Thursday, August 29, 2013

Cancer: My Unwelcome Traveling Companion (or: Who is @btrfly12?)

I am pleased to share this post written by Christina Lizaso my fellow moderator of the #gyncsm chat. 

Thanks so much to Dee for providing me a space here to tell my story. She is such a wonderful, influential patient advocate. I am working with her to build #gyncsm, an online community for those impacted by gynecologic cancers (cervical, ovarian, uterine, primary peritoneal, endometrial, tubal, GTD, vaginal, vulvar). Here's why I'm passionate:

Cancer has been a theme in my life, but one that I chose to ignore and let lie in the background. So here’s my story of how cancer has shaped my life to this point.

When I was in the first grade (circa 1983), I lost my maternal grandfather to pancreatic cancer. My “Papa” was one of the great men and heroes in my life up to that point. A coach and trainer of young men, he was also a journey-man philosopher. Pancreatic cancer being a “silent cancer” typically found in its advanced stages, there wasn’t much time to adjust to him being sick, weak, and gone. My dad would sneak me into his hospital room though a construction entrance because Papa considered me “his best medicine”, despite the age restrictions for visitors. After the funeral, I remember feeling a certain peace and coloring a picture of him as an angel going up from the graveyard to heaven. My grandmother lost a big piece of herself that day and remained tight in her shell in a house on a hill in the country. A good reminder to me to fight my own tendencies to remain closed off and hideout when the storms of life come.

Early pre-teen years brought the loss of my paternal grandmother. We aren’t actually sure if this one was cancer. She lived with us for a while during her illness and those were great bonding days. Both the good times (watching All My Children together that summer) and the inevitable bickering of pre-teen vs. another female in the house brought us closer. I’m told by my mom that the description we were given was that there was a growth wrapped around the artery to the lung cutting off circulation and limiting the oxygen in her blood. I remember being called to the hospital late in the night and receiving the news of her death. My mom, dad and I just stood in a big circle hug and cried for a long, lingering moment. Since she died within 18 hours of the above description, we did not seek further details. Her actual cause of death was a heart attack. The doctor actually told mom and dad: "The operation was a success but the patient died." That was quite an emotional night for all of us.

Later on, my great-grandfather passed away from leukemia. Now, he was in his 90s and his rickety old house was falling down around him. He always said not to worry because the house would outlast him, and he was right. He was a man of quiet confidence, as many farmers are, and I admired him greatly.

My mom was diagnosed with breast cancer in 1998 during my senior year of college. It seems ludicrous to me now that I don’t know the stage and type other than it wasn’t a lump, it was in the ducts. Looking back I know that I wasn’t there for her and my dad with the support they needed when faced with cancer. My mom was his everything. An only child, he had no siblings to lean on. My college was just across town, so I was close-by but I was dealing with my own process of facing this as a daughter. I did get her a beautiful ceramic angel with painted light pink skirt because that seemed more lasting than flowers or food.  My mom tackled cancer the same way she approaches everything, with research, an organized notebook and a plan. Having lost her dad to cancer, her attitude was GET THIS CANCER OUT OF ME. Mastectomy and no reconstruction. She was fortunate that it had not spread to the lymph nodes (so stage 1 or 2?) and she did not have to go through chemo. A few months after the surgery, it was Komen Race for the Cure time and we were there. It was powerful and moving being in a sea of thousands who had been through something similar. When in graduate school, I did the Race for the Cure in that city with a classmate who had been diagnosed and also flew back home to be on my mom’s team. It felt important to support her in that way.

Next came my maternal aunt. A different and more aggressive type of breast cancer than my mom’s. My aunt is a music teacher and organist with a passion for those may be overlooked in life. I had just started working at a hospital and I put my aunt in touch with the fabulous woman who ran the cancer store and I got her some lovely, soft turbans. Chemo was grueling but she pushed through it. Could I have done anything for her son, my cousin, to support him during that time? I don’t think I knew how. Later she had genetic testing and it didn’t indicate that others of us in the family should be tested. Said her cancer was most likely from some of the medications her mom had been taking while pregnant with her. She and my mom do Relay for Life together each year and gain strengthen from that community.  She’s had had two recurrences. The first was in the non-affected breast from the first round and was the same type as my mom’s. The most recent was a mix of cell types found and with the chemo she got an infection in her fingernails so bad there was at one point a chance she’d loose her fingertips. Cancer threatening the fingertips of an organist - how foul. Months later she got an infection behind her expander placed for reconstruction and had emergency surgery. She remains strong.

I was living on the third floor of an old house during grad school and that is where I was when I got the call that stopped my world. In what must have been one of the hardest conversations of his life, my dad told his “daddy’s girl” that he had leukemia, the same strain as his grandfather, CLL. The early on-set was later attributed to his chemical exposure in Viet Nam. I asked him if I should come home and he said no, to stay focused on school (a high priority of his for me his whole life) and wait for the holiday break. Grad school is stressful enough but this was just overwhelming. Again, it seems ludicrous now that I don’t know the details of his treatment regimen but my denial of cancer was that powerful. I wondered if he would make it long enough to walk me down the aisle and have a daddy/daughter dance at my wedding. And a couple years later in 2001, he did and it was the sweetest thing.

Dad joined all the on-line discussion boards he could and kept in touch with many others in the CLL community. Patients have to band together, be their own advocates, and have others pick up for them when they can’t advocate for themselves. I had been working in a hospital about 8 months when he was due for a major surgery. [Looking back – why was he fighting cancer at a rural hospital?] Armed with “knowledge from the inside”, I’m sure the nurses hated me. When things weren’t going right, like the roll-away bed my mom had been promised for the night before his surgery that we were being told wasn’t available now, I knew the magic words: “Ok, then I will just reach out to the Admin On Call”. A rollaway bed magically appeared. Victory - a proud daughter who could use some of her knowledge to do something, ANYthing to help. Again, looking back I don’t think I was there for my mom like she needed. After a long surgery, in which well meaning people were trying to distract me with small talk despite my need for reflective time, we got the devastating news, the cancer was too far along and it was time to talk hospice and the dreaded “quality of life”. There in the hallway I told my mom I was sorry that I wasn’t the kind of daughter that had children early in life so dad could be a grandfather. He would have been an amazing one. She told me to never feel bad about the kind of daughter and woman I am, but this still pains me.

I made the long drive to see him every weekend. I made him a CD of music I thought he would like, but it was about a month too late. He wasn’t aware enough of things by then. Did he wait to be alone with my mom for the final moment? I was in a work meeting about some issue that was being blown out of proportion due to politics. When I got back my boss said my husband had been trying to reach me. And I knew. I guess my mom couldn’t bear it and so called him for him to tell me. It is still hard talking to her sometimes because then I have to think about dad too.

The next year is a blur and the only way to describe the loss of a parent that I have found is that you feel exactly how it feels when you are physically lost. My daily commute was a daily chance to cry. I have a strong interest in end of life, palliative care and hospice topics.  I have a piece brewing in my head about the details of my dad’s last days.

In 2011, my maternal uncle was diagnosed with prostate cancer. That is a slow growing cancer and immediate surgery is not always the recommended course of action. My mom and her sister agonized over the news. The last thing in the world they wanted was for their brother to join them in the “I had cancer club” and they also wanted the cancer out of him. When surgery was scheduled, they put their lives on hold to be there at every step for their big brother.

Throughout my life, whenever the topic of cancer would come up, I would pretty much figure that cancer would be coming for me eventually. So I guess you could stay cancer has been an unwelcome “along for the ride” companion in my life. I pretty much ignored this unwanted passenger it until I started working for a cancer nonprofit. In the interview, they asked about my cancer connection and I talked about my mom and aunt being breast cancer survivors. It didn’t even enter my mind to talk about losing my dad. I had been on the job about a month before I realized that. That is how walled off I keep that part of my life. Getting into the job, I dove into reading all the educational materials provided by the organization. As I was reading, I realized that I was reading everything from the perspective of someone who very likely would be needing all of this information as a patient one day. A moment of clarity. A look into my future.

I’ve known that I wanted to work in nonprofit management since seventh grade when it became clear that a calling to serve for me meant outreach and behind the scenes mission-focused work. Having such clarity at such a young age, what didn’t become clear was where within the nonprofit world I should serve - hence heading right off to grad school after undergrad. I always figured something in social services and ignored healthcare (skipping those sections in my graduate school reading – ha!). Yet, here I am. I worked in a hospital setting for six and a half years and now work for an education and awareness cancer organization. I have found a passion for healthcare and the people in it. I just didn’t want to face up to it and my intimate connection to it early on. So now, I have a daily relationship with cancer instead of pretending it isn’t right there along beside me, in waiting.

Christina Lizaso, could be described by the labels associated with those touched by cancer: co-vivor, previvor, fighter, etc. but by her own description, she is a mom to two sweeties, a wife, and a community engagement professional whose life has been touched - and given purpose - by cancer. Follow her on twitter: @btrfly12

Don't forget to join us on September 11,2013 at 9pm EST for the #gyncsm chat. 

Every Day is a Blessing!

Monday, August 26, 2013

Now Let’s Chat – A Guide to Twitter and Tweetchat – Part II

Second in a two part series. A Guide to Twitter and Tweetchat Part I  was posted August 22, 2013. Updated 8/29/13.

Hopefully you have spent some time on Twitter and are feeling a bit more comfortable sending, reTweeting and favoriting Tweets. Now let’s get ready to take part in a chat.

What is a Tweetchat?
A Tweetchat is a virtual gathering of people discussing a particular subject. Using a hashtag helps identify the tweets that belong to the discussion. We will use #gyncsm in each chat. The conversation happens in real time and can take place at a fast pace. As with any tweet the character limit is 140 characters.

The first time I joined the #BCSM (breast cancer social media) chat, I searched for #bscm on twitter and followed along. I wrote some tweets but I forgot to use the hashtag twice and had to type in the tweets again with #bcsm . It was a bit of a challenge remembering and following along with the questions and comments.

So I researched Tweetchats and found that there were sites that were set up to make it easier to follow along and join in during a chat. The sites automatically add the hashtag to each tweet you write. I use Tweetchat (

All you  have to do is go to the site, sign in with your Twitter account  and enter #gyncsm in the “Hashtag to follow” box. When the page opens you will see a box at the top of the page where you enter your tweet. Below that you will see all the tweets in the chat room. You can set the rate at which the chat window refreshes, the character size on the page and reTweet and reply all from one page.  

Others use Hootesuite ( ) or Tweetdeck. ( Feel free to check them out. I recommend that if you use those other sites you don’t wait till the night of the chat to sign up for the site otherwise you might miss some of the chat.

So what happens on chat night?
The #gyncsm will take place on the second Wednesday of the month at 9pm EST. Our first chat will occur on September 11, 2013.

A few minutes before the 9pm EST start sign in to Tweetchat or the site you prefer. You will see that some of us have already tweeted using the hashtag to remind our followers to join us.

Our #gyncsm Chat Format
Introductions  (9:00-9:10 pm EST)
All moderators will introduce themselves. We will then ask those who feel comfortable doing so to introduce themselves. Don’t worry if you feel like just “eavesdropping” on the conversation that is ok. You can always tweet us (@gyncsm) or e-mail us ( with questions/comments after the chat is over.

Questions/ Discussion (9:11- 9:49pm EST)
Each chat will have a specific discussion topic.  The moderators will be prepared to share links that relate to our night’s topic. The discussion will revolve around 3 questions or comments regarding the night’s topic.  As we post each topic /question everyone is invited to comment. We ask that you be sure to use T1,T2 &  T3 in your reply so that we know which Topic you are responding to. 

In the future we may have special guests (authors, researchers or social workers) join us for a chat so the format may be modified for those occasions. We have put together a list of topics for discussion but feel free to let us know what topics you would like to talk about by sending a tweet (@gyncsm) or 
e-mail us (

We will have physicians and other medical professionals join us as moderators during the chats.  Please  refrain from asking them questions about your own personal health issues.  Rather jot those questions down and call or speak to your doctor at your next visit. 

Summary /Closing Remarks (9:50- 10:00pm)
During this time we will review the discussion and ask you to share what you learned by using "TIL"- Today I learned in the tweet. We will also remind you of the date / time and topic of our next chat. 

Chat Tips
Here are some things to keep in mind if you are new to chats:

·      As with all tweets, you are only allowed 140 characters per tweet.
·      I realize that the pace may be quick at times with participants commenting but please don’t be discouraged. You can scroll back in the conversation to catch up.  We hope to make a transcript of the chat available.
·      Please try to stay on topic. Side conversations are distracting and will make a crowded discussion more difficult to follow.
·      Try to keep retweets to a minimum so that the discussion can flow smoothly. 
·      The chat is not the place to promote your project / book / event/ fundraiser. We know you are all doing wonderful things please feel free to share with all after the chat is completed.
·      Be mindful that although we may all be dealing with a gynecologic cancer the experiences we have may not be  the same.  Please do not criticize another’s treatment decision.

We hope you will let us know what we can do to make this a supportive, welcoming and informative chat.  
A special thank you to the ladies of #bcsm for being a model of  how a successful chat is run.

Every Day is a Blessing!

Friday, August 23, 2013

Sept 10th- Teal Tea to Kickoff National Ovarian Cancer Awareness Month

All women diagnosed with ovarian cancer are invited to the 
Teal Tea Kickoff for National Ovarian Cancer Awareness Month

Tuesday September 10, 2013 
2:00- 4:00 pm 
Chauncey Conference Center  
660 Rosedale Road , Princeton NJ

There is no cost associated with this event. 
 This Tea Party is a sponsored by One Force To Make a Difference ( a collaborative of Ovarian Cancer organizations in the state of NJ)  and Turn the Towns Teal and is organized with the NJ Department of Health and Senior Services.
Please RSVP online at ( click on link to event  in right hand column) in order to be admitted and wear teal!

See you there.

Every Day is a Blessing

Thursday, August 22, 2013

A Guide to Twitter and Tweetchats- Part I

In anticipation of the new #gyncsm chat in September I will be writing posts that will provide a short guide to Twitter and tweetchats.

What is Twitter?  How do I get a Twitter account?
Twitter is an online social networking site.  People who use Twitter write text messages known as “Tweets”. There is a limit of 140 characters for each tweet.

If you don’t have a twitter account just go to to set up one. You will be asked to choose a twitter name and a password. People follow me on twitter at @womenofteal.  You are asked to fill in a profile so you may add a brief description of yourself and your interests. Remember everything you post on Twitter will be out there for the entire “tweetersphere” to read. The default setting on Twitter is Public. In other words anyone even if they don’t have a Twitter account can read what you wrote. You can set up a protected account but you have to approve each and every one of your followers and your tweets and comments are not visible to those you haven’t approved. Check out the Help Center pages of Twitter for how to set up an account.

Once you have an account you can follow the tweets of people, companies and organizations you are interested in. You can browse categories or search for the name of the person or company you want to follow. Once you find their Twitter page just click on the blue “Follow”.

On your Home page you will see tweets by the accounts you follow. On your @connect page you will see tweets you are mentioned in, when your tweets are favorited and when your tweet is retweeted (more about that later). On the #Discover page you will see tweets tailored to what topics/ people you follow. On the Me page you see all the tweets you have sent. From your Me page you can send a private message to people you follow, see how many people follow you, change your profile, etc.

You can browse through tweets in the feed on your Home or Discover pages. But what if you see something that interests you or someone asks a question that you want to answer?
If you want to make a comment or answer a question you just hit “reply” in the original tweet.
Remember only 140 characters are allowed and that includes the characters in the account name you are replying to.

Twitter seems at times to have its own vocabulary..  What if you want to share an interesting tweet with those that follow you? Just click on retweet in the original tweet.  RT  will appear in the body of the tweet you post.
What if you want to share a tweet but you want to comment or add to it?
You use MT (ModifiedTweet) in the body of your tweet. This abbreviation lets others know that you changed the original tweet. When would you want to do this? I use it if I want to add a hashtag or comment and/or when I exceed the 140 characters.

Hashtag # ? What is #? A hashtag is a topic people add to their tweets. I post many things with #ovca which stands for ovarian cancer. If I go to the search box and put in #ovca I will see what others are sharing about ovarian cancer. When Superstorm Sandy hit my state last year I would follow #Sandy to see tweets about the electric grid, gas lines, recovery efforts, donation sites etc.

The hashtag #gyncsm stands for Gynecologic Cancer Social Media. If you search that hashtag you will see what others are posting about gynecologic cancers.. You can add information, share links, and be part of the community of women diagnosed with gynecologic cancers ( ovarian, endometrial , uterine, vulvar, GTC, fallopian tube, primary peritoneal). We also invite their families, caregivers and health care providers to join the conversation.  On the second Wednesday of the month the community will meet at the same time 9pm EST to discuss different topics. More about how that will work in a future post. 

I hope you to see your tweets at #gyncsm. 

Every Day is a Blessing!