insurance and sure enough when I need it they block the testing. I’m sure this is an expensive test. But, don’t I have the right to be tested properly?

5 weeks later they grant me that right and 4 weeks after that I’m at my biopsy appointment. The nurse escorts me to a small room with a sonogram and a small table covered with a thin sheet with what I assume to be the instruments that will be used for my biopsy. When the doctor comes in the sheet was covering several long, thick biopsy needles that almost made me faint. The nurse is a kind lady that spread clear warm goop all over the side of my left breast and gently presses the sonogram over the skin. The area is numbed and the thick needle disappears into my skin. They both press down as hard as they can to make my breast flat. Then I feel a sharp pain and hear a clicking sound that lets me know part of my lump has been cut to be placed in a bottle for further review.

I go home bandaged and feeling heavy. For the next two days I sleep, ice my breast, sleep some more and take aspirin for the pain. Repeat: sleep, ice, sleep, aspirin, repeat… A week has passed and still the results aren’t in. I have time to panic and research my options in case the results are positive. I come across the Susan G. Komen foundation website and it tells me this: the federal government allocates more than $900 million each year to breast cancer research, treatments and prevention and the five- year survival rate for a breast cancer patient has been extended to 98% compared to 74% in 1982. We live in a time where it’s possible to have options. Treatments and breakthroughs allow us to still live life to the fullest.

The day I go back to the doctor for my appointments an older lady is standing in the hall. Several other women are with her but I don’t know their relation to her. I can see the top of her curly red hair, her face is buried in her hands and her body visibly shakes. A girl about my age emerges from the examination room I assume this lady was once in. She and the other two ladies envelope the red-hair women in their arms. Even the nurse is moved to tears and joins the hug. The lady’s eyes are full with tears and her face is as red as a tomato. I witness all of this as I slip out the front door to the lobby. But, I wanted to turn and remind her that she has options and it’s possible to survive.
It’s possible to survive…

This is my awesome friend. Yesterday, on World AIDS Day he wrote a piece that allowed him to open up and share with the world. I asked him and he said that I could share it with you honey bunnies.

So, nearly 6 months since I posted anything on the original blog.

Having said that, I’ll be try to be concise as I can while I write this post. To put it bluntly, I am living with HIV and have been for some time now. Part of the reason I chose to write this post is because of World AIDS Day and the fact that I’ll be volunteering in some activity to help PLWHA – myself being one of them. I was diagnosed in 1998 and for the last 13 years or so, I had been very fortunate to not need medication as my body’s immune system had done a pretty good job keeping the virus in check. That all changed this year though; after many doctor consultations and discussions with friends who are HIV specialists, I elected to start HAART. I chose Atripla, which is one of the medicines that combines three classes of Anti-HIV agents into one pill.

To state that this process of taking medications (which I will now have to do for the rest of my life) has been an adjustment period would be an understatement. It has required some lifestyle changes as well as some outlook changes. I am fortunate to have a pretty good working knowledge of pharmacology as well as close friends who are stellar physicians. As long as I continue to take care of myself and make my health a priority, there is no reason why I won’t be able to live a productive life and accomplish all of the things I have purposed myself to do. This post is a bit cathartic in that it allows me to publicly declare my comfort with something that used to cause me much pain, angst and shame. It’s almost as if it is a second coming out and one that allows me to be free from my own judgments about what I considered a shortcoming. It allows me to function in complete honesty and candor about myself. Such is the case with self-acceptance and for that I am completely grateful. For anyone who may be missive of the psychological toll HIV takes on a person who becomes infected, it’s real and traumatic.

Another reason I chose to write this post and expose myself is related to the stigmatization that accompanies HIV disease. People still think of it as something that people get when they are behaving badly and to some extent, that’s right. If I had never engaged in unprotected sex with a person who was HIV positive, I would have never become infected. I did though; and I am though. However, the same can be said of lung cancer patients who are chronic smokers or the morbidly obese who suffer from hypertension and diabetes and continue to over eat or eat poorly. Others see HIV as a disease that prompts an almost permanent relegation to victim status. I don’t. They feel that HIV positive people shouldn’t have to be held to the same standards as anyone else who lives with and trudges through adversity. Let me be clear though, I still believe in the need for programs that are dedicated to improving the lives of HIV positive people, particularly since discrimination against people living with HIV is still prevalent. I think that after 30 years of this epidemic though, that their needs to be a push to focus on improving the lives of PLWHA through reinforcing the right to self determination instead of depriving them of it.

When I used to work in HOPWA housing too many people developed an over-inflated since of entitlement about many programs. Their idea was that the government owed them something as a result of becoming HIV Positive. At the beginning of the epidemic, when people were losing their jobs, homes, and social supports – all because of HIV infection (actual or perceived) it was absolutely necessary to create programs like those funded through the Ryan White Care Act. As a result, those who truly needed the help had to be turned away because those who could lead more independent lives chose to do otherwise… and were convinced that they were consummate victims and that their HIV diagnosis precluded them from being contributing members of society. I resented them for it because I have lived with the same disease for over a decade. I managed to put myself through college, matriculated with a BS degree in Biology and a minor in Chemistry, worked full time, maintained my own apartment without assistance from any program and did so because I’d have felt guilty siphoning resources that were already scarce and need by someone else who desperately needed them. I have seen people lose housing vouchers for failing to pay their portion of HOPWA rent, abuse food stamps and food voucher programs, or lie about their income to qualify for resources that weren’t eligible to receive in the first place. And whether you agree or not, these things reinforce HIV stigmatization more than any person’s belief about the disease.

HIV can be a disabling condition, but it does not have to be. And my diagnosis as an HIV positive person does not abrogate me from my responsibility to society to do everything I was doing prior to getting infected – to be a contributing functioning member of my community. It also means that I take a special interest in trying to prevent the spread of a disease that has devastated the lives of so many people. So while I commemorate World AIDS Day on Thursday, December 1, 2011, I do so hoping that HIV positive people take the lead in making changes to many of the programs that support HIV positive people by empowering them – not hobbling them by stigmatizing them as victims.

I had an interesting conversation with one of my professors about that changing landscape of HIV activism. She made an interesting argument about how the Breast Cancer movement was able to build itself out of removing shame and stigma associated with the disease, to one that empowers breast cancer survivors. How can we as HIV positive people do the same thing? How can we move forward? When can we celebrate AIDS in the same fashion we celebrate breast cancer?

I solicited a few thoughts from close friends of mine who are also HIV positive and the reponses were overwhelmingly positive, but still affected by stigma. I was going to publish them here, but will save them for another time because I want to tell their stories. For now, in celebration of World AIDS Day, go get tested. If you are positive, keep living life.
Things can only get better if you have an absurd determination to live.

What do you think? How can we get more people to be tested and be smart? What will it take to remove the shame and stigma?

You can follow him @BLKSeaGoat and check out his blog here.

Archive for Featured Friend Friday

Featured Friend Friday: The Left Breast- Cancer Scare

Featured Friend Friday: Thoughts on World AIDS Day: Moving From Shame to Acceptance