Pittsburgh Perseverance

Three Reasons I am Glad I Attended OMG 2013 Summit

Two weeks ago, I attended the @StupidCancer sixth annual OMG 2013 Cancer Summit for Young Adults in Las Vegas.  This was the second time that I attended this conference and my takeaways are summarized below.

1) You cannot leave this conference without feeling energized about the human spirit and for the future of Young Adults facing cancer.  The group of people that I have met both years are incredible!  Some are currently battling one of the numerous cancers while others have recently completed treatments and/or surgeries and are returning to the life that they once knew.  But as all of those who have been diagnosed with any cancer can attest, your life is changed the day you are diagnosed with cancer.  The people I met at this conference both years will not let cancer define themselves but will admit that it is part of their story.  They are going to change the world for the better!

2) As a 29-year survivor of cancer after being diagnosed at 17, I believe I have and will continue to remind Young Adults that they can dream again of long-term goals.  If I and others can serve as inspiration to these inspirational people, then the world will be better.  This year, I met two other long time survivors who are also re-energized by attending this conference.  The people @StupidCancer are to be applauded for all of their work.  But as I am sure they would admit, the conference is made special by all of the 450 who attended!

3)  The information provided in the breakout sessions are incredibly important.  I attended one session that focused on the long term implications of chemotherapy and radiation treatments.  They even specifically discussed the chemo regimen that I received.  This is critical information as those of who battled so hard to beat cancer and do not want to be brought down by the treatments that helped us beat this disease!!  I can take this additional information of the  long term implications to my primary care doctor and to my doctors at the Survivorship Clinic at Children’s Hospital Pittsburgh.   

I am rejuvenated once again by the OMG summit!  I am entering the final weeks of preparation for the seventh fund raiser for a local non profit, Gilda’s Club of Western PA and the Vegas summit will help to refresh my efforts as I and my team try to reach a higher level. This year’s event should reach over 200 people.  I will blog about this event more over the next few weeks.

All the Best,

MJR2 

Vegas here I come!!  I am attending for the second time, the 6^th annual OMG Summit.  OMG was created by Stupid Cancer.  Stupid Cancer is a non-profit organization founded in 2007 by a young adult cancer survivor that empowers young adults affected by cancer through innovative programs and services.  The OMG Summit will offer 3.5 days of discussions led by speakers and the founders of Stupid Cancer.  Topics will be numerous but will center on the unique issues central for young adults.

Every year, 72,000 people between the ages of 15 and 40 are diagnosed with cancer.  In the Pittsburgh area, a simple arithmetic calculation would mean that 444 young adults are diagnosed every year.  Studies have shown that improvements in survival among young adults have dramatically lagged behind those in children and those for older adult patients, as discussed by this 2012 American Cancer Society study.  I have personally known these challenges as I have lost three friends to cancer ranging from 22 to 35 years old. 

I was diagnosed of Hodgkin’s Lymphoma in 1984 when I was 17 years old.  There weren’t any groups that focused on young adults that could help me deal with the more unique aspects of my diagnosis, my surgeries and treatments, and the emotional and social challenges brought on by the disease.  The internet has greatly enhanced the growth of groups and blogs focusing on this group that has been ignored for too long.  Huffington Post has a great site called Generation Why.  Stupid Cancer has been a leader in the growth of advocacy for the challenges facing this demographic.  Books such as Planet Cancer, have been written to aid those who days before never thought about facing a disease that dramatically changes your life and your perceptions.  I am thrilled that today, the resources for a young adult battling cancer are significant and growing, but more needs to be done!

An increasing topic in the medical community is the challenges faced by survivors.  In the study cited above, there are an estimated 13.7 million Americans with a history of cancer alive on January 1, 2012.  This number is projected to increase to 18 million by 2022.  In that ACS study, less than 700,000 are estimated to be 30+ years pasty their diagnosis.  As someone who is fast approaching this mark and has become more involved in cancer community, this number of 30+ year survivors will increase.  Survivors are living longer and fuller lives.  This is exhibited by the 5 pages that the ACS focusses on long time survivorship in that study.  There are local resources for the long term survivors such as the Survivorship Clinic at Children’s Hospital of Pittsburgh.  Magee Woman’s Health Center and The Hillman Cancer Center are also creating clinics focusing on survivors.  Long-term survivor issues is one of the OMG Summit topics.

These are the two major causes within the cancer community that I am focusing on.  The survival rates for young adults need to improve and programs and advocacy for this demographic should be improved.  The number of cancer survivors is increasing and we should have more studies to understand the long term implications of treatments and surgeries.  Everyone, but especially those that are younger need to start thinking, I am beating this for 10, 20, 30, 40, 50 years and longer!

All the Best,   

MJR2

pittperseverance:

Boston IS Wicked Strong!!

I forget the origin of the “word’ wicked but anyone who has Massachusetts relatives or knows people from that region has heard them use this word.  It is unique as is this region of the country that has experienced so much misery lately with Newtown and now the Boston Marathon bombings. As the situation unfolds, below is what I had prepared this week after the horrific news Monday afternoon.

When I heard about the bombings, one of my first thoughts was that the time of the explosions occurred when the many people who run the marathon for charitable organizations would be finishing the race.  What a terrible tragedy to impact people who likely were doing an unselfish act by raising funds for a charity.

These people who run the race and raise money typically have a family member or friend who suffered from cancer, alzheimer’s, cystic fibrosis and list goes on.  They are running and raising money to bring awareness for these causes and in hopes that these diseases will be cured or to help those who suffer from the effects of a disease or tragedy are given help or comfort.

Boston will learn to get back to its normal life and it will thrive.  Anyone who has been to Boston realizes how special of a city it is .  It is a resilient town! 

I have been to over 37 states and numerous cities in our great country.  When people ask me my favorites I always say Boston is one of my favorites and I usually add, “Springtime in Boston”.  You should do yourself a favor and visit Boston in the Spring.  The college students come out of their dorm rooms and can see the end of a long school year.  Those who work in the investment management or insurance industries take longer walks for lunch.  You can feel the life of this city in these months. 

The historical landmarks of Boston and our country are apart of the city and easily accessible.  You can visit the Old North Church, do business on Beacon Hill or walk through the Boston Common.  In the Summer, you can drive to one of our other national treasurers, Cape Cod which has some of the most quaint beach towns.  Some of my cousins were born on the Cape and we have had numerous fun and memorable family vacations to this wicked area. 

Sports is so important to its residents and fans.  They identify with their Celtics, Red Sox, Bruins and Patriots. Boston and Pittsburgh has enjoyed a good rivalry in sports, maybe not to the heights of Boston and New York, but still a rivalry.  I have been lucky to attend a game at the old Garden and for a few minutes, I just stared at the banners.  It really was incredible sight for any sports fan!

Boston will go on and thrive!  It’s great restaurants in the Back Bay such as Lucca’s will continue to be vibrant with Boston residents and visitors.  The historical landmarks will remind us of the birth of a great country and hopefully put us in touch with the ways to keep the USA great!

I am sure I will see Boston again soon. Next year’s Boston Marathon will be the largest ever. It will occur on April 21, 2014.  I will reach 30 years from my cancer diagnosis earlier that month.  Maybe I’ll celebrate at that Marathon like I celebrated graduating with my MBA in April 1994, also my 10 year survivor mark, with a trip to Boston and the Cape! 

I have to close with the words of that wonderful little boy Martin Richard who was killed in those explosions while he was, unselfishly, cheering the runners.  A picture released of Martin says, “No More Hurting People.  Peace”!

No More Hurting People!  Peace!

Boston IS Wicked Strong!!

I forget the origin of the “word’ wicked but anyone who has Massachusetts relatives or knows people from that region has heard them use this word.  It is unique as is this region of the country that has experienced so much misery lately with Newtown and now the Boston Marathon bombings. As the situation unfolds, below is what I had prepared this week after the horrific news Monday afternoon.

When I heard about the bombings, one of my first thoughts was that the time of the explosions occurred when the many people who run the marathon for charitable organizations would be finishing the race.  What a terrible tragedy to impact people who likely were doing an unselfish act by raising funds for a charity.

These people who run the race and raise money typically have a family member or friend who suffered from cancer, alzheimer’s, cystic fibrosis and list goes on.  They are running and raising money to bring awareness for these causes and in hopes that these diseases will be cured or to help those who suffer from the effects of a disease or tragedy are given help or comfort.

Boston will learn to get back to its normal life and it will thrive.  Anyone who has been to Boston realizes how special of a city it is .  It is a resilient town! 

I have been to over 37 states and numerous cities in our great country.  When people ask me my favorites I always say Boston is one of my favorites and I usually add, “Springtime in Boston”.  You should do yourself a favor and visit Boston in the Spring.  The college students come out of their dorm rooms and can see the end of a long school year.  Those who work in the investment management or insurance industries take longer walks for lunch.  You can feel the life of this city in these months. 

The historical landmarks of Boston and our country are apart of the city and easily accessible.  You can visit the Old North Church, do business on Beacon Hill or walk through the Boston Common.  In the Summer, you can drive to one of our other national treasurers, Cape Cod which has some of the most quaint beach towns.  Some of my cousins were born on the Cape and we have had numerous fun and memorable family vacations to this wicked area. 

Sports is so important to its residents and fans.  They identify with their Celtics, Red Sox, Bruins and Patriots. Boston and Pittsburgh has enjoyed a good rivalry in sports, maybe not to the heights of Boston and New York, but still a rivalry.  I have been lucky to attend a game at the old Garden and for a few minutes, I just stared at the banners.  It really was incredible sight for any sports fan!

Boston will go on and thrive!  It’s great restaurants in the Back Bay such as Lucca’s will continue to be vibrant with Boston residents and visitors.  The historical landmarks will remind us of the birth of a great country and hopefully put us in touch with the ways to keep the USA great!

I am sure I will see Boston again soon. Next year’s Boston Marathon will be the largest ever. It will occur on April 21, 2014.  I will reach 30 years from my cancer diagnosis earlier that month.  Maybe I’ll celebrate at that Marathon like I celebrated graduating with my MBA in April 1994, also my 10 year survivor mark, with a trip to Boston and the Cape! 

I have to close with the words of that wonderful little boy Martin Richard who was killed in those explosions while he was, unselfishly, cheering the runners.  A picture released of Martin says, “No More Hurting People.  Peace”!

No More Hurting People!  Peace!

Story #6                                                                                  Easter March 2013

This picture has been in my bedroom or home office since 1984.  My Uncle Tom C made it for me!  My Uncle knew what a sports fan I was.  How could you not be a sports fan growing up in Pittsburgh in the 1970s?  The Steelers dominated the NFL with a world class defense and exciting offense winning four Super Bowls!  The Lumber Company led the Pirates to annual pennant races and two championships.  In the 1970s and early 80s, Pitt vs. Penn St was one of college football’s annual classic games.  By 1984, the Penguins had drafted a young man named Mario Lemiuex who would revolutionize hockey and bring 3 Stanley Cups to the city.  We were winners!!

I needed that winning attitude after battling an undiagnosed disease for about a year and then being diagnosed with Hodgkin’s Lymphoma in early April 1984.  I spent a couple of weeks in the hospital for tests, a biopsy, and surgery to remove my spleen and my first chemotherapy treatment. 

It was around April 19 and I had been out of the hospital for about a week.  Easter weekend was approaching.  After dinner, I was in my bedroom likely listening to Myron Cope and Stan Savran when I heard a car door slam.  I looked in our driveway and saw my Aunt Peggy and her family from New Jersey.  I can still picture myself looking out that window to see their wonderful surprise visit.

We had a nice Easter weekend.  There is a picture of the cousins in our living room and even my family struggles today to pick out me.  I was likely 110 pounds wet, but I am smiling in the picture.  Family support was and is critical in all of our life challenges and my family was there to support me.  They were also there to support my parents and my siblings.  I can still picture my Mom and Aunt Peggy hugging goodbye through tears.  They were sisters who were close to each other and now experiencing the challenges of caregivers.  Their surprise visit showed that my New Jersey family was providing support.

That support was special as my Aunt Peggy and Uncle Tom were my Godparents.  Uncle Tom, or Uncle Craze as he was affectionately and appropriately called, was highly intelligent and creative. He created that painting that I still stand in front of frequently when I experience life’s challenges.  That painting is a rock just as my Uncle Tom was and still is as he is with me even though he left this earth too early a few years ago. 

It seems very appropriate to dedicate this story to my Uncle Tom.  He declined an offer to play for the Pirates and instead accepted a scholarship offer from St Peter’s College, a Jesuit college in Jersey City.  He was very proud of his Jesuit education and equally proud that one of his godsons would follow this path at another Jesuit institution (after beating cancer).  Now, we have a Pope who is a Jesuit and is celebrating his first Easter as Pope Francis. 

Thank you to my New Jersey family and to my Uncle Tom C for your past and continued support.  I miss Uncle Tom but know that you will be with us forever.  

Happy Easter,

MJR2

Tonight at 9PM EST, ESPN is broadcasting Survive and Advance, the story of the underdog 1983 North Carolina State basketball team which won the NCAA championship. They came from behind in many of their tournament games exhibiting perseverance. They were led by the coach Jim Valvano. If you have not heard of Jim Valvano and his battle with cancer, do yourself a favor and watch this ESPN re-broadcast of Jimmy Valvano’s 1993 ESPYS speech. Everyone should regularly watch this short but incredibly inspirational speech!!! You should also tune in tonight to watch Survive and Advance to see how Coach Valvano always had his fighting attitude, his strong perseverance and his leadership.

Jimmy Valvano’s fight led to the formation of The V Foundation for Cancer Research.  The V Foundation recently celebrated its 20 year anniversary and has raised over $100 million that has gone to research into all types of cancer.

Remember as I posted in a blog earlier, Don’t Give Up…Don’t Ever Give Up!!!!!!!!!!

It’s a Great Day for Hockey!! The Penguins go for their 8th straight win today versus the NY Rangers. Those wins have included 3rd period comebacks against Philadelphia, Boston (pictured above) and Toronto showing Pittsburgh Perseverance!!

St. Patrick’s Day party at the Consol today!!

Congratulations to my brother in arms Jay, on the far left in the picture, for reaching his 6 year mark in beating colon cancer!!!  Jay has shown strength, perseverance and leadership during his battle and since.  He has been a wonderful friend and a comrade in arms. 

Jay has been a leader at Gilda’s Club of Western PA and was one of the co-founders of the Faces program at Gilda’s. In the near future, look for more news from Gilda’s, Jay and I as we look to make a few changes in the Faces program that will increase awareness for Gilda’s and young adults that battle cancer.   

Looking forward to many more celebrations Jay!!

For some reason, the Christmas Cactus from my Dad’s funeral has bloomed again in February.  I think he likes what I am doing with the blog as he was another who battled cancer!!  Have a great weekend everyone!

Pittsburgh Perseverance, a cancer journey
Story #4                                                February 2013

I had been having back pains for months.  My memory cannot pinpoint the exact time it started, but it was around the spring of 1983.  I was 16 years old and a junior in high school.  At first the pain was random, but then it became regular.  The pain would appear unless I took pills every 4-5 hours.   Every day, of every week of every month for at least 10 months, I would take pills.  Every night, my Mom would wake me at 3:00AM to give me pills so that I would not awaken with a severe, throbbing pain.

We went to many doctors and I had many x-rays, scans and exams.  No one could pinpoint the exact reason.

One Friday night in late March 1984, I went to the movies with some friends.  My back pain started mid-way through the movie.  I was shifting in my seat, biting my lip… I had taken my medicine, what was happening?!? I had never told anyone outside of our family about the pain even the close friends next to me.  When you are a teenager, appearance and acceptance are so important.  With doctors’ visits unsuccessful at diagnosing a reason, you question a lot!

After the movie, Chid and Screamin wanted to meet other friends, but I wanted to go home.  I ran upstairs to take a hot shower which was another way to relieve the pain.  My parents said, “Did you take your pills?”  I screamed back, I took them!  My dad knocked on the bathroom door a few minutes later.  He came in and said, your mom and I have discussed this and we are taking you to the hospital tomorrow.  Something is wrong and they need to find out what.

That week I had more tests, scans and physical exams.  I had a biopsy of a lymph node in my neck and towards the end of the week; I had the diagnosis, stage 3 Hodgkin’s Lymphoma.  Family and friends visited often and became aware of the back pain during the last year and the cancer diagnosis.  The following week, I would have surgery to remove my spleen and start chemotherapy in the hospital.

That first week in the hospital was capped by my ten or so of my friends skipping school to pack into Shawn’s Aunt’s van to “break me out of the hospital”.  Lucky for all, I was already scheduled to be released for the weekend.  During one of the doctor or nurses visits, the “gang of brothers” went to explore the hospital.  When I was officially released, my friends had not yet returned.  They finally appeared.  As my mom, myself and 10 17 year-olds were packed in an elevator, a security guard came on.  He said into his walkie talkie, I have them in the elevator and I am escorting these kids out of the hospital.  Apparently, my friends were diverted from “my break out” to explore the morgue.  No harm, no foul…I think. 

After we arrived at my house, they took me to the school up the street for a little basketball.  I could barely make it down the court the second time.  I was leaning over and gasping for air watching my friends play basketball and thought, they were with me during the battle I had ahead.  They had my back!

All the best,

MJR2