Tuesday, September 30, 2008

The elephant in the room...

You know it's there but you'll do anything not to draw attention to it. It stands in the corner as big as a house...yet no one sees it? I don't buy it. We all see it, we just pretend not to because of how it makes us feel, unfortunately for us ignoring it's presence doesn't make it disappear.

Before I was diagnosed with cancer, I knew very little about hysterectomy's. I know that the word hysterectomy was almost taboo and that years and years ago no one talked about them. It left many woman feeling like having one some how made them less of a woman. If your mom or grand mom had to have one, you were often told that they were going into the hospital for a "procedure" or stomach trouble. I still hear woman today trying to figure out what to tell family, friends, boss' and co-workers. Talking about it helps me accept and understand my "new" reality.

I've noticed how people are reluctant to discuss kid's, be it their own or their wish to have one. And let us not forget that weird/awkward silence which I often refer to as the 'Cricket Effect", that takes over a room when I tell people that I can't have children. I assume it's because I'm so young, yet sometimes I think it's because they can't imagine how they would deal if faced with the same situation. Whatever the reason, it only makes the situation worst. I don't want to be handled with kit gloves. No everyday is not an easy one, but there are many people who are facing greater obstacles and for me that puts everything into perspective.

My decision was as easy as a choice between life or death. I'm upfront and direct when asked whether or not I can have kid's, maybe a little to direct for most. While I understand that this is a hard nut to swallow, it's something I live with everyday...something I don't have the privilege of ignoring.

So here I am, thrown into instant menopause complete with insomnia and hot flashes. I will break out and fan myself at any moment, but having my own private summer isn't as bad as I thought it would be. When I hear a great baby name I still make a note of it. I still dream that one day we'll be swapping out our oh so comfy guest room for a nursery, but until that day I'll continue to be happy and content with where I am at this moment and at this time.

Saturday, September 27, 2008


I'm attending a wedding this weekend so it'll be slow blogging this weekend, however have no fear...I'll be back before you know it!!

Have a blessed weekend!

Thursday, September 25, 2008

I'm NOT my hair...or am I?

I was pleasantly surprised that I handled my hair loss so well...but honestly when you're fighting for your life, whether or not you have hair on your head seems like a pretty trivial thing to worry about. So what if I look like an alien on the sci-fi channel or as yoda frrom Star Wars fame...my focus remained on kicking cancer's butt!! My love affair with mirrors goes as far back as I can remember...there were times when we didn't see eye to eye but like anything worth fighting for, we were able to overcome our differences and overall we've had a beautiful relationship. I've had some of the best times of my life with my friend mirror...so the idea that I could no longer stand the sight of one is a little unsettling to say the least.

I almost skipped writing about this chapter in my life, fearing that I might come across as super shallow...I decided to move forward because if I didn't, I wouldn't be true to myself and if I'm not true to myself...then the writing should stop here. Censoring my journey is not what I signed up for, so I'm apologizing in advance if there's anyone out there who might view this post differently. I'm aware that there are many people who are still fighting for their life and my thoughts and prayers are with them always. However, my battle of the bulge, hate affair with my locks, and pure displeasure with all that cancer has left behind deserves a voice.

A year ago, I was told that I would lose all of my hair to chemotherapy. Today I'm proud to announce that there's quite a bit of activity on my head, unfortunately for me my hair has taken on a life of it's own, quickly becoming more foe than friend.

I knew things were getting bad when I found myself trying to avoid mirrors like people trying to avoid the plague. I view every new stand of hair I have as a symbol of the war I won against cancer...yet in the end what I've come to realize is that I'm still a woman. I have needs, wants, hope's, aspirations and dreams. I've spent the last year of my life trying to make sense of this senseless disease which has actually turned into a welcomed distraction from the physical transformations I was going through. I didn't have time to wallow or pity myself, yet now it seems as if I have nothing but time on my hands...as I've spent the last seven days obsessing about my TWA(teeny weeny afro) and wondering how I can make it go away, hoping against hope that I could get the real "Kia" to make a guest appearance...maybe even stay awhile.

I was so tired of looking like a powder puff girl that I decided to take matters into my own hands...that's right, I got a weave!! My options were a perm and haircut which I would have to maintain with weekly/bi-weekly visits to the salon or a weave...a temporary solution that will last up to three months, with very little maintenance. No brainer for me, a weave it was. This will give my hair a chance to grow and hopefully get to the point where I can manage my new found texture without wanting to scream!

The physical, mental, and emotional effects of cancer are constantly revealing themselves even months after your last treatment or surgery. It should no surprise, but somehow it always is. You've done all that was required of you like a good girl or boy...so pass me my "A's" and let me move on to the next grade...easier said than done.

Wednesday, September 24, 2008

Dirty rotten scoundrals...

If I didn't want my blog to remain PG-13 (the "13" is because I talk about ovaries and such) ,I would be lighting up the page with a few choice words that I only utter in private...

As I told you before I have a friend that is battling breast cancer, a single mother of 3. She's completed months and months of chemo and radiation all of which she worked through...dragging herself each and every day to the office when she should have been able to stay in bed and allow her body the chance to recuperate from the toxic poison's that were just dumped into her body.

She's at a point where the effects of the chemo have taken a toll on her body and she needs time off to get herself better. She has the documentation from her doctor to support her request for short term disability(which she pays into by the way), yet that isn't enough for her company.

How is it possible that we live in a country where it's possible to go from being able to pay your bills and keep a roof over your head on Tuesday, to not knowing where you're going to get your next meal from by Thursday...This is not just the story of my friend, it's the story of many...

When are we going to start holding these companies accountable for their actions and stop praising them for the great job they do cutting corners and utilizing loopholes to gain even more profits?

Monday, September 22, 2008

How do you get through the storm...coping with Ovarian Cancer

As September comes to a close, I wanted to remind everyone that although September is "officially" Ovarian Cancer Awareness month, the symptoms for Ovarian Cancer are something that we should all be aware of every day. I've seen more ad's and article's about Ovarian Cancer this past month than I've ever seen and I'd hate to see the momentum disappear.

A friend from NY e-mailed me today to let me know that she shared a taxi with Kathy Bates this morning. Before you get your britches in a bunch, they didn't actually share a ride, Kathy was on a commercial playing in the taxi...a commercial about the symptoms and warning signs of Ovarian Cancer and as a former New Yorker I can tell you that this is great exposure because New Yorker's spend a great deal of their day riding around town in taxi's.

OVCA is no longer silent. The symptoms are vague and they may require you to be a little more diligent and in tune to what's happening with your body, but they're there...we should never be afraid to voice our concerns...no matter how small or trivial they may seem.

  • bloating
  • abdominal pain
  • frequent or urgent urination
  • pain during intercourse
  • back pain
  • feeling full quickly
  • nausea or gas
Since being diagnosed with cancer, I've often been praised for how well I've dealt with my illness. Although I appreciate the compliments I don't think that I'm any different than anyone else whose been faced with an unwanted/unplanned/unpleasant detour in life. I don't think I made a conscience effort to approach it with an open mind, things move so fast once you're diagnosed that you have no choice but to move forward and I wouldn't be human if I didn't admit that some days were harder than others. I still have days where I literally don't know how to put one foot in front of the other in order to get from point A to point B. Sometimes it's because I don't know what to do next and other time's it's because I'm afraid that once I take that step forward, the other shoe is bound to drop.

Here are few things that helped me navigate my journey...
  • Family and Friends
  • My belief in God and that we're never given more than we can bare
  • Support groups(Ovarian Cancer Alliance of Florida and Daily Strength)
  • Positive Thinking
  • The ability to allow myself to grieve
  • Communication(not the easiest thing to do)
  • A good cup of tea
  • A good laugh
  • A day or two where I left cancer at home(thanks to my husband)

If you're reading my journal and you're battling a monster of your own, I encourage you to leave a comment about what tools/resources you used to weather the storm. Sharing because you care enough to, is the only way we can all get through this...

Sunday, September 21, 2008

Teal Is The New Black...

Blogging is sooooooo freakin cool! I can't believe I stayed away from it as long as I did...why didn't someone let me know how much fun I've been missing? I hope you enjoy reading it as much as I enjoy writing it. Through blogging we have the power to help, support, and encourage one another across oceans...

I've added a few things to my website that I want to make mention of. First, if you look to your right I've added a poll about how often you go to the doctor. As I've said before my mission is to increase awareness of Ovarian Cancer in addition to helping all woman become empowered when it comes to taking control of their health. The poll is simple, you only have 4 options...all I ask is that you be honest with me and most importantly honest with yourself.

I'll be the first one to admit that time can get away from me and it's okay. Sometimes we push things like visits to the doctor aside, especially when we're feeling good. So if you're someone who can't remember the last time you went to the doctor don't feel bad about it, take action. Hopefully my blog and poll will inspire you to make that dreaded appointment.

The second thing I'd like you to take notice of are the entries under my favorite websites(lower right side)...dailystrength is a online support group for everything under the sun. It was and still proves to be a valuable resource for me as I continue my journey. I've met a wonderful group of woman there...feel free to stop by...lurk...or hopefully join in, I promise you won't regret it. The other website is a PERSONAL favorite...Teal Is The New Black is a website I created to help me get my message out there. There's some great information on Ovarian Cancer, woman and minority health care issues and a message board/forum that I hope at some point will be rocking as much as facebook does...

You'll here a lot from me about teal, as I along with many other woman hope that one day it will be synonymous with Ovarian Cancer as pink is to breast cancer.

Friday, September 19, 2008

Back on the wagon...

So there are ton's of side effects with chemotherapy. Constant reminders of what your going through and what's happening to your body as a direct result. I'm having trouble kicking one of my side effects to the curb. It's really good at lingering even though it's completely worn out it's welcome. I'm feeling pretty good now, I no longer have use for it, yet it doesn't seem to get the hint. It sits on my hips, my thighs, my stomach, my arms, my legs...okay you get the idea. Who gains weight on chemo? ME! I ate enough to feed a third world country. My hubby(never thought I'd be the type to use the word hubby, but I love it), he ate out of solidarity, hence the reason behind his extra pounds...I won't disclose his tally...maybe he'll do a guest blog and share some of his secrets...after-all I wouldn't want to mis-represent him by getting his numbers wrong:)

My treatments were on Tuesday's, once every three weeks. The infusion process is about 4 hours. Your first one is a bit longer, because everything is new to you. You start your "cocktail" off with some fluids and some not-so-friendly-to-a-girl's-figure steroids...followed by benadryl(prevents allergic reactions, makes you so so happy, and knocks you out) chased with anti-nausea med's and the first bag of chemo...after the first bag you are given an even nicer cocktail that starts with even better anti nausea meds and for me a second bag of chemo.

The effects of my chemo usually subsided by Sunday with Saturday being my first almost normal day and the day that my major eating commenced...my food of choice...Chinese! Besides being so yummy, food kept my nausea at bay...and if you know me at all you know that throwing-up is my least favorite thing to do, see, hear, or smell on this planet!! My biggest concern about getting cancer and having chemo was whether or not I was going to throw-up. We've all seen the movies...I can't imagine a worst punishment for me than a room full of throw-up, hooked up to a pole that's attached to a socket in my chest, with no where to run.

I was kind of proud of myself at first...weird huh? I mean it felt pretty good to say, yes I'm keeping my food down, nope no problems eating, yes everythings great...I felt like a champion...a superstar, it was one less thing that Ovarian Cancer had over me. I had a steady gain of about 5 pounds per session...Hey, when I do things, I do them right...no half steppin here!

So here I am blogging about food, thinking about what kind of "treat" I'll give myself for finishing this entry...I haven't decided yet but I know it will be low in points. Yes, weight watcher points...back to the drawing board for me. I've got my handy dandy scale and measuring cup and I'm getting pretty good at counting out my 20 mini pretzels, I can even count them in my sleep.

The great thing is that I know I'm not alone. The more I speak out about Ovarian Cancer the more wonderful women I meet and the more I realize that it's okay and things do get better. You can check out some of their fabulous blogs if you'd like, I've got them listed under "my blog list". There are so many reminders of what we've been through and for most of us our lives will never be the same. We didn't surrender to cancer and we won't surrender to anything that cancer has left behind...including a few extra pounds.

Many say that eating healthy and maintaining your weight is so important when you are fighting an illness like cancer and I agree. For me, I threw caution to the wind and went with whatever made me feel good and in the end I think that's all that matters. Doing what's right for you.

Tuesday, September 16, 2008

Nothing to fear, but fear itself...my day at a health fair

I spent most of today at a minority health fair in Orlando sponsored by Tom Joyner's, Take a loved one to the doctor day. I worked with the Ovarian Cancer Alliance of Florida, a wonderful group of woman who have made tremendous strides in spreading awareness all across central Florida..and for whom I am so glad I had in my corner.

I'm so proud of all of the people who decided to come out today and take part in the free screenings for diabetes, prostate cancer, cholesterol, HIV AIDS and many other illness' that plague our community. It's not easy to face your fears and for many, fear of the unknown and fear of Doctor's go hand and hand. A lot of us walk through life seemingly oblivious to all that surrounds us, while secretly praying that diseases like diabetes, cancer, or HIV AIDS stay as far away from us as possible. Yet, deep down we all know that no one is exempt.

What I realized most from my experience today is that there are a lot of people in this world working to help make a difference in someones life. They weren't just there to test you and send you on your merry way, they were there to provide valuable resources that can help you in your journey. My question is how do we get more information about those resources out there to ease the minds of many.

One of my biggest concerns when I started my mission is that my words wouldn't live past the moment. I don't worry so much about those who have medical insurance. I'm comfortable knowing that when I share my journey with them, many of them will have access to resources that will help them, should that time ever come. What leaves me restless is wondering what happens to women who don't have those resources? Like I've said before, education and awareness are great, but what happens after that? How do the 47 million Americans who remain uninsured act on the information and education that we work so hard to provide them with?

I had a few woman who tried to walk by us, while still trying to take a sneak peek at our display. It was as if cancer was contagious and that by acknowledging it's presence they would some how go home with it as a parting gift. I had moments where I felt that no matter how much I stressed that Ovarian Cancer is not something that can be detected by your yearly pap smear and that I was proof positive that it doesn't discriminate...I still had the feeling that a lot women remained disconnected with what I was saying. I'll go on record to say that I might be overreacting a bit considering how passionate I am about this disease, but whatever the case, it just makes me want to work harder to get my message out there.

Monday, September 15, 2008

A thief called "Ovarian Cancer"

There's a new thief in my town and it goes by the name of CANCER! There's nothing you can do to protect yourself...you just have to be ready to do battle when the time comes. It's presence in my life has robbed me of so much and there are times when I still can't let go of all of the anger. Some days are better than others but this weekend I had one of those not so good or accepting days. Cancer has stolen my hair, my choice to have natural children, my ability to get life insurance or any other secondary insurance for that matter, and most importantly the lives of way too many people. With that said and as angry as I am, I refuse to let it steal my focus, drive, determination, or identity.

When I have these moments I'm so grateful that I am able to stop and check myself. I know now more than ever that I'm here for a purpose.

I often think about a woman that I had chemo with a few times. We were diagnosed around the same time and pretty close in age, she was 38. She was diagnosed with late stage Ovarian Cancer. Armed with a smile, always laughing and just a pleasure to be around you would never know that she carried the weight of the world on her shoulders. Sadly, my chemo friend lost her battle with Ovarian Cancer just a couple months after I last saw her...bringing her 9 month journey to a rapid end. When I last saw her, she told me that she had kicked cancer's butt and she was saying goodbye forever to the chemo room. I'm sure she had the same feelings as I did about that room, as nice as the nurses and other patients were...it's probably one of those places you could have gone your entire life without ever seeing. I envied her way of thinking and positive outlook. I use that inspiration daily, more than she will ever know. She left behind a husband and two little boys, who although I've never met, I also think about often.

I fight this fight with, alongside, and for beautiful woman all around the world. I don't know where my mission will take me, but I plan to make sure I enjoy every step of my journey.

Tomorrow I will be helping out with the Ovarian Cancer Alliance of Florida at a community health fair(Take a loved one to the Doctor day). I'm so excited to have this opportunity to give back and hopefully help someone else along the way. I encourage you all to think about those around you who could really benefit from a ride to the doctor, the grocery store, or even an afternoon stroll around the park. It's so much easier to do things together, yet people can't seem to resist the impulse to go it alone.

Tuesday, September 9, 2008

Care-Givers...the forgotten ones

Between the phone calls, floral delivery's and e-mail, it's often hard to keep up with all of the fan-fare that surrounds you when you are first diagnosed with an illness like cancer. However, sometime between dealing with your new "reality" and your new "normal" life as we know it goes on for the rest of the world, often leaving you with a feeling of loneliness and alienation. For some, the new found quiet is deafening. The silence is unbearable. Personally, I relished the idea that life would go on as normal, it somehow made what I was going through less real or even secondary. It was a good cover; the first person to blow my cover was my husband, because if you ask him...he'll probably say that cancer often came first. Whether it was anticipating the next chemo, the next doctor's appointment or scan...cancer was always there.

You can add the job of care-giver to the ever-growing list of the most under appreciated jobs in our country. They often feel scared, helpless, and frustrated... and in need of their own personal escape from reality. Their new reality. Only there's no escape...they're in it for the long run and the long haul. Just when you don't think you can't go any further or when you're not sure if winning the battle is worth fighting the war...they're right there beside you cheering you along the whole way.

I remember going to an Ovarian Cancer fundraising luncheon with my husband. They asked all of the Ovarian Cancer patients to stand up, followed by all of the survivors. They then asked that all of the care-givers stand up. Wow, the care-givers...this underrated, awesome group of individuals that never tire. I had chills. I held back my tears, because once I get going there's no telling when things will simmer down. It was at that moment that I first realized that this is their battle too. As the patient you often get consumed with all that you have to endure and the reality that something like this is actually happening to you. Too often we forget to stop and take notice of those around us. Those who make this road we're on a little easier to travel..

So when we celebrate, we can't forget our biggest champions. We can't forget how much harder this fight would be, without them by our side.

We're all looking and longing to be free... each in our own way.

Saturday, September 6, 2008

Teal Time...taking control of cancer

Yesterday, September 5th was the 3rd annual "Teal Time", a day when everyone was asked to wear teal in an effort to create awareness for Ovarian Cancer. My hubby and I did our part, as you can see from the pics I've included. We looked like tourist at Disney world, which is actually pretty close to where we live. It is the hope of many woman that we can make the color teal as synonymous with Ovarian Cancer as pink is with Breast Cancer. Don't be sad if you missed yesterday's teal, you still have a chance to join in every Tuesday for the rest of September.

You'll see from the picture's that my hair is starting to grow back. It's kind of a tight curly fro, I'm trying to go without a relaxer as long as I can...we'll see how that works out. Once it starts to grow, it moves pretty fast. I went from looking like Yoda to looking like Angela Davis in a matter of weeks:)

Before I was diagnosed I had shoulder length hair. I had been growing it out for a year or so,before then I use to wear it very short and sassy. Truth is I go back and forth, especially when I see someone sporting the opposite of what I have at the moment.

All of the literature I read after my diagnosis said that one way to take control of the cancer was to cut your hair before it starts to fall out. Not ALL chemo will take your hair out. However, the two types that I had(Taxotere and Carboplatin) were not the exception. One of the first things my doctor told me after telling me I had to have chemo was that I would DEFINITELY lose all of my hair.

While sitting in my first chemo, I called my hairdresser to schedule a cut for the next day. I had no idea what side effects chemo would give me, but I knew that I didn't want to see my hair shedding in the shower or laying on my pillowcase when I woke up. My hairdresser speaks Spanish and a handful of English, so I'm not sure she understood what I was saying as I screamed into the phone...I HAVE CANCER, I HAVE TO HAVE MY HAIR CUT!
Armed with my best friend by my side, I walked into the hairdresser the day after chemo to take control...although I was groggy and sleepy I proceeded to explain my story. Next thing I know, the waterworks are flying and my stylist is ushering me in the back. She sat me down and proceeded to pray for me. So now here I am crying harder and harder.

All I can say is thank goodness my friend was there(thanks Tasha). I was in no shape to carry on with my movement. Tasha explained what I wanted done(of course this is all secondhand information, I heard none of this) and my hair cut was complete.

I want to say thank you to a anonymous woman. When I turned to pay my hairdresser, she let me know that someone in the shop had already paid my bill. A woman who didn't know me, but had heard my story paid my bill. A life changing, heart wrenching day, was brought to a close by the beautiful gesture of a complete stranger.

Thursday, September 4, 2008

Stand UP 2 Cancer and more....

There's so much going on in my brain right now. There was once a time...actually just a week ago...when I thought I wouldn't have enough to say on this blog. Now I've got so much to say, I can't figure out what to write down first.

So here goes...

Tomorrow, Friday September 5th all three major networks will air "STAND-UP 2 CANCER" simultaneously, starting at 8pm est. It's a star studded event to help raise awareness of this senseless disease that claims the life of 1 person every minute of the day, 1500 people a day. 1500 of our son's, daughters, mother's, father's, and children die everyday. As Charlie Gibson put it this morning, we spend more money on checking purses and shoes at the airport than we do on Cancer research. Before you get started, I truly believe that we should invest money in keeping our country safe and we should do whatever it takes to make that happen. I think in some instances, like airport security we need to be willing and able to revisit the situation and assess whether or not we still need the same measures to support that cause. I know it's easier said than done but we have to figure out how to distribute funding so that no one is slighted. The main reason behind Stand Up 2 Cancer is that we are so close to a breakthrough and cure for cancer, but with limited funded, less and less everyday...we're never going to get there. We'll be taking great strides, BACKWARDS!

This brings me to my next dilemma.

As I've said before, my mission is to spread awareness of Ovarian Cancer. It's also my mission to bring awareness of this disease as well as others to the attention of the underprivileged people in our society who are being left for dead due to the disparities in health care. It's great that we are educating more and more people each day, but how do we get these people to take notice and follow up with a visit to their doctor? How do we get people who don't have insurance to trust the "system". People who are willing to deal with all of the aggravation that comes along with trying to get equal and fare attention and treatment from qualified health professionals. That's the question I don't have answers to. Yes there are free clinic's and emergency rooms that some people(I won't name names) actually think is the answer to it all. Funny, because just a few months ago a woman ended up dead on an emergency room floor in Brooklyn while waiting endless hours to receive care. What do we say to people like that? What do we say to their families?

I'm frustrated. I feel guilty. Guilty because I was fortunate enough to have a two-three week wait between the discovery of my mass and surgery to remove it. Followed by chemotherapy shortly thereafter. The prompt attention and swift call to action its the reason I am here today. How do I convince other women that they have the same chance with early detection and quality treatment? I'm not sure I can.

Tuesday, September 2, 2008

Moving on after cancer...

For some it's easier said than done. I just came back from my Dr.'s appointment, it was the 8 week follow-up after my hysterectomy. I had blood drawn to check my CA-125 level(a blood test that's used to detect the presence of cancer in your body). Normal range is from 0-35, if that comes back all-clear, I see the Doc in 3 months. Wow, 3 months without worrying if and when the other shoe is going to drop. I've been out of chemo for almost 6 months and although it gets easier to proceed with your everyday life, you can't help but reminded that there is a big fat TEAL elephant in the room. Can we ever really move on?

I will say this...I think about cancer less and less each day. When I was first diagnosed and going through treatment it was all I could think about. Your life and unfortunately the lives of those who care for you become consumed with it. I still think about it, but little by little I find myself planning and looking forward to the future. Getting back to work, becoming the best OVCA advocate I can be, adopting kids...getting on with my wonderful life. But along the way, you can't help but to think about those who have lost their lives to this senseless disease. People you know, many who you don't...but who nonetheless meant the world to someone of this earth. Sometimes you feel guilty. Why were you the chosen one and not them? They call it survivors guilt. Here I am, laughing and joking at the Dr's office, enjoying the taste of yummy food afterwards, and taking in the view of my "new" curly hair when that person you sat next to in chemo is no longer here.

When you're going through treatment you know where you stand. You know how many rounds of chemo you have to have, you know what days you have to have your blood work completed...there's a plan, a schedule, a purpose. A once independent and ambitious person, suddenly finds them self looking for direction, acceptance, and approval. When does it ever feel like cancer was apart of your journey and not something that defines you?

Monday, September 1, 2008

September is Ovarian Cancer Awareness Month!

September is Ovarian Cancer Awareness month! Ovarian Cancer Ribbon - Grey Blue Myspace Comment
I'm proud to be a part of this sisterhood. I've met an amazing group of women who share in the fight to beat this disease. To all of the advocates, Doctor's, and nurses who make our journey just a little easier I say thank you and god Bless you!