Today Marks My 1-Year in Remission - 11/17/2007

Today marks the 1 year anniversary of my remission. YEEEEEEEEEEEEEHAAAAAAAAH!!!!!!!!!!!!!! WOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!! I'm ALIVE!!!!!!!!!!!!!!!!!!!!!! Hahahahah. Oh...my...God..... I made it! I'm still here...all of me...well, missing a bit here and there, but for the most part, all of me!
At around 5:30 last year on a Friday afternoon, I walked out of my radiologist’s office, down the hall, got on the elevator and I wasn’t sure whether I was walking away from something catastrophic, something that was meant to happen or towards a new and wonderful life. I was simply overwhelmed that it was all over, but another part of me new that “it” had just began, the first day of the rest of my life… Or was that when I had gotten diagnosed? I was so overtaken by emotion that I got in the car and cried, for all that I had been through and for all the other women who had, were and would be going through the same. I cried in thankfulness that by the grace of God I was alive, and because I had a mother who had taught me to do breast self exams, which was how I found the lump in the first place. I cried for the fact that I was just now realizing how fragile and beautiful life really was and I knew that I didn’t want to leave it yet; my work had not even begun. I cried in joy that I would be able to live to be a mother to my child and I cried because I was this new person who I barely knew. I felt like I was looking at a stranger when I looked in the mirror. I felt like the experience of breast cancer, and God had begun remolding me and I felt sort of “not done” yet. Have you ever seen a piece of clay that someone was working on and they stopped midway and you wondered what they were going to make with it? Who was I and how would I be the rest of my life? A part of me wanted the old me back, because she was comfortable and what I was used to. At the same time, I knew that this was the me that I was born to become and that God had just begun His work in my life. I knew that He had so much more to do and I needed to accept it and let it happen.
I was terrified, now, even more than when before, because my whole life for nearly a year had been spent fighting this cancer and now, I had no where to go every day, no doctor to treat me, check up on me, inject me or radiate with cancer fighting stuff. What if it happened again? What would I do with my time? Where would I go everyday? It took me almost another full year to define who I was and to also learn to just let the process happen. You see, the beautiful thing about life is that all you have to do is show up. Whatever your fears, misconceptions, anxieties, etc. are, life is going to happen and change is going to happen whether you like it or not, so I decided to embrace it somewhere along the way.
This morning, after I woke and prayed, and thanked God and cried (of course... I cry for every little thing) myself to pieces out of joy, I opened a package from a beautiful friend of mine, Stephanie LaRue. I had gotten the package a day or so before, but I think maybe I wasn’t ready to open it yet, so I put it down for later. Stephanie is my age. I met her a breast cancer conference over a year ago. Actually, I met “them”. There were three – Stef, Kristen and Jenna, but they were part of their own little clique. I was never a fan of cliques and never belonged to one, nor did I want to, particularly at this stage in my life, so I wondered, hmm, I like them, but I don’t know about this little trio thing they’ve got going on. Haha. Little did I know...within ten minutes of talking, the group had become four! These girls are amazing.
Okay... back to Stefanie....Two years ago, in 2005, Stefanie was diagnosed with Stage-4 Advanced/Metastatic Breast Cancer at the age of 30. Before receiving her diagnosis, she was misdiagnosed by three doctors who told her that she probably had a breast infection because she was too “young and healthy” to have breast cancer. As a result, the breast cancer spread into her lymph nodes and spine. She had bone metastases. She was told she had a year to live, but she was still here! I was looking at her beaming face!
As soon as I met her, I knew we’d be friends for life. She reminded me of another friend of mine, who surpasses being my sister, Nada. Like Nada, Stefanie got me and I got her. Her spirit was so beautiful. She glowed! It was like meeting a long lost best friend again. We were meant to meet. I think what was funny to me is how alike she and I were. As she puts it, she was the white version of me. I think though, that Stef just has this ability to make everybody she meets feel special, and that in itself is a beautiful thing. She has incredible fire and passion, when she speaks, you can’t help but stop and listen…she won’t be ignored, and you get drawn in by her emotion. She is unapologetically, wildly happy and in love with life. She pursues her dreams with everything inside of her. She is alive. She is living her life just how she damned well pleases, because, hey, why shouldn’t she.
That is how I believe life is supposed to be. Happiness is my birthright and especially now, I am entitled to soak up every ounce of it. Stefanie had been throught the ringer, but on her face now, she always wore a smile. Her smile, wasn’t false or one of pretense, but just pure joy at still being on this Earth and being able to make a difference. Stefanie has dedicated her life to working as a breast cancer advocate. That is what she does. She has also, like me, dedicated her life to being outrageously happy and looking forward to what life brings her way. This is not to say that there aren’t days that brings challenges, but more along the lines of, there are no bad days, just days that bring gifts we weren’t expecting.
I know I digressed, so I will get back to the scarf. Like me, and like Nada…how interesting now, am seeing parallels! :O) Stefanie always wears scarves. Go figure. She has a million of them…okay, not a million, but a lot and when I visited with her this summer, there was a particular one of hers that she gave me to wear when we went out. It just seemed like the one for me. It was black, beatiful and shimmery, with pretty beads. I hadn’t wanted to wear it because I knew it was one of her favorites. Anyway, she insisted that I wear it because my eyes had lit up when I saw it.
When I opened the package this morning, the scarf fell out of the bag and I was again overcome by tears. She was giving me the one of her favorite scarves, one of best that she had. That is so like Stef, to give you something she would want for herself. At first, I thought, why is she giving me this scarf? Is she okay? What if she had a recurence and doesn’t want to tell me? But, I knew that it was not that… I had yelled (okay, my version of yelling) at her a week or so before about hiding things from me when she wasn’t well. So, I knew that this was something from the heart; and how serendipitous that I would open it on “My Day”.
So, today, on my one year anniversary, I ask you, to do something, anything, for your loved ones, for your friends, co-workers, for a stranger, that you would want someone to do for you. Think of your favorite thing, charity, food, show, sweater, feeling, whatever, and share it with someone else. Send someone a card, flowers or a letter. The person may never know exactly the sentiment or the emotion behind your act of giving or sharing, but they will feel it and they will pass it on.
As a survivor of breast cancer , I have dedicated my life to fighting this disease. Not only for me, but for all the women who have gone through it, who didn’t survive, who are going through it now and who might go through it in the future. Breast cancer advocacy is my thing. What is yours? Pick up that charge and do it. Take it head on and you will see that you can and will make an incredible difference in the world. If you say you care about those you care about and if you love yourself, you can not be content to just go to work, come home, eat dinner and go to sleep. You need to live a life that gives to others, a life filled with passion, love, joy and “aliveness”. Make today the first day of the rest of your life.
Today, I am rededicating myself to the possibilities. I have asked God and the Universe to use me any which way He/She wants; and I have asked myself to be ready. I ask Him for peace, I ask him for purpose. I thank Him for everything that faced over the past year – every pain, every suffering, every joy, rebirth, awakening and every lesson learned, because they all bring me closer to my purpose and closer to you all and the people I am meant to impact in my lifetime. I am so thankful for how He is molding me. I am thankful for all the wonderful people I have met over the past year and a half, all the souls that are now a part of me. All the love that I now know surrounds the world, we just need to open our eyes and see that it is there.
I want to thank everyone who has loved me, supported me, and been there for Noelle and I, not just over the past year, but forever. ;O) You are too many to name all, but you know who you are. I love you. Thanks Mom! I look forward to many more wonderful years of life, and I am ready to embrace and learn from everything that will present itself to me. Have a friggin fantastically, wildly, amazing, blazing happy, ALIVE day..I know I’ll be!!!!!! I love you all. Maimah
p.s. – Kristen and Stef, thanks for calling to wish me a happy 1 year breast-anniversary!!! Hahhaha. Enjoy your conference and I’ll see you at the next one! Until then, take care of your boobs!

Breast Self Examinations

Over the next few weeks, I’d like to do a bit of education. I’m going to provide you with information on breast cancer. Feel free to write and ask question if you have any.This week, I’d like to talk about breast self examinations and how to perform them. So, here is Breast Cancer 101 – Self Examinations.#1: Breast Self ExaminationsOne of the best ways to detect breast cancer in the early stages is by performing a routine self examination. By doing monthly exams, you become familiar with the look and feel of your breasts, which will allow you to detect any irregularities, should one occur.Breast Self Examinations can be uncomfortable emotionally for some women, and also frustrating, because you don’t know what the heck you are looking for at first. The most important thing to remember is that you need to know your breasts as intimately as possible. If you take the time to do this once a month, you are taking an important step in terms of your breast health. Regular breast self examinations, in conjunction with yearly exams by a doctor are important factors in early detection of breast cancer.At first, it might seem like a challenge remembering to do the exam on a regular basis, but try to incorporate it into your usual routine, for example, if you get your hair done at the salon once a month, do your exam that day of the week, or it could be during the week you pay your bills, etc. Examine yourself several days after your period ends, when your breasts are least likely to be swollen and tender. If you feel a lump, don't panic. Most women have some lumps or lumpy areas in their breasts all the time. Eight out of ten breast lumps that are removed are benign, non-cancerous.Breasts tend to have different "neighborhoods." The upper, outer area—near your armpit—tends to have the most prominent lumps and bumps. The lower half of your breast can feel like a sandy or pebbly beach. The area under the nipple can feel like a collection of large grains. Another part might feel like a lumpy bowl of oatmeal.What's important is that you get to know the look and feel of YOUR breasts' various neighborhoods. Does something stand out as different from? Has anything changed? Bring to the attention of your doctor any changes in your breasts that:* last over a full month's cycle, OR* seem to get worse or more obvious over time Some women wonder why they need to have their doctors examine their breasts when they're doing regular self-exams on their own. Even though most lumps are found by women themselves, a breast exam by a doctor helps find lumps that women may miss. Sometimes, the abnormality in a breast can be so difficult to feel that only someone with experience would recognize it. Lumps, thickening, discoloration, asymmetry—changes in your breasts that you may not notice or think are "normal"—may be picked up on by people who examine many breasts regularly. Exam Steps:Step 1: Begin by looking at your breasts in the mirror with your shoulders straight and your arms on your hips.Here's what you should look for:* breasts that are their usual size, shape, and color.* breasts that are evenly shaped without visible distortion or swelling. If you see any of the following changes, bring them to your doctor's attention:* * dimpling, puckering, or bulging of the skin.* a nipple that has changed position or an inverted nipple (pushed inward instead of sticking out).* redness, soreness, rash, or swelling. Step 2: Now, raise your arms and look for the same changes.
Step 3: While you're at the mirror, gently squeeze each nipple between your finger and thumb and check for nipple discharge (this could be a milky or yellow fluid or blood).Step 4: Next, feel your breasts while lying down, using your right hand to feel your left breast and then your left hand to feel your right breast. Use a firm, smooth touch with the first few fingers of your hand, keeping the fingers flat and together.Cover the entire breast from top to bottom, side to side—from your collarbone to the top of your abdomen, and from your armpit to your cleavage.
Follow a pattern to be sure that you cover the whole breast. You can begin at the nipple, moving in larger and larger circles until you reach the outer edge of the breast. You can also move your fingers up and down vertically, in rows, as if you were mowing a lawn. Be sure to feel all the breast tissue: just beneath your skin with a soft touch and down deeper with a firmer touch. Begin examining each area with a very soft touch, and then increase pressure so that you can feel the deeper tissue, down to your ribcage.
Step 5: Finally, feel your breasts while you are standing or sitting. Many women find that the easiest way to feel their breasts is when their skin is wet and slippery, so they like to do this step in the shower. Cover your entire breast, using the same hand movements described in Step 4.

Breast Cancer Awareness Month

We are almost at the end of breast cancer awareness month and people’s attention is beginning to die down and focus on other things. I am not going to go over the statistics, as I usually would, but I would urge people to look outside of themselves and figure out how they can stay involved in the fight against breast cancer on a regular basis, not just in October. There are so many organizations that you can get involved with. Tigerlily Foundation (www.tigerlilyfoundation.org) is a community based breast cancer support organization that provides support to the local community. We need volunteers who can meet women at chemotherapy and sit with them or run errands when needed. We also need donations for our Funds for Families Program, which is geared towards supporting families facing financial challenges while going through treatment. One of my favorite programs is our Project Gratitude, which encourages women to live with more gratitude in their lives, consciously choosing to focus on what to be thankful for, as opposed to what is going wrong in their lives.Go to www.tigerlilyfoundation.org to register for our 365 Days of Gratitude Challenge. Susan G. Komen, the Young Survival Coalition, National Breast Cancer Coalition and the African Women’s Cancer Awareness Association all have ways you can get involved in breast cancer activities, as well.One in seven being affected is too high a statistic. I was at a speaking event a few weeks ago, where I was speaking to young, college age women. Many of them felt like, “it can’t happen to me”. So, I had a few of them come stand around me and then I asked one of them to put up her hand. Well, the group that came were all friends and the one girl did put up her hand. “Well”, I said to her, “you all make up a portion of the demographic. You could be the one who might be diagnosed”. Then, it really hit them, and they began to ask questions and I could explain more about self examinations, being more of an advocate for themselves and others and taking control of their lives. Because, you see, healthy lifestyle habits, including screening for breast, cervical, lung cancer, etc., even learning to manage stress shouldn’t just be something we do when a major event happens to impact us, but should be taught to young people early in life, so that it becomes part of their lifestyle. So, even though breast cancer awareness month ends in a few days, keep in mind that a healthy lifestyle, health breasts and bodies are something we need to be conscious of all the time.Please visit me at www.tigerlilyfoundation.org or www.maimahkarmo.com to learn more or sign up for our newsletters.

Amazing Twists and Turns

Hi there,Did you miss me? It has been an amazing few weeks for me... being able to spread the message of breast cancer via Essence Magazine and Good Morning America. A year ago, I was in a totally different place in my life and today, I can use the challenge of my experience to help others.I think I finally get it, what life's about. It really is about you just being present with yourself and doing what you are supposed to do in the world. It is about being true to you and designing a way of approaching life that allows the best you to come about. And I know I have said it a million times, but it is about loving you...first.I sat on "the sofa" at Good Morning America on Wednesday and wondered, "what the heck am I doing here?" "How in world did I get here?" "Did they get me confused with someone else?" The only thing I can think of that gets us to that place of living fully, is when we live with passion. I think that each of us has something he/she was born to do, and it can be big or small, "noteworthy" in worldly terms or beautifully simple. Some people live their lives and complete their mission without much ado or fuss, but you can see it in the way they tilt their head, in the way they smile, and in the peace they have around them, that they are living a life of passion.

I want that for you...all of you...those who are touched by cancer and those who are not, because only when we find and live our true purpose, does our spirit fill with joy and passion. It is only when we are being authentic with who we are on the outside and within...the spirit and the actions align.

I'm not saying that I've gotten where to go, but I think I have more of an idea than I used to, and that feels good to me. It makes me smile. I look forward to all of the learning that will occur in my lifetime, moreso because it is an amazing thing, watching myself and others blossom, unfold and rise up in the world, claiming our space and saying, "Here I am, I am bold. I am wonderful. I am me". Perhaps I am getting a bit esoteric here, but you get my drift...think about it...what are you doing with your life? Are you doing that thing? If not, then you should be. There is no time like the present to begin.

What To Do

One of the things that I find most interesting as I get more involved as a breast cancer advocate is that there is so much to do and so many people to touch. I talk to a lot of people who are newly diagnosed and one of the things that is readily apparent to me is that even those people who think they are educated about breast cancer and do participate don’t know very much.
It seems to me that that lack of knowledge creates a sense of fear about the disease, which in turn paralyzes the many women who afraid to go to the doctor to get mammograms, or who find that they have breast cancer and don’t do anything about it. It can be scary, but the more you know about something, the better position you’re in to deal with it.
So, with all the information out there, how come more people don’t know about breast cancer and its impact? I think that for one, most people aren’t really interested in something until it touches them. Also, for all the information that is out there, perhaps the races and walks, and donations have become something social to do, that impresses others. I will admit, I am guilty of it too. I participated in the walks and gave money, but I didn’t really hear what these breast cancer women were talking about until I was impacted. That is why I think it is so important that we all use our voice. And you might think to yourself, well, who the heck am I to do something; or what can I do to make an impact? Well, the first thing you can do is be interested enough to ask questions or to “show up”. That means when you are at an event for breast cancer, when you go, ask questions and really learn about what is going on. Or, when you go for your annual physical, pick up a brochure or two. Another way to get involved is to just give the gift of your time to the cause.
Join a group that provides support to people affected, offer to help by stuffing envelopes, attending meetings, finding sponsorships, or just tithing your time for a cause that will benefit others, and you as well. I find that giving of myself is incredibly rewarding and provides benefits that are unmatched. The feeling of helping another person and connecting with them, helping them become more informed and becoming better citizens of the world is a gift in itself…give that gift to yourself. :O)

Dealing With Emotional Effects of Breast Cancer

I’ve learned that one of the most important things about dealing with cancer is managing your emotions, particularly post-cancer. When you’re diagnosed and all through treatment, there is a lot of attention paid to the patient during the treatment by family and friends. After treatment is over, everyone goes back to their lives, but the patient is left to deal with the emotional side effects of cancer alone. I found that after treatment was as difficult for me than going through the treatment, maybe more difficult, because at least during treatment, I was doing something to fight the cancer and during treatment, I had so much more support. Now that I didn’t have to go to the doctor everyday, I wondered what in the heck was going on inside my body. I also felt like if something was going on, I was doing nothing to fight it. I wondered about metastases and a zillion other things - was I eating the right things, breathing clean air, drinking clean water, exercising enough, taking enough vitamins, doing the right things, basically I worried about everything - not all the time, but sometimes. I found that I had changed – they way I felt, the way I looked, my hair and my body. I wondered how my experience with breast cancer had impacted my daughter.
You see, cancer didn’t ask my permission to take up space in my body and my life, it was a most unwelcome tenant that I’d had to deal with; and now, I was left to deal with the repercussions alone. People called to check in on me, but pretty much it was back to life as usual. I was still tired, I found myself sad at times and no one could understand how I felt. I was going through the process of figuring out who “me” was. I looked in the mirror at myself and I saw the same face, but inside I was different. I had fought and survived something that many people don’t. I had a body that had gone through surgery, chemotherapy and radiation and had had something inside of it that I didn’t want. It is interesting to me that my metamorphosis continues, even a year after being diagnosed with cancer. I had a massage the other day and the masseuse, listening to me talk about my chest pain and stress in my chest and shoulders, told me that I talked about my body as if it wasn’t a part of me. That surprised me, because here I thought I was an expert at the mind, body, spirit connection, but I knew that at times I feel disconnected from my physical self. I have spent quite a bit of time over the past year working on me and trying to define who I am after breast cancer. I think that perhaps I will be doing this for some time. I deserve it. ;O) For 32 years, I was the person I knew. Then, without a warning, I underwent an experience that turned every idea of myself upside down on its head and the ideas and beliefs by which I defined my life – friends, family, love, career, focus. I now wanted and realized that I wanted to spend so much much more time focusing on the love of my life, my daughter Noelle. I found that I wasn’t sure who I was anymore and similar to an amnesiac patient or a toddler, I was kind of watching myself and finding myself surprised, sometimes pleasantly by the changes, and sometimes not, when they involved me having to change the people I spent my time with, or not having interest in the things I used to do. My passion was different now and so were my desires. Who was this Maimah and what would she do? It was nice to find out, in talking to my friends Stefanie, Jenna and Kristin the other day, that they felt very much like I did. Oh, I thought, I'm not alone. We are all advocates, we are all powerful and strong, but we are all still young women, with feelings, thoughts and fears of our own. As I told them when we talked, "Being strong doesn't mean we don't have the right to be afraid or to cry. Being who we are, embracing these new changes and being human is what makes us part of the human race."In an effort to “get myself back”, a few months ago, I went to the hair salon and told my stylist to give me a long, curly weave. I told her, “Make me look like I used to look.” And, she did. When I turned around and looked in the mirror, I was shocked and ecstatic to see that I looked just like the me I used to know, I almost burst into tears. The only difference was that I didn’t feel like that girl anymore. I missed her and I wanted her back, but I knew now that I am a new me, a wonderful me, and a survivor me with a passion for empowering women and fighting breast cancer. The new me is dedicated to saving lives. I realized that this was me now and I’m learning more about this new person every day. I think I love her. She’s pretty amazing, and so are you.What I would like to see from the health community is more interest in studying and treating women post-surgery, chemo and radiation. It can’t be that women go through all the trauma and then are just put back out into the world without a mechanism to cope with the changes in her life. Studying and treating women post-treatment should be a part of the treatment. With about 200,000 women being affected by cancer a year, how can we not invest in those women’s overall emotional well-being after cancer? Isn’t it apparent to the healthcare providers that women’s emotional wellness affects their physical being as well?I am part of a study with the City of Hope that is doing research on women’s needs after treatment and how they cope with breast cancer. I applaud what they are doing and I believe more healthcare providers should offer these types of services. I’ve spoken with many women, who even years later, are part of a support group, but there are also those who need to work with a professional and who need to have their family and network of friends acknowledge that even though treatment is over, they are now living with cancer and that they don’t have to stop calling. After the treatment, most women need as much support than during because now, she has to cope with life afterwards, the affects on her body, her mind, her spirit and also the idea of recurrence. So, for those of you who have a loved one going through or living with breast cancer, I applaud your support of that person, but don’t stop once their treatment is over. Don’t be afraid to call and offer your help. Don’t hesitate to visit or to offer support. Your support and your calls make it a more nurturing process as we redefine ourselves and create a new life after cancer. I, for one, had and have an awesome support system. I love my family and friends. Noelle and I couldn’t have done it without them, but sometimes, they just didn’t get it and I wondered if I really wanted them to. I wanted them to understand me, but I didn’t want them to ever have to understand breast cancer the way that I did.They like to call me Superwoman, because I am always doing a lot, and I am …Superwoman, that is…I guess – haha…:O), but sometimes, now, I get tired more easily than I used to, or feel challenged about certain things, my focus and needs are different; and I had to tell my family and friends how I felt, so they could understand what I was going through and that was hard. I hadn’t wanted to be different, but I’d changed, and as I was accepting who I now was, they were growing right alongside me. I found that they had changed as well, through my experience, so, through dialogue, we helped each other out. I can call them and say whether I'm happy or sad and tell them that they just need to listen and not try to cure cancer or solve all the problems with one phone call...hahah. Like I told my best friend the other day, don't try to make me feel better...just listen and now she knows just how to help me! ;O)My mother, who was my primary caregiver, has gone through a lot watching me be sick and caring for me and my then dying grandmother and helping with Noelle at the same time, my aunt who came from Tunisia for the duration of my treatment was impacted, my daughter, who, at 3 years old, watched me lose my hair and go through chemo at a very young age, my brothers, cousins, my friends and co-workers. You all have people too, in your lives who are impacted by the disease -husbands, girlfriends, boyfriends, partners, children, friends and other family. It is important to talk about how breast cancer impacted them, and help each other through the healing process. My friends and family tell me that watching me go through that scared, empowered and strengthened them as well, but you know what, we now have such a deeper appreciation and love for each other. I know that this blog is a ramble, but I needed to get these thoughts out there, because I know that many of you are dealing with some of the same things too. Until next time, I love you all, have a beautiful day, and live your life today as vastly as you can. I know I will. ;O) Is it really Monday already? (Yawn~)

National Breast Cancer Coalition's Project L.E.A.D - Creating Change

Sometimes the most unexpected gifts come least where you expect them. I had the privilege of attending the National Breast Cancer Coalition’s (NBCC) Project L.E.A.D. recently and it truly changed my life. It has been over a year since my diagnosis. I never would have imagined when I got that call, that now, I would be sitting among peers that are doing the kind of work that effects long term change and impacts thousands of women yearly, even saving lives.Project L.E.A.D. is a science training course designed to help breast cancer activists influence research and public policy processes. To get into the program, you had to follow a stringent application process, writing essays and stating why and how you would work to fight breast cancer. Many applied and didn’t get in, so for those of us who did get in, we knew we needed to take advantage of the resources at hand.During this intense five-day course, fifty other breast cancer advocates – survivors and non-survivors alike were focused on one agenda – preparing ourselves to participate in forums like lobbying, achieving legislative reform, influencing clinical studies, breast cancer treatment and in the end, find a cure for breast cancer.I have never been so honored being in the midst of such amazing women. As I sat in hour after hour of sessions, being taught by the best scientists and researchers in the filed, I learned about basic biology, the principles of genetics, how DNA and RNA function, how scientists conduct research, the importance of protein in terms of cell generation and degeneration, epidemiology, how to design studies and clinical trials, and how to critically assess scientific articles, among other things. The thing is, a year ago, all this may have seemed boring and uninteresting to me. To be honest, I probably would have been bored out of my skull, as maybe some of you are reading this, but now, I realize how important my participation is in relationship to ending breast cancer. I’m telling you, you never want to get that call.As I may have said before, change starts with one person. If each one of us took up a cause, any worthwhile cause, we would change the course of history and could eradicate, hunger, poverty and disease in the world.In case some people have not realized, breast cancer has become an epidemic. Here are the statistics:* Every three minutes, a woman in the United States is diagnosed with breast cancer (www.breastcancer.org). According to the American Cancer Society, about 178,480 women in the United States will be found to have invasive breast cancer in 2007. About 40,460 women will die from the disease this year. 11,100 women diagnosed this year will be under age 40, and more than 1,100 of those women will die. * African American women are more likely to die from this disease.* Currently, there are slightly over 2 million women living in the United States who have been treated for breast cancer. * The chance of a woman having invasive breast cancer some time during her life is about 1 in 8.* The chance of dying from breast cancer is about 1 in 33. * According to the National Cancer Institute, one in every 229 women between the ages of 30 and 39 will be diagnosed with breast cancer within the next 10 years.* According to the National Cancer Institute, breast cancer is the leading cause of cancer death in young women ages 15-54.* There are more than 250,000 women living in the United States today who were age 40 or under when they were diagnosed with breast cancer. * Young women's cancers are generally more aggressive and result in lower survival rates. * Young women with breast cancer generally have more advanced cancers at diagnosis, and higher mortality rates.
At the conference, I spent a lot of time with three of the most amazing women I have ever met in my life, Jenna, Stefanie and Kristen, two of whom have metastatic breast cancer. They are the same age as me. One of them was told that she may not live more than a year or two, but she has. I have yet to see women as alive, as purposeful and as positive as those three. They are fun, vivacious, powerful and articulate. Oh…and they have cancer. As we spent time together, I was overwhelmed by stories of their treatment and inspired by how they see themselves, not as victims, but as warriors, determined to harness and embrace all that life has to offer, and to create a better legacy for the future. Even though they may not be able to bear children, the fruits of future change are their babies.You see, cancer in young women is so aggressive, that all of us were given aggressive chemotherapy treatments, which in most cases destroys the ovaries, leaving the patient unable to bear children. For those who would prefer to sit on the sidelines, I ask you, who will carry on the legacy, if one in 8 women die of breast cancer? Who will carry on our legacy if the women treated will be unable to bear children in the future? For the men who feel that they are not affected by breast cancer, who will care for the children and be partners to those fathers if the women are being killed by this disease. Who will populate the world with more men?The way I see it, our participation in this is not optional, it is mandatory. Who are we to demand better treatments and a cure if we don’t take the time to get involved in how that happens. The women who form NBCC give hours of their time, their resources and their energy to support the cause. Many people walk the walks, do the races and wear the pink ribbons, sport them on bumper stickers, etc. Particularly in October, for some, supporting breast cancer has become a fad, but it is not a fad for many, like my friends and me, who are impacted by breast cancer. We take it very seriously. While we were together at the conference, one friend got the call that another friend had died. We held her while she cried and hugged each other close, reassuring her and ourselves, holding on to each other, because you never know who will get the next call that someone is deteriorating or has lost her battle.As we sat in the corner huddled and tangled together, crying or trying not to cry for the one who had gone and for what so many women will have to go through, we came to a realization, stronger than ever, that we are the ones who need to make the change. I could not bear the thought that one of us in the circle may not be around the next time one of those calls come; that she might be the one the call was about. Throughout the week at the hotel and on the weekend, we talked to anyone wet met about breast cancer and how it might impact their lives. We told them what we did and encouraged them to be involved participants in their lives or in the community. We are not shy about talking about it, because for us, Breast Cancer Advocacy is an everyday event, not something we just do in October. Cures just don’t happen overnight, they take time, and for many, time is running out; for some, it already has.We realized that we can’t just sit back and wait passively for scientists and researchers to give us a cure. Those scientists and researchers need active participants, people who are willing to roll up their sleeves and get involved, people who are going to go the extra mile, take the time to learn, and invest of themselves on a consistent basis. My goal is that we will find a cure in my lifetime. Project LEAD to me, was a gift. I gave of my time, and it gave me something invaluable in return. It gave me the vehicle to realize that I hold more power and influence over the agenda of breast cancer than I thought I did, and we all do. Can you imagine that you could sit on the board of organization or have a seat at a table to decide what kind of grants get funded to do research that could be the cure for breast cancer? Can you imagine working with scientists to design a clinical study that will increase the efficacy of chemotherapy and decrease the side effects of it, like heart trauma and infertility? Can you imagine that by participating in a clinical study, that researchers can find a way to turn off aberrant cells from dividing rapidly and that you might be a part of finding the cure? Think about it. If you get involved, perhaps one less person could be impacted by the disease. What do you think of THAT?In the future, you will be hearing more from me on how you can participate in creating this type of change. I will hold you accountable, because you are accountable to yourselves and the ones you care about, to get involved with this agenda; and you need to get involved now.Until then, peace, love and hair grease. Haha. I’m laughing because I’m happy, but I’m really serious. Get off your butts and do something.Stay tuned for more.

August 15, 2007

Today, I had a moment to think, and I reflected on a couple of things.
For one, I realized that I am just now beginning to come to terms with being a cancer survivor. I know, some people might think, well, treatment’s over, it’s done, and that’s it, but for most breast cancer survivors, as I am sure is true for others who survive cancer, the treatment is the first phase of dealing with the disease, the other part is dealing with the aftermath, because your life is never the same again.
I have met some people who have had breast cancer and want to forget about it. I can respect their wishes, but I just can’t forget. I refuse. I owe it to myself to remember. I owe it to the women being diagnosed every few minutes to remember. I owe it to the ones who survive on this Earth, and the ones whose souls survive, but their physical bodies don’t, and they move on to the next phase of their existence.
I owe it to my daughter and her unborn children. I would never be able to look squarely into her eyes if I did nothing. I owe it to the future generations of people who may be affected by breast cancer. Whenever I look in the mirror and wonder what mark I want to leave in the world, I know that I owe it to me. I owe it to my grandmother, Louise who passed away last year, right after my treatment, because she is watching over me and I told her that I would make a change and make the world a better place, if only for one person, I would do it, as she had for many.
Breast cancer survivorship is such an integral part of me and who I am now and how I have redefined myself. It is not to say that my life is all about breast cancer, but it changed my life in some pretty scary, amazing, wonderful and unpredictable ways. It bettered my life in ways I wouldn’t have imagined, but it also left me with some questions that I wonder about, not every day, but often enough….like two weeks ago.
I was feeling nauseated and ignored it. I figure, I’ve dealt with chemo and kicked its a-s, so what’s up with this nausea, it’s nothing. I can handle this… It will pass. Well, it didn’t. Four days later, it had gotten worse, I began throwing up, and scared to eat, didn’t eat or drink much and well, I ended up in the emergency room getting fluids and a dose of my favorite anti-nausea medication, Zofran. Zofran was my best friend during chemo, and it was my best friend again that day…good ole Zofran. Haha. For those of you who know me, you know I laugh at just about everything…okay…no digressing. Anyway, what struck me about that experience was that, by the time I got to the emergency room, I felt so bad that I had convinced myself that it was cancer all over again. I couldn’t stand up straight, I was in such pain and so nauseated. I was totally convinced that it was last year all over again. By the time I got to the doctor’s station to be examined, I was nearly in hysterics – mostly internally – but I knew I was there. For most people who haven’t dealt with something like cancer, they can never imagine what it is like to get the flu or a cold or something as simple as a headache and immediately start worrying about metastasis or recurrence. People think you’re making a big deal out of nothing, but they don’t understand that when you fight something like cancer and beat it, as strong as you are, there is always that thought in the back of your mind…what if.
Now, I am a firm believer in the Creator and have oceans of faith, but I also believe that there is a season for everything, every person and every creature, and when it is time to go, it is time to go; but, my season is now, and especially after surviving cancer, I love my season more than ever and I’m determined not to go anywhere…and I’m not –at least not for at least 70 or 80 years. I’m determined to live to be over a hundred, and you know I’ll do it.
After I got home from the hospital, I lay curled up in a fetal position for what seemed like an eternity, then, soon enough, I was back up and out in the world. As I walked into work that Monday, tugging my laptop behind me, with my purse on my arm, cell phone in one hand, Starbucks in the other, and my face turned up toward the sun, I closed my eyes, smiled, and thought to myself, “It is so damned good to be alive!” Then, I yelled it out loud, “I’m ALIVE!!!!!” A lady in a car slowed and looked at me strangely, but that’s okay. She didn’t understand; and that was okay. The warmth of the sun felt beautiful. I loved the way the light kissed my face. I felt better. The doctor had told me that it wasn’t cancer again. I smiled at how silly I had been, but I also appreciated the fact that I was where I was. I realize that I am still healing emotionally, and as time goes by, I won’t be afraid that every headache, bone or muscle pain, cold or fever is a recurrence. That won’t stop me from being vigilant, and it also won’t stop me from living life like there is no tomorrow. I thought to myself, “it is okay to be me, however I feel”. It is okay…and it was.

May 5, 2007

Last week I had an awesome opportunity, as a member of the National Breast Cancer Coalition Fund, to participate in their 2007 Annual Advocacy Conference and Lobby Day. From April 28th to May 1st, over 600 breast advocates from the United States and eleven other countries convened in Washington, D.C. for the NBCCF conference. It was amazing, for the first two days, we attended meetings and workshops were we were educated about breast cancer and walked away knowing how to be more educated, informed and better advocates for breast cancer. The women I met there were amazing. They were filled with such passion for the cause… The men were too. At the conference, I met my first male breast cancer survivor. On Monday, as we walked the halls of Capitol Hill to meet with members of Congress and their Staff, lobbying for support for key breast cancer and health legislation, I walked beside women – survivors and those who had been affected in some way - who were fully informed, doing something with that information and utilizing their personal power; that had a tremendous impact on me. They were so strong and purposeful. Each had a personal story of triumph. Members of NBCCF held over 400 meetings. At the end of the day, the reward was the addition of 49 new House Members and 10 new Senators committed to co-sponsoring one of NBCC’s top legislative priorities – The Breast Cancer and Environmental Research Act. This is how people change the world – by each of us taking up a cause and making a difference – one word at a time, one step at a time, and one day at a time – together. People often ask me, “What do you think you’re trying to do, save the world?” And I tell them “Yes”. Then they say, “Well, you can’t do it all.” And my response is, “No, but I can do the best that I can do; and if we all work together, we can make a better world.” Each of us, whatever strikes our fancy, whatever our gifts are, challenges, hopes and dreams, we can make a difference, and not in an esoteric sense, but in a real sense. If you do the thing you feel most passionate about, that feeds your authentic soul and brings you true joy, and you do it well, you are creating a better world - whether it is painting, gymnastics, writing, building, fighting heart disease, lung cancer or just being a good daughter, son, mom or dad. Do what you have to do, be informed, put your heart into it and do it well; that passion can and will create change. For me, what was personally touching about the days I spent with the NBCC was that it was a year ago, that week, that I had one of my first chemotherapy sessions. The session was on April 28th, to be exact and my birthday was the following Saturday, May 6th. It was one of the worst weeks of my life in many ways, and on my birthday, I felt horrible. I could barely sit up straight. Now, only a year later, I spent 8 or 9 hours walking around on my own two feet, with vigor, all over the Capitol, lobbying for legislation that might eventually help to eradicate breast cancer. The next weekend, on my birthday, I was awakened with a kiss by the sun. I opened my eyes. The room was filled with light, bright and warm. I felt like a thousand angels were surrounding me. I thought of my grandmother who had passed a few months ago and said out loud, “It’s my birthday Granny. I know you’re here and I love you.” A year had passed and that other birthday was long behind me, but I didn’t want to forget it, lest I forget to be thankful and grateful for my life and for all of my experiences, the good, the bad and the ugly. Anyway, I lay there with tears of joy in my eyes and thanked God for his wonders. Later that day, my daughter, Noelle and I were at the finish line of the Avon Walk for Breast Cancer, where my Cousin Desepe Vargas walked 26 miles for me, Noelle, her daughters and all the women and men who will be affected by breast cancer this year. When she crossed the finish line, Noelle and I ran to hug her. We hugged and cried, so grateful that we were there together, with all the other thousands of women, alive, fighting this thing, making a change. It was the best birthday. It was a wonderful week and it is a wonderful life. That is why it is so important to use yours, so that we keep it that way. Remember, a woman is diagnosed every three minutes; and this year alone, over 40,000 women will die. Get off your butt and do something. Love ya, Maimah

April 1, 2007

Good day everyone. Historically, my blogs have been inspirational, empowering (I think) and some might say fluffy ( although no one has said that up to this point). Inspiration and empowerment are all good, but today, I am going to let off some “steam” about a topic that has been on the news lately and is close to my heart…literally, a few inches away – my right breast – the one I almost lost. I am not sure if some of you know that when I found the lump, I went to see a doctor immediately, who sent me to a breast surgeon. The breast surgeon did an ultrasound in her office and then sent me for a mammogram. The mammogram results were negative, so despite the fact that I found myself experiencing abnormal fatigue, and urged her to do a biopsy, because the mammogram machine told her that I was okay, it didn’t matter what I wanted. There are two things going on here that are bothersome. One, as educated and experienced as doctors are, they are not the end all authority on YOUR BODY. Only you have lived in that body for every second and every day of your life. You know it better than anyone else. Women also need to remember that feelings exist for a reason. Our body’s responds in certain ways – i.e., fatigue, hair loss, itching, heart palpitations, and headaches, sweating, due to certain internal or external stimuli. So, if your body is telling you one thing and your doctor and the machine are telling you another. Listen to voice you were born with – your intuition; and get a second or third opinion. I didn’t listen to my doctor or believe the mammogram results. Unfortunately I stuck with the same doctor; however, I insisted on a biopsy, which ultimately detected the cancer that had been growing inside of my body. The second thing is that the medical industry needs to get with the program when it comes to the detection of cancerous tumors in the breast. If I had relied on what the mammogram said, I don’t know if I would be around to write this blog. All the talk about getting Magnetic Resonance Imaging (MRI) scans in addition to mammograms as extra insurance in detecting tumors is way late in coming - studies now show that MRIs can detect tumors missed by mammograms. According to a study published in The New England Journal of Medicine, involving 1,000 women with cancer in on breast, MRI scans found 30 out of 33 tumors in the other breast among the women. Further, "one in ten women diagnosed with cancer in one breast will develop the disease in the opposite breast. Having a better technique to find these cancers as early as possible will increase the chances of successful treatment," said NIH Director Dr. Elias Zerhouni. (www.breastcancer.org) It is true that MRIs can cause false positive results, meaning that women might think they have breast cancer when they don’t really have it, but on the other hand if a tumor is detected, even if falsely, a biopsy would let the patient know whether the tumor is cancerous or not. In addition, since we know that one in three women will be diagnosed with breast cancer this year, wouldn’t you want to know? I would much rather go through a biopsy, which can be a rather minor, in-office procedure, than take the risk of losing my breast(s) or my life. What do you think? Breast cancer will be diagnosed in more than 200,000 U.S. women this year and will kill 40,000, according to the American Cancer Society. Which side of the ground do you want to be on? Pushing up the daisies or planting them. I got this analogy when planting my garden this week. I am not purposefully trying to be morbid or scare anyone, but I choose to err on the side of caution, and by posing questions, you can choose to make informed decisions too. You see, in life (here comes the philosophical and inspirational part), you are the captain of your own ship. Living in a world where masses of information are available at your fingertips and choosing to be uninformed on issues that will save your lives and the lives of those you love is unacceptable. I have spoken to many women who still are afraid to get mammograms; are afraid to know, but I can’t help but think of how the same women might react when they are given the choice of having to remove a breast or told that the cancer is too far gone. Anyway, I hope this leaves you with some thoughts about your breasts and how you choose to care for them. Remember, doctors and machines are not 100% reliable. Be educated about breast health and be your own best advocate. Until next time, live healthy and live well. I know I will be. ;O)