Thursday, January 29, 2015

Survivor Stories: No Christmas Tree for Christmas - Patti Murillo-Casa

As January,  Cervical Cancer Awareness Month, draws to a close we are pleased to bring you the story of Cervivor Patti Murillo-Casa. Thank you Cervivor for allowing us to share stories from your website this month. 
Dee


No Christmas Tree for Christmas

Ever since I can remember, Thanksgiving, Christmas, and New Year’s has been a special time in my family. It’s filled with traditions, love, being grateful, and always feeling blessed and thankful for everything. We celebrate by being together, giving each other gifts, serving delicious food, and of course always having a beautiful Christmas tree.

In the year 2008, these holidays were very different – I was shocked beyond belief when my doctor gave me a cancer diagnosis. That particular moment is vivid in my mind, but the moments after the words “You have stage IIB cervical cancer” are a blur.  It was mid-November, right before Thanksgiving, Christmas, and New Year’s.

Needless to say, I wasn’t in the spirit for any of the holidays after receiving such a diagnosis. Everything had gone dark. I thought, “Thanksgiving??? What do I have to give thanks for? For having cancer?” Focused only on the words of my doctors, I was forgetting about the rest of the many blessings around me. I was giving up before I even started to fight back. For me, it was the beginning of the end.

I went into a cocoon, asking myself over and over, “What did I do wrong to deserve this?” I didn’t want to see anyone, not even family or friends. That year, there was no giving thanks on Thanksgiving, no beautiful tree or gifts for Christmas, no party or champagne cheers for the New Year. What was the sense of doing all that if I felt uncertain about my life? I was facing my own mortality.

It took a while for me to feel ready to fight back. I was fighting for my life, and I was really scared. I even questioned my own faith, but God gave me the support and strength to endure. It was a difficult journey, but I won the battle – I got a second shot at life.

Now, I don’t question anything. I give thanks every day as if it were Thanksgiving Day. I celebrate each day and see it as a gift given to me like a Christmas present. I live and celebrate every day as if it was New Year’s day. There is so much I want to do, and I don’t take anything for granted. I see life differently now; problems that seemed huge are not so big anymore, and I really don’t sweat the small stuff. Life is good!!

After going through this experience, I want to share my story with other women and let them know that my journey does not have to be theirs. I want to pay it forward.

In 2014, I was fortunate to have been chosen as one of the survivors to attend Cervivor School. This is a life-changing event that trains women in impactful storytelling, teaching the most essential facts about HPV, cervical cancer, and prevention. Cervivor School supports women in becoming cervical cancer advocates and changing the future of female health.

I had an awesome experience at Cervivor School 2014, becoming empowered with knowledge in so many different areas. The support of my survivor sisters is beyond anything I could imagine, and I’m now a SURVIVOR turned ADVOCATE, committed to helping eradicate cervical cancer for good!
I want you to know that you can get through this, and we are here for you. Together, we’ll make a difference.

~ You gain strength, courage and confidence by every experience in which you really
stop to look fear in the face. You are able to say to yourself, “I have lived through this horror. I can take the next thing that comes along.” You must do the thing you
think you cannot do.  ~
Eleanor Roosevelt 


Wishing Everyone a Very Healthy New Year 2015!!
Cervivor Patti Murillo-Casa



Friday, January 23, 2015

Survivor Stories: Top things to know about recovering from cancer- Justina Hurley

This month, Cervical Cancer Awareness month, we are pleased to share the stories of cervical cancer survivors. This post was written by  Justina Hurley and appears with photos on the That Health Site website. Justina is an Irish writer and BioEnergy Therapist based in Southern Ireland. 
Dee


Cancer isn’t all bad..

This is just my take on this and I’ll explain more about all of this below but for a short list:

  1. Less tolerance
  2. More connection to day to day life pleasures
  3. Past interests and even career choice can completely change
  4. Friends and family become very important
  5. Learning to live at peace with a ticking time bomb makes you very zen!


Recovering from cancer isn’t as straight forward as many would think.

For friends and family who help you through, the worst part for them is hearing about it and being there while you undergo treatment and / or surgery. Then, when all of that is over and once you have had that first post operative or post treatment all clear, everything all goes back to normal again…for them.

However for me that’s actually when it all began!!

I’ll explain… I knew I had cancer for a long time before it was diagnosed. I’m a bioenergy therapist and I knew something was very off in my system, I was even sure that that problem was in my cervix but smear after smear showed an all clear result.

I was tested on average every 6 months as I had been exposed to DES in the womb, and despite the bleeding, the pain and the constant symptoms, every smear was clear. I even had an ultrasound which showed an all clear and yet the symptoms were ongoing. Finally on holidays I had a really, really bad pain, this time like a knife ripping through my insides and another bleed.

It was a defining moment as I absolutely knew, despite all tests, that this was cancer. As soon as I got home I was tested again. This time, probably due to whatever the knifelike pains had done in my system, the result showed full blown adenocarcinoma. Strangely enough I was relieved. At last my feelings were being proved right!

The cancer was unfortunately quite progressed to a 1B1, but was still operable and I wasn’t going to need chemotherapy or radiation. I felt so lucky though, as I knew it had been there for quite some time and that it had stayed as confined as it had was nothing short of a miracle. I can only think that all the healing and sound therapy I had been doing for my clients had somehow rubbed off on me. That, and a diet rich in turmeric, ginger and chilli maybe!!

Where I live we are so fortunate to have one of the top surgeons for kind of surgery I needed – a radical hysterectomy. So while everyone else around me was worried and anxious about procedures etc., I wasn’t. I felt really positive and I had a real sense that this could have been so much worse.
The years of training in healing and spiritual practice kicked in too, proving that when the chips were down I found an inner reserve of trust that literally kept me in a state of real calm, grace and optimism.

The added bonus for me though, was that I got a real appreciation for the one thing that I had struggled with down through the years – namely the real experience of physical life!

In healing, in writing and in my childhood I tended always to drift to the wider world of spirit, universal consciousness or whatever term you choose. It is a wonderful connection to have and for me the world has been and always will be a part of a much wider multidimensional reality. But all the time I was aware that on a level I didn’t quite ‘get’ the physical life part. My preference was for what I called the wider world, physical life…meh!..it was fine but narrow….

So maybe subconsciously I chose the lesson of cancer to give me a push in one direction or the other. All outcomes are perfect. I truly believe that, as what is happening is happening only because on some level a part of me chose that experience. And we all die, so that’s not the issue really. But it’s a bit different when you have it brought to you that yes we do all die, but right now the exit door might just be approaching a lot sooner than you thought.

Then just to make sure I was getting the lesson, a slight mix up when waiting for a test led a doctor I didn’t know to misread my file and more or less imply that things were much worse than I thought!! Wow! The emotions even surprised me! I went from fear, to terror, to upset and then kind of grabbed onto my inner practise and felt my way back to peace and acceptance. It wasn’t pleasant but it was the final kick in the proverbial I needed to really get the life bit!

Something gelled in me. I felt a shift where yes the acceptance that ‘all outcomes are perfect’ was still there, but a real 100% desire to live and to fight for life kicked in.

Life became shinier, more immediate and more real. My awareness and connection to the wider world hasn’t changed, but the connection to this life, to this body is much deeper and more thankful and more understanding of why the time here in this amazing body suit is a real privilege and not one to be wasted.

So this gets me back to my five points from above. When the dust settles and the process is supposedly over, well it’s not actually over for you. In some ways it’s just beginning, but in a good way.

If there has been surgery or treatment, when that is over there is a part of you that can come out of survival mode. If you had an experience like me whereby I really felt like I was carried through everything by grace, then the hands that carried begin to coax you back to standing on your own two feet again.

Then the real work begins because you have changed and while everyone else goes back to normal, you stay changed and in that change, there will still be patterns in your old self that still need undoing.

What changed for me:

1. Less tolerance

For all the reasons I’ve said above, there is just no place for nonsense, for insincerity, for anything fake in fact any more.

I always think of an example my spiritual teacher gave where, for example, someone chops off their own finger. You’re concerned for them, you want to help and so you help them have it put it back on, help them to get through all the reasons behind why they did it and so on but as soon as your back is turned they chop off the next finger, and the next and the next.

“Now,” he asked, “how many fingers do you stay for? At what point does compassion stop and enabling or even destructive codependence begin? When should you walk away and what is stopping you.”

Well, before my cancer awakening (as I like to call it) I was really a 5 or 6 finger person. Not so bad that I’d stay for the whole 10, but still using too much of my energy to give where the giving was really just an act of throwing my own energy away. Now I’m gone at the second finger! Once is a cry for help, twice is maybe needing to bed the learning in, but after that there’s a choice that is not mine to make, push or force.

And this applies to me too. Perhaps to me most of all. All the things I used to postpone or fear or just say I’ll get round to it when I have more time are brought into sharp focus when you might not have that time. Time becomes precious and so I’m becoming even more intolerant of any behaviours in myself that hold me back.

In some ways maybe it’s made me less easy to be around as I just see anything that I don’t want to do as a waste of this precious time. It feels like a second shot at life or even a new life and time to get rid of old patterns and habits that I don’t want in my life any more. It’s not easy and is an ongoing learning but I’m working on it!


 2. More connection to day to day life pleasures

Life becomes more vibrant, well at least it has for me. Sitting in the sun, coffee with friends, the birds singing, working with clients, all the little things have become the big things. They have become the real pleasures and while there are still things I want to do and achieve, the feeling in the moment, the really being in the now and experiencing the now is what counts.

As ultimately it’s my body that went through the ordeal, I now have a much greater appreciation for it and for what it can withstand. How often we look in the mirror and criticize and complain and want to be thinner, fatter, prettier and so on. Now I’m loving the “body suit” and accepting it for what it is with all its quirky bits and imperfections.

Even the changes post surgery are a marvel to me. Who knew that one hormone could change so much! Life without ovaries is really different and to witness the changes in my own body is at times challenging, but always intriguing. And I have to honestly admit that I’m nothing short of delighted to be free of years of painful periods and endometriosis, so sorry womb but I don’t miss you at all!

3. Past interests and even career choice can completely change

It’s hard to put this into words but it ties in a bit with less tolerance. The balance between doing what you love and earning a living is a real one, regardless of circumstances. So that is still there but now I just can’t do anything I don’t love, even if that means less income.

So I let go of all the work that I did just for income and now only want to do my bioenergy work and write here for this site and my own creative projects.

Do I worry still about income and all of that? Of course. That’s an old pattern and hard to fully break, but I’m much happier now to roll with what comes and just keep doing what I love and trust that it will work out.

4. Friends and family become very important

I say I was carried though my whole journey by grace and love, but a huge part of that was the amazing support of friends and family. For anyone reading this who has a loved one with a cancer diagnosis, then don’t run away from talking about it and don’t be afraid to have fun. My friends were beyond supportive.

My healing friends sent healing, my medical friends almost came into the surgery with me, and my other friends were just there in every way they could be.We went out, had day trips, ate, drank, laughed. And I am aware that they all have busy lives but they took the time out to be there for me and I will always be grateful for that.

I am aware too that while I didn’t get into fear or worry and I can honestly say that even though I had my moments (see section 5!) I didn’t really have that much fear. However I know my immediate family did and again their friends rallied round and supported them and this helped me, as one thing that did happen, for me anyway, is that I couldn’t get involved in how anyone else was reacting as I knew that to stay on top of things I had to stay 100% away from all the negative associations with cancer.


So I was probably annoyingly positive! But it was how I felt and I do understand that at times I must have seemed unfeeling about the worry my family were experiencing but I just couldn’t take that on board and stay on top of things myself. All my energy had to go on being and feeling positive and on undoing the energy pattern that got me into the cancer situation in the first place.

5. Learning to live at peace with a ticking time bomb makes you very zen!

I’m not superhuman and did have moments of real fear along the way, but thankfully very few. I’ll discuss dealing with fear in another article. But I’m not na├»ve either. Just because I don’t want to allow the energy of cancer to have another second in my system, doesn’t meant that it won’t return. I don’t want it to and I believe it won’t, but it could, I know that too. However you can either worry about that all the time or ignore it completely or you can find a space in between.

I imagine it a bit like being in a room with a bomb in the corner that has been deactivated as far as everyone knows but which can’t be moved. Now you can spend every day hovering around that bomb and continually checking to ensure it won’t blow or you can just see it as an ornament in the room, surround it with some nice soft cushions and maybe a potted plant and voila, you have an interesting room feature that you can live with and come to appreciate for the little reminder it continually sends that life is a gift to be appreciated. That’s my zen bit and my space in between!
Living in the sense that ‘right now I’m fine'; that’s where I have to stay. There are of course continual medical checks and each one that is OK adds another nice cushion to pad that bomb and decorate the feature in my room.

I’m grateful for my bomb and the little message it sends. I’m getting used to its continual presence but I don’t want it to explode ever again!!

Thursday, January 15, 2015

Survivor Stories: I Want To Talk - Maria's Story

This month, Cervical Cancer Awareness month, we are pleased to share the stories of cervical cancer survivors. As Cervivor School 2015 begins today in Austin,  Texas, we share Maria's Story. 

Dee

I Want To Talk

Sometimes I wonder why people are so quick to let the world know their bra color to support breast cancer, change their profile picture to a cartoon character to raise awareness about child abuse, or even take an ice bucket challenge in support of ALS without knowing what ALS is, yet few talk about the issues itself.

So you posted your bra color on social media; did you talk to someone about breast cancer prevention or monthly self-exams? Probably not.

Your profile photo is a cartoon character; did you talk to your friends about child abuse, or volunteer your time to a charity that helps children? I dare say most of us didn’t.
The famous ice bucket challenge… How much money did you donate? Since taking the ice bucket was the alternative to donating money I’m going say that very few people donated any money for research.

Despite that, it seems so much easier for people to do these things than talk about Cervical Cancer. It makes me realize that despite how progressive and evolved we think we are (a society that fights for a woman’s right to choose, marriage equality, and other things we wouldn’t have dared to think about in past years), there is still stigma surrounding HPV and Cervical Cancer.


Well, I want to talk. I want to talk about HPV and Cervical Cancer. I want to do more than just raise awareness. After all, you already know Cervical Cancer exists; I want to bring the topic to the open. I want to share what I know, what I lived, so you and your family and friends don’t have to go through it.

Most people don’t think they will be affected by HPV and/or Cervical Cancer until they hear the dreaded words “You have cancer”, or see a friend fighting for her life.


In the last few weeks I’ve heard people tell me “My daughter won’t get HPV because she is a good girl, she’s not going to have pre-marital sex” or “This is the first I’ve heard of HPV” or “I haven’t had a pap smear since I had my last baby who is 7 years old now.” To me, that is scary as hell, and that’s why I feel the need to talk about it.

HPV and Cervical Cancer can affect anyone, and I mean anyone. I’ve known women who’ve had only one sexual partner get HPV, and prostitutes that tested negative for it. If you think this is a disease of the promiscuous, just as AIDS was thought of in the 1980s, think again.
If you have a vagina, you can be affected. Guys, HPV touches men too. Ever heard of penile, anal, or oropharyngeal cancers?

At least 79 million people are estimated to be infected with HPV; most of them don’t even know it. It is a scary number, and yes, it is a scary virus that can have devastating consequences. However, there are things that you can do to protect yourself and your children from the risks of HPV and Cervical Cancer.

January is Cervical Cancer Awareness Month; which is why I’m hosting a screening of the film “Someone You Love: The HPV Epidemic” in Milwaukee, Wisconsin. 
Come see the movie. Invite your significant others, friends, daughters, sisters, brothers; make it a group outing! Imagine if 100 people came to the screening… that would be 100 more informed people in the area; 100 individuals sharing with their families and friends what they saw and heard. It would translate into more people taking control of their health.

Come, be informed, be empowered. We can break the stigma. We can take action.
We can eradicate Cervical Cancer!


Maria Franklin is a 15-year cervical cancer survivor who is excited to be attending Cervivor School.


This post originally appeared on the Cervivor blog. Re-posted with permission.

Wednesday, January 14, 2015

Gynecologic Cancer Risk Factors - Jan 14, 2015 Chat

What an great way to start off the New Year. We had 52 participants and over 1.4 M impressions as we chatted about the risk factors for gynecologic cancers.

“A risk factor is anything that increases a person’s chance of developing cancer.” @cancerdotnet

Some of the topics we discussed included the genetic risks of gynecologic cancers (BRCA, Lynch syndrome, Cowden syndrome), DES (diethylstibestrol) exposure, as well as HPV vaccines and cervical cancer.

You may find a transcript of the chat here.

The questions that guided our conversation were:
T1A: Are you aware of the risk factors for gyn cancers? When did you learn them? How have they influenced your health decisions?

T1B: Providers - Have your patients asked you about risk factors before or after diagnosis?

T2: Viral infections caused by HPV virus raise risk for cervical, vaginal & vulvar cancers. What do women & parents need to know?

T3: What is DES (Diethystibestrol)? How are women exposed to the hormone? What are the risks?

T4: Genetics are thought to account for as much as 25% of some GYN cancers. BRCA has received media attn. What are other genetic risks?

T5: Have you tried to reduce your risk for cancer, recurrence or other cancers? What can women do w/ the info about risk factors?


Be sure to check the resources below for links to information on this month's topic. 

We look forward to having you join us for next month's chat Wednesday, February 11, 2015 at 9pm EST as we discuss Care Beyond Medical Care with @Reimagine_ME .  



Dee Sparacio
Co-moderator



Resources:

Risks:
Risk factors for ovarian cancer  from @cancerdotnet http://www.cancer.net/cancer-types/ovarian-cancer/risk-factors-and-prevention
Risk of #ovariancancer. http://t.co/L1y67jHEnk

Risk factors for cervical cancer from @cancerdotnet
10 Cervical #Cancer Risks You May Not Know About: http://t.co/b2wJQHOcE5

Risk factors for uterine cancers from @cancerdotnet
Risk factors for endometrial cancer from @MayoClinic
Top 10 risk factors for Endometrial cancer: http://t.co/WVWKXMb1I0

Risk factors for fallopian tube cancer @cancerdotnet

Risks for vaginal cancer from @cancerdotnet

Risk for vulvar cancer from @MayoClinic

Risks for GTD @GYNcancer

Risks for #primaryperitoneal cancer @GYNcancer
http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/primary-peritoneal/risk-factors/

Genetics of Breast & Ovarian via @LguzzardiM http://t.co/peN9EffywH

Prevention:
Cervical Cancer Prevention http://t.co/aC601IE3hK 

DES:
DES Info via @theNCI: http://t.co/mbCZ8znENc
DES Info via @thathealthsite  http://t.co/IaSDmNrjoZ
DES Info via @AmericanCancer: http://t.co/c4v7Qmkgxy
DES sons http://t.co/ExFEnLxVBB

Lynch syndrome:
Lynch syndrome information via @cancerdotnet http://t.co/cVwW8nh9bY

Cowden syndrome:
Cowden syndrome information via @cancerdotnet http://t.co/BiAPXKaMe8

HPV:
HPV Myths & Misconceptions with Fact Sheet http://www.ashasexualhealth.org/stdsstis/hpv/hpv-myths-facts/ [updated link 5/2017]
CDC HPV and cancer http://t.co/03R35ZJeP6
Five Things About HPV Every Woman Should Know http://t.co/ouiehRp69T
What #parents should know about the #HPV vaccine: http://t.co/BCKBHa3ekQ
American Sexual Health Association:
http://www.ashasexualhealth.org/stdsstis/hpv/hpv-cervical-cancer/
http://www.ashasexualhealth.org/sexual-health/ask-the-experts/hpv/
10 Thinks to Know About HPV Fact Sheet http://www.ashapublications.org/ten-things-to-know-about-hpv/

Misc:
High Risk / Previvor resources: @facingourrisk @bebrightpink @sharsheret

Unexpected Gynecologic Malignancy Diagnosed After Hysterectomy Performed for Benign Indications http://t.co/XnToRcdpQS
   
Increased #CervicalCancer Risk Associated With Screening at Longer Intervals. http://t.co/aWG1il5Grd

The Pill and Cancer: What You Should Know via @MDAndersonNews http://t.co/3xJl2DWXVD

Tool - family cancer history (from Myriad) https://t.co/7uOr9oPbTc; 
Tool - family health history (from Surgeon General) https://t.co/czksLcq3dZ

Rick Boulay TEDX talk on cancer bias. https://t.co/BZLYWe8NA3

Friday, January 9, 2015

January Chat Topic Questions : Gynecologic Cancer Risk Factors

Happy New Year!

We begin this year's chats on January 14, 2015 at 9 pm EST. We will be discussing the risk factors for gynecologic cancers. "risk factor is anything that increases a person’s chance of developing cancer." - @cancerdotnet.  


Following the questions you will find links to information from Cancer.Net, the Mayo Clinic and the Foundation for Women's Cancer on the risk factors of each gynecologic cancer.


Topic Questions:
T1A: Are you aware of the risk factors for gyn cancers? When did you learn them? How have they influenced your health decisions?
T1B: Providers - Have your patients asked you about risk factors before or after diagnosis?

T2: Viral infections caused by HPV virus raise risk for cervical, vaginal & vulvar cancers. What do women & parents need to know?

T3: What is DES (Diethystibestrol)? How are women exposed to the hormone? What are the risks?

T4: Genetics are thought to account for as much as 25% of GYN cancers. BRCA has received media attn. What are other genetic risks?

T5: Have you tried to reduce your risk for cancer, recurrence or other cancers? What can women do w/ the info about risk factors?



Links for Gyn Cancer Risks:

Risk factors for ovarian cancer  from @cancerdotnet http://www.cancer.net/cancer-types/ovarian-cancer/risk-factors-and-prevention

Risk factors for cervical cancer from @cancerdotnet

Risk factors for uterine cancers from @cancerdotnet

Risk factors for endometrial cancer from @MayoClinic

Risk factors for fallopian tube cancer @cancerdotnet

Risks for vaginal cancer from @cancerdotnet

Risk for vulvar cancer from @MayoClinic

Risks for GTD @GYNcancer

Risks for #primaryperitoneal cancer @GYNcancer

We look forward to having you join us. 

Dee
Co-moderator

Thursday, January 8, 2015

Survivor Stories: How A Diagnosis of Cervical Cancer Changed My Life - Tamika

This month, Cervical Cancer Awareness month, we are pleased to share the stories of cervical cancer survivors. We begin with the story of  Tamika Felder, survivor and founder of Tamika and Friends and Cervivor. More information about cervical cancer and HPV can be found on the organization's websites. - Dee

How A Diagnosis of Cervical Cancer Changed My Life 

When I was diagnosed with cervical cancer, I never planned on becoming a patient advocate. In fact, it was the furthest thing from my mind.

I was 25, single, childless and scared. This was 2001 and no one was really talking about HPV. I had never even heard of it and I pride myself with being “in the know”. Hell, I was even working on a national award winning health show and it wasn’t a topic that we discussed.

As I healed from my surgery and prepared for radiation and chemo I still never thought about sharing my story. It’s ironic, because as a television producer that’s what I am – a glorified story teller. But this wasn’t a story that I wanted to share.

I was ashamed and just wanted to put it all behind me.

So I did. Or at least I thought I did. Slowly, I began pouring myself back into my work and started the grind of networking. I went back to being that social butterfly that my friends and family had always loved.

But something was different. I was different. My life had forever been changed. As much as I tried to put the pieces of my cancer riddled life back together, it just didn’t happen. The pieces no longer matched up perfectly. I didn’t fit into my own world. My energy level wasn’t the same and I thought about my experience constantly. I wondered why no one was talking about cervical cancer.

It took me three years to accept that I had cancer and it had rocked my perfectly planned world. I was one of those people who had everything planned out and cancer was not in the plans – when is it ever? But it happened and thankfully I survived — so I had to live — really live.

And so I did. Part of living my best life after cancer was doing something for those that would come after me. Like helping them to avoid the isolation that I felt as a woman with cervical cancer.
The more involved I became in the cancer community, the more the pieces of my life began to fit back together – but some of them took a new form.

When I look at the cervical cancer community, I see only a handful of women sharing their stories. I always wonder why more women aren’t speaking up. Is it because of the stigma of HPV? A lack of time? Or do they think that their voice doesn’t matter?


Whatever the reason; we need your voices. 



Tell me: What’s holding you back from sharing your story? We need patient advocates to help combat this disease. We can’t leave it to the clinicians and researchers and Congress. We must have a seat at the table. We complete the puzzle to eradicating this disease. We are the messengers. Will you join me?

I won’t stop until we put an end to this cancer – because together, I know that we can.

Tamika

This post originally appeared on the Cervivor blog. Re-posted with permission.