Jeff McManus – “I used to be a loner before meeting Cara.”

Jeff was a caregiver for his wife, Cara, who passed away in April 2015. She only survived 20 months after being given her stage IV lung cancer diagnosis. They met in 2006 and quickly became good friends. They would have been married for 4 years in June of that year. Jeff confessed to me, “I used to be a loner before meeting Cara. She brought me out of my shell and we started hanging out with friends.”

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Jeff has a PhD in biology and works full time in a research lab. He enjoys his work and his coworkers. In his free time he likes playing trivia with his friends, going to Indie rock concerts, and cooking. He and Cara both loved cooking and often made meals together. He also likes to stay active by riding his bike, another fun activity him and Cara did together, lifting weights, and playing basketball.11701206_10206467281536895_7748489362918094982_n

Jeff became involved with advocacy along with Cara. He raises awareness on Facebook and Twitter to help inform others. Lungevity’s Breathe Deep in Cleveland came about largely due to her efforts. She worked on this project for much of her last year, but unfortunately was not there for the event. She passed away just 2 months before so Jeff spoke in her honor about how much it meant to her. This is something he says he’ll continue. cara

Cara had the ALK mutation but none of the 7 treatments she tried worked for very long.

Jeff confided, “Cara’s passing took everyone by surprise, including her doctors. It happened so fast.”

How did you manage to get through the day after her passing?
“Initially, I was just shocked. The immediate aftermath kept me busy with the funeral and going through her things with her family. It gave me something else to focus on and I had a lot of support from family and friends.” He also befriended a woman online whose husband had just passed away from lung cancer as well. This helped him get through the tough times.

Something you might not know about Jeff is he’s big Star Wars fan. Jeff and Cara actually watched Return of the Jedi on their first date. In fact, his twitter handle: Jeff3263827, is a Star Wars reference.

What inspires you?
“Cara’s life was an inspiration to me because she had something really horrible happen to her and in spite of that, she had a great attitude and continued to live her life. I carry her spirit with me.”

You can read more about their journey on Cara’s blog:http://metastaticfantastic.blogspot.com/

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.
Yesterday Luna Okada profiled Rachel Willeford on her blog http://lunaoblog.blogspot.com/
Tommorow’s post will be on http://samlmixon.blogspot.com/ where she will profile Roz Brodsky..
All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

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Denise Cutlip – One of the neatest ladies I’ve ever met.
Twitter: @dennycee

I originally “met” Denise online, who is known as Denzie on Inspire.com. She helps other survivors by sharing her insight and support often going on several times a day, including when she can’t sleep in the middle of the night. She told me “I saw the hopelessness in my family’s eyes when I was diagnosed and I want to help alleviate that for others.” I have no doubt that she has. Anyone who has ever talked to, or met her, can see the genuine compassion and love she has for others.

I got the pleasure of meeting Denise in person at Lungevity’s Hope Summit in DC in 2014. She had vibrant purple hair and an infectious smile. She is a wonderful woman that has really touched my heart.

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Her connection to lung cancer-

Denise is no stranger to lung cancer. Her father passed away when she was just 15 from mesothelioma from working in boat yards and the plastic industry. She then lost her mother to adenocarcinoma lung cancer in 2006 shortly after being diagnosed. So when Denise was diagnosed on 10-10-10 with stage IV adenocarcinoma, her first thought was “Oh crap! What can I do to live longer than 6 months?”

She was given 15 months to live and she felt like she lost all of her independence. She did some research and later connected with other survivors on Inspire. Learning and sharing with others in her position is what gave her courage and hope to carry on. Even though her family just wanted her to rest, she did not want to be a burden on them. So she slowly started doing little things around the house, not only to contribute, but to also feel like a productive person again. She also started with short walks down the driveway, which eventually graduated to down the street, and then to a whole mile. She was finding her “new normal.”

This journey has not come without its hurdles. She had aggressive, concurrent chemo and radiation that kept her disease free for 3 years. But during that time she endured 4 vertebral fractures due to weakened bones, and procedures to deal with the fluid in her lungs and surrounding her heart.

As if dealing with lung cancer is not enough for one person, she was diagnosed with stage I breast cancer in 2014. She confessed “After dealing with stage IV lung cancer, I wasn’t scared about breast cancer at all. It was more of a nuisance. I learned a lot of tools about how to be involved with the decision making.” She had a lumpectomy and radiation and is now cancer free again.

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A typical day for Denise:
“ I’ve taken back as much as my previous life as possible.” Working 2 days a week at her previous job scheduling at a radiology office for breast cancer screening, going to the gym a few days a week at the senior center, and driving her cousin or friends to doctor appointments is what keeps her busy. She loves to ride her bike and bake and somehow finds the time to volunteer with ACS community events, such as music festivals, heritage festivals, and info tables at events to educate the public about lung cancer. “I want to correct the misconceptions about it.”

What are you looking forward to? “The holidays and having family over. I love to cook.”

Something you might not know about her-
In the late 70s and early 80s she was a DJ of a punk rock radio show! Of course this totally explains the purple hair she loves to don. She still likes listening to Sid Vicious and the Sex Pistols, The Clash and The Stranglers. This just makes me love her even more!

What do you want others to know about lung cancer?
“It’s not an automatic death sentence. When the doctor tells you you have only a few months to live, it’s based on a curve and no one can predict where you’ll be on that curve.”

What brings you hope?
“New research. That is the hope for the future. I believe that we can survive this. They’re coming up with new treatments all the time and I really think we can live with this as a chronic disease one day.”

It was my absolute pleasure hearing and sharing Denise’s story. She not only made it past 6 months, she’s made it past 5 years and is doing well. I know she will inspire you, just like she has me.

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.

Yesterday Kim Weineke profiled Anne Gallagher on her blog. Read about it here http://aquariusvscancer.com/
Tommorow’s post by Janet Freeman-Daily will be on http://grayconnections.net/, where she will profile Dr. Ross Camidge.
All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

It’s November, which is Lung Cancer Awareness Month. In honor of this, a group of lung cancer bloggers will be interviewing people in the lung cancer community and profiling a patient, caregiver, advocate or health care provider each day. I will be posting them for your enjoyment. I am excited to participate and help raise awareness.

Andy Trahan – “If you have lungs, you’re at risk for lung cancer.”
A 35 year old father of 3, husband, and stage 4 lung cancer survivor. Diagnosed 2-14-13

Andy has been involved in advocacy by speaking to Representatives and Senators to share his story. Along with LCA he helped convince them to sign the bill for Low-Dose CT as a screening option. He and his wife, Leslie, also got a lung cancer specialty license plate in their state of Louisiana. He occasionally connects with other survivors that need support. His dad does a lot of research and connects with other survivors too and his sister created a Facebook page “Andy’s Team.” His brother has helped Andy with his work when he’s not up to doing it himself. Everyone has come together and has a role in the family to support Andy.

the kids' first day of school this year

the kids’ first day of school this year

What is a typical day like for you? I work from home sending reports to banks and finance companies so I drop my kids off at school then work on the computer. I play tennis or go to bible study and then it’s time to pick the kids up from school. The kids have practice so I take my daughters to dance or soccer and my son to flag football. Leslie usually starts dinner, I help the kids with baths, and we eat supper together.
As a family we like to go to the movies. We see almost all the kid appropriate movies out there. The weekends are filled will ball games for the kids and we go to Mass on Sunday and watch the Saints during football season.
What is something people might not know about you – I got symptoms in my freshman year in high school and was diagnosed with narcolepsy. I get a warning ahead of time and get really sleepy, but I take meds to help so I don’t have to live in a bubble 

How are you right now? Physically, I’m doing as well as I ever did before cancer. I’m also at my best place emotionally right now. I’m on a clinical trial and medically, I just got the best scans a few weeks ago…. so I’m doing good.
What do you want people to know about LC? If you have lungs, you’re at risk for lung cancer.

What brings you hope? Seeing new drugs go into trials. That means that I might have another year or two added to my life. The big hope is to skate on these drugs long enough so that the medical breakthroughs stay one step ahead of my cancer until there’s a cure.
I met Andy and Leslie 2 ½ years ago right after his WBR. Their faith and the love they share really touched me and I jumped at the chance to interview him. Thanks Andy!

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.
Yesterday Jill Feldman was profiled by Luna Okada on her blog “Cancer…an unexpected journey.” http://lunaoblog.blogspot.com/
Tommorow’s post will be on http://lil-lytnin.blogspot.com/ where Tori Tomalia will profile Brendon Stiles, MD.
All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page

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November is Lung Cancer Awareness Month!! Did you know that?     It seems not many people do.

I’m going to challenge YOU to take part. If you’re reading this, you not only know someone with lung cancer, you will be personally touched by it at some point in your life. (sorry to say)

225,000 people will be diagnosed with lung cancer in the US this year. Approximately 160,000 will die.

That’s 438 people per day!

If a jumbo jet crashed killing 438 people per day – that would get attention!!

Airplane Crash (1)

Here are a few facts:
– Lung cancer is the #1 cancer killer in the WORLD
– It kills more people than breast, prostate, and colon cancer COMBINED yet it receives the lowest funding
– Lung cancer in non-smokers is the 6th leading cause of cancer death in the US
– Lung cancer is on the rise in young , never-smoking women
– If you have lungs, you can get lung cancer

During the month of November a group of amazing lung cancer survivors/bloggers are going to feature someone each day that has been affected by lung cancer. You may not blog but you can still participate.

READ them, SHARE them, and HELP educate others.

If you’re my friend, care about me or my family, or have a personal experience with lung cancer, I am relying on you to help me raise awareness.

It is only after educating the public, we can then tackle the funding issue.

Thank you in advance for your support!

For 1,461 days I have been knowingly LIVING with stage 4 lung cancer (who knows how long these rogue cells were growing before we found it). September 27th is my 4 year cancerversary. A day, and almost exact time, I will never forget. It was shocking, devastating, sad, maddening, scary, and anything but hopeful. So much has changed in the last four years.

I had just graduated college and was excited to start my new career in the medical field. Our plan was to get established then my husband would look into changing careers also. We had a big, beautiful house, money in savings and we were happy.

After navigating all the treatments: chemo, radiation, 4 surgeries, multiple biopsies, the many fun side effects that came along, and now my targeted drug therapy (AKA my miracle pills) things are feeling more “normal”. My husband is now the sole supporter of our family and at the same great job, we have downsized into a smaller house, but we are still happy.

And so grateful…grateful for our families’ never-ending support and love, for our friends that stuck around when it counted, for my awesome oncologist and medical team, all the amazing and brave survivors that are now good friends, and for God’s promises about our future. Life is good.

We celebrated by having a delicious dinner at PF Chang’s with my family. We celebrate every occasion with food.

4yr dinner 4yearsurvivor

The statistics are grim = a 2% 5 year survival rate for stage 4 LC. This is changing with focus on genetic mutations and targeting the specific driver of the tumors. The survival rates are higher in this population and I’m hopeful these numbers will continue to rise. I’m so hopeful in fact that I want you all to consider this a “Save the Date.”

Next year will be 5 years! I plan on beating the odds and celebrating with a huge party. We’re renting a banquet room, having food, music, dancing, and an open bar (duh, have you met our family and friends?).
If you’re reading this, you’re invited.
You have plenty of time to save up for a flight if you live out of town and we’ll hopefully get a discount on hotel rooms. I’m not kidding – I expect you all there. The more, the merrier!!!

I was very doubtful I would be alive 5 years later, even 4 years later, but I fight every day to have more time with my family. My faith in God gives me the strength I need and my family’s love gives me the motivation. I try to eat healthy, eliminate stress, exercise, travel, and help other survivors. The best part of this whole journey has been meeting other survivors, sharing our stories, and spreading hope. Meeting a 10+ year survivor ( I know 6 of them!) gives me hope that I can do it too. Many unpleasant things have come with cancer, but many great friendships have been made too. These are connections that I cherish greatly.

Exercise is one thing that helps me feel more “normal”. I can’t run anymore but I still really push myself to work hard, sweat, burn calories, and increase my endurance. Some days I have to force myself to go, but I’m always happy that I did. With my limited lung function I sometimes get discouraged because I can’t do what I used to. Then I remind myself of those that are no longer here and push myself for them. Studies have actually shown that you have a lesser chance of recurrence if you exercise regularly. I know this is hard for some, but even short walks make a difference. Trust me there were days I could barely walk around my short street. Baby steps…

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My life now consists of reading and researching about lung cancer every day, talking to other survivors, going to several conferences a year, participating on several advisory boards, sharing my story, and pleading Congress for more money for research. Most importantly, making memories with my family and trying to enjoy each and every day. It’s much different than what I had envisioned for my life, but I’m trying my best to make a difference and make my kids proud.

So save the date people – Tuesday September 27, 2016!!!

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with Rep. Joe Heck (NV), the Foster family, Paul and Brett at the Rally for Medical Research

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About a year after I was diagnosed with stage 4 lung cancer, I had an overwhelming feeling that my life had a new purpose. I truly believe everything happens for a reason and God has a plan much bigger than mine. I kept asking myself: what I supposed to learn from this disease? What I am supposed to be doing with my life? How can I help others?

I initially began volunteering with the American Lung Association. I gathered a team and raised money for their walk and stair climb, got trained to help out with some of their programs, and became a spokesperson for their events. I helped to educate our community about their free programs and they gave me the platform to raise awareness for lung cancer. It’s been a perfect partnership but I felt like I needed to do more. We need more funding for research. For being the #1 cancer killer in the US, lung cancer receives just a fraction of the funding it so viciously demands.

What is an advocate? Well, Merriam-Webster says it is a person who speaks or writes in support of a person or cause. Another definition that I like better is a person who pleads for, or in behalf of another. Pleading… that’s nearly what I do when I share my story, and thousands of others’, to the leaders of our great country.

This past week, I was asked by the national office of the American Lung Association to join them in 8 separate meetings with key members of the Senate and House on the Appropriations Committee. The topic: more funding to the National Institutes of Health (NIH) for medical research. Not lung cancer specifically, but all medical research. This is something that affects EVERY SINGLE AMERICAN. I was escorted by the national CEO of ALA, Harold Wimmer, the national Chair Kate Forbes, the national advocate Erika Sward (love her!) and their legislative counsel, Dale. I had quite the entourage.

on capitol hill  senator cochran

Although it was a long day, beginning at 8am and finishing at 10pm, I was honored to participate and hopefully pull on some heart-strings to make a difference. Oh yeah! This was after a 12 hour travel day due to a 5 hour flight delay in Chicago. Oh Chicago, why can’t your planes ever leave on time?

After an exciting day of walking (lots of walking) and talking on the Hill, I attended an award dinner reception for PhRMA (they represent the country’s leading biopharmaceutical researchers and biotechnology companies). It was wonderful to see the brilliant researchers that are working on cures and drugs for cancer. They keynote speaker was Tom Brokaw. He was captivating and inspiring while telling his experience of being diagnosed with cancer.

AND a bonus! I ran into fellow survivor/advocate extraordinaire Matt and his stunning wife Melissa and Lungevity Superstar Andrea! They put all us “lung people” at the same table so we enjoyed great conversation along with amazing food.

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So….why do I advocate? Because I can. I may be a stage 4 lung cancer survivor, but for the most part I’m healthy (how weird does that sound?) and there are too many that are not. Too many want to make a difference but simply run out of time. In fact 160,000 of them this year alone. That terrifying number includes my grandma, Jenn, Kierstin, Paul, Burton, , and as recently as yesterday, my friend Robin. I know there are many more I’m forgetting just in my small circle (chemo brain = lousy memory). I fight for them. I walk miles, I talk to anyone who will listen, I read and research daily, for those that no longer can and so less families have to experience the devastation of lung cancer.

I believe in a mighty God and I believe this is my life’s purpose. I was a bartender for 17 years, that went to college at 38 to go into the medical field to help others. If you told me 5 years ago that I would be speaking to hundreds of people at a time and going before Congress to ask them for money, I would’ve said you are crazy. I hated public speaking….but I hate cancer even more.

I will be heading back to Washington D.C. next week for the Rally for Medical Research. This will be my 2nd year in a row and I pray they listen to the 263 advocates that will be pleading for more funding.

Please remember growing old is a privilege that not everyone gets to enjoy.

            

Woop! Woop!

I’ve been on my wonder drug, ALK/ROS1 inhibitor Xalkori for 27 months and counting. Praise God for giving me more time to make memories with my family and friends.

So much has happened in the last month but I was waiting for my latest scan results before writing a new post. I think I’ll work backwards…..

Saw the amazing, life-saving Dr. V this morning (with my entourage in tow) to hear these fantastic words “nothing new!” Be prepared to see a lot of exclamation points in this post! I’m very happy and blessed to still be in remission!!! We did talk next options and we’ll cross that bump in the road when it appears.

As many of you in the lung cancer community know, Saturday August 1st was the 4th annual World Lung Cancer Day. I was lucky enough to get to do a news interview (at 6:45am) to promote this awesome holiday with ALA rep and friend, Richard. I was able get in all the points I needed to along with a shout-out to Betsy Thompson (founder and survivor extraordinaire) and also mention the sad loss of a beautiful 20 year old (Kiersten) that recently when to Heaven. I want everyone to know ANYONE CAN GET LUNG CANCER!

The most impactful and heartbreaking event over the last month was losing my grandmother on July 20th. I was with my family on vacation in Florida and we flew to Kentucky to be by her side with the rest of our family. Thank God I was able to see her, talk with her and hold her hand before she went to her final home. Please pray for healing for my family, especially my mom. My Gram also had lung cancer (Squamous cell) so my mom has lost her mother and is dealing with her daughter’s fight also. Our greatest comfort is that the cancer died with her body and she is at peace dancing in heaven with the love of her life. I used to call her every weekend while I sat on my patio, drinking coffee. I can’t do that anymore and I miss her so much.

Again, I am reminded: Every day is a blessing and growing old is a privilege.

meet again10614258_10202949248152535_3789483547014002195_nme.Jen

The first year or so after my cancer diagnosis I was in an eternal fog; Constantly living, breathing, and learning about cancer. Once I was lucky enough to start a targeted therapy (xalkori) and I started to feel more like my old self, I decided something good had to come from this catastrophic disease.

I wanted to help others in my situation and pass along the info and hope I had gained through a lot of research and new friends in the lung cancer community. I started volunteering with our local American Lung Association: speaking at their Fight For Air Walk (later Lung Force), Frankly Speaking, Scale the Strat, and doing TV and radio promos for their fund raisers. I also got trained and facilitated Freedom From Smoking and Not on Tobacco classes to help others to lead a healthier lifestyle. I helped them to put a face to their cause and they helped give me a platform to share lung cancer facts to our community. But in July 2014, they gave me so much more….

Diane called me and said a young lady, recently diagnosed with stage IV lung cancer, contacted them for information and wanted to get involved with their organization. Would I be willing to meet her? YES PLEASE!
Diane set it up and I met with Jen for tea. We talked for hours. We shared our stories, cried, hugged, and exchanged numbers. I felt like I’d known her for years and I knew as soon as I left that I had just met a life-long friend. I didn’t know that time would be limited to 11 months.

Jen was a young, healthy 41 year old that gave cancer a run for its money, but we all know: cancer does not fight fair. Sadly her treatments didn’t last long before having to move onto another, but she endured it all with grace and a beautiful smile. The outpouring of love and support to her family has been amazing. She was a teacher and she taught us all more than she’ll ever know. The lives she touched will forever be changed for the better.

This is the hardest part for me; making friends with other cancer warriors. I love having them to share advice, support, and love with, but it literally crushes my heart each time one of them goes to Heaven.
Psalm 34:18 says “The Lord is near to the brokenhearted and saves the crushed in spirit.” Well Jesus must be sitting on my lap because I am truly crushed and heartbroken – mostly for her family. Of course I’m sad and will miss her dearly, but her parents, her young daughter, her sisters and nieces…they’re the ones I’m most sad for.

I got to see Jen a few days before she passed and we talked and told each other how much our friendship meant. When I went back 3 days later I knew it was the last time I would see my friend: she was set free from her pain and this torturous disease a few hours later. Yes, It’s hard, it sucks, it’s very difficult to lose my friends, but I wouldn’t give it up for anything. Lung cancer has taken so much from me but in return I have met dozens of beautiful, strong, funny, encouraging, supportive, smart, and tenacious fighters that have become wonderful friends.

I feel like I’ve been praying nonstop over the last week; to remove the pain and replace it with peace and comfort. I find peace in this scripture from Revelation 21:4 “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” I know Jen is free of pain, able to walk, and watching over us all.

More than ever, I remember my mantra: growing old is a privilege that not everyone gets to enjoy.

I will always remember you and our friendship…until we meet again.

Of course we all know our life here on earth is too short. To some I suppose it may feel like an eternity, but for those of us fighting for another day……it is way too short.

My birthday is May 10th, which was also Mother’s Day this year, so double celebrating for me! There is nothing I enjoy more in this world than being a mom. My family has always been the most important and cherished aspect of my life. I’ve never really been one to make a big deal out of my own birthday. I don’t think it’s that I didn’t want to get older (although, I’m not gonna lie, 40 was a little rough for me) but it was just another day. My kids birthdays…yes. My husband’s, my mom’s, my friends’ birthdays… I try to go above and beyond to make them feel special.

As with most occasions in my family, we celebrated with food. After church, we bbq’ed carne asada, salmon, corn, and pineapple and roasted potatoes, broccoli, and zucchini in the oven. My mom brought cake – actually 2 cakes! and I ate too much as usual. My friend Shelly sent me flowers from Minnesota, my mom bought me a massage, my husband got me flowers and decorated the dining room. My sweet furbabies even inked their paws on my card. It was a great day!

But it didn’t end there. I decided to spoil myself (and my lucky daughter) to Rock In Rio weekend festival tickets. I was most looking forward to seeing my “boyfriend” Bruno Mars on Saturday but we saw a ton of great artists on Friday too: Tove Lo, Charli XCX, Ed Sheeran and Taylor Swift. Then round 2 on Saturday with John Legend and Bruno baby! There were “neighborhoods” from the US, UK and Brazil with food, dancers, and music everywhere. We ate good food, sang, danced and had the best time. We were exhausted and didn’t get home until after 3am.

I feel so blessed to have another year with my family. I hope these are the times my kids remember. Not the days I’ve been sick, or that I may have left them way too soon, but the fun times…the good times.

Getting old is a privilege that not everyone gets to experience. I plan on enjoying every single day.

flowers and cards

birthday cakes!! flowers and cards

me & Devin

me & Devin

Rock in Rio Las Vegas

Rock in Rio Las Vegas

Bruno Mars

Bruno Mars

Ed Sheeran

Ed Sheeran

Charli XCX

Charli XCX

dancers from Brazil

dancers from Brazil

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