Monday, December 22, 2008
Merry Christmas From Heaven
I still hear the songs
I still see the lights
I still feel your love
On cold wintry nights
I still share your hopes
And all of your cares
I’ll even remind you
To please say your prayers
I just want to tell you
You still make me proud
You stand head and shoulders
Above all the crowd
Keep trying each moment
To stay in his grace
I came here before you
To help set your place
You don’t have to be
Perfect all of the time
He forgives you the slip
If you continue the climb
To my family and friends
Please be thankful today
I’m still close beside you
In a new special way
I love you all dearly
Now don’t shed a tear
Cause I’m spending my
Christmas with Jesus this year
Sunday, December 21, 2008
Maybe it's that I feel like I haven't had any new revelations or profound thoughts to share.
Maybe I'm tired of hearing the sound of my voice cheer leading and championing for the greater good of Ovarian Cancer.
I'm not sure.
I just know that the moment I sit down to write, I become extremely anxious and fidgety.
I'm annoyed easily and quickly frustrated.
I'm forcing myself to complete this post, as I don't ever want to lose what I've started here. As I start to become more of old myself and resume life as planned, I may be tempted to forget about my mission and slip into an heavenly abyss of what I perceive to be a normal life.
Is it that I only feel like writing when things are going bad?
Do I feel guilty writing when things are going well for me, but not for my friends who share my battle?
Again, I'm not sure...
Don't get me wrong, I'm so grateful and happy that I'm feeling well, I'm kicking cancer's butt, and that I'm able to enjoy the holiday season stress free. I'm having a great time, enjoying each and every moment.
And trying really hard not to let Ovarian Cancer steal my thunder!
Thursday, December 11, 2008
I was diagnosed with Ovarian Cancer three weeks before my first wedding anniversary. Not quite the anniversary present I was looking for, but at least I was here to celebrate...this totally rocked our world. All that we knew to be true, we now questioned and how to navigate this new part of our journey would soon reveal itself.
I know a lot of people say that they couldn't have made it through the storm without the support of their significant other. I'm pretty sure I would have made it through, but it wouldn't have been the same. My husband is my biggest fan!! He supports me, but he won't pacify me. Translation~he won't let me fall down the black hole of self pity and despair. I'll admit at times I've uttered a few choice words to him(under my breath of course), but in the back of my mind I knew that he was right. I knew that I was capable of much more than what Ovarian Cancer was trying to dictate. Yes, my parents and friends are an amazing support system...but I can still get away with murder especially when it comes to my dad:) And for parent's, I think it's incredibly hard to watch your child go through a life threatening disease. Children aren't suppose to live this earth before their parent's and when that happens at any age it's so hard to come back from that. So I did my part by remaining upbeat and optimistic when talking to the folks,wanting to spare them as much grief as possible.
Because of this, my husband was privy to all things cancer, be it good, bad, or indifferent. That's hard to process, let alone live with. I always knew we would make it, because I know who we are at our core and as my husband says "nothing is bigger then us". What I've come to realize now that I've come out from under the rock is that a lot of couples aren't able to weather the storm that an illness can bring about. It's life changing and if you've got plans and a direction that you're already heading in, it can be hard to navigate your way through. We all repeat some version of the infamous "in sickness and in health" vow's when we get married, yet for many people those words go right out the window when put to the test.
Honesty was the key for me. Being open and receptive to hearing the other person's point of view was also key. Let's face it, anyone who knows me knows that I can be pretty dramatic at times. So when they outline a list of a hundred "possible" side effects that you can get from chemo, I'm the type that would think that I had them all. My husband's the type of person that doesn't buy into things like side effects. How did we mesh the two worlds? A lot of dialogue, topped off with a little bit of "I told you so":) Things will change, but as in life you have to be open to changing with them. I know this is easier said than done, as I'm still having trouble in this area. Some day's will be great and some day's will feel like you just took twenty steps backwards.
Being able to say, I hear you makes the world of difference. I may not agree with you, but I hear you and as long as you hear me, we're moving in the right direction.
Tuesday, December 9, 2008
Friday, December 5, 2008
As I've stated before the only way to successfully complete my mission of spreading Ovarian Cancer Awareness is by being honest and hopefully with that honesty I'll be able to reach more people than I ever thought possible. Unfortunately, some of what I have to say can be a little hard to handle for my loved ones. So as I continue to throw caution to the wind, I would like those who know me personally to remember that this is all apart of my journey...a journey to a happier, healthier,me!!
Wednesday, December 3, 2008
I'm sure my friend will be reading this entry, as she usually checks in to catch a glimpse of my inner-thoughts...I know for a fact that she will check in as today was a day of joy, elation, sadness, and lost all wrapped in one. I tried my best to explain to my friend that this is just apart of life, my life..my path. I understand her compassion for me and my situation, but I don't ever want anyone to mask their joy or feel sorry for me. I can't speak for all women in my situation, but I can say this for myself without any doubt...the best way to handle me is to be normal. Don't allow me an opportunity to wallow, don't treat me with kit gloves...I won't break. This method will not work for everyone, but for me I think it's the answer.
What I promised my friend is that it's true, I will have my moment's there's no escaping them...but my moment's would come whether she was pregnant or if any other women I encountered in my travels were pregnant. It's part of life. It's part of being a survivor. There are so many things to grateful for, most of all I'm grateful that I'm of sound mind and body and for me that trumps everything.
I love you girl!! God bless you and your wonderful miracle!!
Monday, December 1, 2008
I'm getting ready to go to the Dr.'s office shortly, I have an appointment to get my CA125 drawn(blood-test used as a tumour marker to gage the presence of cancer in your body). Next week is my 3 month check-up, so we have to have those number's in before I see the doctor. My check-up is looming over my head, yet I'm not really nervous about it...I'm probably more anxious than nervous. I'm ready for him to say keep doing what you're doing and I'll see ya in 3 months!!
It's funny, I was talking with a friend today and she made mention of how crazy it was that my life was now filled with Dr.'s appointments and such...It reminded us of how quickly life can change. If it's one thing I've learned from my experience with cancer is that we're resilient. We can adapt to any situation and in time it can become a seamless part of our lives and our day to day routines...At the time that new things are presenting themselves in our world and change becomes inevitable...it feels like something that is so foreign could never become so routine. Yet it does...sure there are days when you still wonder when you made that left turn and got off course...but for me there are many more days when I realize that it's all par for the course...
Saturday, November 22, 2008
Wednesday, November 19, 2008
Speaking to the group of nurses reminded me of the big picture. It reminded me that there is a reason for all of this madness:) The night before my presentation I was so annoyed and fed up with the world including all that cancer has robbed me of...only to be reminded the next day about the gift that it has also given me. An even greater appreciation for life and the ability to help other's in more ways than I will ever know.
During my presentation I talk about my diagnosis, my treatment, and surgeries. More importantly, I talk about me. I speak from the heart. I remind people that there is a face behind every disease and that whatever your obstacle is, it doesn't have to beat you. After I finished my presentation a beautiful young(I felt extremely old amongst all those wide eyed college juniors) woman ran up to me and thanked me. She's a Hodgkin's survivor of two years. She thanked me for sharing my story. She thanked me for making her feel like she wasn't alone. She too lives with that nagging feeling that her cancer will return ,something that those around her can't seem to wrap their heads around. It was refreshing for her to see and hear from someone who gets it:)
I'm not saying that the only way to get it is to be a survivor or a patient, but in some ways you kind of do. I don't think any of us knows what another person is feeling unless we take a walk in their shoes. Sure we can empathize, but we'll never really know.
Thanks for the many words of encouragement. I pray that we are able to continue to lift each other up and that no weapon formed against us shall prosper...
Sunday, November 16, 2008
I have many friends who are experiencing recurrence's of Ovarian Cancer right now. I really don't get it. Ovarian cancer is like an annoying fruit fly. Just when you think you've got them all, here comes another one. I normally have a pretty good outlook when it comes to my situation. I know there are people far worst off than me...but this is a blog and the only way to really appreciate my blog is for me to be truthful and let you in whether things are good--bad--or somewhere in the middle. And right now, things are somewhere in the middle.
I'm tired. I'm tired of feeling uncomfortable in my own skin. I'm tired of worrying about every little ache and pain. I'm tired of people telling me that everything will be okay. I'm tired of watching my friends endure treatment after treatment, surgery after surgery. I'm tired of being afraid that at any moment on any given day, the other shoe will drop. I'm tired of feeling guilty for feeling this way. I'm tired of watching people with perfect lives-the perfect house-the perfect marriage-perfect children-perfect health-and the perfect job.
There's no rhyme or reason to the way I'm feeling today and I'm sure tomorrow will be a better day. For right now, this is where I am...not where I'll stay.
Wednesday, November 12, 2008
Tuesday, November 11, 2008
For some people getting your port out is a milestone that marks the end of your journey. For some keeping it in is like a safety net... me I'm somewhere stuck in the middle. I would love to have my port out, a tangible piece of cancer that signifies the end of my journey and that the war is over. But then there's the part of me that remembers that if I should ever have to have treatment again, my life would be a lot easier if I still had my port. It may seem trivial, but when it comes to cancer you really learn to count your victory's in small digestible doses.
Doctor's vary on this topic as do patients. What's important is that you do what's right for you. Blogging for me is a way to take some of those jumbled thoughts that are running around inside my head and make some sense of them. Blogging for me is way to help other's who may walk in my shoes. It's not meant to be an exact science, as I am completely new at this. I'm muddling my way through and hoping that in the end I'll be able to say ah ha!! Imagine that my very own ah ha moment! Look out Oprah!!
Friday, November 7, 2008
This is a quote from the fortune cookie I had today. It was actually inside my husbands cookie, but once he read it...he immediately passed it along to me.(I believe that it still counts as "my" cookie and even if it doesn't I'm running with it) I've been struggling lately with trying to figure out what to do with the rest of my life. Which is I guess is why it ended up on my plate:)
The hard part about Ovarian Cancer is that there is a high recurrences rate. Simply put, it's one of those cancers that just doesn't get it. You use ton's and ton's of toxic chemical's and radical surgeries to beat it...yet more often than not it has this unique ability to find it's way back to you. So with that cloud ALWAYS hanging over your head, how do you move forward?
So in the meantime, during my little hiatus from being a functioning member of society, I've been dreaming. I think dreaming's great, after all without dreams how will you ever grow? The problem is what good are dreams if you're not going to take action. This is not a political website, but I feel like I must make mention of the major historical event that happened in our country this week...when Barack Obama was elected our 44th president. Political parties aside, what happened this week was a far away dream of many men and women. And what happened was a direct result of the actions taken everyday by these same men and women. It wasn't something that was thought of and then forgotten about. Things happen in life. Things happen that may distract you momentarily. What's important is that we remember that it is just that, a moment and although that moment may alter our plans...it should never keep us from moving forward.
Sunday, November 2, 2008
For the first time in my life I'm nervous about this time of year. Normally, I would roll over what ever plan we currently have to the following year,however this year my husband's company announced that they will no longer offer that plan. Before last year, I was a healthy woman and this announcement wouldn't have made a difference. Now I'm a cancer survivor with a team of medical professionals that I know, trust, and love and for whom I may not be sitting here today. What if my Doctor doesn't take this new insurance policy? Leaving our doctor is not an option....staying with my doctor as an out of network participant would be my best bet, but the thought of having to shell out thousands and thousands of potential dollars that we don't have seems almost unfathomable.
After my initial panic I decided to check the website of my future policy to see if my doctor was a participant in the plan, I probably should have done this first...but panic takes over and I seem to forget the most logical of next steps:) The good news is that my doctor is in the plan. I'll place a call to his office tomorrow just to be sure we are choosing the plan that will give us the most bang for our buck. The one that will offer the same level and quality of coverage that my old plan provided.
What I forgot while going through my dilemma is that no matter what I still had a choice, which is something that many people don't have. So things may not have turned out as great as I would have liked...but I know it will be okay. How many of us can say that?
I'm posting a link to an article I wrote about minorities and health care. I hope you'll read it and take time to think about some of these issues and although it may not effect you personally today, you never know when it will.
Friday, October 31, 2008
I was relieved to see that after meeting our friend she wasn't one of those people that immediately says, "ooh your hair is so cute" or "wow you picked up a little weight" So I spent the first half hour anticipating those dreaded comments of which I was prepared to smile, nod, and agree all the while wishing that everyone around me would just disappear. Time came and went and still no annoying comments. Our mutual friend then proceeded to talk about herself for the next hour! Finally the world didn't revolve around me and my troubles...I didn't have to talk about how I'm feeling, how I was diagnosed, when will I go back to work, or what I'll do next. I can't remember if she new about the cancer, but I know that if she did, someone did me a big favor by giving her temporary amnesia.
The mind game that cancer plays on you is taxing. It's something that you can't escape, something you have to learn to manuever around. A task that's easier said than done. I know that life will never be carefree for me again, but I'd like to get as close as I can to that feeling. Last night came close. We had a great dinner, scary haunted houses, and some salsa dancing to top the night off. I forgot about my hair, weight, and all that cancer has left me with or without.
Wednesday, October 29, 2008
On Saturday I had my 35th birthday party!! Before you start shouting birthday wishes, my actual b-day isn't until November 12th. I had my party early to avoid the Thanksgiving rush. So I named my party, Kia's 35 and Alive party!! Although I never believed I wouldn't make it another year, I can't say that the thought didn't cross my mind. I'm also the same person who never thought they'd get cancer at the age of 33.
I'll write more about how I'm feeling about turning 35 on my actual birthday, for now I just wanted you to know that I haven't forgotten about you!! I'll also post pic's from my party as soon as I get some. We had about 50-60 people at our clubhouse, great food, drinks(lot's of drinks) swimming and KARAOKE!!! That was my favorite part...so much fun to see people let loose!
I am so thankful for wonderful friends and family. I thought I'd get through the day without crying, I should have know that was impossible. I had way to much time on my hands while listening to them sing happy birthday, I started thinking about how I may not have seen this birthday and the tears started flying:) The only good thing about crying was that I had already messed up my make-up singing Karaoke...yes another present from menopause...thank you menopause!
Tuesday, October 21, 2008
Friday, October 17, 2008
My dilemma is this...up until now I think I've been in what I'll call a "cancer bubble"-definition: a closed circle comprised of people who have witnessed/played a major role in your journey. These are the people that have seen you and been with you through your darkest days..your shiniest head...and your many cries of pain.
Leaving the "cancer bubble" is a bit like returning to the workforce after a very long hiatus or entering college with the hopes of leaving high school and everything you were or weren't at the door. How do you re-introduce your self to someone you've known all of your life but haven't seen in 20 years? How do you read about or listen to stories of marriage, children, and careers...when it feels like nothing you did before cancer is relevant? How do you combat that feeling that you're the odd man out, the leader of the pact, the first cancer victim amongst your peers but unfortunately not the last? Peers that you talked with, shared with, and dreamed with.
Another brutal dose of reality for me and for those I encounter I suppose it's a hard look at their own mortality. Kind of sucks for all involved, huh? I'm proud of the way I've handled things. I'm very outspoken and upfront about my illness, I sincerely hope it doesn't make anyone uncomfortable. It's the only way I know how to cope. It's the only way I know how to be me. The me that keeps on ticking no matter what, the me that desperately wants people to be aware of Ovarian Cancer and the sneaky beast that it can be. The me that is proud of how far I've come yet knows how much further I have to go.
Monday, October 13, 2008
I have way more energy than I've had in months, yet at times I still feel so tired... both physically and mentally. It's nerve wracking, as every little twinge, ache or pain is a constant and intrusive reminder of where I've been and the unknown that lies ahead of me. Gone are the carefree days of obsessing about red carpet fashions or who's dating who. Long gone are the days that cancer was some far off remote possibility that only happened to "other" people.
I volunteered last week at the Southern Women's Show with The Ovarian Cancer Alliance booth here in Orlando. The experience was wonderful, yet a brutal reminder of how horrible this disease is and of how many family's it has torn apart, often without any advanced warning. I was happy to meet people with whom I have this common bond, this sisterhood of sorts...however the number of people who have lost a loved one to this dreadful disease left me with mixed reviews. I felt their pain as if it was my own, I felt guilty because I made it through and scared because it's my "new" reality.
Thursday, October 9, 2008
Monday, October 6, 2008
You'd have to live under a rock not to know that October is breast cancer awareness month:) There's just no escaping it. It's out there to make you aware, diligent and mindful about what's happening in your body. It would be wonderful if all cancer's received the same amount of attention and publicity as breast cancer does. I'd love to one day see the stores flooded with teal m&m's or bodywash and to have my house filled with all things teal... Since being diagnosed with Ovarian Cancer teal has become my new BFF. It's a bit like joining a sorority...albeit a sorority that you didn't sign up for, heck in a lot of cases a sorority you didn't even know existed.
I hear a lot of people talk about how unfair it is that Breast Cancer gets all the attention from mom and dad, while survivor's of other cancer's feel like lonely step children. Sometimes Mr. jealousy enters my world also, but then I remind myself that this isn't a competition between the "it" girls and the not so "it" girls. We can't afford to waste our energy trying to out do one another.
I'm not mad at Breast Cancer, if anything I'm encouraged by it. I know that with hard work and diligence Ovarian Cancer will soon be right up there along side it's sister.
The crazy thing about the breast/ovarian cancer war is that in some instances the two are connected. In hereditary cases changes or mutations of the BRCA1 and BRCA2 genes increase the chances that a woman will get one or both cancers. Gene test to identify potential risk are often done on woman who have a family history of breast, ovarian, or colon cancers. A lot of people don't realize this and it's something we should all be aware of. Just another one of those little facts that could play a pivotal role in saving your life.
There's no time like the present, so if you haven't had your mammogram yet...now is the time. If you're not sure when you should start having them, talk to your gyn...be sure to let them know your family history or any past problems you may have had. They can only help you if you're willing to help yourself!
Wednesday, October 1, 2008
Father in heaven, thank You for watching over me and making a way even when there seems to be no way. I trust that You will never leave me nor forsake me. I bless Your name today and always. In Jesus’ Name. Amen.
It was one year ago today that I heard those chilling words, words that I will never forget. You have Ovarian Cancer. A year ago my world was turned upside down, a year ago I sat immobilized and in a complete daze...not sure where this journey would lead me, but today is a new day. I woke up this morning feeling good, I had a great work out at the gym, made my own lunch and did a bit of volunteering for Senator Obama's campaign here in central Fl. My day may seem pretty mundane to many, but any day that I feel good is a blessing...I no longer take anything or anyone for granted.
I've met some amazing people this past year and I've had the most incredible team of people working to help save my life. It's true, I would have never thought in a million years that I would be writing a blog sharing my experience with cancer, but I am and I'm thankful that I'm here to do so.
Thank you to everyone near and far for your prayers and continuous support. Please continue to pray for me and for the family and friends of those who were not as fortunate.
Ovarian Cancer-Silent NO More!!
Tuesday, September 30, 2008
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
Thursday, September 25, 2008
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
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
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.
- abdominal pain
- frequent or urgent urination
- pain during intercourse
- back pain
- feeling full quickly
- nausea or gas
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
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
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
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
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
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
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
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
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
Sunday, August 31, 2008
One of the biggest changes in my life after cancer(we'll call it AC), is that I've become "Aware". I'm more in tune with what's going on around me, be it people, places, or things. Today as I was peaking out of my window (I do that often...I guess you could call me a nosey neighbor) there seemed to be an unusual amount of kids playing outside. Again, this might have been normal activity for them...but as I said earlier I've become a lot more aware. Hearing the laughter and fun made me think back to when I was a kid. When my biggest concern was what I would wear to school the next day or if my BFF(Best Friend Forever)would have a nice long juicy note for me to read during band:)
The carefree sound of children playing also brought me back to a conversation I had earlier with a fellow survivor who just completed chemo and radiation for breast cancer. She's fighting the biggest fight of her life while working and raising three kids on her own. I won't go into intimate details about her journey, but I will say this...it was determined by her and her doctor that she needed to take a little time off of work to re-coup after chemo for health reasons. For those of you that don't know, chemo is used to kill all of the bad cancer cells in your body. Unfortunately the chemo doesn't know the difference between a healthy cell and a bad cell, so it ends up killing all of your cells. The wear and tear on your body is intense. You're being flushed with deadly toxin's weekly, bi-weekly, or monthly depending on your diagnosis. For my friend, a doctor's note wasn't good enough for her employer. They require additional testing so that they can determine if she's eligible for short term disability.
Rounds and rounds of chemo, radiation, scans, blood work...aren't good enough for them. They want more. How much more can she deliver? Isn't a diagnosis of BREAST CANCER enough? You work hard all of your life so that you are prepared for and okay when something like cancer happens to you. Why should you have to deal with the stress of trying to figure out how you're going to make ends meet while fighting for your life? It makes me so angry that people all over the country are fighting the same battle while carrying the weight of the world on their shoulders. STRESS is the one thing that you should avoid when fighting any illness and for many people including my friend, it's unavoidable. Half of the battle against cancer is a positive spirit and outlook, how do we achieve that when BS gets in our way?
Saturday, August 30, 2008
Over time what I've realized is that yes it's scary as all illness' are. We're afraid of the unknown, we're afraid of the treatment's, surgeries, loss of control, employment , friends, family and everything else that comes along being sick. What most don't realize is that taking a pro-active stand with your body and health care can save your life. It will make that big, bad, scary disease...not so bad.
I won't sugar coat things, Cancer is awful!!! Every one's journey is different. Many will undergo surgery, chemotherapy, radiation...sometimes all three. In most cases you lose your hair, appetite, weight, and your zest for living. Because your bodies immune system is greatly compromised during treatment, you are susceptible infections and other illness'. It's not an easy battle and for many it's a battle that they will face for the rest of their lives. There's no magic pill that can stop you from getting sick but there are preventative measures that you can take that will help you in your fight.
I now realize that although I knew about Ovarian Cancer, I was never clear about how it was detected and diagnosed. I've been going to the gyn for half of my adult life and I had no idea how things worked. Since my diagnosis, I've met a number of woman who join me in that club. I can't think of how many times someone asked me if my cancer was detected through a pap smear. A pap smear is used to detect Cervical Cancer. I too was always under the impression that if my pap smear came back okay then I was set to rock and roll until my next exam...silly me.
There is no one test to determine if you have Ovarian Cancer. The symptoms are very vague. How vague you say? Try these on for size...bloating, frequent or urgent urination, pelvic pain, abdominal pain, gas, back aches. See what I mean? These are all symptoms that women feel at any given time of the month.
If you are feeling any of these symptoms persist it's important that you are able to articulate that to your Dr. A trans-vaginal ultrasound is then performed to see if there are any abnormalities. That's how the mass on my right ovary was located. There's a blood test called a CA125 that is given in conjunction with the trans-vaginal ultrasound when Ovarian Cancer is suspected. Surgery is often confirmed after these steps are taken, which is where you get your true diagnosis. In my opinion a trans-vaginal ultrasound should be performed during every gyn exam....unfortunately insurance company's(don't get me started on them) won't pay for it unless it's warranted(whatever that means).
I had no control over getting cancer. But I had control over my body and how to respect it. Keeping up with my check-ups saved my life. We don't have to be victims. Arm yourself with knowledge. We have to educate ourselves, no one's going to do it for us. Dr.'s are often in a rush, but who cares. Know your health history when you go to the Dr., ask them exactly what they're testing for, let them know if you might be at risk for any hereditary illness'. My best advice is go to a Dr. you like and trust. Don't be afraid to go to someone else if you don't feel like you're getting what you need. Last thing, don't be afraid to talk to other people. Share your story and share your story often. Don't forget to listen when other's share theirs.
Friday, August 29, 2008
Let's see, when we last left off I was probably getting ready for my 3rd or 4th treatment. Since then I've completed all eight of my treatments, had a cat scan that came back clear, and followed up with a hysterectomy. Yep, they took all of my girlie parts in July. I'm feeling pretty awesome, thanks to The Davinci Robot. It's a less invasive way to have a hysterectomy, giving you a shorter recover time and less scaring. Dr.'s guide the robot during surgery enabling them to get everything they need to including extensive tissue samples of surrounding lymph nodes.
I didn't have kids prior to my surgery, but I'm okay with that. I'm blessed and grateful to be alive. Don't get me wrong, I've had my moments. I won't pretend that this something that I haven't struggled with. It's super hard when you see mother's and father's with their children living the American dream. I'll always live with a sense of sadness for myself, but mainly a sense of lost for my husband and what I'm not able to give him.
The great thing about my husband and I is that we are both warm and loving people...seriously, people love us:) We had always planned to adopt at some point. We often joke that my husband has wounded bird syndrome, he will take in anyone in need of a hand up. We love people...whether they're related to us, born to us, or just someone who needs a helping hand. So I know that we will have children someday and I'm excited about what's in store for us.
I've launched a new campaign. As most who are reading this know, Ovarian Cancer(often referred to as the silent killer) is the number 1 gynecologic cancer death amongst woman. They say 1 and 55 woman will be affected by this disease. They say around 22, 000 people each year are diagnosed and out of that 22,000 about 15,000 will die from the disease. And cancer, like many other illness' are shortening the lives of many woman. Throughout my journey, I've learned a lot about the disparities in health care when it comes to minorities and their Caucasian counterparts. As an African-American woman I was surprised to see a void in the number of women being treated who looked like me. Only to find out later that yes minorities were diagnosed with Ovarian Cancer, they just weren't living as long. African-American and Hispanic women are not living as long due to lack of health care options, a breakdown in communication and education, and of course a lack of awareness. Because of these startling statistics and because I've been blessed with a second chance at life I've made it my mission to help as many women as can. Even if it means saving one life at a time. We may not be able to avoid illness' such as Cancer, diabetes, and hypertension but we can arm ourselves with enough ammunition to take control of our outcome.
I've recently connected with some wonderful woman who were gracious enough to give me a swift kick into action. Thank you ladies, you know who you are!!!