Chicago IL – Wow! That’s my comment.
I had such a wonderful time attending my first ever NCCC conference this past weekend in Chicago – it was very emotional – tears – joy – laughter – new friendships – good food – lots of interesting speakers – everyone sharing stories – ideas – with one common factor : HPV and cervical cancer.
The event was overwhelming. So many people gathered in one location with one goal – to promote cervical cancer and HPV awareness, prevention and education.
My first day in Chicago began with checking into the hotel - meeting Rachel – finding my room – changing my clothes and heading over to be interviewed. Upon my entering the filming room – I met the film crew – along with a very nice fellow Canadian by the name of Cynthia who works with Zayas Henrick Mediaworks – who have put together several video pieces for NCCC.
Then I attended a meeting for NCCC chapter leaders and attendees who were interested in starting their own chapter.
After – was a quick break and then the cocktail event where singer songwriter and cervical cancer survivor Christine Baze performed.
The next morning it was rise and shine – as a full day awaited me.
Shobha Krishnam, MD and author of the book “The HPV Vaccine Controversy: Sex, Cancer, God and Politics” was a fantastic speaker and explained that there are over 100 types of HPV; with 15 of these types that are cancer causing. She went on to explain that 99% of cervical cancers are caused by HPV.
The causes are variable; can be biological, weakened immune system, stress, poor diet, erratic sleep patterns, excessive alcohol, cigarette smoking, long-term birth control (the pill) – and it is important to stress that one can get HPV from a monogamous relationship.
She stresses that cervical cancer is the second most common cancer detected among women and that prevention is better than detection. How can you prevent you ask – vaccination at an early age before being exposed to the virus. There are two vaccines available now in the USA: Gardasil produced by Merck and the newly approved Cevarix by GSK.
Gardasil as we know it protects against 4 types of HPV: 6-11-16-18 while Cevarix protects against 16 and 18 types of HPV.
In both – it is a series of 3 injections – suggested age group: between ages 11-12 and 9-26. Why 11-12 age group? Because the antibody levels are high – and no contact has yet been made with the HPV virus. The vaccines work as a shield.
The side effects that have been reported are: Pain, redness and swelling at the point of administration. While the adverse side effects are more commonly recognized as fainting, blood clots, and progressive muscular weakness.
Dr. Shobha Krishnam is also promoting HPV and cervical cancer awareness in 10 villages in India.
The conference continued with a presentation by Dr. Juan C. Felix, who also mentioned that there are 100 types of HPV, however he stated that there are between 17-20 types that cause cervical cancer; and explained that with the sexual route, even using a condom can only reduce the risk, but cannot fully protect against HPV. And the non-sexual route, mother to newborn causes a vertical transmission of HPV as does undergarments, surgical gloves, and biopsy forceps.
One in 200 babies born will receive an HPV – types 6 and 11.
In the USA; studies show that 30% of girls entering high school have already had vaginal sex – this according to the 2003 US Youth Risk Behavior Survey; and by grade 12, 60% of girls have had at least one sexual encounter.
As Dr. Felix mentions, we need responsible education. Someone asked the question about where does HPV come from… he explained that it is known to have been around back in the days of the Egyptians – as he had personally located HPV in a mummy at Cornell University.
Dr. Laura Dean of Stillwater, MN spoke of HPV Typing and said that 80% of both men and women will get HPV in their lifetime. We all carry HPV, however some people have stronger immune systems and can fight the HPV naturally without every having any symptoms – others have weakened or lower immune systems and cancer develops.
ThinPrep according to Dr. Dean is much more effective than the conventional PAP smear testing. Over 90% of all gynecologists in the USA use the ThinPrep Pap test for their patients now as it is more effective at detecting precancerous cervical cells.
Dr. Dean spoke in depth about Genotyping and went on to say that the HPV vaccine is a positive advancement in preventing cervical cancer. Dr. Dean can be reached by email at: ldean@lakeview.org
“Sex after Cancer” was the presentation by Dr. Hilda Hutcherson – she spoke of a healthy sexuality; the effect of cancer on female sexuality, emotions and treatments.
She was such an interesting speaker – even had us laughing at her slideshow presentation at times. She also spoke about different products available to better help the enjoyment of sex after having cervical cancer and mentioned an online store where items could be purchased.
She spoke about the desire factor, sexual self-esteem, scheduling intimate time with your partner – and in her words “Just do it.” She also said that one must most likely change the sexual script after having cervical cancer as our bodies change dramatically; she explains, decrease emphasis on intercourse, be creative, be adventurous, be bold, use your imagination, and reclaim your sexual birthright.
Laura Mosiello is from cancercare.org – she spoke about what CancerCare is all about – cancer pain and physical, practical and emotional implications as well as ways to affect change for a better quality of life.
CancerCare services assisted more than 100,000 people in the 2007-2008 year. Some of the emotional implications that Cancer Pain and Cervical Cancer bring are the following: shame, guilt, body image and changes in self perception, sexual changes and dysfunction, intimacy, fear of recurrence and the fear of dying.
Laura spoke of the “New Normal” – Re-interpret, re-examine, re-define, re-new, identify new self, accept new self and embrace new self; and accepting of the “New Normal” which identifies losses of old self, mourn the losses consciously, communicate your needs, instruct loved ones how best to help, integrate familiar aspects of old self, engage inherent challenges and re-invest in life.
For more information on CancerCare please visit their website at : www.cancercare.org
One of the NCCC quilts was circulated around during the conference for each of us to sign. These quilts travel the US and are on display at different events; hospitals, clinics, etc.
My entry onto the quilt square was the following:
Cervical Cancer
Forever altered
Forever a fighter
Why me?
Thank you NCCC
For making a difference in my life,
And the life of countless others.
To see some of these quilts and to get more information on the display of them – please visit www.nccc-online.org
The day went on with speaker David Romanelli – author of “Yeah Dave’s guide to Living the moment, getting to ecstasy through wine, chocolate and your ipod playlist.”
What a motivation – he is great. I had previously seen an interview he did with WGN morning news team in Chicago a few months ago – while I was recuperating from my radiation therapy. David was previously Shaquille O’Neal’s publicist.
He showed us film clips we could all relate to – he gave us a brief look at his life with his father – and also had us on our feet to do a couple of simple exercises and then broke out the chocolate – nothing but Chicago’s best: Vosges Chocolate available at www.vosgeschocolate.com. On Friday we tried the Soul Truffle and the Funk n Disco truffle and on Saturday during yoga, we tried the Rooster Truffle and the Naga Truffle. YUM! That’s all I have to say!!!
David spoke of the “Now Moment” – and wants each of us to incorporate three moments each day – and to check them off our checklist daily. They are: one funny moment, one beautiful moment and one delicious moment.
He also made these three suggestions: look people in the eye, avoid the cell phone when meeting someone, and to take interest in the other person.
Life is just a series of moments, if you miss the moment you miss your life – this is life according to David.
After this great day – we had free time in the evening to go visit the windy city or just chill with our new friends. I was asked to go out with a couple of groups; however I elected to hang out with Cynthia from ZHM.
We went walking in the brisk evening air in downtown along Chicago’s Magnificent Mile – amongst a few misty raindrops – we ducked into a few stores, visited MAC makeup boutiques, Macy’s, Bloomingdales, Filenes Basement, NIKE, and many others – ending our evening at the Cheesecake Factory for a wonderful meal – then we headed back to the hotel – but we also ducked into a Walgreen’s along the way as I wanted to take a drink back to the hotel – and not have to pay the $6 for a small bottle of Fiji water back there.
We called it a night once back to the hotel –I enjoyed a good night’s sleep – and was up bright and early to give Rachel and Shaundra a hand at setting up the room and displays for the day.
We opened the morning with the great debate – should boys be vaccinated as well as girls against HPV. The debaters were Tom Cox, and Juan Felix. The answer at the end of the debate was yes – and Dr. Felix even said that all his children, 4 girls and 1 son have been vaccinated.
They also mentioned that to date there have been an estimated 23 million doses administered, and the FDA and CDC continue to find that Gardasil is a safe and effective vaccine. In Australia, both boys and girls have been receiving the vaccine for the past 3 years now.
Dr. Felix said that vaccinating both boys and girls will reduce the stigma about HPV and cervical cancer.
Tamika Felder – NCCC member, shared her personal story with the crowd. She was diagnosed in May of 2001 with advanced cervical cancer. She emphasised the importance of sharing your personal story with others. Also recollected the slides we had seen from the previous day about certain types of HPV infections and warned all of us to “stay away from tainted ding-a-lings,” this make us all chuckle.
We then had a Q&A period with Tom Cox, MD. Juan Felix, MD and Dijljeet K. Singh, MD – and this was followed by Jacqueline Whitmore who spoke of advocacy, awareness and social networking. She is also a cervical cancer survivor and shared her story with us.
My conference to an end after the hilarious and yet touching life story of Julia Sweeney, of Saturday Night Live Alumna and also a 1995 cervical cancer survivor. She is an amazing person, and was also celebrating her 50th birthday amongst us – and was presented with a birthday cake.
I had to leave as my flight was at 4 – have to be at airport 2 hours prior to take off with the TSA clearance and we were a few miles from the airport – the Chicago marathon was planned for Sunday and the traffic was busier than ever. I missed the closing remarks and I also missed receiving my certificate of participation – but I did take in lots of information, made new friends, brought back ideas, and I can’t wait for the next conference!
Thank you NCCC for a wonderful time – thank you to each and every one who attended and also thanks to those who spoke at the convention – you make life easier.
If I can help just one person – my goal has been obtained!
Karen Eryou
NCCC Chapter Leader
Facebook: http://tinyurl.com/qcnccc
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