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Alicia C. Staley
- Female
- Boston, MA
- United States
- Blog Posts (66)
- Discussions (15)
- Events
- Groups (13)
- Videos
Alicia C. Staley's Groups
Alicia C. Staley's Discussions
Twitter List for WEGO Health
Started this discussion. Last reply by AnnaTW Mar 14. 98 Replies 0 Likes
Is there a CURE for you health condition?
Started this discussion. Last reply by cannamystic Feb 21, 2011. 14 Replies 1 Like
Alicia C. Staley's Page
Latest Activity
AnnaTW replied to Alicia C. Staley's discussion Twitter List for WEGO Health"Hi Alicia and all you wonderful Health Activist Tweeps!
I have two twitter-accounts, one where I tweet mostly in Norwegian at
@annatw
where I network mostly with the scandinavian community ( I do extensive health lobbyism here, lecture and write…"
Ben Hirshberg replied to Alicia C. Staley's discussion Twitter List for WEGO Health"I am on twitter @BenHirshberg"
Ricky replied to Alicia C. Staley's discussion Twitter List for WEGO Health"I am on twitter @Dyverse_Steele"
Tiffany Peterson replied to Alicia C. Staley's discussion Twitter List for WEGO Health"@Tiffanyandlupus (I already follow you on twitter!)"
BeChronicallyWell replied to Alicia C. Staley's discussion Twitter List for WEGO Health"I'm on Twitter: TinaConeTarbox
Looking forward to connecting with you!"
Vanessa Scott replied to Alicia C. Staley's discussion Twitter List for WEGO Health"Nice to meet you Alicia! Just added you on Twitter (@Vaginal_Surgery). Hoping we can connect here as well. :-)"
MSAwarenessTeam replied to Alicia C. Staley's discussion Twitter List for WEGO Health"@MSAwarenessTeam
We are a non-profit org. on the growing side! So please make sure to follow us, and check out our blog: ms-awareness.blogspot.com
"
Dr.KDHoffman replied to Alicia C. Staley's discussion Twitter List for WEGO Health"Hi, I've followed the last 4 or 5 of you I'm @kdhoffman2 and have a chat on Thursdays at 8pm ET #hchlitss for health communication, health literacy and social science...would love any of you health activists to be guests on the chat.…"
Alicia C. Staley commented on Angela's blog post The Benefits of Journaling for Breast Cancer Patients"Thanks for sharing these excellent resources."
GotDownSyndrome replied to Alicia C. Staley's discussion Twitter List for WEGO Health"I'm on Twitter: @GotDownSyndrome"
"I'm on Twitter @oldmanblurts"
Marcy Rubin replied to Alicia C. Staley's discussion Twitter List for WEGO Health"I'm on twitter @MarcyRubin main topic of discussion Bipolar Disorder, but don't let that stop anyone from connecting I will retweet for you if the information is educational, supportive and positive no matter what the topic. My…"
Dr.KDHoffman replied to Alicia C. Staley's discussion Twitter List for WEGO Health"I think I have followed everyone...I think we should try to have a wego chat? does one happen? I'm interested in health advocacy! thanks for sharing! Kathleen @kdhoffman2"
annemarie replied to Alicia C. Staley's discussion Twitter List for WEGO Health"Alicia.... I'm here @chemobrainfog..... AnneMarie"
Libby replied to Alicia C. Staley's discussion Twitter List for WEGO Health"Hi Alicia! My twitter handle is @TheAllergicKid. So when are you going to have a twitter party? ;-)"
Iris Carden replied to Alicia C. Staley's discussion Twitter List for WEGO Health"Hi Alicia, I'm Iris Carden and on Twitter I'm @IrisCarden."
Natasha Tracy replied to Alicia C. Staley's discussion Twitter List for WEGO Health"I'm on Twitter at @natasha_tracy
Thanks."
Dr.KDHoffman replied to Alicia C. Staley's discussion Twitter List for WEGO Health"forgot to put my twitter here I'm @kdhoffman2"
Profile Information
- In the online health communities I participate in, I'm:
- a Match Maker (Connecting people)
- The online health resource I contribute to most frequently is:
- http://www.awesomecancersurvivor.com/
- This site is:
- my blog
- Which is:
- my blog
- I’m also on:
- http://www.twitter.com/stales
- It's:
- my twitter
- You can also find me at:
- http://www.thestaleyfoundation.org/
- This is:
- my non-profit
- More about me (my health interests and reasons for joining WEGO Health)
- three time cancer survivor. Hodgkin's Disease and Breast Cancer (2).
My Cancer By the Numbers
I'm an engineer by education, so sometimes I think it's easier to explain my cancer experience by the numbers:
I've had Hodgkin's disease once, Breast Cancer twice. I was a 20 year old college sophomore, fighting my way through cancer for the 1st time. To diagnose the Hodgkin's, I had every major organ in my abdominal region biopsied, a section of my hip removed, my spleen removed, and for good measure, I let the doctors take out my appendix too. To treat the Hodgkin’s, I had 18 weeks of radiation and 9 rounds of chemo therapy. My chemo regime had 4 drugs. I still have 21 little blue radiation tattoos used to mark the radiation field on my body. I lost all my hair and lost a ton of weight. It took close to 3 years to battle through the Hodgkin’s.
At the age of 33, I was diagnosed with breast cancer for the first time. I had one lumpectomy and 5 intense days of Mammosite Radiation. For two years, I dealt with horrific side effects from “the anticancer drug” Tamoxifen – dry eyes, night sweats, bone pain, weight gain, migraines, insomnia, fevers… Sometimes, the cure is worse than the disease. In November 2007, I was diagnosed with breast cancer for a second time and I opted for major surgery - a double mastectomy. I had my thyroid removed during that surgery too. In total, I've had 3 separate courses of radiation, 1 course of chemo, 8 major surgeries, and 1 bone marrow biopsy. Whew…
I'm walking proof that super glue and duct tape works wonders.
But in case you want to know... I can still hit a golf ball 250 yards on a good day... bad day, maybe 235.
I've had Hodgkin's disease once, Breast Cancer twice. I was a 20 year old college sophomore, fighting my way through cancer for the 1st time. To diagnose the Hodgkin's, I had every major organ in my abdominal region biopsied, a section of my hip removed, my spleen removed, and for good measure, I let the doctors take out my appendix too. To treat the Hodgkin’s, I had 18 weeks of radiation and 9 rounds of chemo therapy. My chemo regime had 4 drugs. I still have 21 little blue radiation tattoos used to mark the radiation field on my body. I lost all my hair and lost a ton of weight. It took close to 3 years to battle through the Hodgkin’s.
At the age of 33, I was diagnosed with breast cancer for the first time. I had one lumpectomy and 5 intense days of Mammosite Radiation. For two years, I dealt with horrific side effects from “the anticancer drug” Tamoxifen – dry eyes, night sweats, bone pain, weight gain, migraines, insomnia, fevers… Sometimes, the cure is worse than the disease. In November 2007, I was diagnosed with breast cancer for a second time and I opted for major surgery - a double mastectomy. I had my thyroid removed during that surgery too. In total, I've had 3 separate courses of radiation, 1 course of chemo, 8 major surgeries, and 1 bone marrow biopsy. Whew…
I'm walking proof that super glue and duct tape works wonders.
But in case you want to know... I can still hit a golf ball 250 yards on a good day... bad day, maybe 235.
Alicia C. Staley's Blog
Komen's Wild Ride
Posted on June 10, 2011 at 2:00pm 21 Comments 16 Likes
Dear Susan G. Komen for the Cure:
Stop. Just stop. I've reached the point where I'm embarrassed by you and all your branding efforts for the cure. I see tons of pink ribbons, plastered on everything from shampoo to lawn mowers and cat litter. I'm beyond aware. I'm frustrated. I can no longer justify your breast cancer awareness campaigns to my friends that want to know why there's no cure. I've received more emails in the past week over at…
Continue Healthcare, Facebook & The Social Media Revolution
Posted on June 9, 2011 at 3:00pm 2 Comments 4 Likes
Each week, the statistics about Facebook become more and more incredible! Check these out:
- 500 million active users
- 250 million Facebook users accessing content via mobile devices!
- Average Facebook user connects to 80 community pages, groups and events
My favorite places to track Facebook usage are CheckFacebook.com and…
Continue Why are you a Health Activist?
Posted on May 30, 2011 at 9:46pm 2 Comments 1 Like
Earlier this week, I received a quick note from Lisa Gualtieri with a very simple question:
Why do you think some people turn a health experience into activism, launch a website, a movement, or a mission of some sort and others don't?
I thought this was a great question. We spend a great deal of time pouring over questions like: "Are you a Health Activist?" We also spend a great deal of…
Continue The Zombie Apocalypse: Are you ready?
Posted on May 24, 2011 at 4:30pm 6 Comments 4 Likes
Last week, the Centers for Disease Control and Prevention issued a blog post on how to prepare for the impending Zombie Apocalypse. Yes, that CDC... and yes, those kinds of Zombies. You can read the blog post here: …
Continue GIST Game - Novartis launches an iPad App!
Posted on May 23, 2011 at 3:00pm 0 Comments 2 Likes
Currently, there are over 1,700 applications in the iPad App store in the medical category. That's a lot of apps!! It’s clear that in some cases certain applications are miscategorized. Apps for daily horoscopes are included in the medical category simply because the word cancer shows up in the description for the cancer zodiac sign. I'm not sure how apps are categorized and if this is a self-selected category assigned by the app developers. I need to check into that. The App store…
ContinueComment Wall (80 comments)
- At 10:13am on June 17, 2011,
Angela said… - Hi Alicia, Thanks for the friend request!
- At 12:32pm on June 11, 2011,
notgoingtotakeitanymore said… - Thank you Alicia! I will join the Breast Cancer Group! And I'll share more about what we are currently doing in our own community to support women who have been affected by any form of cancer. Thank you for the welcome!
- At 10:47am on June 8, 2011,
Bonita Shelby said… Hi Alicia
Thank you for reaching out to me. You are welcome, NBCC is a great organization with empowering educational and advocacy programs. I was accepted to attend the Project Lead Institute next month. Please consider joining with us and coming to the 2012 Advocacy Training Conference which includes Lobby Day on Capitol Hill. INCREDIBLE OPPORTUNITIES! http://www.breastcancerdeadline2020.org/
- At 3:55pm on June 1, 2011,
sgruenwald said… Hello, Alicia,
I really appreciate your welcome to the group and website. I am now also following you on Twitter - thanks for the add :) As I said before, it is not uncommon for others to tell me that they have never heard of KTS, which is a big reason why I made Caitlyn's blog. I update her blog about every 2-4 weeks. Sometimes I get caught up in life and forget - actually I still need to go blog about our last trip to Milwaukee, haha. I look forward to chit-chatting with you!
- At 2:22pm on May 24, 2011,
Sherri said… Hi Alicia, Thanks for the welcome. I look forward to being an active member in the Blood Cancer group and talking to you soon. I am currently in what is known as molecular response as there is no remission for CML. And that is a very good place to be. Take care and look forward to chatting with you soon.
Sherri
- At 7:39pm on May 16, 2011,
nateosit said… - Thanks Alicia! Happy to be here :)
- At 7:35pm on April 15, 2011,
jackiefox12 said… Alicia,
Thank you for the welcome and for adding me as a friend! P.S. I don't think I've told you it's awesome you are an engineer. My day job is PR/media relations for an engineering firm (HDR!) My hat's off to all the engineers, but especially the women.
- At 10:08pm on April 4, 2011,
Crystal said… - Thanks for the friend request, Alicia! :-)
- At 12:21pm on April 3, 2011,
tonij55 said… - Thank you for the friend request.
- At 2:49pm on March 21, 2011,
Dear Thyroid said… - Indeed we are! I appreciate your anger a lot - I get it. I'm glad that you're expressing your angst and frustration. Get it out. Keep writing. Consider submitting a Dear Thyroid letter (sbumissions@dearthyroid.org) http://dearthyroid.org/submissions/submission-guidelines-dear-thyroid-letters/
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