mailchimp

Jul 1, 2011

If I knew then what I know now

This is one of my favorite pictures. It was taken on my 30th birthday. My friends and I had an awesome time that night. Feeling grown up and sassy... we danced the entire night away.

My best friend shared this picture with me the other day -- I had not seen it in years -- and I found myself really drawn to the look in my eyes. (In case you didn't know, that's me in the middle) I remember feeling like I had finally arrived as an adult when I reached 30.

I'll tell you one thing though, I am surprised that I look pretty much the same after all these years. Well, the boobies are different and there are a few scars on my chest now that I didn't have before but mostly, I look the same. And I find that fascinating because I feel so "old" now. What I remember the most about this time in my life is that I was so worried about getting it right.

I felt that I was failing at life then. No matter what I did, I wanted to do it bigger, better, faster... I was really disappointed with myself. And sometimes (far more often than I'd like to admit) I still feel that way. Looking at this picture, I started thinking... what if I knew on that night, that about a decade later I would be diagnosed with breast cancer? That I would have to face the difficult task of electing to have a mastectomy, and going through chemotherapy... Would I have been a little more kind to myself? Would I have been more proactive with my health? Running a bit more, partying a bit less?

The interesting thing is that when I look at that picture, I see me but I don't really recognize myself. I am so vastly different inside and out now. In this picture, there is a sadness in my eyes that I just want to hug away because I had nothing to be sad about then. Just like I have nothing to be sad about now. Yes, I am a survivor and some days that feels like a huge weight. But the truth is that I am blessed.

If I could talk to my 30-year old self, I would tell her to relax a little. Take more walks. Breathe deeply. Try something new every week. Allow somebody to love you ... even if he's not perfect or doesn't match the vision in your head. And most importantly, check your breasts regularly. Yes, I really would tell myself to "feel on your boobies" because it is very important.

Back then, I felt that I had "Fabulous Boobies"... but I took them for granted. I didn't recognize that they were more than an accessory to be showcased. I was haphazard with my self-exams... like a lot of young women. Breast cancer is primarily a disease that happens to older women, so even though we may know that it is important we slack off. But I'm a witness that 3 minutes with your boobies, once a month makes a difference. Especially if you're a young woman of color. It matters.

What I didn't know at 30 is that women in their 20's and in their 30's do get breast cancer. No one ever told me that. What I didn't know is that when young women have breast cancer, they are more likely to die from it. What I didn't know is that breast cancer in young women is far more aggressive and difficult to treat than it is in older women. What I didn't know is that regular breast self-exams and a few lifestyle changes can actually make a difference. What I didn't know is that although young black women do not get breast cancer at the same rates as white women... when we do get breast cancer, it is more likely to kill us. It is more likely to be found very late stage. And the type of cancer that we tend to get is the most difficult to treat. I didn't know that at 30. But I learned it, when I was diagnosed with breast cancer at 39.

Now at 42, I am cancer free and happy about it. My life is drastically different and if I knew then that my life would be like this now, I probably would have broken down in tears. Because then I thought that it was the "things" in life that made life worthwhile. The right job, the right title, the right friends, the right lifestyle, the right boyfriend... etc. And now I know that its the things like... good friends, laughter, family and the ability to follow your dreams that make life worthwhile.

I never planned to have breast cancer. For all of the ways that this disease has changed my life in negative ways, it did one great thing. It showed me that I was far stronger and more capable than I ever imagined. And that all the happiness I was searching for out there... was never there at all. Its with me right now. See that smile? And that chick is a breast cancer survivor. :) 

Pink ribbon girls rock!

Know your body. Trust yourself. And show yourself some kindness...
http://fabulous-boobies.blogspot.com/p/new-here.html

Jun 28, 2011

...and in the end... you simply have to find peace in your circumstances



Back in November 2010, I was selected (along with several other breast cancer survivors) to participate in a photo shoot for a breast cancer company. As women do when we gather, we laughed and chatted and eventually we shared pieces of our stories with each other. We all were breast cancer survivors. Some of us had only been through it once, while others had fought the disease several times. For some of us breast cancer was our first time dealing with a major illness and others had dealt with other types of cancer and other types of major illnesses.

But, as much as I was a participant, I was also an observer. And as I watched these women in their varying stages of recovery and healing... I found myself wondering how would I react and adapt to life if faced with their circumstances? So... today when I read on the blog of one of these wonderful women, that her breast cancer has returned and is metastasized to her liver... I broke down and wept.

The other day she posted that she was getting her affairs in order. I thought it was an interesting and funny post -- I had not yet realized that she was facing a terminal recurrence -- and considered doing something similar here. And then today, I went back a few posts and realized that she was looking at the finality of her life because of this disease.

Sigh. All the pink ribbons and fundraisers and prayers and good wishes... all the medications and surgeries and treatments... and in the end -- because there will be an end -- it comes down to accepting what is, finding joy in as many things as you can and having dignity (and laughter) when (if) they tell you that there simply isn't anything else that can be done at this point.

I pray that the peace and the grace that she's exhibited in her blog... will be mine if (or when) I'm faced with the same diagnosis.

Please meet my pink ribbon sister Ann: http://www.butdoctorihatepink.com/2011/06/i-owe-you-apology.html

So... I'm a rebel now. I dyed my hair.



Some women color their hair as often as they buy new shoes. I'm not one of those girls. So when my oncologist told me that I couldn't dye my hair, it didn't bother me in the least. Not dying my hair was something easy for me to give up -- I didn't do it anyway. Some of the other restrictions he gave me -- no acrylic nails, no smoking cigars, limiting my alcohol intake -- were a lot more difficult to accept. (I gave up the pretty but fake fingernails and I gave up cigar smoking but drinking has been something I simply refuse to give up).

When the thought hit me about a week or two ago that I needed a spark, a change in my life... coloring my hair seemed like an easy change that might make me feel better. At first, I did my research and searched for natural products to use on my hair. My friends advised me about products that I could use that were limited in their toxicity and would probably not cause me any problem. But you know... when I found myself in Bed, Bath and Beyond looking for a few toiletry items... the box of "intense red" caught my eye and was in my basket before I even considered looking at the ingredient listing.

I know it was full of crap that I wouldn't normally want next to my skin. I knew that. But, I simply wanted my hair to be different and I figured that I would take the toxic risk. Now that I've colored my hair -- and for the record, I'm not that thrilled with it -- I'm really wondering why in the world I did this to myself. Well, let me be frank. I know why I did it. My life is pretty dull and somewhat boring. I'm frustrated about a lot of things and changing my hair color was something that was within my ability to control that I felt would be a big enough change that I would feel differently.

However, what I really feel is very sickened with myself. I'm not physically ill. But I am disappointed with myself for taking an unnecessary risk that I simply did not need to take. I look at my life as a series of equations...and ultimately, my goal for each day is to do as little harm to myself as possible. On those days where I feel that I may go over in one area -- such as going out for drinks -- I try to cut back other ways (or increase other things) to offset the problem. For example, if I know I'm planning to go out and have a few drinks then I increase my water intake for a couple of days before I go out and I make sure that I have plenty of lemon water (and sometimes gatorade) to replenish my system for a couple of days afterwards. It may not make any difference at all, but it makes me feel that I'm limiting the harm that I expose myself to. But this hair dye is a constant reminder that I just subjected myself to toxins purely for vanity's sake. And its making me really disappointed with myself.

Let me add this... I am growing very weary of searching for toiletry items that are made without all the bad/horrible stuff that makes products shelf-stable but toxic and possibly cancerous. The search is tired because when I do find products I usually don't like the way they smell or the way they feel. Or I find someone online who creates them at their home but that requires ordering and waiting -- sometimes for weeks -- for the products to arrive and it gets expensive. While I was wandering around in Bed, Bath and Beyond trying to find a body wash that didn't repulse me... I remembered how simple it used to be to shop for myself compared to the dance I do now. I am sure that my grabbing that box of hair color had a lot to do with my impatience with searching all over town (or the internet) for something that works for me. Why is it all so doggone complicated?

At any rate... I've dyed my hair a strange reddish color. I would post a picture but... I'm vain and I don't like it. (laughs) I took a dip on the wild side once, but I don't do it again. The annoyance of always having to plan everything out is something that I know that I simply must get accustomed to... but I suppose that an occasional slip up might be ok.

Jun 24, 2011

Focus groups and clinical studies... a way of giving back



I spent today participating in a cancer focus group activity. I have begun to do this a lot more frequently since my treatment. I think of participating in focus groups and clinical trials as my way of giving more of myself to the cancer community and doing a small thing that may help to eradicate this disease. Or, at the minimum, help in the understanding, treatment of and support for those who have to deal with it. Today's activity was actually not a group but a one - on - one session with a very nice interviewer.

While I was given a small stipend for my participation, it didn't cover my expenses getting to the appointment and back. But it was an incentive for me to go. The entire appointment didn't last longer than an hour but it was a very intense hour because I had to discuss a lot of very personal aspects of dealing with my cancer... and it dredged up a lot more feelings than I thought that it would.

I enjoyed the focus group today, as much as I've enjoyed all of the other ones that I've participated in. Its such a minimal intrusion on my life but I know that someone is paying attention to what my thoughts are and it is impacting how they approach other cancer survivors and cancer research. For me, that's worth all of the effort.

While I was in treatment, I was asked to participate in a clinical study. My participation was minimal. I only had to contribute a little more blood than I was already giving up during my normal chemo appointments and measure a few other things. *shrug* Again, not much of an intrusion in my life and if it helps someone, its totally worth it.

There are plenty of organizations out there who are conducting surveys, clinical studies and focus groups in an effort to wrangle this breast cancer beast to the ground. I'll post a few at the end of this post. I hope that you consider joining one (or a few) and I really hope that you pass the word along so that people you know can join in the effort too. Every little bit really does help.

PS. This list is just a few organizations that I know about and/or may have participated in activities with. If you learn of others, please feel free to share with me. :)
=====
Organizations to check out for focus groups, clinical studies and surveys:

Army of women:  http://www.armyofwomen.org/

Westat: http://http://www.westat.com/  (call 301-610-8824 to be included in the volunteer database)

Susan G. Komen Foundation:  http://http://www.komen.org/

Metro Research Services:  http://www.metroresearchservices.com/


http://fabulous-boobies.blogspot.com/p/new-here.html

Jun 20, 2011

The soul of a survivor... inspires us all

The Susan G. Komen Tidewater affiliate, Survivor of the Year -- Lynne Young.

I just read the most touching article about a pink ribbon sister that I've never met -- though now that I've read about her, I want to meet her and talk to her one on one. This sister has had breast cancer stalking her family line for generations... and yet she serves to inspire and motivate others.

I love it.

I will repost the article because I think we all can gain a little bit of inspiration and strength from Lynne Young.
-----------------
Chesapeake breast cancer survivor leads by example



By Vicki Friedman
The Virginian-Pilot
© June 20, 2011
CHESAPEAKE

Bad report from the doctor // And my bills aren’t paid on time // All these things come rushin’ at me // But I ain’t got time to whine // Lord I need your mighty wisdom // ’cause my situation is unclear // Don’t know where to turn // God’s word came to my ear // I say speak to that mountain of cancer // And cast down that spirit of fear // Pack your bags, you silly demon // I say you’re not welcome here

Lynne Young wrote those lyrics when her situation was cancer. But the Chesapeake woman hopes her song will inspire others to persevere through their hardships, whether they are related to health, family, finances or what she calls “the other speed bumps of life.” Young, named Survivor of the Year by the Tidewater affiliate of the Susan B. Komen Foundation, was diagnosed with breast cancer in 2005. That is only part of her story.

“One of the things that makes Lynne such a strong individual is that she has not been defined by her cancer,” said Ilona Webb-Bruner, executive director of the local Komen affiliate. “What she does is use her cancer to empower those in the community and in her own family to make the best decisions in their lives.”

Young’s mother, Frances, died of breast cancer at 42, when Young was a seventh-grader. All of her mother’s sisters died from it, as did her grandmother.

“Growing up with four sisters, you wonder, ‘Who’s going to be next?’ ” said Young, an administrative specialist with the Department of the Navy. “You don’t say it, but it’s always in the back of your mind.”

She was in her 20s when mammograms became an annual part of her life. The results were never alarming, including in October 2004, when she received another clean bill of health.

Three months later Young experienced breast tenderness, body aches typical of the menstrual cycle and intense itching, which felt like an internal itch she couldn’t scratch. In bed one night, she realized she could not lie on her left side because of the pain.

Doctors found a cyst. Cysts had been a constant in her life, so another one didn’t seem out of the ordinary. But tests indicated the lump was abnormal and required a biopsy. In March, Young was told she had breast cancer.

She was 41.

“I didn’t think it would happen that early,” Young said. “You always think it will happen to somebody else. When the doctor called and told me, my co-workers caught me. I don’t even know what I did.”

The cancer was a highly aggressive form. Young was advised to have a double mastectomy because of the family history, but she was hesitant. A second opinion presented her with options, including being tested for the genetic mutation of the disease.

A positive result would mean Young would have an 80 percent chance of the cancer reoccurring without the most aggressive surgery.

“It takes about six weeks to get the answer back, and that’s six weeks of torture,” Young said.

The test came back positive. Young’s response: “Do what you have to do. I want to live.”

The nine-hour surgery took tissue from her abdomen to replace the breast tissue. The ensuing chemotherapy was brutal because of several allergic reactions that hospitalized her three times.

Young didn’t let it depress her.

“I’m a fighter. It can come and knock on my door, but it ain’t going to keep me down,” she said.

Young is 47. Breast cancer has touched her again. Last month she helped daughter Javalle Glass, 27, through her own surgery – a gut-wrenching experience. Family history prompted Glass to be tested for the genetic mutation, and it paid off.

“Her doctor suggested I get the BRCA test and I got that, and it made me aware of my risk so they were able to screen me early,” Glass said. “I know I’m going to be OK because my mom is a survivor as well. I know I have a lot better chance of success than maybe 10 or 15 years ago.”

Young has taken a lead role the Komen youth initiative that provides outreach through middle and high schools, and she is especially passionate about the Circle of Promise, which helps African American women take charge of their health and be community ambassadors.

According to Komen, breast cancer death rates were similar for white and African American women in the early 1980s, but during 2001-05, African American women had a 37 percent higher death rate.

“We’re trying to reach those who aren’t knocking on the door asking for more information,” said Young, wearing a pink blouse with matching earrings and necklace that show the ribbon that promotes breast cancer awareness. “Early detection is the key, and that’s what I advise. Stay on top of your health.”

Another nugget she shares: “We all have to be our own advocate for our own health. We have to be our first advocate, because the doctors only know what we tell them. They can’t look for things you can’t tell them.”

If your doctor doesn’t listen to you, shop around for another, she said.

Attitude is important, too, she said. Young conveys hers through inspirational music that she writes and sings in a beautiful melodic style.

“What keeps me going, what makes me a survivor, what is part of Survivor 101, is that I know God’s purpose in my life outshines any obstacle or any speed bump that tries to get in my way,” Young said. “I looked at breast cancer as a speed bump, just an obstacle to slow me down. I know there’s a higher purpose for everything. That’s what keeps me going.”

Vicki L. Friedman, (757) 222-5218, vicki.friedman@pilotonline.com

Men are affected by your breast cancer too



I was surprised to learn that a lot of my blog followers are men. For some reason, I assumed that guys would not be interested in reading about my fabulous boobies. (smile) I was wrong... and I've realized that I've been very wrong about the depth of pain and anguish that the men in a breast cancer survivor's life feel.

I will say this upfront -- men baffle me. I have tons of male friends, plenty of male cousins, a younger brother, lots of uncles and a daddy... and I don't understand the way a man's mind works when it comes to emotions at all. I just don't understand it. That said, when I was going through treatment, I felt that my boyfriend did not understand what I was going through or how to handle it and I purchased a book that I had hoped would help him (and me too). However, I ended up reading it myself. The book, "Breast Cancer Husband: How to Help Your Wife (and Yourself) during Diagnosis, Treatment and Beyond", was very interesting and very enlightening for me. Written by the husband of a woman with breast cancer, it spoke in a very different way than the other books I had read about dealing with breast cancer. It was definitely written by a man for a man.

I find myself talking to a lot of guys about the women in their lives who are dealing with breast cancer. And I am always honored that they trust me enough to share their concerns and to ask me what they can do to help. My father has had to deal with breast cancer twice. First, one of his younger sisters had it and then just a few years later, I had it. However, my dad isn't the kind of guy to talk about his feelings and stuff (laughs) so you have to try to interpret what he's feeling by his actions. I believe that he was very hurt and I see/hear that same pain when I talk to other men who try to cope with the breast cancer monster. My only advice to any guy who is trying to cope with this is simply... do your best to simply be there.

Its Father's day weekend and I want to say Happy Father's day to all of the dads in the world -- especially the dads of beautiful little girls who had to fight the breast cancer monster.

Jun 18, 2011

Surviving loneliness as a survivor

Another day... another step forward and a few more steps backwards. Ok... so maybe the forward step is just in my mind. But I'm trying.

So here's the thing... I am lonely. Whew, it was difficult for me to admit that to myself but I've been twisting it around in my head and my heart for a very long time. I cannot fully explain why I'm feeling lonely these days but I am. And yes, I know that I have a bunch of wonderful friends and lots of family members that I could talk to and spend time with... but, its not the kind of lonely that is satisfied with just being around people. Its something else I think.

An article in The Telegraph (Loneliness-can-increase-risk-of-breast-cancer) from 2009, explains that loneliness in lab rats seemed to contribute to their likelihood of having breast cancer. I thought it was interesting but the article goes on to say that there are many in the cancer community who feel that there is not enough evidence to link stress to breast cancer. And let's be honest, being lonely is pretty doggone stressful. However, I am starting to really believe in the connections between our mental states and our physical fitness. In more than the superficial way that I've considered it in the past... these days, its becoming abundantly clear that how I think and feel directly affects how my body acts and reacts.

It is theorized that while there may not be direct correlations between stress and breast cancer, the effects of stress lead to unhealthy coping mechanisms that could contribute to increased risk factors for breast cancer. So... activities like overeating, excessive drinking and smoking could be tied to increased stress which could be triggered by intense loneliness.

Feel where I'm going with this? (laughs) For months now I've been doing things that are fun (drinking a lot, hanging out late, eating all sorts of decadent foods, not exercising) but not good for me. And while I know that they aren't good for me, my acknowledgement has not been sufficient motivation for me to switch gears. Until now. After reading about the lab rats in the UK, I kept searching for more information about loneliness and breast cancer and came upon a medical abstract (Survivor Loneliness of Women Following Breast Cancer) about loneliness and breast cancer survivors. And it hit me... if I don't make a concerted effort for things to be different, I'm opening myself up to a few problems. Damned if I do, damned if I don't. The risky behaviors are soothing and help to manage my stress... and my stress is likely to make me weaker and ultimately sicker. But the risky behaviors bring their own sets of problems and they undermine my health too. If I don't soothe myself, the stress wrecks havoc in my life. If I do soothe myself, the behaviors undermine my strength.

In the days following the Race for the Cure, I've felt a deepening sadness and guilt. Survivor's guilt is a pain in the booty -- to be sure -- but its so real. Being out among thousands of women and men, many of whom were there to support the memory of a lost loved one really hammered home to me that I am super-blessed to be here. And that feeling brought a lot of shame and blame and guilt right along with it. I wrote the other day about the "why me" feelings I had for surviving when so many others do not. But what I didn't say was that not only to I carry the guilt of surviving with me, I'm also feeling burdened with the "what's next" blues too. After fighting to get my life back and realizing that I've been blessed, it feels like its not enough to just go back to a regular ol' life. The pressure that I'm feeling now to be super-spectacular is intense. And its immobilizing some days... How do you survive a disease that was supposed to take you out and then not do something earth-shattering and world changing? Its like I have no choice but to work to be bigger than Oprah now. But I'm not Oprah... I'm Nicole and most days... Nicole is scared. Ugh. However, I have to laugh at myself because terrified or not, I am working on some major projects and I cannot wait until they are completed and being of use to someone else.

I know I'm not alone, even if I feel that way. As much as I share on this blog and with certain friends/loved ones... there are some thoughts that I just cannot share with anyone, even other survivors. I guess I can accept that my healing and my growing is still a work in progress. I suppose that it is time that I find peace with the progress.
http://fabulous-boobies.blogspot.com/p/new-here.html

Jun 6, 2011

From "why me?" to "why me?" Race for the Cure 2011

This past Saturday I participated in the Komen Foundation's Global Race for the Cure. When I signed up for the event months ago I decided that now that I was out of active treatment, I would do my best to raise money and awareness of the disease. I set a goal of 50 team members and $5000 raised.

I fell short of both goals.

But I am still ecstatic about the event and the opportunity to do something for someone else and to meet and talk to lots of survivors and supporters of survivors. My excitement about the Race for the Cure began to wane in the two weeks leading up to the event. The reality of the experience was hitting home and I was sad about all of the loss and pain and sadness that I know is the other side of breast cancer. The part I try not to talk about or think about too much. The time in my life when I constantly asked... "why me?" 

I reminisced over the things that I had been through. I thought about all of the people who had supported me during my journey with breast cancer. I thought about the friends that I made -- some who have fought breast cancer multiple times, and others who died fighting -- and I wept for all of us. One of my closest and oldest friends did the race with me and she called me the day before with a little bit of trepidation in her voice. She was nervous about the race and wanted to confirm that I really would be there. I assured her that I would be there and I pretended to be in great spirits. But honestly, I was so very sad.

I confessed to a couple of people the day and night before the event that I was emotional. You see, I remembered the sea of pink tshirts from previous events (survivors wear pink tshirts and supporters wear white) and how it just broke my heart to see all of these women (and men) who fought so hard for their lives. I tried to shake the tears away but they would not stop falling. The night before the race, I didn't go to sleep until 3am. I had to be up at 5am to be on-time to meet my team.

When my girlfriend and I arrived at the Mall, I felt energized. I honestly was awed by all of the work that the Komen Foundation had done to make this event so spectacular. There were vendors everywhere and people walking around and pink, pink, PINK... as far as the eye could see. It was, in a word, beautiful. The weather was wonderful and my spirits had rebounded a bit. I was happy to be there. Getting through breast cancer requires a team effort. You have your medical team, your home support (hopefully), your faith and any and all tricks you learn about to help you get through treatment. Although you feel alone in your fight, you are definitely not alone. The Race for the Cure is a very grand gesture to show the world that patients and survivors do not stand alone.

As the race got underway, I had the chance to hang with the mother of a friend (another survivor) and she and I discussed the difficulties of our journey and how we were thrilled to be able to participate in the race one more time. The crowd was young people and old people, and babies and men and all races and cultures... all walking in step together with laughter and smiles. I was once again, simply awed. At one point in the walk, another survivor walked past me and my friend's mother and she said... "Congratulations ladies"... and walked on past us.

Her remark hit me hard. I teared up for a moment because I realized in that moment that yes... we were very fortunate and blessed to be here. To be able to walk several miles on a mild summer day on our own was indeed a blessing. And it hit me..."why me?"

Earlier in the day I ran into a team of former work colleagues. I worked with them years ago and they were walking in the memory of one of our co-workers who passed away in 2009. (RIP Robin Johnston) When Robin passed away, I could barely remember who she was. She died in April 2009 and I was home on disability (still). Recuperating from my mastectomy that January and finishing up my radiation treatments. My brain was foggy and my temperament was lousy. Since her death though, I have spent many moments trying to recall our work relationship and trying to remember her more clearly. And I have. In the days leading up to this year's Race for the Cure, I remembered that Robin was a very nice person, a very kind spirit. We did not work in the same department and our interactions were few but she was always kind and smiling when we did talk. Generally speaking, she was nice and I did like her. And two years ago, this disease took her away from us.

Why me... crossed my mind repeatedly for the last mile and during the hour or so that we spent on the Mall after the race ended. Three years ago I asked God, why me? Why did I have to get breast cancer? And on Saturday I asked Him again why me? Why was I still here when so many others were not? He didn't answer me... or maybe He already has by giving me the desire to keep blogging about this disease and its impact on the world.

If you haven't been personally impacted by breast cancer, I pray that you never are. But I also pray that if you have been impacted by this disease... please know and believe that there are millions of people in your corner. Whether you are a survivor or the supporter/co-survivor of a survivor, we are here for you. I am here for you.

PS. I wanted our team to raise $5000. We ended up with a team total of $3905. Not bad at all. Next year, I want to shatter that record.