Philadelphia Area Blood Cancer Support Groups

Local Support Groups
Below is a list of different support groups hosted by The Leukemia & Lymphoma Society: 

Blood Cancers Networking Group – Warminster/ Bucks County
Open to all who have been touched by a blood cancer. Provides supportive and educational resources. When: 2nd  Wednesday of the month in the evening. Location: Gilda’s Club.  Facilitated by a licensed social worker. Please call Marianne Wolfe at 215-441-3290 x103 or Marianne@gildasclubdelval.org

Family/Caregiver Support Groups-Warminster/Buck County
“Family and Friends Networking: Dinner and Discussion” provides a safe and comfortable place for family and friends of people with cancer to share experiences and concerns regarding their unique situation. Dinner is provided. When: 2nd  Thursday of each month and is sponsored by The Leukemia & Lymphoma Society. Location: Gilda’s Club.  Registration is required.  Facilitated by a licensed social worker. Please call Marianne Wolfe at 215-441-3290 x103 or Marianne@gildasclubdelval.org

Chronic Myelogenous Leukemia (CML) Family Support Group – Conshohocken
For patients and family members coping with CML. It is an opportunity to share experiences, exchange information and gain support. When: 2nd  Wednesday of the month at 6PM. Location: LLS’s EPA Chapter Office (group does not meet in June, July & August)

Lymphoma Support Group – Conshohocken
Provide all types of lymphoma patients, families and friends with support, information, education and networking. When: First Tuesday of the month at 6PM. Location: LLS’s EPA Chapter Office (group does not meet in June, July & August)

KID SUPPORT- Philadelphia
A 10-week program for children (ages 6-12) who have cancer or family members or friends with cancer. Design to help children cope and an opportunity to meet other children with similar experience. Also have concurrent parent group available for adults. When: Starting October 6th at 6PM-8PM. Location: The Cancer Support Community of Philadelphia.  If interested and for more information, please contact Kathleen Coyne, LCSW at 215-879-7733 or kcoyne@cancersupport-phila.org

Spanish Support Group / ¡Una Réunion!: Grupo de apoyo latino -  Philadelphia
Para pacientes con cáncer, sus familias y personas cercanas. Fecha: cada tercer el Miércoles del mes. 1:30 PM- 3:00 PM. Lugar: Temple Cancer Center. Para inscribirse para el grupo o para preguntas o asistencia para personas discapacitadas, por favor contacte a: May MacKenzie teléfono: 215-707-2575

LGBT Cancer Support Group – Philadelphia- The William Way LGBT Community Center
Provide LGBT cancer patients, families and friends in the Greater Philadelphia region with opportunities to share experiences, exchange information, gain support, information, education and networking. When: 1st  Monday of the month in the evening Location:. The William Way Center. For more  information and to register, please contact  Ilana Benyosef, LSW  610-238-0360 ext. 232 or ilana.benyosef@lls.org

**Bereavement Support Group – Bux/Mont Area **
Living with Loss -  Hosted by Gilda’s Club Delaware Valley. Any adult who has lost a loved one to an illness is welcome to call about the group. Pre-registration is required. For further information, please contact Melanie Kaplan at 215 441-3290 x114 or Melanie@gildasclubdelval.org

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Meet Four-Time Ironman World Champion Chrissie Wellington

Come join us for a fun, entertaining evening with four-time Ironman World Champion Chrissie Wellington to support the Cadence Cycling  Foundation.  She’ll share her love of the sport and may even give you a secret training  tip!  This will be an exclusive gathering (capped at 100 people) so you’ll have a great opportunity to interact with triathlon’s hottest star.  One lucky attendee will receive a $100 Cadence gift card for some last minute holiday shopping!  This event will be held on Wednesday, December 14 from 6:30 to 8:30 p.m. at Cadence Cycling & Multisport Center, 4323 Main Street Philadelphia, PA 19127-1516.    

Chrissie is the current Ironman Triathlon World Champion and a multiple world record holder in Ironman distance triathlon, smashing numerous time records during her career.  She is also a true “citizen of the world” supporting numerous causes that are important to her in all corners of the globe.   We’re excited that Chrissie can join us to support a cause that is important to us, the Cadence Cycling Foundation. 

CCF’s mission is to use cycling as a mechanism to connect with local, underserved youth ages 9 – 18, and help them improve their health and well-being, improve school performance, and develop positive life skills.  CCF accomplishes this by carrying out afterschool and summer programming based on a Positive Youth Development Model, offering programs through neighborhood partnerships, and building
collaborations to provide participants with access to support services.   CCF’s programs have expanded to include triathlon training/racing and we’re excited that members of the CCF Triathlon team will be in attendance at this very special event.  To learn more about the Cadence Cycling Foundation, click here.  

Tickets for this event are $25 per person, with 100% of the proceeds going to CCF.  Don’t delay, as this special opportunity is limited to 100 people.  Click here to purchase your tickets now.  You will not receive a physical ticket, but your name will be on a list at the door.  If you can’t attend the event, we hope you’ll consider a year end contribution to Cadence Cycling Foundation by clicking here.

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Giving Thanks

This is the time of year that I , like many others, take a few inventories and remind myself of all of the things that matter, and that I am grateful for. The important thing for me to remember is that things always have a way of working their way out. The “downs” seem to always rebound and at the end of the day, I am still ahead of the game.

While I get frustrated and angry at some of the injustices in the world, I have to keep my eyes on the big target and  I’ll borrow a line from the Semisonic song Closing Time and remind us all that “every new beginning comes from some other beginning’s end.” 

So let’s take a few minutes and appreciate all that we have.

Be thankful for your roof that leaks because at least you have one over your head.

Be thankful for the boss you may dislike for you must be employed.

Be thankful for the fact that even though you finished dead last in a recent race, you had the courage to start.

Be thankful that while disease sucks, we live in a time of incredible technological and medical advancement

Be thankful for your family because you are blessed to have one.

Be thankful for how fortunate you are to be able to complain to a food server about your meal.

Be thankful for your broken heart, for you know how to love, and will love again.

Be thankful for the guy who cuts you off in traffic since you could be walking.

Be thankful for all of the snow you will shovel… from your own driveway and walk…. In front of your own home.

Be thankful that you are blessed with the freedom of choice in this world…

Exercise that choice by choosing to be thankful.

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2011 ING NYC Marathon

stand upWell here I am the day after the 2011 NYC marathon and I decided that it’s time to take a break from feeding my face to put some of my thoughts down about the weekend. As many of you know, I once again raced with Ethan Zohn and his charity Grassroot Soccer, raising money for HIV/AIDS education and awareness in Africa. This was the third year that GRS has done the marathon, and my third year of participation.

“Participate” is exactly what I did this year. I went into the race very undertrained, with only one “long” run under my belt. The problem is that “long” training run was only 14 miles. So as expected, and as planned, the second half of my race became even more social with lots of walking breaks. And I swear, running a marathon that way can be so rewarding because you don’t miss a thing. You don’t miss a single sight, smell, or sound along the way. I think I high-fived two million people along the side of the road yesterday.

Once again we stayed with my wife’s sister and her family. Although they live about 25 miles north of the race festivities, it’s a wonderful opportunity to see family while being a part of such a great race. I wouldn’t exchange the great company, great home cooking, and the comforts of home and family for the convenience of staying in NYC. We arrived at their home in West Harrison late Friday and settled in for the weekend ahead. And I do have to say that my wife, MG, was and is a complete saint for shuttling me back and forth all weekend to make sure all of my connections were made. I thanked her a dozen times if not more over the weekend. Support like that is just incredible.

steve and mgSaturday mid-day we cruised into the city to take care of my registration details and the expo (and spent a few dollars on some things I NEEDED). From there it was off to the Remi restaurant to meet Ethan and the crew for our GRS marathon team pre race dinner and gathering.  The dinner really set the tempo for what would be a great weekend.  There are a number of athletes who have done this race before and we have all developed a nice friendship so it was good to see everyone and get caught up. It was great to see guys like Paul, Sully, Craig, Angela, Becky, and many others as well as the many new comers to the group. This is a GOOD group of human beings and I am honored to call them friends.

We added about 20 more runners this year over last, including Ironman 70.3 World Champion triathlete Aaron Scheidies from Seattle. Aaron is a visually impaired athlete who I also knew from the triathlon world. I might add, he is also one of the nicest guys I have ever met and is a complete character who can eat anyone I know under the table.

steve becky paulAfter a great dinner and many laughs we started to wrap things up and head our separate ways to get things in order for race morning.  But not before I was tapped on the shoulder by the film crew of Everyday Health and asked to do a short interview about the race, and my relationship with Ethan. Hopefully that comes out well, we shall see. Shortly after that we headed back to get organized.

This weekend we changed the clocks BACK an hour so I was a little nervous about my wake up, but all went very smoothly and we left to head back into the city at about 4:45 AM on Sunday morning. We all gathered at the race’s host hotel and took care of some last minute preparation before boarding the team bus to the start.  Ethan also reached into his bag and said “I have something special for you” as he handed me a Stand Up 2 Cancer / SURVIVOR bandana.  That was much appreciated and actually turned out to be a great distraction during the race because I played with it and kept moving it around between my head…. My neck…. My wrist …… it kept my mind off of running 26.2 miles.

While we waited, I had a nice conversation with a guy in our group named Adam. This was Adam’s first marathon and he was pretty nervous. We had a nice chat and I assured him that he had already put in the hard work and there was no doubt he would have a good day. I reminded him to start off slow and to also savor the day and drink it all in. I also told him to enjoy the crowd, engage the kids when possible and high-five anyone who sticks their hand in the road. More on Adam later.

busWe boarded the bus and made our way to the start. At dinner I had recommended to Ethan that we write the letters F C on the soles of our running shoes. “FC” has taken on a couple of translations over the years with this group. “Fight Cancer” is one of them. The other, is not quite so G rated. On the bus ride, we broke out the Sharpies and marked up the soles of our shoes. Ethan took my idea one step further and suggested we stomp through dog sh*t to REALLY drive the point home to cancer.  Not sure how he made out with that one! Luckily I didn’t encounter any of that during the race.

Unfortunately our arrival at the start was a little rushed because the bus hit a lot of traffic delays so we actually had to exit early and walk the rest of the way to the start. Once that happened, people scattered and some of the people that I had hoped to at least start out running with all ended up in different places. No worries. I made my way to my designated start coral and waited for our start.

At 10:10 the cannon fired to signal the start of our wave. The start of the NYC marathon is actually about a one mile climb up the Verrazano Narrows Bridge. It feels steep and it’s a little chilly between the shade and the breeze from the river. But before you know it, you hit the crest and begin the descent back down the other side.

As I mentioned earlier, I was a little under prepared for this race. But I was healthy and injury free so I knew I could fake or muscle my way through it without any problems as long as I didn’t set the bar too high.  I ran the first half at pretty consistent 10 minute miles. At around 14 miles, the walking breaks kicked in and became longer in duration as the race went on. Other than feeling like I had steak knives sticking out of my quads, I felt OK. Nutritionally, I felt great. Things went relatively according to plan.

I also did get the chance to connect with a few GRS runners on the road, including Sully, and Angela. And remember Adam, who I gave advice to in the hotel? He passed me somewhere around mile 15 and gave me a thumbs up and a smile and asked how I felt. And THEN, Adam weaved his way over to the curbside so he could high five a row of kids. He listened to what I had told him and during that simple little exchange I had an emotional moment.

There were other moments as well, especially as I reflected on the fact my wife and I are celebrating 25 years of marriage. She has been such a catalyst in allowing me to achieve and realize so much in this life.

Of course, runners cannot turn onto First Avenue without being overcome with emotions. I feel like the heart of the entire race sits right there waiting for you to come off of the quiet of the bridge and erupt into a hero’s welcome.

In keeping with a little tradition that I started, I did have a couple of Philly pride moments. Most notably came along First Ave at about 79th. A group of guys were tossing a football on the sidewalk, tossing it into the crowd of runners anytime a runner gave them a nod and a “hey, I’m open” sign. So of course I did, and the guy hit me in stride with a perfect strike. But before I tossed it back, I broke into an “E-A-G-L-E-S” cheer and fired it back to them. I thought the whole corner was going to come after me. Good thing for cops and barricades. I did the same thing to a spectator wearing a Giants Lawrence Taylor jersey. That guy just yelled back and said “I’ll remember your face”. Too funny.

exitSo eventually, after over five hours of five borough therapy, I made my way into Central Park and across the finish line of marathon number…. perhaps 20. I am not 100% sure. I met up with MG who SOMEHOW had secured street parking just a few blocks from the finish. (a saint, I’m telling you). From there we actually went back north for a great dinner, shower, and to pack up and say goodbye to our family.

And so ends another chapter of the ING NYC Marathon.

THANK YOU THANK YOU THANK YOU to everyone who played a part in this awesome adventure. From my wife and family, to my warrior cancer brother Ethan Zohn and his GRS team, to each and every spectator and volunteer along the way. You all rock and I will see you next year.

Side note – please don’t forget my committment to donate all proceeds from my book “In Search of Center” to two of Ethan’s favorite charities. Details can be found HERE.

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Something for Ethan

centerOK here is the deal. In light of Ethan Zohn’s recent relapse with Hodgkin’s Lymphoma, I have decided to do the following. Earlier this year I published my book entitled “In Search of Center” in which Ethan wrote the foreword and is mentioned a few times throughout the book. The book is described as:  “The author is a lifelong endurance sports enthusiast, triathlon coach, husband, father, and leukemia survivor. What lies ahead are a few of his thoughts on life, on health, on sport and on some of the amazing people who have reached and touched him along the way. The title “In Search of Center” stems from an email from a friend begging the question “How can I find my center if I don’t visit my edges?” Those words have stuck with Brown and they remind him that perhaps writing also gives him an opportunity to both visit the edges, and find his own center. Foreword written by Ethan Zohn.”

So here is my offer and our chance to all do something from the comfort of wherever you are. Effective today 100% of the proceeds received from both the paperback and download versions of this book will be split evenly between two charities which are meaningful to Ethan and I.

50% will go to The Leukemia & Lymphoma Society and 50% will go to Ethan’s charity Grassroot Soccer. Please pass this around to your friends.

Please click below to make a difference:

DOWNLOAD

PAPERBACK

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Relapse – A Brother in Battle

So if you haven’t heard the news, my buddy Ethan Zohn’s cancer is back.  I found out earlier this week just before the news broke to the rest of the world. It’s maddening… and frustrating. I have faith that Ethan will once again kick the crud out of his Hodgkins Lymphoma. And I keep finding myself telling the cancer that it has picked the wrong person to screw with. But there is something about that statement that almost says there are “right” people to screw with, so I quickly retract. But the bottom line is, he will kick its azz but not before he faces some tough treatment and another stem cell transplant. It will be another rough holiday season for him.

The irony in all of it is he has been training for this weekend’s NYC marathon where I will be joining him and racing for his charity; Grassroot Soccer. Ethan will also be guiding a blind athlete that we have running with our team. Check that. Not just any “blind athlete”, but world class and world champion  triathlete Aaron Scheidies. 

All systems were GO. So of course in true warrior fashion, he will still race. Perhaps not as well as he had hoped, but he’ll get it done. Someone commented that this news is “sad”. I don’t feel “sad” right now. I feel really pissed off and offended if that makes sense. But not “sad”.

In talking to Ethan yesterday, I offered the following:

Call me crazy but I feel A LOT of really positive energy around the race and your situation. Think about the dynamic…. Leading a blind athlete…. Going though treatment …. Running with another survivor … (yours truly)….. raising money for GRS and saving lives…. leading by example ….There is just so much karma and POWER in all of this….

The Hodgkins Lymphoma is just showing its ignorance by rearing its ugly head. It’s going to get chewed up.

I’ll post some updates once we get to NY on Friday. I will see Ethan and our crew for dinner Saturday night and we will all ride a team bus to the start and have our own little colony to hang out and enjoy each other’s company prior to the start.

My goal is to just hang out with Ethan during the race and make it a MISSION against cancer.

More to come.

Below is an email from Ethan that went out to our marathon team just today:

To All My Favorite GRS Marathoners,

The past 2 years as a cancer survivor have been super exciting – a trip to South Africa for the World Cup, a journey around the world on The Amazing Race, a new TV series with Jenna called Everyday Health, and running of the NYC Marathon for Grassroot Soccer. In fact, working with GRS has always been the MOST rewarding part my life.

Having said that, I have some not-so-exciting news. On September 14th, after a routine visit to the oncologist, they found evidence of canzer. I relapsed. My f’ing canzer is back.

I have Hodgkins Lymphoma that is localized to the chest and lung area. The docs are very hopeful and are treating this with curable intent.

I’m on a super new drug called SGN-35 which was passed by the FDA on September 24,2011. SGN-35 is considered a “Smart Therapy” because it will only target the cancerous cells in my body.  Therefore, the side effects are not as bad.  Most importantly, I will not lose my jew-fro again, and that’s really my biggest concern…not this stupid cancer stuff. HA!! My first treatment was on October 18th and I’m feeling ok.

Here’s the yucky part. Once my cancer is in remission, I will have to endure another stem cell transplant. Hola Mr. Bubble Boy!!!!  This time it will be an Allogenic Stem Cell Transplant (versus and Autologus stem cell), which means I will use another human’s stems cells and I WILL lose my hair. I will be in the “bubble” for about 40-50 days with a hard-core intensive 120-day recovery period once I’m released.

So that’s the deal….

I think the general perception of cancer is that there are winners and losers. You either beat cancer and win, or lose to cancer and die. There is no in between. The reality of my situation is that I did everything in my power to beat cancer and I did. But it came back. And that’s ok too. I’m not a failure. There are millions of people out there living with cancer and living with the reality that this horrible disease may come back.

This morning, People Magazine made this announcement, but I wanted to send a personal note to everyone. I’m going public because I hope the details of my life have the power to educate and heal others. Or perhaps enable them to connect with me in a way that helps make their journey more manageable. I’m right there with them…living and fighting each day of my life bringing awareness to this global pandemic. It’s who I am, It’s what I represent. I stand up for what I believe in.

I’m still running the NYC marathon for GRS even though I have cancer and have had my first chemo treatment.  It’s that important to me. The docs think I’m crazy, but I want to send a message of hope and let people know that cancer will not slow me down. And it doesn’t have to slow anyone else down either. I will to charge forward and continue to do the things I love, like work with GRS.

I know what it’s like to be on the receiving end of a horrible diagnosis and I want to do everything in my power to make sure no one else will have to go through the same crap that I’m going through…whatever that may be, cancer or HIV.

I can’t wait to see everyone this weekend and have some fun. It’s an honor to be part of something so much bigger than myself.

Who’s ready to outrun cancer and stomp out AIDS?  That’s what I thought…me too!

See you at the finish line,

Ethan

 

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NYC Marathon Tip # 13

I have been receiving a number of marathon tips from the NYC Marathon folks with the race now just days away. I thought I would share a couple between now and race day. Here is your dose for today.

PREPARE FOR THE START

Planning ahead can make or break race morning. Pack your bag on Saturday night and making sure you have everything you need in advance. You’ll be much happier if you don’t have to scramble to find something in the morning

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A Certain Way

brynnMy wife and I had two daughters while we were still in our twenties. Thinking  back, I knew very little about life or the world when I was still in my twenties. I knew enough to realize that we were raising two beautiful and amazing kids but knew very little about the world around me and in reality, I still had many things to figure out about me. In many ways I feel like I just got lucky. I tried to live my life by example but there are always things you’ve said or done that you wish you could take back. At the end of the day I rest feeling pretty good about where I am and how I got here.

And it’s funny how things happen. Yes, I suppose there were a couple of “ah ha” or defining moments in my life which sculpted who I was to become. There were significant events such as death of loved ones, the realization of dreams, the diagnosis of a disease…But  much of that sculpting process just sort of happened as part of an ongoing evolution. You don’t realize how much you grow and change when you look at your life on a micro level. But when you look back to the beginning, and compare that to the present, you realize how far you’ve come and how many people have impacted you.

Our  older daughter has a two year old daughter. So, yes, that makes us grandparents. I’d like to think that we are a new generation of grandparents although as I get older, I see more and more of my father in me in both physical looks, and in my actions. Still, we are a little younger, and a hell of a lot more active than grandparents of previous generations. I have heard people say how different it is to care for and love a grandchild compared to how you raised and continue to love your children. I have heard that, but now I understand exactly what that means.

I have an even greater protective and paternal instinct with my granddaughter than I did when my kids were that age.  I guess over time, we are able to hone that skill as we learn more about life and the people in it. (And ourselves). We have a greater and deeper sense of awareness. But with that comes a heightened sense of appreciation. I guess in time, we witness more great and evil. We live more life. I look at Brynn, and my heart and soul warm another 30 degrees. To put it simply, Brynn melts me. I watch her play and want to protect her from everything. I want the world that she knows to be a peaceful and kind place free of violence  and disease. I want her to feel safe in her world and want her to grow up knowing nothing but love and support. 

She makes me want to sit and play.. and color … and build blocks…. and watch the same movies over and over again…. And I miss her when she’s not there.

She makes me want to care about her future but savor every minute of the here and now. Because a great here and now will only make a better tomorrow.

She makes me want to be better.

I am thankful for her.

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Do It For You

Every once in a while I hear from a Team in Training prospect who may be a little fearful or apprehensive about signing up  for the program for any number of reasons. While just about everyone understands the benefit to others and how they can save and change lives, some people are just nervous about taking on the challenge.

I actually love hearing from those people. And I love signing them up and watching them transform themselves into triathletes and crossing the finish line a new person. I sent the below email to one such prospect. My comments are pretty universal so I thought I would share with everyone.

Hi,

I am always happy to talk about the sport, and the program. And take an even greater and vested interest in those that might be a little apprehensive about some aspect of the event. I understand those feelings. I also know that we take pride in working with people to overcome those feelings. I have seen so many people come though the program with slight fears or concerns. I can’t tell you how good it feels for me to watch them grow from week to week and gain a little more confidence and then share with them that feeling of crossing the finish line.

Being a little nervous is an even BIGGER reason to sign up. The benefits that you will derive through this journey are far greater than the sport of triathlon. You will develop a sense of self and confidence that will trickle down to all aspects of your life. I have found that many too many people live their lives in a relatively small comfort zone. And they live their lives and all is “just fine”. BUT sometimes we need more. Sometimes, “just fine” isn’t enough. Sometimes we need to push the edges of that comfort zone and when we do, we discover a completely different world, and a side of ourselves that we never knew existed.

This  triathlon program has three dedicated coaches, all of whom feel exactly the way I do. We take pride in making you into a triathlete.

Don’t do this for any other reason, besides wanting to grow as a person.

Feel free to ask me anything you like!

Hope to see you  at Kick Off

Steve

www.teamintraining.org

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Myrtle Beach Marathon Added to 2012 Races

So in an act of sheer whimsicalia (yep, made that up), MG and I decided last night to register for the Myrtle Beach Marathon. A friend of her’s had signed up and it looked interesting so …. we’re in. I’ve never run a marathon that early in the year but I am very much looking forward to it and it will be relatively easy to maintain a good base coming off of NYC marathon and the Philly half marathon in November. Details can be found HERE.

2012 is starting to come into focus a little more clearly. I may also add the Ocean Drive marathon in March since I will already be in 26.2 mile shape. The spring will bring a number of sprint triathlons. Then of course EagleMan IronMan 70.3 in June. Followed by a few charity/training bike rides to support LIVESTRONG and the American Cancer Society in July and August. Then I will be back in Cambridge again for ChesapeakeMan ultra distance triathlon in September. Before I know it, I am back where I started with NYC again next year.

Add to that my usual support and “working” races such as Avalon Islandman, Philadelphia Insurance Triathlon, SheROX, and it should be another full and rewarding year. Much more to follow! Stay tuned.

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"Be the change you wish to see in the world " - Gandhi
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