Community Support

Giving Thanks

It’s hard to believe that November is around the corner. And, like many of you, our family will join together to give thanks for all that is good in the world.

Faith, Family, Friends.

So much to be thankful for.

Please allow me to wish you a Happy Thanksgiving.

May you be blessed with love and peace.

“May You Live This Day

Compassionate of Heart,

Clear in Word,

Gracious in Awareness,

Courageous in Thought,

Generous in Love.”

From the poem “Matins” By John O’Donohue (2008)

 

 

 

 

 

A Slippery Slope Indeed – Reflections on Survivorship

A Slippery Slope Indeed

by Dan Dean

 

Dan & Amelia

At this year’s CancerCon in April—a national cancer conference for adolescents andyoung adults—I co-presented with Amelia Baffa and Dr. Jennifer Giesel a talk on the mental health challenges many cancer patients and survivors experience and the ways to treat them—TheSlippery Slope of Survivorship. Both Ameila and Jenn support the adolescent and young adult cancer population at University Hospitals with psychosocial care. Our presentation reminded me of a time early in my survivorship experience, two or three months after treatment ended in 2003.Several well-meaning friends suggested I see a therapist to help make sense of this intense, life-altering experience. In my family, therapy wasn’t necessarily stigmatized, but no one in my family used it before either, aside maybe from consulting our family priest. And so I didn’t really consider it as a tool, unless things got really bad.
I ended up working through all of challenges in survivorship without any kind of professional help. I read tons of books, tried different approaches to living in my new normal, and consulted with close friends and family about how to make sense of things. I did a lot of the heavy lifting in the three years after treatment ended and largely came out okay. But I was fortunate in that my biggest supporters—my mom and brother (and dog Lady)—did as much as they could to support my study in self-care and recovery. Close friends augmented their support and I leaned heavily upon them to get through.
Looking back, I realize that without them, I could have developed depression or PTSD or any number of ailments of the mind. Back then, I didn’t know the terms and what they meant, but I can see how my support systems’ unwavering commitment to my recovery more or less kept me on track and clear of more serious issues.
Not everyone is as lucky as I was. What I learned from Amelia and Jenn is how professional therapy, the way an individual processes cancer, and a support system all work together; my recovery leaned toward the latter two. For other people, that metric can be different; some many not have access to a professional or a support system, left on their own to figure things out.
Now that I am 14 years out from my cancer experience, I recommend the value of professional psychosocial support, even though my path was more solitary and self-guided. There are plenty of opportunities to take the baton a therapist hands off to you and wrestle with those challenges on your own.
The two therapies I wished I had that could have sped along parts of my recovery were 1) diaphragmic breathing and 2) using a thought log. Diaphragmic breathing is a great deep breathing technique that slows the mind down and calms a person’s physiology so they can actually do therapeutic work. Thought logs are a step-by-step way to break down recurrent, unhelpful thought patterns by challenging the assumptions behind them. They’re helpful not just for cancer patients, but anyone dealing with day-to-day life stress. (to download both tools, visit www.m-powerment.org/cancercon)
There’s no exact method a person can use to find their way from the end of treatment and into their new normal. The keys, in my opinion, to make it through are keeping on the path toward the new normal—even though it may take you down many side streets you don’t necessarily want to settle on—and not going at it alone.
I certainly tried many approaches and there were some I discarded early on and others that have stayed with me well beyond those initial weeks and months into survivorship. But as I engaged in an extended time of trial and error with all of those therapies, it was the constant support of my family and close friends that kept me on the path and into the life I enjoy today.

 

Dan Dean is a 13-year survivor of stage IV non-Hodgkin’s lymphoma. Recognizing that few resources exist geared specifically toward men affected by cancer, Dan founded M Powerment to bring men of all ages together to lead amazing, impactful lives after a cancer diagnosis. A lifelong Cleveland sports fan, Dan also plays basketball, kayaks, hikes, and likes to go trail running.

Dan is also a SGAYA Board Member.

The website for the therapies presented at CancerCon 2017 is www.m-powerment.org/cancercon

Dan’s professional sites: www.dan-dean.com and www.m-powerment.org

Lou G., Pat T., & Angie

NE Ohio Cancer Warriors and Friends

Here are some photos from this year’s #CANCERCON 2017 event. Many thanks to our donors who support the Steven G AYA Cancer Research Fund. This year you sent six cancer survivors to Stupid Cancer’s CANCERCON conference in Denver! FIGHT! CONQUER!! CURE!!!

Alex & Jennifer A.

Bryan, Kim & Steven

Amelia, Angie, & Jennifer

LET’S SAVE A LIFE – BMT DRIVE APRIL 17TH

Hello friends,

Most of you are familiar with Steve’s journey through cancer and the fact that he had a LIFE SAVING BONE MARROW TRANSPLANT. And many of you did register with the Be The Match Foundation in hopes of helping Steven.

BUT SOME OF YOU DIDN’T….PROBABLY BECAUSE YOU WERE TOO YOUNG or too busy…

SO IF YOU ARE 18 – 44 YEARS OLD… HERE IS YOUR CHANCE TO SAVE A LIFE!!!

Our friend Joanne Filina was first diagnosed at 35 years old with Leukemia. She went into remission but it came back a second time. She is in remission again. BUT her doctors are telling her that it might come back again…and soon.

PRETTY FRIGHTENING DON’T YOU THINK?

So here is your chance to help her and others like Joanne.

JOIN THE REGISTRY.

IF YOU ARE A MATCH YOU WILL BE NOTIFIED BY TELEPHONE.

IF YOU ARE CONTACTED…PLEASE SAY YES TO BEING FURTHER TESTED.

AND THEN IF YOU ARE STILL A MATCH YOU JUST MIGHT GET THE CHANCE TO SAVE A LIFE.

YOU WILL BE INCONVENIENCED FOR A COUPLE OF DAYS. AND THAT’S IT!!!

IF YOU NEED MORE CONVINCING TO HELP OUT…THEN HERE IS A QUOTE FROM STEVEN’S DONOR:

“I am honored to have an opportunity to help save a life. When I was first notified that I was a match I didn’t tell anyone until it was confirmed I am a match for someone in need. 

So I mentioned it to my wife…she didn’t hesitate for a moment. I am a parent just like you with three boys… and I couldn’t imagine someone turning down a boy with a full life in front of him….Please know this, you, your husband and your son Steven do not owe me a single thing no even a debt of gratitude, what I did was for myself, and the act in itself was self gratifying. I think you all are great people, and if anything, it is I who owes you and not the other way around. Please keep doing what you are doing in helping other cancer patients and may God help and Bless you. 

With warm regards,  A…..” [Note from Angie: I am maintaining our donor’s anonymity because I did not ask him if I could share this message on the website.]

SO JOIN US 

SUNDAY, APRIL 17TH, 2016 – NOON – 4:00 PM

ST. DEMETRIOS CULTURAL CENTER – FELLOWSHIP ROOM

22909 CENTER RIDGE ROAD

ROCKY RIVER, OHIO 44116

THERE WILL BE A RAFFLE TO RAISE FUNDS FOR “BE THE MATCH”

REFRESHMENTS WILL ALSO BE AVAILABLE.

QUESTIONS:

CONTACT ANGIE: Angie@fightconquercure.com

OR TONYA DAVIS

tdavis2@nmdp.org

for more information

or to make a donation visit:

http:www.bethematchfoundation.org/goto/jojofilina

or to download more information

Joanne Filina Event Flier (1)2016 FAQ and Responses

 

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ARE YOU COMING? WE NEED YOUR SUPPORT!

Hello Friends,

It is not in my nature to be bossy (ha) or demanding (double ha) but we are getting down to the wire. Our annual fundraiser TAKE A BITE OUT OF CANCER – will take place in  TWO WEEKS!!!

Uncle_Sam_(pointing_finger)

Please remember that your donations go directly to support local PAYA (pediatric, adolescent and young adult) cancer research at Case Medical School’s Huang PAYA Cancer Research Lab (www.huanglab.com),  and adolescent and young adult cancer patients and families right here is NE Ohio!!!

This year we distributed over 40 Wellness bags (which cost approximately $150 each) to YA Cancer Patients while in Treatment

We supplied fresh fruit and yogurt for Smoothie Day (bi-weekly) for young cancer patients while in treatment.

We supplied products for “BEAUTY DAY” which uplifted the morale of moms and patients by providing make-up and beauty hints, hand massages and manicures (I never thought massaging another’s hands could be so gratifying.)

We sent four young adult patients  from NE Ohio to CANCER CON 2015  in Colorado.

Also, just last week we sent a $250 check to support a dad and young son with cancer to the Annie Appleseed Project Conference. Annie Appleseed focuses on wellness through Integrative Oncology methods. You can visit their website at www.annieappleseedproject.org.

PLEASE HELP US WITH OUR MISSION

WE WILL NOT REST UNTIL THERE IS A CURE!!!

FIGHT! CONQUER! CURE!!!

take a BITE OUT OF CANCER!!

Saturday, January 23rd, 2016

event-logo (1)7 – 11 pm

23023 Center Ridge Road

Rocky River, Ohio 44116

Cost: $40

Can’t attend?

Well, feel free to make a cash donation or donate an auction item. Email me at info@fightconquercure.com for more info:)

WE ARE READY FOR YOU: TAKE A BITE OUT OF CANCER IS ON!!!

WE HAVE A FUN FILLED EVENING PLANNED SO I HOPE YOU CA2015 auction promorN JOIN US.

LET’S FACE IT, WHERE CAN YOU GO, PAY $40 AND HAVE DINNER, WINE, BEER or SODA, COFFEE AND GREEK DESSERTS…PLUS MUSIC, DANCING, VISIT WITH FRIENDS,…AND HAVE AN OPPORTUNITY TO WIN SOME FABULOUS PRIZES???

WAIT UNTIL YOU SEE OUR AUCTION ITEMS!

HERE ARE A SAMPLE OF ITEMS WE ARE AUCTIONING OFF: VACATION DESTINATIONS, LOGE SEATING, JEWELRY, AUTOGRAPHED FOOTBALLS, BASEBALLS, AND BASKETBALLS ALL FROM CLEVELAND!!!  HAIR AND SPA TREATMENTS, ART WORK, GIFT CARDS TO A NIGHT ON THE TOWN, YOGA, PERSONAL TRAINERS, ICE CREAM, GOLF, THEATER TICKETS,  COSMETICS TO BEAUTIFY AND MAKE YOU LOOK YOUNGER:)

SO JOIN US THIS SATURDAY, JANUARY 24th, 2015.

7 PM – 11:30 PM

 ST. DEMETRIOS CULTURAL CENTER

22909 CENTER RIDGE ROAD

ROCKY RIVER, OHIO 44116.

ALL PROCEEDS GO TO PAYA* CANCER RESEARCH, FUTURE PAYA CANCER RESEARCHERS, PAYA CANCER PATIENTS AND THEIR FAMILIES.

WE ARE A VOLUNTEER ORGANIZATION SO PLEASE JOIN US THIS SATURDAY!

QUESTIONS? CONTACT ANGIE AT: INFO@FIGHTCONQUERCURE.COM.

ORDER TICKETS ON-LINE…ON OUR WEBSITE: FIGHTCONQUERCURE.ORG

EACH YEAR 70K YOUNG ADULTS ARE DIAGNOSED WITH CANCER.

EVERY DAY 23 CHILDREN UNDER 18 YRS ARE DIAGNOSED WITH CANCER.

AREN’T YOU TIRED OF HEARING THESE HORRID STATISTICS?

PLEASE HELP US AS WE FIGHT! CONQUER! CURE!! CANCER!!!

*PAYA  cancer patients = pediatric, adolescent, and young adults = too many young people suffering = we need better research to treat and cure!

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH

 

 

Gold-ribbon

HELLO FRIENDS,

I AM WONDERING IF YOU ARE AWARE THAT SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH?

WE WOULD LIKE YOU TO PAUSE FOR A MOMENT AND JOIN US AS WE HONOR OUR YOUNGEST OF CANCER WARRIORS.

WE HAVE LOST TOO MANY CHILDREN, ADOLESCENTS AND YOUNG ADULTS.

OUR CHILDREN HAVE SUFFERED GREATLY…

WE NEED TO REMIND OUR LEGISLATORS THAT OUR CHILDREN DESERVE THEIR ATTENTION…

WE NEED TO REMIND OUR GENEROUS DONORS ($$$) THAT THEIR MONEY WILL HELP PAY FOR IMPORTANT, LIFE SAVING RESEARCH!

WE NEED TO REMIND EVERYONE THAT WHEN YOUR CHILD IS DIAGNOSED WITH CANCER YOUR LIFE WILL BE FOREVER CHANGED!!!

JOIN US SEPTEMBER 19-21, 2014 AS WE WALK ON WASHINGTON DC FOR CUREFEST TO HONOR AND REMEMBER ALL OUR CHILDHOOD, ADOLESCENT AND YOUNG ADULT CANCER WARRIORS!

FOR MORE INFORMATION VISIT: CUREFESTDC.ORG

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Where are you now, Rock Hudson?

Where are you now, Rock Hudson?

Originally Posted for Four Square Clobbers Cancer: http://4sqclobberscancer.com/

Thank you to Joe Baber for his assistance in preparing this blog. I couldn’t have done it without his assistance!

RockHudson_edited-1Are you wondering who is Rock Hudson? Do you think I have lost my mind? Well …..

Since my son Steven’s diagnoses with Stage Four Osteosarcoma over 7 years ago, followed by a diagnosis of Secondary Acute Myelogenous Leukemia, which required a lifesaving Bone Marrow Transplant, I have learned a great deal about PAYA (Pediatric, Adolescent StevenandAngieand Young Adult) Cancer.

  • I learned that cancer is the leading cause of DEATH (from a disease) in children.
  • I learned that there haven’t been any new drugs developed in over 20 YEARS to treat children with cancer.
  • I learned that the statistics for Adolescent and Young Adult (AYA) cancer survivorship has not improved in twenty years.

I tend to obsess over these issues each and every time I hear about another young person being diagnosed with cancer. I obsess when I meet someone who is fighting for their life from cancer that is not the result of life style behaviors.

So what am I getting at? This morning I had a revelation!

rocktaylor-giant_optI was sitting on the floor with  Steven, who was struggling with immobilizing neuropathic pain, cancer treatment one side effect, and I thought: WE NEED A ROCK HUDSON.        HUH?

Rock Hudson was a handsome movie star during the 1950’s and 60’s. During his youth women loved him! For over 30 years Rock was seen in movies and television. He left the public eye for a few years and then attempted to make a comeback. In the early 1980’s he returned to television to starrockhudson1in Dynasty with Linda Evans. Audiences were shocked at his appearance. What happened to Rock? Was he ill? He looked so gaunt! This isn’t the Rock we remember!

Sadly we later learned that Rock had AIDS. The public was shocked.

Rock Hudson provided a catalyst to the AIDS MOVEMENT. His diagnoses and death was the reality check needed for our society to realize that ANYONE COULD GET AIDS. After his passing, the entertainment industry embraced and used the legacy of Rock Hudson to300.taylor.cm_.32311create awareness about AIDS. One of Rock’s leading ladies of the movie era, Elizabeth Taylor took on the task of creating awareness for this terrible disease. There was a complete and total assault on AIDS in the Media and Entertainment Industry.

Since 1981, 1.7 million people were diagnosed with AIDS. Since 1981, approximately 619,000 have died from AIDS in the United States. Fortunately for AIDS Research, the media and the entertainment industry saw fit to create AIDS awareness which resulted in the development of very effective efforts to fund AIDS research and prevention programs.  Apparently the attention caused by Rock Hudson, and the work of the media and entertainment industry since then were very effective! Today, AIDS is more treatable than ever before, and fewer people are dying each year from this tragic disease.

What does this have to do with Steven and all the other PAYA’s diagnosed with cancer?

Well, our children, adolescents and young adults with cancer have not been so fortunate! We have not experienced a media blitz to raise awareness. Yes, progress has been made for some life threatening cancers, but what about the more rare forms of the disease?

The National Institute of Health/National Cancer Institute (NIH/NCI) budget will provide only $195 million to Childhood Cancer Research (for ages 0-19 years) for 2014.  This amount has decreased for the last several years.  If you consider the effects of sequestration and inflation, you could say childhood cancer research funding is down 30% over 2008!   To put  aids funding in perspective to cancer funding, consider this: While the entire budget for all cancers, adults and children, is $4.9 billion, AIDS research is more than half at 2.9 billion! An estimated 15,529 people with an AIDS diagnosis died in the US during 2010 compared with 569,490 who died of cancer.  Do you see a discrepancy here?

Every year 2,700 children (0 – 19 years old) will die from cancer. That’s 17% of the children diagnosed with cancer. What about the survivors? Do you recall Joe Baber’s report last week? To paraphrase Joe “even when a child reaches the 5-year survival milestone (an arbitrary number), they are still at risk of long term effects…When we talk about “cure rate” it never mentions that more than 90% of those “cured” have serious or life threatening side effects or even secondary cancers caused by the treatment.”

What about AYA (adolescents and young adults’ ages 15 – 39 years) with cancer? Cancer is the leading cause of death (excluding homicide, suicide and unintentional injury) in this age group. In males, besides heart disease, cancer is the leading cause of death. In women it is the leading cause of death  (Bleyer, Viny, & Barr, 2006).

StepUpShineWhere is the Media? Where is the Entertainment Industry? PAYA Cancer shouldn’t be relegated to Special Interest Blogs by heartbroken parents who have lost their children or PAYA Cancer survivors sharing their stories. PAYA Cancer shouldn’t be a sound bite on the evening news that highlights a Walkathon by a few hundred parents and children during the month of September (childhood cancer awareness month) or about a young man or woman bike riding across the country to raise money for a specific cancer. MORE NEEDS TO BE DONE!!!

We appreciate last year’s STAND UP TO CANCER television program highlighting Taylor Swift’s awesome song “Ronan” but MORE NEEDS TO BE DONE!!! After the Stand Up To Cancer Program, did you hear the song “Ronan” played on the radio? Did it make the TOP TEN?

We appreciate all of the wonderful childhood, adolescent and young adult cancer organizations raising awareness and providing support to hundreds of families each year…..BUT MORE NEEDS TO BE DONE!!

We appreciate movies like 50/50 creating some awareness (a rather light hearted attempt at that) of the stresses and fears that a young adult experiences when diagnosed with cancer, BUT MORE NEEDS TO BE DONE.

Where is our ROCK HUDSON???

Is there some way the media and our society can come to an understanding that we parents and family members also grieve each time we lose one of our children to cancer?

The other day, I was reminded of parental pain of loss when I watched the news as a couple grieved over the loss of their child who was murdered at Sandy Hook Elementary School.

How often are parents asked to share their grief over the loss of their child to cancer on national television?

Is the grief of parent who lost their child to cancer any less than those unfortunate families at Sandy Hook? Where is the shock? Where is the disgust?

starprofile_edited-2Who will champion the cause of Pediatric, Adolescent, and Young Adult Cancers? What will it take for the media to dig in and help? How many more children will we lose to Brain Tumors (a childhood cancer that is increasing in frequency every year)? How many teenage boys and girls will lose their limbs or life to a Sarcoma (where treatments haven’t changed in over 30 years)? How many young adult women will die of Breast Cancer (as this age group is more likely to die than any other group)?

Where is our champion? Who else needs to die for the cause?

 

Wellness Project Receives $3000 Grant from the National Philoptochos Society of America!

philoptochos Logo 2014The Steven G AYA Cancer Research Fund would like to thank the National Philoptochos Society of America (www.philoptochos.org) for awarding us with a $3000 Grant. The generous grant will help support the WELLNESS PROJECT being conducted with the Angie Fowler Children, Adolescent and Young Adult Cancer Institute at University Hospitals of Cleveland.

The Wellness Project goal is to educate patients and families about the importance of good nutrition, exercise and relaxation.

Currently we are providing funding for weekly Smoothy Day serving pediatric oncology patients while in treatment.

This new grant will allow us to add another important component to the Wellness Project: to directly meet the needs of older adolescents and young adults. We are working with staff to develop a RELAXATION KIT for AYA’s during treatment. The KIT items will include aromatherapy products (scented products to help with nausia, anxiety or inability to sleep), relaxation CD’s, and reading materials.

There is medical research to support the introduction of Complementary Therapies during Cancer Treatment. Our hope is to increase the availability of these Therapies (such as massages and mindful meditation) considered appropriate for AYA’s during cancer treatment. We will continue to keep you posted on the Wellness Project as it moves forward.

Always know that your contributions to the Steven G AYA Cancer Research Fund go directly to finding ways to help our young cancer warriors win the battle against this horrible disease!!!

Remember
We Won’t Rest Until There is a CURE!

FIGHT! CONQUER!! CURE!!!

 

 

 

 

 

MEET STEVE G AT THE BARRE: PURE BARRE

Hello all,

Don’t forget this Saturday,

January 18th at noon or

1:15pm for the PURE BARRE –

Pure Give Class!!!

Proceeds will go towards the Steven G AYA Cancer Research Fund!

Support AYA Cancer Research, Education and Advocacy and GET INTO SHAPE!!!

Also, Steven G will be joining us at 1:00 pm to thank all of you for supporting our cause!

you can register on-line at

www.purebarre.com/oh-westlake

or

email at westlake@purebarre.com

Thanks for helping us

FIGHTCONQUERCURE

Cancer!!!

 

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Angie’s guest post at Cancer Knowledge Network

https://cancerkn.com/getting-holidays-caregivers-point-view/

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